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Patient participation and empowerment

The involvement of expertsby experience in hospitals EVA MARIE CASTRO

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FACULTEIT SOCIALE WETENSCHAPPEN

Eva Marie CASTRO

Proefschrift aangeboden tot het verkrijgen van degraad van Doctor in de Sociale Wetenschappen

Promotor: Prof. Dr. Tine Van RegenmortelCopromotores: Prof. Dr. Kris Vanhaecht en Prof. Dr. Walter Sermeus

Onderzoekseenheden: Centrum voor Sociologisch Onderzoek,Onderzoeksgroep Sociaal en Economisch Beleid en Maatschappelijke Integratie [Hiva]en Leuvens Instituut voor Gezondheidszorgbeleid

2018

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Samenstelling van de examencommissie:

Prof. Dr. Trui Steen (voorzitter)Prof. Dr. Tine Van Regenmortel (promotor)Prof. Dr. Kris Vanhaecht [Leuvens Instituut voor Gezondheidszorgbeleid, KU Leuven] (copromotor)Prof. Dr. Walter Sermeus [Leuvens Instituut voor Gezondheidszorgbeleid, KU Leuven] (copromotor)Prof. Dr. Ine Van Hoyweghen [KU Leuven]Prof. Dr. Ann Van Hecke [Universiteit Gent]Prof. Dr. Tineke Abma [Vrije Universiteit Amsterdam, Nederland]Prof. Dr. Jaap Van Weeghel [Tilburg University, Nederland]

Eva Marie CASTRO

Proefschrift aangeboden tot het verkrijgen van degraad van Doctor in de Sociale Wetenschappen

Onderzoekseenheden: Centrum voor Sociologisch Onderzoek,Onderzoeksgroep Sociaal en Economisch Beleid en Maatschappelijke Integratie [Hiva]

en Leuvens Instituut voor Gezondheidszorgbeleid

Nr.368

2018

Patient participation and empowermentThe involvement of experts by experience in hospitals

FACULTEIT SOCIALE WETENSCHAPPEN

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De verantwoordelijkheid voor de ingenomen standpunten berust alleen bij de auteur.Gepubliceerd door:Faculteit Sociale Wetenschappen - Onderzoekseenheden: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, Parkstraat 45 bus 3601 - 3000 Leuven, België / Onderzoeksgroep Sociaal en Economisch Beleid en Maatschappelijke Integratie [Hiva], KU Leuven, Parkstraat 47 bus 5300 – 3000 Leuven, België

2018 by the author.

Niets uit deze uitgave mag worden verveelvoudigd zonder voorafgaande schriftelijke toestemming van de auteur / No part of this book may be reproduced in any form without permission in writing from the author.

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List of Abbreviations ................................................................... iiList of Figures ............................................................................. iiiList of Tables ............................................................................... iv

CHAPTER 1 ................................................................ 13

INTRODUCTION

CHAPTER 2 .................................................................. 55

METHODOLOGY

CHAPTER 3 .................................................................. 69

PATIENT EMPOWERMENT, PATIENT PARTICIPATION AND PATIENT-CENTREDNESS IN HOSPITAL CARE: A CONCEPT ANALYSIS BASED ON A LITERATURE REVIEW

CHAPTER 4 ................................................................ 123

PATIENTS’ EXPERIENTIAL KNOWLEDGE AND EXPERTISE IN HEALTH CARE: A HYBRID CONCEPT ANALYSIS

CHAPTER 5 ................................................................ 156

PARTICIPATION AND HEALTH CARE: A SURVEY INVESTIGATING THE CURRENT AND DESIRED LEVELS OF COLLABORATION BETWEEN PATIENT ORGANIZATIONS AND HOSPITALS

Table of contents

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45

CHAPTER 6 ................................................................ 177

CO-DESIGN FOR IMPLEMENTING PATIENT PARTICIPATION IN HOSPITAL SERVICES: A DISCUSSION PAPER

CHAPTER 7 ................................................................ 190

A FRAMEWORK FOR THE INVOLVEMENT OF EXPERTS BY EXPERIENCE IN THE DELIVERY AND EVALUATION OF HOSPITAL SERVICES: A QUALITATIVE STUDY

CHAPTER 8 ................................................................ 221

EFFECTS OF AN EXPERTS BY EXPERIENCE INTERVENTION ON THE CONGRUENCE OF NURSES’ AND PATIENTS’ PERCEPTIONS OF PATIENT-CENTRED CARE: A PRE-TEST AND POST-TEST STUDY

CHAPTER 9 ............................................................... 236

DISCUSSION AND RECOMMENDATIONS

CHAPTER 10 ............................................................. 267

ENGLISH SUMMARY

CHAPTER 11 ............................................................. 270

NEDERLANDSTALIGE SAMENVATTING

CHAPTER 12 ............................................................. 273

DANKWOORD

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BMJ British Medical Journal

CFA Confirmatory Factor Analysis

CFi Comparative Fit Index

CS-PAM Clinician Support for Patient Activation Measure

EBCD Experience-Based Co-Design

ICS Individualized Care Scale

ICS-Nurse Individualized Care Scale for nurses

ICS-Patient Individualized Care Scale for patients

IOM Institute Of Medicine

JCI Joint Commission International

MGFA Multiple Group Confirmatory Factor Analysis

MRC Medical Research Council

NCD noncommunicable diseases

NIAZ Nederlands Instituut voor Accreditatie in de Zorg

NHS National Health Service

PaCt – HCW The Patient Participation Culture Tool for healthcare workers

PAM13 short version of the Patient Activation Measurement with 13 items

PO patient organizations

TLI Tucker-Lewis Index

RMSEA Root Mean Square Error of Approximation

SD Standard Deviation

WHO World Health Organization

List of Abbreviations

List of Figures

Figure 1: Process model from ‘experience’ to ‘experiential expertise’ ..............................................

Figure 2: The Medical Research Council framework for developing complex interventions in health

care ..............................................................................................................................................

Figure 3: Overview of research project ..................................................................................................

Figure 4: Experience-Based Co-Design trajectory ................................................................................

Figure 5: The search process and inclusion of papers ........................................................................

Figure 6: Method concept analysis ........................................................................................................

Figure 7: Overview of antecedents, attributes, consequences and empirical referents of patient

empowerment ..........................................................................................................................

Figure 8: Overview of antecedents, attributes, consequences and empirical referents of patient

participation .............................................................................................................................

Figure 9: Overview of antecedents, attributes, consequences and empirical referents of pa

tient-centeredness. ................................................................................................................

Figure 10: Process model for concepts of patient empowerment, patient participation and

patient-centeredness in health care. ...................................................................................

Figure 11: An overview of the search strategy ..................................................................................

Figure 12: Overview of antecedents, attributes and consequences .............................................

Figure 13: Overview of drivers and effects of involving experts by experience ...........................

Figure 14: Process model for concepts of experiential expertise, patient empowerment, patient

participation and patient-centeredness in health care: ..................................................

Figure 15: Framework for the involvement of experts by experience in hospital services ........

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1Introduction Chapter

List of Tables

Table 1: Outline of the dissertation. ......................................................................................................

Table 2: Overview of the number of respondents per research method ...........................................

Table 3: Number of participants of the group and individual interviews ..........................................

Table 4: Patient empowerment: empirical referents and their associated measuring scale .......

Table 5: Patient participation: empirical referents and their associated measuring scale. .........

Table 6: Patient-centeredness: empirical referents and their associated measuring scale. .......

Table 7: Division and sub groups of survey respondents (n=111). .................................................

Table 8: Frequency distributions of the dimension ‘participation level’ .........................................

Table 9: Frequency distributions of the dimension ‘participation method’ ....................................

Table 10: Frequency distributions of the dimension ‘goals of participation’ ................................

Table 11: Frequency distributions of the dimension ‘preconditions’ .............................................

Table 12: Frequency distributions of the dimension ‘required competencies’ .............................

Table 13: Number of participants of the group and individual interviews. ....................................

Table 14: Participants’ demographic variables .................................................................................

Tabel 15: Sample characteristics .......................................................................................................

Tabel 16: Single-group and multiple group confirmatory factor analysis evaluating ICS

dimensionality across nurses and patients ......................................................................

Tabel 17: Nurses’ and patients assessments’ on individualised care at scale and subscale levels

before and after the intervention .......................................................................................

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Today’s healthcare system would benefit from the involvement of experts by experience, which are patients with specific competencies, in order to support patients and health care professionals in a variety of ways. When studying the involvement of experts by experience as a type of patient participation in hospitals, it is important to understand the broader context in which it occurs. This introduction starts with a description of four macro-sociological trends which are relevant to this thesis. Next, the changing hospital context is discussed. This is followed by a description of the historical health care context and different perspectives on health care, illness and disease. Then, the conceptual context of this thesis is clarified. The focus is on empowerment, participation and expertise by experience. Finally, a state of the art is provided regarding the involvement of experts by experience in the mental health care and the social domain (poverty and social exclusion) as well as an overview of lessons learned. This introductory chapter concludes with a description of the research aims, the research questions and an outline of the thesis.

1.1 Macro-sociological trends

Current western society can be characterized by a number of evolutions. This section discusses four of these social developments with an impact on health care: a shift from acute to more chronic conditions, a shift from institutionalized towards community-based care, a shift from a passive towards an active attitude regarding health and a shift from paternalistic towards more collaborative models.

The first trend entails a shift from acute conditions to more non-communicable diseases (NCDs), also known as chronic diseases or long-term conditions, which is the result of a changing demography and disease patterns (World Health Organization, 2011). Since the mid-nineteenth century, infectious diseases have become a less important cause of death. Life expectancy has improved linearly, accompanied by a decrease in the number of births (Fitzpatrick & Speed, 2018). It is, for example, estimated that 31.5% of the Belgian population in 2050 will be aged 60 or older, compared to 21.8% in 2000 (Hermans & Desair, 2009). In the meantime, there has been an increasing prevalence of NCDs and multimorbidity in industrial countries (World Health Organization, 2011). Amongst others, innovative diagnostic instruments and techniques have improved early recognition, while effective treatments have increased people’s life span (Christensen, Bohmer, & Kenagy, 2000). However, people with NCDs do have poorer health outcomes and quality of life. According

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to the World Health Organization (WHO), more than 36 million people die annually from NCDs, which is equivalent to 63% of global deaths. A quarter (27.2%) of the adult Belgian population reports a NCD (Scientific Institute of Public Health, 2008). To address the emerging challenges associated with NCDs, a balance should be pursued between biotechnical rationales and patients’ circumstances, priorities and preferences (Barnett, Mercer, Norbury, Watt, Wyke, & Guthrie, 2012; Green, 2004). Better management of NCDs is also promoted by the WHO (2011). In their global action plan for the prevention and control of NCDs, they suggest empowerment of patients and communities as one of nine overarching principles.

A second trend is the shift from institutionalized care towards community-based care (Barnett, et al., 2012). This is driven by the increase of NCDs and citizens and patients1 striving for emancipation and autonomy, as well as policies intended to reduce healthcare costs. This shift is also facilitated by technological innovations (Lupton, 2018). People with diabetes, for example, can monitor their blood glucose level themselves, which allows them to determine their treatment without needing to consult a doctor as they used to before. The shift towards more community-based care is also reflected by the reduced number of hospital beds and the increasing emphasis on ambulant and informal care (e.g. care by family, neighbors, self-help groups) (Broese Van Groenou & De Boer, 2016). However, critical voices have also warned for potentially negative consequences. The redistribution of care responsibilities, with more of them being transferred to citizens, patients and their social environment, might put too much pressure on social capital (e.g. social support of informal networks). Braes (2018) suggests being careful not to shift policy expectations and responsibilities onto citizens, because reduction of institutional care cannot merely be a cost-cutting measure (Braes, 2018). In the same vein, experiences from the Netherlands highlight the risks of preventing a more inclusive society (Steyaert, 2014; Trappenburg, 2015). Patients with less severe care needs, for example, no longer have access to care homes. Instead, they are expected to solely rely on their environment. Increasing the criteria for receiving care makes health care less accessible and thus affects the healthcare quality in a negative way (Steyaert, 2014).

A third trend is the shift from a passive to an active attitude towards health,

1 The term ‘patient’ is used to refer to the person receiving health care services. It does not reflect the nature

of the condition, nor the researchers’ view on people with NCDs, but is used solely for reader-friendliness.

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which is facilitated by a higher awareness of the effects of lifestyles on health and a desire to be in control of one’s own care (Stevenson, 2018). Currently, citizens are concerned with preventing, detecting, and treating their own health problems (Cockerham, 2010). This is something universal which people have been doing for centuries, but technological innovations have boosted this phenomenon. The emergence of the Internet and a wide range of (mobile) technologies such as smartphones, tablet computers and their apps have contributed to citizens’ education and access to information (Lupton, 2018). This digitalization is an important factor in mobilizing knowledge from experts to lay persons and allows people to self-care. In several countries (e.g. USA, UK) telemedicine has become a substantial part of health care delivery. Self-care technologies (e.g. wearable devices) allow patients to monitor their health themselves. However, Lupton (2013) points out that such self-care technologies promote the ideal of an empowered patient who actively seeks information and takes responsibility for their own health (Lupton, 2013). The risks inherent to such ideals are widely debated, mainly because not every citizen or patient is able and willing to take up such responsibilities.

A fourth trend is characterized by the shift from paternalistic towards more collaborative models in several domains. Participation by citizens arises because people themselves want to take action to develop services which they value positively instead of what ‘experts’ value as good. These collective actions are called ‘commons’ and De Moor (2013) defines them as “citizens acting collectively, on their own initiative, as a group and with common goods and services aiming for certain benefits” (De Moor, 2013). They challenge institutions and governments, demand a different type of dialogue and force social and organizational reflection. In the same vein, citizen science, which is about lay people and volunteers co-producing scientific projects, is opening up science practices to the broader public (Van Hoyweghen & Larmuseau, 2017). Another example is how in 2014 the well-known and high-quality British Medical Journal (BMJ) introduced its ‘patient partnership strategy’, aiming to make patient partnerships integral to the journal’s mission and vision. In the field of health care delivery, participation of patients is high on the agenda too. Patients, their families and other caregivers are increasingly invited to participate in health care (Ziebland, Coulter, Calabrese, & Locock, 2013). On the one hand, they can participate in their own care, while on the other hand, they are increasingly asked to offer their insider’s perspective to improve the quality of health care (Tritter, 2009). These type of initiatives are all associated with citizens and patients striving for more control, autonomy and influence.

In conclusion, a changing demography and the emancipation of citizens has challenged the (power) relations between governments, institutions

and citizens. Technological innovations have facilitated the shifts described above, helping to accomplish specific objectives such as self-care and community-based care. The potential risk is that these trends are accompanied by a shift of responsibilities from governments to individual patients (Geldof, 2015). To avoid negative consequences in health care, technological evolutions must therefore be complemented by person-centred approaches that seek to maximize quality of life (Barnett et al., 2012).

1.2 Hospital care in evolution

The trends described in the previous paragraphs have a number of consequences for hospital care. In the following paragraphs, the consequences relevant to this thesis are highlighted: demand-driven care, quality of hospital care and integrated care.

Since the introduction of evidence-based medicine in 2000 (further elaborated in paragraph 1.3.2), health care professionals are increasingly encouraged to conform their practice to scientific guidelines and the needs of patients (Sackett, Straus, Richardson, Rosenberg, & Haynes, 2000). This innovation has led to a shift from supply-driven towards demand-driven health care (Sermeus & Vleugels, 2000). Drawing on the work of Conrad (1987) and Scambler (2012), people with NCDs display four common issues: biomedical concerns, uncertain and unpredictable futures, assaults on self-image and self-esteem, and impact on social relations. In response to all these needs, comprehensive care from a biopsychosocial perspective is important. As such, health care providers are expected to spend more time informing and educating their patients (Sermeus & Vleugels, 2000). In the meantime, patients have also become more emancipated nowadays and produce information and knowledge themselves, mainly out of dissatisfaction with current health care services. In this regard, first-hand experiences from people who have been in a similar situation are considered to be very helpful to enable patients to adapt to their new circumstances, especially for newly diagnosed patients (Herxheimer et al., 2000). These experiences can be shared in self-help groups, but also through digital technologies (Hwang & Christensen, 2008). Since 2000, several databases with individual patient experiences have been established. Websites such as Healthtalkonline.org (Herxheimer et al., 2000) and Reset.be feature clips of people talking about their experiences of living with certain health conditions in order to inspire patients, to raise awareness among family and friends, and even to educate health care professionals.

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Since the publication of two groundbreaking reports (To Err is Human (1999) and Crossing the Quality Chasm (2001)) by the influential American Institute of Medicine (IOM)2 (Institute of Medicine, 1999, 2001), quality of health care has been high on the agenda. These seminal reports showed that health care is not infallible (1999) and that there is still a gap between what health care should be and how it is actually organized (2001). In order to improve health care quality, the authors concluded that the system needs to change. The IOM described the level of health care quality to be pursued using six criteria: safety, effectiveness, timeliness, efficiency, equity and patient-centredness. Recently, the National Academy of Medicine (2018) have updated the criteria: timeliness has been connected to accessibility and patient-centredness has been changed to person-centeredness 3

Very important in the context of this thesis is patient-centredness 4. This concept assumes the individual participation of a patient and is built on a relationship of mutual trust, sensitivity, empathy and shared knowledge (Balik, Conway, Zipperer & Watson, 2011). Nevertheless, since 2001, the emphasis has mainly been on criteria such as safety, effectiveness, timeliness and efficiency, and the literature shows that the translation of patient centeredness into hospital practices has been insufficient (Groene, 2011). There also seems to be an incongruence between nurses’ and patients’ perceptions of patient-centredness: nurses tend to have a more positive perception of patient-centredness than patients do (Berg, Idvall, Katajisto & Suhonen, 2012; McCance, Slater, & McCormack, 2009; Suhonen et al., 2012).

Hospitals are encouraged to be accredited, for example by the ‘Joint Commission International’ (JCI) or the Dutch Institute for Healthcare Accreditation (Nederlands Instituut voor Accreditatie in de Zorg) (NIAZ). NIAZ-accreditation includes a ‘patient-centredness’ category and consists of an agreement regarding the handling of complaints and the inventory of patients’ desires, expectations and experiences, while JCI evaluates the rights of patients and their family. Furthermore, patients are increasingly requested to give feedback on hospital care, although hospitals continue to search for sustainable, feasible and effective methods to collect such feedback (van de Bovenkamp & Zuiderent-Jerak, 2013).

Finally, hospitals are strongly encouraged to show accountability to the community. In Belgium, the governmental website www.zorgkwaliteit.be was launched to facilitate this process. This website offers patients and

health care professionals the possibility to consult and compare several indicators (e.g. patient experiences, survival rate after cancer) per hospital. As a result, health care quality may become more transparent.

Since 2015, the WHO has called for a fundamental shift in the way health care services are funded, managed and delivered. Their proposed strategy presents a vision in which services are more suited to provide a continuum of care that meets all the patient’s needs throughout the entire course of their life. Central in this vision is the integrated way in which these health care services are delivered. “Integrated health services are managed and delivered in a way that ensures people receive continuous support at different care levels and sites within the healthcare system, according to their specific needs and throughout the course of their life: health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation and palliative care services” (World Health Organization, 2015). As such, the provision of care will evolve towards a system in which patients receive a package of care to which all healthcare providers contribute. Such care packages aim to offer patients integrated care, transcending the traditional barriers between intra and extramural care (Sermeus & Vleugels, 2000). Such an approach results in a different position for hospitals. While these have had a pivotal role for many years, hospitals will become only one of many actors in the patient’s entire care process. Health care will be provided closer to the patient’s home and informal care will become even more indispensable.

1.3 Sociological and biomedical perceptions of health care

During the last seventy years, health (care), illness and disease have been interpreted in different ways. These interpretations also affect the way health care is organized and provided. In order to understand the actions that need to be undertaken in this field, it is relevant to first go deeper into perceptions of health care, and the way these have evolved since the mid-twentieth century. Therefore, the following paragraphs will discuss the sociological, biomedical as well as a broader (and preferred) perspective, together with the historical context. The sociological perspective mainly challenges the power of the medical profession, the biomedical perspective focuses on behavioral change, while the broader perspective goes beyond these two views.

2 Since July 1 2015, ‘The Institute of Medicine (IOM)’ is called ‘The National Academy of Medicine (NAM)’.3 Since this doctoral research started in 2014, the concept patient-centredness is used.4 The spelling of patient-centredness differs from one chapter to another and depends on the journal in

which the corresponding chapter was submitted or published.

3 Since this doctoral research started in 2014, the concept patient-centredness is used.4 The spelling of patient-centredness differs from one chapter to another and depends on the journal in

which the corresponding chapter was submitted or published.

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1.3.1 Sociological perspective

From a sociological perspective, illness was viewed by the sociologist Parsons (1951) as a social anomaly (Taylor & Field, 1997). In the mid-twentieth century, people with illnesses, diseases and disabilities were excluded from social participation, predetermined to have a lifelong need for separate schools and other care institutions. Such ideas of ‘segregation’ were typical for the medical model (or deficit model) at the time, focusing on problems, pathology, and illnesses (van Gennep, 2000). McKinlay & Marceau (2002) therefore refer to the mid-twentieth century as ‘the golden age’ for doctoring, medical power and prestige (McKinlay & Marceau, 2002). Doctors had a privileged position and status, characterized by monopolization, autonomy and high income. There was a substantial contrast with lay persons, which was reflected in two completely different social and cultural worlds. In hospitals, there was the world of patients and the world of health care professionals, with the first group having little freedom of choice and the second group determining everything (van Doorn, van Braam, Leemans, & van Outrive, 1975).

In the 1960s, this medical model was criticized. Goffman (1961) questioned the separate and dominant position of hospitals. He compared them to prisons and boarding schools and labeled them as ‘total institutions’. This term referred to an environment isolated from the real world run by a formal regime which large numbers of persons with comparable social positions are subject to (van Doorn, van Braam, Leemans, & van Outrive, 1975). Goffman (1961) mainly criticized the way in which medical staff interacted with patients. ‘Entry procedures’, such as wearing pyjamas and handing over medication, deprive patients of their personal characteristics and thus negatively affect their identity. Another point of criticism were the rules and procedures to which patients have to adhere, such as waking up and eating at a certain time (van Doorn et al., 1975). These procedures and processes encourage segregation, stigmatization and impede participation in society.

Gofman’s (1961) ideas gained support and were followed by stricter government regulations requiring healthcare staff to follow protocols, rules and procedures as well (van Doorn et al., 1975). Together with ongoing individualization, this resulted in more balanced relations between medical staff and citizens. The rise of the ‘countervailing power’ (e.g. from social observers, government, patient associations) led to opportunities for vulnerable people (Boumans, 2016). They made their voice heard by protesting against social exclusion and demanded a more inclusive society in order to lead a normal life.

The 1980s were characterized by a continuous specialization of the medical profession and an increase in technologization. As a consequence, priority was given to purely medical diagnosis and therapy, while psychosocial support became less important for healthcare providers. This led to dissatisfaction among patients, causing self-help groups to proliferate from the 1970s onwards in order to advocate a less subordinate position for patients and citizens. Increasing levels of education and access to various sources of information, enabled these groups to focus on providing information, psychosocial and emotional support for example, by sharing personal experiences with patients in similar conditions (Blume, 2017). As such, people exchanged coping strategies to increase their quality of life. In reaction to these self-help groups, advocacy groups developed (Rabeharisoa, 2003). They represented and defended the interests of people who were stigmatized (Goffman, 1963). For the members of these advocacy groups the best way to change their oppressed position in society was to take action themselves.

Looking back on the last seventy years, patients are increasingly challenging the traditional relationship with medical professionals and a clear shift has taken place in the status of the patient (Blume, 2017; Prior, 2003). This change is also reflected in the way authors refer to the patients’ perspective during the last years: first, mainly the term ‘lay health beliefs’ was used, which later evolved into ‘lay knowledge and expertise’, clearly emphasizing the changing status of patients (Blume, 2017). As reaction to the legitimation crisis of the medical profession a democratisation of decision-making procedures and patient participation was encouraged (Prior, 2003)

1.3.2 Biomedical perspective

From a biomedical perspective, efforts have been made to optimize health care and to include the patient perspective in medical diagnosis and treatments. In 1955, Michael Balint introduced patient-centered medicine in the medical field as ‘another way of medical thinking’. Patient-centredness assumes the individual participation of a patient and is built on a relationship of mutual trust, sensitivity, empathy and shared knowledge (Balint, 1955; Balik, Conway, Zipperer, & Watson, 2011). According to Balint, doctors were required to include everything they knew about their patient in their diagnosis and treatment. As such, the focus should not only be on medical-technical aspects, but also on emotional, spiritual and relational dimensions (Balint, 1964; Holmström & Röing, 2010). In 2000, a fundamental change in decision-making practices was introduced by Sackett et al.(2000). He advocated that in the medical decision-

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making process, the best scientific evidence should be used. Moreover, he stressed that medical actions should be based on a combination of scientific knowledge, clinical expertise and the patient’s preferences and circumstances. Evidence-based medicine, defined as “the integration of the best research evidence with our clinical expertise and our patients’ unique values and circumstances” gained increasing importance (Sackett et al., 2000). Later, evidence-based practice was introduced across several other disciplines, such as nursing, psychology and social work. Different interpretations of the same concept were established: ‘evidence-based social work’, ‘evidence-informed practice’, ‘knowledge-based practice’ and ‘evidence-based policy (Steens, Van Regenmortel, & Hermans, 2017; van der Zwet, Beneken, & Schalk, 2011).The shift from acute towards chronic conditions, together with budgetary constraints, increased the emphasis on treatment efficacy and therapy adherence. Information and education of patients gained further importance and patients were increasingly encouraged to engage in behaviors to exert control and increase health. Behavior theories, such as the Patient Activation Theory, support greater activation of patients, which can ultimately lead to effective self-management and greater health outcomes (Hibbard & Mahoney, 2010). However, these models are often criticized because they place the burden of NCDs mainly on patients (and their caregivers), which might increase the risk of blame and stigmatization when they are unable to carry these responsibilities. Only focusing on behavior and disregarding the underlying reasons for a lack of behavioral change enforces the idea that people themselves are to blame for their problems. Moreover, not all chronic diseases are sensitive to behavioral change. To differentiate between behavior-dependent and technology-dependent diseases, with immediate and future consequences, Christensen (2009) proposed the ‘Chronic Quadrangle’. What is interesting in the context of this thesis is that the authors suggest that patients with behavior-dependent diseases may benefit from patient networks. These are networks in which patients exchange user-generated content to help each other deal with their disease, to teach each other the ‘tricks of the trade’ and to inspire each other (e.g. Alcoholics Anonymous). Some of these networks even offer additional education about the disease to healthcare providers.

1.3.3 Beyond the sociological and biomedical perspectives

Apart from a biomedical and sociological approach, health may also be considered more broadly. In 2011, Huber et al. proposed a new definition of health, or so-called ‘positive health’, which emphasizes the ability of people to adapt to and self-manage their physical, mental or social challenges

(Huber et al., 2011). Huber’s conceptual framework of positive health distinguishes six health dimensions: physical functioning, daily routine, mental health, social participation, meaning and quality of life. According to the authors, this definition addresses the shortcomings of the WHO’s definition, which dates back to 1948. The WHO defined health as “a state of complete physical, mental and social well-being”. After 60 years, this definition has come under increasing scrutiny. First, critical voices claim that the WHO’s definition unintentionally contributed to the medicalization of society. The focus on ‘complete health’ is not realistic as it results in a limited number of people being considered healthy, and thus might lead to higher levels of medical dependency. Second, since 1948, the demography of populations and disease patterns have changed. The increasing number of people with chronic conditions makes this definition counterproductive as it declares these people definitively ill. In other words, the definition neglects people’s ability to cope with physical, emotional and social challenges in daily life. Third, the operationalization of this definition is difficult because the complete state is neither feasible nor measurable.

Overall, this static formulation of health is being replaced by a more dynamic one, and the positive health model focusses not only on medical knowledge and expertise, but also values people’s knowledge and expertise to cope with their disabilities and diseases. Nevertheless, this model is also criticized for two main reasons. A first criticism is that the concept of positive health may entail a risk of reactive instead of proactive actions to promote health by individuals and professionals, since any challenges faced in life are unknown until they occur. Another criticism is that this new definition is only applicable in circumstances that are within one’s control, whereas some social determinants of health may preclude the ability of individuals and communities to adapt to their circumstances or to self-manage their condition. Neglecting the social context of disadvantaged groups may thus promote inequalities (Jambroes, Nederland, Kaljouw, van Vliet, Essink-Bot, & Ruwaard, 2015).

Another broad framework that entails a synergy between a biomedical and a societal perspective on health and addresses the critiques on the concept of positive health is the empowerment framework (Solomon, 1976; Rappaport, 1987; Zimmerman, 1995). This framework adopts a positive and pro-active approach towards health care and connects the individual with the wider social and political environment (Van Regenmortel, 2011). This paradigm helps to move away from the approaches that excessively focus on individual responsibility to adopt behavioral changes and self-management strategies. Indeed, the empowerment paradigm, just like the well-known Chronic Care Model (Wagner, 1996) promotes the strong interaction and synergies between the policy level, health care institutions,

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the patient and the community, and thus avoids the traditional ideas of ‘blaming the victim’. Furthermore, empowerment is a relational concept: it emphasizes the connection with several support systems, professional and non-professional, each having its own type of expertise and support. As such, health care can meet the biomedical and other needs related to a patient’s quality of life. The empowerment framework, which is adopted in this thesis, is further elaborated in the following paragraph.

1.4 Conceptual context of the thesis: empowerment, participation and expertise by experience

1.4.1 Empowerment as a framework for current health care

In various areas such as research, politics, education and health care, the term empowerment has received increasing attention (Roberts, 1999). In the latter domain, the term ‘patient empowerment’ is used. It is a popular term which has recently been introduced, both nationally and internationally, as a framework for current care (Boumans, 2016). Empowerment implies a fundamental change in the traditional power relationship between healthcare providers and patients (Roberts, 1999). Similar to professionals, patients are seen as equal partners that have the ability to actively participate and influence decisions at several levels. Patient empowerment is also used to describe the relationship between health and power, thereby assuming that empowered patients are healthier than those who are not (Wallerstein, 1992).

1.4.1.1 International and national level

Internationally, different policy statements form the basis of a growing focus on patient empowerment. An important example is the Ottawa Charter on Health Promotion (World Health Organization, 1986), which identified empowerment as the main focus of health promotion. Both individual and collective empowerment were emphasized as being essential for patients to get a grip on and gain control over their lives (Beard & Redmond, 1979; World Health Organisation, 2015). Nationally, empowerment has mainly received attention in mental health care and the social domain (i.e. poverty and social exclusion). There, it is associated with a process of personal growth and gaining control of one’s life or environment (Van Regenmortel, 2009). In these domains, experts by experience are employed in institutions and government departments to foster an empowering culture.

1.4.1.2 Conceptual frameworks and criticisms

Although the concept is gaining increasing attention, patient empowerment is often used incorrectly due to three common misconceptions. First, the focus is often on the individual level of empowerment (Roberts, 1999). However, empowerment is a relational construct (Rappaport, 1987): it considers the individual in his or her broader environment. It is also a multi-level construct which entails three levels: individual, organizational, and societal (Schulz, Israel, Zimmerman, & Checkoway, 1995). Ignoring the larger structural context (i.e. organizations and community) would imply that all individuals are able to feel ‘empowered’, while in fact contextual factors such as gender, race and socio-economic status also have an influence on individual empowerment (Roberts, 1999). Empowerment theory emphasizes that these three levels are interconnected, indicating the interactive nature of empowerment. Second, all too often the literature suggests that healthcare professionals are able to empower their patients, for example to change their behavior in some positive way. However, healthcare professionals cannot empower patients. What they can do is support them in such a way that their empowerment is facilitated. Empowerment is a process of getting more control, which individuals have to experience themselves. Third, it is often thought that patient empowerment implies a decrease in the healthcare professional’s power and an increase in that of the patient. However, as McKay (1990) rightly points out, empowerment implies a symbiosis that produces a more helpful caring process than the healthcare professionals or the patients can provide individually (McKay, Forbes, & Bourner, 1990).

In order to avoid misunderstandings, patient empowerment must be perceived in the light of a broader empowerment paradigm (Rappaport, 1987; Zimmerman, 1995). The concept is ethically based on values such as social justice, democracy, pluralism and diversity. In line with its founders, Rappaport and Zimmerman, Van Regenmortel defines empowerment as follows:

“A process of strengthening in which individuals, organizations and communities gain control of their own situation and their environment by acquiring control, raising critical awareness and stimulating participation” (Van Regenmortel, 2008).

Empowerment presupposes strengths-oriented care in which a positive underlying attitude on the part of the healthcare provider and adequate participation on the part of the patient are key aspects (Van Regenmortel, 2009). It is aimed at the pursuit of synergies between persons, groups, organizations and disciplines. Similar to Huber’s (2011) concept of positive

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health, the focus is on wellbeing, health, competencies and strengths, protective factors and natural support systems (e.g. voluntary work). In this sense, the empowerment approach differs significantly from the traditional treatment or disease model (i.e. deficit model), which focuses more on problems, pathology, illnesses and risk factors.

1.4.2 Participation to increase the quality of health care

1.4.2.1 International and national level

At the international level, the Committee of Ministers of the Council of Europe in 2000 approved recommendations regarding patient participation (Council of Europe, 2001). They stressed the importance of the following aspects: democratic principles, adequate information, supporting policies as well as a legislative framework, and attention to different participation methods. Furthermore, in 2004, the WHO emphasized that the voice of patients should be heard rather than assumed (World Health Organization, 2004). In addition, the WHO 2020 strategy promotes patient organizations as key actors in health services. Despite the strong support of these supranational organizations, the practical implementation of patient participation is mainly situated at the level of individual care (Carman et al., 2013; Coulter, 2016; Sharma, Knox, Mleczko, & Olayiwola, 2017).

A similar trend can be observed at the national level. Regarding the legal context, the Belgian Patient Rights Law (2002) safeguards participation at the level of individual care. Furthermore, participation methods such as ‘shared decision-making’ (Elwyn et al., 2012) and ‘bedside shift reporting’ (Malfait, Eeckloo, Lust, Biesen, & Hecke, 2016) are receiving considerable attention. At the level of the institutions, patient participation is encouraged by a policy recommendation by Zorgnet-Icuro (the umbrella organization for hospitals) (Hellings, 2012). It states that, in the context of corporate governance, the structural participation of patients must be designed at the organizational level. In response to this recommendation, a stakeholder committee meeting on hospital policies was organized (Malfait et al., 2017). Although this was an important first step, the evaluation of the project showed that any topics discussed need to be closely related to the patient’s world. At the policy level, the Flemish Patient Platform has promoted patient participation over the past 15 years. This has led to representation of patient associations in several advisory bodies, such as the Federal Committee on Patients’ Rights.

1.4.2.2 Conceptual frameworks and criticisms

The multilevel aspect and the different participation methods characterize participation as a complex concept (Tambuyzer, Pieters, & Van Audenhove, 2011). In the literature, several efforts have been made to define patient participation, but most of these definitions focus at the individual level. An example of a broader definition is that of Tambuyzer (2011), although it is limited to mental health care:

“The involvement of patients in decision making and active participation in a range of activities (e.g. planning, evaluation, care, research, training, recruitment) starting from the expertise by experience of the person, in collaboration with and as equal partners of professionals” (Tambuyzer et al., 2014).

The first framework of participation is the well-known ‘participation ladder’, which is based on the ladder of citizen participation developed by Arnstein (1969). This framework presents the different degrees of influence (informing, consulting, advising, co-producing and patient-driven collaboration) and demonstrates that patients can be involved in many ways (Arnstein, 1969). However, the ladder is often criticized as it gives the impression that the highest rung is the best, while in fact this depends on the purpose of the participation activity (Abma & Broerse, 2010; Tritter & McCallum, 2006). Furthermore, the ladder fails to show how patients can be involved (Abma, 2005). Overall, several initiatives that have implemented patient participation suggest positive effects on quality of care: increased accessibility (Crawford et al., 2002; Fudge, Wolfe, & McKevitt, 2008; Nilsen, Myrhaug, Johansen, Oliver, & Oxman, 2010), patient safety (Longtin et al., 2010) and patient satisfaction (Fudge et al., 2008; Sahlsten, Larsson, Sjöström, & Plos). However, there are also studies that offer some critical remarks. Patient participation at the individual level, for example, might result in shifting responsibilities towards patients. Yet, not every patient is able or willing to carry these responsibilities (van de Bovenkamp & Zuiderent-Jerak, 2013). Those who are unable to meet these requirements are often blamed. Also, when patients feel that their input is not taken seriously, they are confronted with disempowering feelings (Ocloo & Matthews, 2016).

Patient participation at the organizational or policy level (e.g. involving patients in quality decision-making processes) is not always associated with better results. Empirical research has shown that the influence of patients’ insights on the daily work of healthcare providers might be limited (Solbjør & Steinsbekk, 2011). Also, strategies to involve patients

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often remain rooted in professionally dominated approaches where patients are consulted only at a level where they have little opportunity to really influence the decision-making process (Ocloo & Matthews, 2016). Often it is still the professionals who determine whether the input of the patients is used or not (Abma & Broerse, 2010). In this case, patient participation is subject to criticisms such as tokenism (Adams, van de Bovenkamp, & Robben, 2015; Ocloo & Matthews, 2016).

1.4.3 Participation within an empowerment framework

When patient participation is not carefully designed and implemented, it might lead to tokenism and disempowerment (Braes, 2018; Coulter, 2016; Ocloo & Matthews, 2016). In order to avoid these negative consequences, the empowerment paradigm offers an appropriate framework to guide thinking and acting. It does not consider patient participation as an aim in itself, but as a strategy to facilitate empowerment. Whereas patient involvement in the past was seen as an alternative to traditional health services, the empowerment framework considers the patient perspective as complementary to the professional’s perspective. It embraces a partnership between patients and caregivers (Van Regenmortel, 2008) and is considered as a relational, deliberative and dialogical process (Van Regenmortel, 2008). This partnership approach has already been adopted in health research (Abma, 2005; Caron-Flinterman, Broerse, & Bunders, 2005) and was considered an effective model of patient participation because it revealed new perspectives. A true partnership requires good collaboration between healthcare professionals and patients. To collaborate productively and to influence healthcare decision-making, three interacting ingredients are essential: credibility, legitimacy and power (Boivin, 2014). To meet these criteria, experts by experience are particularly suited. They have the relevant competencies to share their knowledge in a credible way. Because they possess collective knowledge based on collective experiences and reflection, they have the legitimacy to speak on behalf of their peers. Through a process of validation and systematization, this collective knowledge is transferable to other places and situations. As such, they have an increased ability to exert influence and power. In the next section, the concept of experts by experience will be further illustrated

1.4.4 Experts by experience in health care

1.4.4.1 Framing within a typology of patient associations

In the context of biomedical research, Rabéharisoa & Callon (2002) distinguish three types of patient organizations that actively engage with the field of biomedical research to change their situation. The first category consists of ‘auxiliary groups’ (Rabeharisoa & Callon, 2002). The members of these groups delegate research to scientists or participate as equals. In the latter case, they are called ‘lay experts’ (Epstein, 2005) or ‘proto-professionals’ (de Swaan, 2007), because they have adopted the biomedical vocabulary. However, they do not challenge the paradigms of biomedical research, nor do they add additional knowledge or insights. As such, these groups are characterized by limited influence. A second type of group is the ‘oppositional group’. These groups are described in less detail by Rabeharisoa & Callon (2002) and are mainly formed when a certain disease is not recognized by the medical community, or when medical interventions do not help. This type of group does not aim to interfere in scientific practices, but they focus on finding ways to help themselves. The third group is the most relevant group with respect to this thesis and concerns the ‘partner association’. The members of these groups have specific knowledge and expertise that they want to combine with biomedical knowledge and expertise. Therefore, their members are called ‘experts by experience’. In these groups, collective expertise is formalized and can be discussed with biomedical experts. The group plays a prominent role here: “by pooling and comparing the experiences of its members, it builds up a collective expertise just as objective and authentic as that of the specialists, even if it is different” (Rabeharisoa & Callon, 2002). However, whilst the presented typology is illuminating, the authors do not demonstrate what the knowledge of the patients consist of, how it is produced and to what it leads in practice.

1.4.4.2 Distinguishing between experts by experience and expert patients

Experiential expertise refers to the experiences and knowledge which patients might possess. Borkman (1976) was the first to introduce the concept and pointed out the difference between individual and collective experiential knowledge. She described individual experiential knowledge as “the truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others”. By transcending an individual situation, for example by interacting with people experiencing the same conditions, one may learn what it is to be confronted with a certain problem in several situations.

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Moreover, experiential expertise presumes appropriate competences to bring knowledge into action, for the benefit of others (Borkman, 1976)

Although ‘experts by experience’ is not the most frequently used concept to refer to ‘competent’ patients, it is used in this dissertation because it is a well-defined concept in other domains (mental health care and social care) and explicitly emphasizes the importance of possessing collective experiential knowledge when bringing experiential knowledge into action. In the medical literature, on the other hand, the term ‘expert patients’ is mostly used. It is often associated with possessing self-management skills (Lorig & Holman, 2003), but also refers to patients acting as educators and participating in the development and evaluation of guidelines or programs (Boulet & Louis-Philippe, 2016). In contrast to the term expert by experience, no well-defined dimensions are described in the literature (Wilson, 2007). Moreover, sociologists have criticized this concept because it is associated with so-called empowered patients that take responsibility for the management of their condition by adopting their power from the medical model (i.e. ‘dominant disciplinary system of thought’) (Fox, Ward, & O’Rourke, 2005). According to Blume (2017) “the unstated assumption is that the patient’s understanding has been sufficiently infused with medical thinking that the way he or she deals with the condition is pretty close to what the doctor would advise” (Blume, 2017).

1.4.4.3 Experiential knowledge

Experts by experience possess knowledge and expertise that is complementary to the knowledge and expertise of professionals (Borkman, 1976). Experiential knowledge is implicit and pragmatic knowledge, oriented towards here-and-now action, as well as holistic. This is in contrast to professional knowledge, which is mostly explicit, theoretical and scientific knowledge, long-term oriented and specialized (Borkman, 1976). However, since Borkman introduced the concept in 1979, its meaning has become less straightforward. Pols (2014), for example, proposed another perspective. In her opinion, the knowledge of patients cannot be perceived as a body of knowledge, but rather as a source of coping mechanisms for living with a disease which explicitly draws both on medical knowledge and their own raw experiences. In this respect, she underlines that experiential knowledge should not be contrasted with medical knowledge (such as proposed by Borkman). She acknowledges its value for other patients (Blume, 2017; Pols, 2014). Whether the value of experiential knowledge is considered as valid or not depends on the definition of knowledge and validity (Caron-Flinterman et al., 2005). To counter these different views, Caron-Flinterman et al. introduced the concept of ‘utility in context’ and applied it as follows: if experiential

knowledge seems to be useful in a certain context, it can be considered valid within that specific context (Caron-Flinterman et al., 2005). Similar to Borkman (1976), Caron-Flinterman et al (2005) bring up the idea of sharing experiential knowledge to exceed the boundaries of individual experiences. Borkman (1976) refers to it as ‘collective experiential knowledge’ which is, in addition to ‘individual experiential knowledge’, a dimension of experiential expertise. In general, there is little unanimity whether it is appropriate to label this knowledge as valid knowledge (Borkman, 1976).

1.4.4.4 Experiential expertise

Compared to experiential knowledge, less is known about the concept of experiential expertise. This concept is, however, mainly used in mental health care and in social care. According to van Haaster (2013), experiential expertise in mental health care is based on understanding from within, nourished by experiences with care and everything that comes along with it (van Haaster, Wilken, Karbouniaris, & Hidajattoelah, 2013). It is based on knowledge about how care is organized, what helps or not, how the environment might react and, most importantly, on the strengths required to give new meaning to the changes in one’s life. He and other authors such as van Erp (2011) consider collective experiential knowledge to be a result of sharing experiences and knowledge with others (van Erp, van Wezep, Meijer, Henkens, & van Rooijen, 2011). Another crucial distinctive feature of experiential expertise is to be able to articulate experiences and knowledge to support others with similar conditions or healthcare providers. The process model reflecting the evolution from experience to experiential expertise is presented in Figure 1.

Figure 1: Process model from experience to experiential expertise

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1.4.4.5 Bringing experiential knowledge and expertise into action

This thesis focusses on patient participation in hospital services, at the level of direct care (micro level) as well as the level of the hospital service (meso level). Indeed, these levels are known to fit best with the experiences lived by patients (Malfait et al., 2017). At the individual level experts by experience can support and advise other people with similar conditions. Based on their experiences, knowledge and expertise, experts by experience can inspire others to find solutions or ways to deal with obstacles or challenges they and their peers face every day (Pols, 2013). They can do so by providing understandable information and practical, emotional and social support. By taking aspects of daily life into account, they provide people with several possible management strategies (Embuldeniya et al., 2013). As such, they have the potential to complement existing medical-technical know-how with experiential knowledge, which is likely to facilitate patient empowerment.At the level of the hospital service, experts by experience can offer new insights and evaluate how care is organized. As a result, healthcare organizations can deliver care that is more patient-centred (Berwick, 2009; Crawford et al., 2002; Mockford, Staniszewska, Griffiths, & Herron-Marx, 2012a; Sharma et al., 2017).

1.5 State of the art: Experts by experience in mental health care and social care

Based on a literature study and interviews with key informants, the current state of the art as well as lessons learned from mental health care and social care (poverty and social exclusion) are described in the following section. To obtain knowledge about the state of the art of patient participation in hospitals, we conducted a survey among patient associations. The results of this survey are described in Chapter 5.

1.5.1 Background

In mental health care, recent trends (e.g. the socialization of care) have led to advancements in experiential expertise. In the USA, the Netherlands, but also in Belgium, experts by experience are employed to support their peers, and to spread and implement a vision of recovery (Couwenberg & van Weeghel, 2014; Vandewalle et al., 2018). Recovery implies a focus on strengths and possibilities rather than the limitations which might be associated with long-term conditions. It stresses a re-establishment of balance after experiencing mental health problems and can be sub-divided

into four aspects: developing a positive identity, framing the condition, learning to manage the condition, and developing positively valued roles (Weerman, 2016).

In social care, experts by experience are employed to facilitate empowerment (Casman, Vrancken, Dierckx, Deflandre, & Campaert, 2010; Roets, Roose, De Bie, Claes, & van Hove, 2012). Empowerment is related to the recovery vision, yet it is a broader concept. Whereas recovery is solely related to the individual level, empowerment targets multiple organizational levels (Keuzenkamp, 2017). It underlines the power of people to influence their own lives, but also takes into account unequal opportunities and mechanisms of exclusion created by society (Roets et al., 2012). The involvement of experts by experience aims to close the gap between people living in poverty and the rest of society (De Corte & Kerstennen, 2015).

Regardless of the underlying vision, experts by experience provide an insider’s perspective and contribute to the quality of service. In this way, they intend to foster a cultural change in institutions, policy and society.

1.5.2 Definitions:Aconceptualdiscussion

The meaning of the concept expert by experience varies between the two domains described above. In mental health, a commonly used definition of expert by experience is Van Erp’s (2011):

“An expert by experience is someone with the expertise in supporting others to develop its own experiential knowledge and to support the recovery process. At the same time, it is the expertise in the field of more general experience knowledge and the enabling of it in care and in the emancipation and the battle against stigmatization” (van Erp et al., 2011).

Although experts by experience also participate in policy development and education, the emphasis is mainly on the individual level. Apart from expert by experience, the term ‘experiential worker’ is also used (van Haaster et al., 2013). The latter term refers to experts by experience who are employed under a labor contract.

In social care, every person confronted with poverty and social exclusion is called an expert by experience. However, to differentiate them from experts by experience that received training, they also use the term ‘trained experts by experience’. Their definition is as follows:

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“Trained experts by experience in poverty and social exclusion are persons who have experienced poverty since birth. They have processed and expanded their experience to broader poverty experience, and through training they were handed attitudes, skills and methods to practice and apply the broadened poverty experience in a well-grounded way in all fields of poverty prevention” (Missing Link, 2010).

Regardless of the domain in which experts by experiences are involved and whether they are under a labor contract or not, the underlying idea is the same: based on experience, experts by experience have a certain knowledge and expertise that is different, unique and complementary to the knowledge and expertise of professionals.

1.5.3 Organisational levels and power dimension

In mental health care, experts by experience are involved at the individual, institutional and policy level (Tambuyzer et al., 2011), but also in supporting domains, such as education and training (van Bakel, van Rooijen, Boertien, Kamoschinski, & Kluft, 2013). At the individual level, these experts by experience deliver care, while at the other levels they are consulted to express their insider’s perspective or to advise healthcare professionals or policymakers.

In social care, involvement of experts by experience is situated at the same levels (Vandenbempt & Demeyer, 2003). At the individual level, experts by experience in hospitals support people in poverty to increase their health literacy (Van Roy & Willems, 2017). At the institutional level, experts by experience ensure that people in poverty have access to health care and to other support mechanisms to which they are entitled. Also, experts by experience analyze the modus operandi of hospitals and governmental organizations or departments to advise them on how they can better tailor their services to people living in poverty.

1.5.4 Description of tasks and roles

The competence profile of experts by experience in mental health care entails three core tasks: to support individual recovery processes, to support recovery enhancing processes in the organization and to support social opportunities (van Bakel et al., 2013). Different activities are distinguished for each core task: client-related, organization-related and profession-related activities. The client-related tasks are intended

to support clients (e.g. by providing social and practical support). The organization-related tasks are intended to improve the organization (e.g. by advising teams and management on care programs and policy). The profession-related tasks are linked to the content of the profession (e.g. continuous reflection on one’s own performance and efforts to keep one’s own expertise up to standard). Experts by experience fulfil these tasks by adopting various roles. They are (1) supporter, counsellor, buddy and coach; (2) bridge builder; (2) policy influencer; (4) researcher and (5) initiator of innovation (Chinman, Young, Hassell, & Davidson, 2006).

In social care, experts by experience are employed in hospitals and government departments where they may conduct six different tasks (Vandenbempt & Demeyer, 2003). They contribute to improving the reception and information given to people living in poverty; they support people in poverty in carrying out administrative procedures; they assess the needs of people living in poverty through interviews; they conduct surveys and facilitate contact with social organizations; they improve the overall quality and accessibility of the services; they contribute to the development of partnerships between services; and they draw the attention of political decision-makers to structural problems and gaps in legislation. They fulfil these tasks by adopting different roles: interpreter (offering insight into the world of people in poverty), mediator (bridging the gap between the living environment of the poor and that of the middle class), counsellor and signaling role (to criticize structural barriers) (De Corte & Kerstennen, 2015). They perform their task and roles in a variety of ways, such as supporting people in poverty emotionally, socially and practically and participating in internal and external meetings, working groups, fora and advisory bodies.

In both social and mental health care, experiential expertise is characterized by a movement towards more professionalization. As such, the power of professionals and that of experts by experience becomes more balanced (Vandewalle et al., 2016). At the same time, this professionalization trend entails a risk that the authenticity of the experts by experience will be diluted (Vandewalle et al., 2016).

1.5.5 Benefits

The literature has shown several positive effects of the involvement of experts by experience, both for the ‘users’, the professionals, the organizations and the experience experts themselves.In mental health care, a decrease in (re)admission rate, higher treatment compliance, positive effects on the relationship with care providers and better fulfilment of care needs are reported (Repper & Carter, 2011; van Vugt,

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Kroon, Delespaul, & Mulder, 2012). In addition, effects on social functioning have been described, such as an increase in users’ overall participation rate, an improvement in maintaining social relationships, an increase in social support and an improvement in social functioning (Boevink, Kroon, van Vugt, Delespaul, & van Os, 2016; Repper & Carter, 2011). Finally, effects on empowerment have been demonstrated, for example an increased sense of independence, a positive effect on self-esteem, confidence in the future and higher resilience (Lloyd-Evans et al., 2014). The quality of care of mental healthcare institutions collaborating with experts by experience has also been shown to increase (Van Regenmortel, 2008). Furthermore, the organization of care becomes more flexible and less bureaucratic. Patients are offered more choices as well as more practical and concrete information. The focus is on recovery and less on the medical paradigm.

In social care, the added value of experts by experience has been described in terms of empowerment (Van Regenmortel, 2002). Experts by experience can help to better match the supply and demand of assistance, which enhances its quality. They can also help to create more understanding and trust, which ensures better communication with the target group and has a threshold lowering effect. Professionals working together with experts by experience often go through a process of growth because they are stimulated to self-reflect. In addition, the experts by experience also display inner growth: developing a more positive self-image, feeling stronger, seeing the structural dimension of poverty, gaining more insight into their own and other people’s behavior and acquiring more opportunities for choice and control in their own lives. Experts by experience are positive role models for people living in poverty, but also for others. They provide opportunities for the de-stigmatization and emancipation of people living in poverty. Finally, the involvement of experts by experience in several settings and contexts leads to a broader awareness of the poverty problem.

1.5.6 Lessons learned from mental health care and social care

During explorative interviews with key informants and a preliminary literature review, several tensions within the domain of mental health care and social care came to the fore. Consequently, we drew a number of lessons from these areas. Three common and essential preconditions to effectively involve experts by experience are described below. The first lesson to be gained is the importance of embedding the involvement of experts by experience in a broader vision on health care. The empowerment framework seems to be the most appropriate because it is a meta paradigm that connects several others (e.g. the biomedical and

sociological paradigm). It considers the equal importance of a variation of multilayered support systems to help people shape their lives in a way that meets their needs and wishes. It emphasizes people’s participation at multiple levels to improve empowerment and patients’ quality of life (Van Regenmortel, 2011). It entails a tailored process and distinguishes itself from a participatory society advanced by the government against the backdrop of cost savings and a ‘quid pro quo’ discourse.The second lesson is that it is important to consider professionals and experts by experience and their respective knowledge as equivalent. A shared vision regarding the collaboration and the services provided is indispensable as tensions can arise when healthcare professionals and experts by experience have different beliefs of what constitutes proper care for patients (De Corte & Kerstennen, 2015; Gillard et al., 2015; Tambuyzer et al., 2014; Vandewalle et al., 2016).The third is appropriate support for experts by experience as well as the professionals involved (Chinman et al., 2006; De Corte & Kerstennen, 2015; Tambuyzer et al., 2014; Van Roy & Willems, 2017; Vandewalle et al., 2018). With respect to experts by experience, such support begins with an appropriate selection procedure. Then, some training to strengthen their experiential knowledge and expertise is highly recommended (Gillard et al., 2015). Proper training also enhances the credibility of experts by experience, decreasing the pressure on them to gain acceptance (Vandewalle et al., 2016). During the actual collaboration, an extensive support trajectory is desirable, e.g. through coaching sessions and intervision with other experts by experience. Such support procedures can still preserve the authenticity of the experts by experience. In addition, support is necessary for the professionals involved, because their concerns must be taken seriously too (Van Regenmortel, 2017). The fourth lesson is that it is essential to establish a framework in which collaboration can take place. Bearing in mind the risk of over-formalization, this framework should consist of agreements on procedures, communication, task and roles, and practical arrangements (Chinman et al., 2006; De Corte & Kerstennen, 2015; Gillard et al., 2015; Tambuyzer et al., 2014; Vandewalle et al., 2016).

1.6 Rationale, aims and research questions

1.6.1 Rationale for aims and research questions

Patient empowerment, patient participation and patient-centeredness are currently considered as buzz concepts. Despite their popularity, the existing scientific literature offers no unequivocal definitions for these concepts (Anderson & Funnell, 2010; Roberts, 1999) and it is unclear how

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they are related (Chatzimarkakis, 2010; Groene et al., 2010). Also, different terms are used for the concept of expert by experience and it is not always specified what exactly is meant by a particular term (Mclaughlin, 2009; Scourfield, 2010). In the medical literature, researchers mainly refer to peer support workers or expert patients, but these terms do not express the specific role that experts by experience have. Nevertheless, when concepts are clearly defined, this has a positive impact on the way in which those concepts are established in practice (Goertz, 2006).A second shortcoming in the literature is the lack of research on the effects of patient participation in general hospitals (Adams et al., 2015; Mockford, Staniszewska, Griffiths, & Herron-Marx, 2012b; van de Bovenkamp & Zuiderent-Jerak, 2013). Research combining quantitative and qualitative methods is scarce and there is a need for controlled studies (Nilsen et al., 2010). A third shortcoming is the lack of evidence as to which participation method is most effective under which circumstances (Crawford et al., 2002).A fourth shortcoming is that it is not clear how patient participation should take place in practice (van de Bovenkamp & Zuiderent-Jerak, 2013). More specifically, the literature is vague on how patients can participate and who should do so (Armstrong, Herbert, Aveling, Dixon-Woods, & Martin, 2013). Finally, patient participation in practice is often criticized because it is often not embedded in a broader vision on good care. As a result, strategies to involve patients are often rooted in professionally dominated approaches which impede full participation and increase the likeliness of tokenism (Adams et al., 2015; Ocloo & Matthews, 2016; Roets et al., 2012; Solbjør & Steinsbekk, 2011; van de Bovenkamp & Zuiderent-Jerak, 2013).

1.6.2 Aims

In response to these shortcomings in the literature, the central aim of this thesis is to provide insights into the critical ingredients to involve experts by experience in the delivery and evaluation of hospital services. This central aim can be divided into three subordinate objectives:

1. To fill in the knowledge gap by distinguishing the essential dimensions of the concepts of patient empowerment, patient participation, patient-centeredness and expertise by experience, and to clarify their mutual relationships.

2. To contribute to knowledge about the possibilities for participation by experts by experience in general hospitals.

3. To map the effects and experiences resulting from the involvement of experts by experience at the micro and meso level on the empowerment of

patients and the patient-centeredness of healthcare providers.

1.6.3 Research questions

The central aim and its three related objectives are translated into the following main research question: “How can experts by experience participate in hospital services to promote the empowerment of people with long-term conditions?” This leads to five more specific research questions (SRQ):

SRQ1: What are the essential dimensions of the concepts patient empowerment, patient participation, patient-centredness and expertise by experience, and how do these concepts relate?

SRQ2: What is the state of the art, from the perspective of experts by experience, regarding collaboration between hospitals and themselves?

SRQ3: What are the lessons learned from using co-design in implementation studies?

SRQ4: What are the facilitators and effects of the involvement of experts by experience, according to experts by experience themselves, healthcare providers and patients?

SRQ 5: What is the impact of the involvement of experts by experience on the perceptions of patients and nurses regarding patient-centredness in hospital care?

1.7 Outline

The relations between the main research question (MRQ), the specific research questions (SRQ), the publications and the outline of this thesis are presented in Table 1.

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MRQ: “How can experts by experience participate in hospital services to promote the empowerment of people with a chronic condition?”

Table 1: Outline of the dissertation.

RESEARCH QUESTION CHAPTER

Chapter 1: Introduction

Chapter 2:Methodology

SRQ 1: What are the essential dimensions of the concepts patient empowerment, patient participation, patient-centredness and expertise by experience and how do these concepts relate to each other?

Chapter 3: Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review (published in Patient Education and Counseling)

Chapter 4: Patients’ experiential knowledge and expertise in health care: A hybrid concept analysis (published in Social Theory & Health)

SRQ 2: What is the state of the art, from the perspective of the experts by experience, regarding collaboration between themselves and hospitals?

Chapter 5: Participation and health care: a survey investigating the current and desired collaboration between patient organisations and hospitals(published in Journal of Social Intervention)

SRQ 3: What are the lessons learned of using co-design in implementation studies?

Chapter 6:Co-design for implementing patient participation in hospital services: a discussion paper (published in Patient Education and Counseling)

SRQ 4: What are the facilitators and effects of the involvement of experts by experience, following experts by experience themselves, healthcare providers and patients?

Chapter 7: A framework for the involvement of experts by experience in the delivery and evaluation of hospital services: evaluation of a qualitative study (under review)

SRQ 5: What is the impact of the involvement of experts by experience on the perceptions of patients and nurses regarding patient-centredness in hospital care

Chapter 8: Effect of an experts by experience intervention on the congruence of nurses’ and patients’ perceptions of patient-centred care: a pre-test and post-test study(under review)

Chapter 9: Discussion

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2 Chapter 2: Methodology

2.1 Research frameworks

The central aim of this study is to provide insights into the critical ingredients of involving experts by experience in the delivery and evaluation of hospital services. Therefore, this study aims to develop and evaluate an intervention that promotes the participation of experts by experience (Meyer, 2000). For this purpose, a form of practice-oriented research is conducted (Billiet & Waege, 2003). The nature of this type of research is mainly inductive and aims to bring about changes in current practice. It consists of four key phases (Swanborn, 1999): a description of the existing situation, an inventory of various interventions, the implementation of such an intervention, and a description of the new situation. These four steps are linked to the first two steps, i.e. development and pilot testing, of the framework presented in “Development and evaluation of randomized controlled trials for complex interventions to improve health” (Craig et al., 2008). The other two steps in this framework are evaluation and implementation (see Figure 2). For the purpose of this research, only the first two phases were completed. The authors of the framework describe a complex intervention as “an intervention made up of various interconnecting parts, making them more difficult to control” (Campbell et al., 2000). Existing frameworks of patient participation (Tambuyzer, Pieters, & Van Audenhove, 2011) show that these interventions are complex, which makes them challenging to implement.

Figure 2: The Medical Research Council framework for developing complex interventions in health care (Craig et al., 2008)

Because this research project focuses on the improvement of health care for

a socially vulnerable group, i.e. patients with long-term conditions, the guiding principles of ‘empowerment research’ are highly relevant (Fetterman & Wandersman, 2007). Empowerment research, a specific form of ‘action research’ (Small, 1995), is characterized by its valorization of the so-called ‘silenced voices’ (i.e. voices of vulnerable groups) and its aim to prove and to improve (Van Regenmortel, 2011). In general, action research “seeks to bring together action and reflection, theory and practice, in participation with others, in the pursuit of practical solutions to issues of pressing concern to people, and more generally the flourishing of individual persons and their communities” (Reason & Bradbury-Huang, 2001). A fundamental principle characterizing empowerment research is that three equal forms of knowledge are combined: (1) professional or practical knowledge, (2) experiential knowledge originating from patients and (3) scientific or theoretical knowledge (Fetterman & Wandersman, 2007; Van Regenmortel, 2009). Because healthcare providers as well as patients participate in the research process, it can be referred to as ‘participatory’ action research (Reason & Bradbury-Huang, 2001). Such research offers several advantages: it empowers participants as it is considered to be an empowering process in itself, it educates participants, it contributes to understanding, knowledge and theory, it acknowledges the contextual complexity and it can be used in complex adaptive systems such as hospitals to develop innovative practice (Waterman et al., 2001). Moreover, the integration of several types of participants (and knowledge) allows going beyond the traditional one-way process in which researchers produce knowledge. Instead, participation, action and research are combined. In this context, participation refers to high quality participation of healthcare providers and patients in decision-making, action refers to the intervention that will effectively be developed and tested, and research refers to the systematic and rigorous inquiry that will be conducted. Thus, by establishing this participatory action research project, we have bridged the gap between research and practice (Reason & Bradbury-Huang, 2001).

2.2 Research design

As participatory action research calls for attention to both theoretical development and practical improvements, it is important to use qualitative as well as quantitative research methods (Nilsen, Myrhaug, Johansen, Oliver, & Oxman, 2010; Fetterman & Wandersman, 2007). Therefore, a mixed method approach was adopted in this study. However, bearing the principles of empowerment research in mind, the focus is on qualitative research methods, as these offer more opportunities for participation (Van Regenmortel, 2009) and are more likely to reveal information relevant to the exploratory nature of the study.

To ensure high quality participation and effective action, the proposed intervention was developed and piloted using qualitative methods. A co-

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design trajectory with patients, experts by experience and healthcare professionals was completed to design an effective and feasible approach aimed at involving experts by experience both in the provision and evaluation of hospital services. This trajectory includes several qualitative methods such as observations, interviews and group meetings (Bate & Robert, 2006).

The involvement of experts by experience was evaluated using a pre-test post-test study design. Three hospital wards were included as intervention groups and two others as control groups. Not only questionnaires, but also group meetings and individual semi-structured interviews were conducted to identify the drivers and outcomes of an involvement of experts by experience.

2.3 Research setting

Although this was a mono-centric study, the setting of a university hospital, which consists of several campuses and hospital services each with their own culture, closely resembled a multi-centric study. The hospital was selected purposively as we searched for an organization which supports the idea of patient participation. The hospital services were also selected purposively, for the same reason. Since this was an explorative study, we aimed for maximum variation in hospital services as well as respondents. The selection process was completed as follows. The hospital’s department of healthcare quality distributed a call to all hospital services. Those willing to participate (n=5) in the project had to motivate their interest through an interdisciplinary motivational letter. Subsequently, three hospital services with a totally different target group (e.g. young people versus adults, residential versus ambulatory care, acute versus chronic conditions), with different structures and processes, at three different campuses, were selected, thus ensuring maximum variation. As a result, the study included a hospital service for patients with an amputation or spinal cord injury (department of physical and rehabilitation medicine), a centre for haemodialysis (department of nephrology) and an ambulatory centre for patients with atopic eczema (department of dermatology).

Thirteen experts by experience were recruited, in collaboration with a clinical nurse specialist, head nurse or supervisor, and through various patient associations. They were selected based on an extensive selection process, which required them to write a motivational letter and complete a follow-up interview with three jury members and one observer. Ultimately, twelve experts by experience were selected. At a later stage, however, two additional experts by experience were involved for practical reasons.

2.4 Research phases

This research project consisted of four phases. Figure 3 provides a general overview, while the text below describes each phase in more detail.

Figure 3: Overview of research project

2.4.1 Phase 1: Taking stock

First, desk research and 17 interviews with ‘key informants’ provided insight into critical ingredients, preconditions, effects and best practices. In this process, different sectors were considered in different countries (e.g. Belgium, The Netherlands). Second, a web survey was used to investigate the ways in which members of patient organizations are involved in somatic health care. Third, the concepts of patient empowerment, patient participation, patient-centredness and expertise by experience were analyzed. After 18 months, this resulted in the description of the status quaestionis, an inventory of potential interventions that would enable experts by experience to be involved at the level of direct care as well as care organization, and a clarification of key concepts. Phase 1 was concluded by answering SRQ 1 and 2 (see Chapters 3, 4 and 5).

2.4.2 Phase 2: Co-designing interventions

2.4.2.1 Procedures

A co-design trajectory was conducted based on the principles of Experience Based Co-Design (Bate & Robert, 2006), responsive evaluation (Abma and Stake 2001) and empowerment evaluation (Fetterman & Wandersman 2007). This trajectory included eight stages: (1) clinical observations, (2)

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filmed interviews with patients and healthcare professionals, (3) editing of the interviews, (4) staff feedback event, (5) patient feedback event, (6) joint patient and staff event, (7) co-design groups, and (8) evaluation/celebration event (see Figure 4). Data collection in the hospitals services ranged from December 2015 to August 2016.

The principal researcher made observations for a total duration of 65h in three hospital services. A team of researchers conducted 45 filmed interviews of 1 to 2 hours in which patients and healthcare professionals described their experiences with the service and their aspirations concerning the involvement of experts by experience (Dobbels, 2017; Smets, 2016).

Audio recordings were transcribed verbatim and the data were analyzed thematically for each hospital service. The team of researchers viewed the filmed interviews independently to ensure analytical rigor and shared understanding of significant ‘touchpoints’ (Bate & Robert, 2006). The footage was edited to produce a composite 30 min. film for each service, representing all key reference points. These films served as a basis for the staff (n= 3) and patient (n=3) feedback meeting. Following these ‘homogeneous group meetings’, heterogeneous group meetings (n=3) were organized with staff and patients as well. Priorities were identified and both groups volunteered to join the co-design working groups (n=9) in order to further develop the intervention. Group meetings and co-design groups were moderated by a professional moderator and took 2 to 2.5 hours. At least one and sometimes two observers took field notes, which were analyzed to inform the subsequent meetings. As a result, the planned interventions were described in detail using a framework meant to identify the essential characteristics of an implementation strategy (Grol & Wensing, 2015).

A process evaluation was carried out during this co-design process (e.g. number of contact moments, degree of influence, context, etc.). On the basis of participatory observation, success factors and potential barriers of co-design were identified. Lessons learned in response to SRQ 3 were described in Chapter 6. To analyze the experiences of participants in the co-design trajectory, additional interviews (n=14) were conducted. These results were described in a Master’s thesis (Reynkens, 2018) and therefore we will not elaborate on this further.

Figure 4: Experience-Based Co-Design trajectory (adapted from Tsianakas et al., 2012)

2.4.2.2 Sampling strategy and recruitment In order to include patients with a less recent hospital experience in the co-design process, eight experts by experience were invited to participate. Furthermore, a varied multidisciplinary sample of 24 healthcare professionals was included, all closely involved in the patient’s care process. The exact number of respondents can be found in Table 1. Fifteen patients, hospitalized or with a recent hospital experience (< 1 month), were recruited through a clinical nurse specialist, head nurse or supervisor (6 in the rehabilitation center, 6 in the kidney center and 3 in dermatology).

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Table 2: Overview of the number of respondents per research method

3.4.3 Phase 3: Pilot / feasibility study 5

The intervention developed in the co-design groups (i.e. how to involve experts by experience) was tested in three hospital services of a university hospital. The interventions were implemented according to the stages of the ‘Model for Effective Implementation’ (Grol & Wensing 2015), followed by a process evaluation aimed to evaluate the success factors and challenges. As such, the intervention could be adjusted if necessary. The results are described in two Master theses (Ector, 2017; Leus, 2017).

A pretest-posttest control group design was used to measure patient empowerment, patient-centredness in health care and participation culture. Patients were surveyed using the Patient Activation Measurement Scale (Hibbard, Stockard, Mahoney, & Tusler, 2004; Rademakers, Nijman, van der Hoek, Heijmans, & Rijken, 2012), the Dutch Empowerment Questionnaire (Boevink, Kroon, & Giesen, 2008) and the Individualized Care Scale (Suhonen, Leino-Kilpi, & Välimäki 2005). Patient empowerment was measured by two of these measurement scales. The first one was the 13-item version of the Patient Activation Measurement (PAM13). The PAM13

5Pilot and feasibility studies are generally designed to test methods and procedures (pilot study) or their

feasibility (feasibility study) for later use on a large scale (Richards & Hallberg, 2015). Although we hope for

a follow-up study, currently no such large-scale study is foreseen. Yet, in our explorative study we include

dimensions of pilot and feasibility studies to deliver important insights which could be used to conduct

such large-scale follow-up studies in the future.

was originally developed and validated by Hibbard et al. (2004), after which it was translated and validated in Dutch by Rademakers et al. (2012). The second scale was the Dutch Empowerment Measurement Scale. This scale consists of six dimensions and 40 items, and it was developed and validated by Boevink et al. (2008). Following contact with the authors of the scale, only two subscales relevant to this research were included: ‘social support’ and ‘fitting in’ (13 items in total). Patient-centered care was measured by the Individualized Care Scale for Patients (ICS-Patient) (Suhonen, Leino-Kilpi, & Välimäki, 2010). This 34-item scale was developed and validated by Suhonen et al. (2000, 2005, 2006) and consists of two parts, each counting 17 items. Each part consists of three subscales: clinical situation, personal life situation and decisional control over care. The first part (ICS-A-Patient) evaluates patients’ perceptions on how nurses should support patients’ individuality through nursing activities. The second part (ICS-B-Patient) explores the degree to which the patient perceives his/her care as individual.

Healthcare professionals were surveyed using the Clinician Support for Patient Activation Measure (CS-PAM) (Hibbard, Collins, Mahoney, & Baker, 2010; Rademakers, Jansen, Van Der Hoek, & Heijmans, 2015), the Patient Participation Culture Tool (PaCT -HCW) (Malfait, Eeckloo, Van Daele, & Van Hecke, 2016) and the Individual Care Scale for Nurses (ICS-Nurse) (Suhonen, Gustafsson, Katajisto, Välimäki,

& Leino-Kilpi, 2010). Healthcare professionals’ belief of patient empowerment was measured using the Clinician Support for Patient Activation Measure (CS-PAM). The CS-PAM was developed and validated by Hibbard et al. (2010) and consists of 14 items. Subsequently, the scale was translated and validated in Dutch by Rademakers et al. (2015). Patient-centered care was measured by the Individualized Care Scale for Nurses (ICS-Nurse) (Suhonen et al., 2010). The ICS-Nurse was developed and validated by Suhonen et al. (2000,2005, 2006), and it consists of 34 items, two parts of 17 items each. Both these parts consist of three subscales: clinical situation, personal life situation and decisional control. The first part (ICS-A Nurse) evaluates nurses’ perceptions on how they support patients’ individuality through nursing activities in general. The second part (ICS-B Nurse) evaluates the degree to which their care is considered as individual. The Patient Participation Culture Tool for healthcare workers (PaCT-HCW) evaluated the patient participation culture in hospital wards. The PACT-HCW was developed and validated by Malfait et al. (2016), and it consists of 52 items divided into eight subscales: competence, support, perceived lack of time, information sharing and dialogue, types of questions: factual questions, types of questions: challenging questions, types of questions: notifying questions, and acceptance of a new role. However, only the ICS

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data are reported in this thesis, as the other data analyses are work in progress (see Chapter 8).

2.4.4 Phase 4: Evaluation

The intervention was systematically evaluated using responsive evaluation (Abma & Widdershoven, 2014). The responsive methodology is related to participatory research, but puts explicit emphasis on dialogue and relational empowerment (Nierse, Schipper, van Zadelhoff, van de Griendt, & Abma, 2012). All stakeholders collaborate, exchange knowledge and each perspective is equally valorized. Everyone is involved in constructing knowledge and facilitating a mutual learning process. In this way, participatory research aims to contribute to the empowerment of the persons involved. Two types of qualitative research techniques were combined: group meetings with health care staff and experts by experience to map barriers and success factors, as well as individual interviews with patients. As such, more information about their experiences, the conditions of the involvement of experts by experience was collected (see Chapter 7). Finally, the intervention was evaluated using data triangulation. Table 2 shows the exact number of respondents.

Table 3: Number of participants of the group and individual interviews

2.5 Literature

Abma, T., & Stake, R. (2002). Stake’s Responsive Evaluation: Core Ideas and Evolution. New Directions for Evaluation, 2001(92), 7–22.

Abma, T., & Widdershoven, G. (2014). Dialogical Ethics and Responsive Evaluation as a Framework for Patient Participation. The American Journal of Bioethics, 14(6), 27-29.

Bate, P, & Robert, G. (2006). Experience-Based Design: From Redesigning the System around the Patient to Co-Designing Services with the Patient. Quality & Safety in Health Care,15, 307–310.

Billiet, J., & Waege, H. (2003). Een Samenleving Onderzocht. Methoden van Sociaal-Wetenschappelijk Onderzoek. Antwerpen: de Boeck.

Boevink, W., Kroon, H. & Giesen, F. (2008). Empowerment: Constructie En Validatie van Een Vragenlijst. Utrecht.

Campbell, M., Fitzpatrick, R., Haines, A., Kinmonth,A.L., Sandercock, P., Spiegelhalter, D., & Tyrer, P. 2000). Framework for Design and Evaluation of Complex Interventions to Improve Health. British Medical Journal,321 (September), 694.

Craig, P., Dieppe,P., Macintyre,S., Michie, S., Nazareth I., & Petticrew, M. (2008). Developing and evaluating complex interventions: the new Medical Research Council guidance. British Medical Journal, 337:a1655.

Dobbels, L. (2017). Het introduceren van ervaringsdeskundigen binnen het zorgprogramma atopisch eczeem: een kwalitatief onderzoek naar de noden en wenselijkheden van patiënten en professionals. [Masterproef]. Ongepubliceerd manuscript, KU Leuven, Faculteit Sociale Wetenschappen.

Ector, S. (2017). Het inschakelen van ervaringsdeskundigen op het niercentrum. Een studie naar de bevorderende en belemmerende factoren. [Masterproef]. Ongepubliceerd manuscript, KU Leuven, Faculteit Sociale Wetenschappen.

Fetterman, D., & Wandersman, A. (2007). Empowerment Evaluation. American Journal of Evaluation 28 (2), 179–98.

Grol, R., & Wensing, M. (2015). Implementatie Effectieve Verbetering van Patiëntenzorg. Springer Media B.V.

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Hibbard, J.H., Collins,P.A., Mahoney,E. & Baker, L.H. (2010). The Development and Testing of a Measure Assessing Clinician Beliefs about Patient Self-Management. Health Expectations, 13 (1), 65–72.

Hibbard, J.H, Stockard, J., Mahoney, E.R. & Tusler, M. (2004). Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers. Health Services Research, 39 (4 Pt 1), 1005–1026.

Leus, E. (2017). Knelpunten en succesfactoren bij het inschakelen van ervaringsdeskundigen bij dermatologische aandoeningen en revalidatie in algemene ziekenhuizen. [Masterproef]. Ongepubliceerd manuscript, KU Leuven, Faculteit Sociale Wetenschappen.

Malfait, S., Eeckloo,K., Van Daele, J. & Van Hecke, A. (2015). The Patient Participation Culture Tool (Pa2CT) for General Hospital Wards: A Development and Psychometric Validation Study. The International Journal of Nursing Studies, 61, 187-197.

Meyer, J. 2000. Using Qualitative Methods in Health Related Action Research. British Medical Journal,320 (January): 178–81.

Nierse, C.J., Schipper, K., van Zadelhoff, E., van de Griendt, J., & Abma, T.A. (2012). Collaboration and co‐ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team. Health Expectations, 15(3), 242–254.

Nilsen, E.S., Myrhaug, H.T., Johansen, M., Oliver,S., & Oxman, A.D. (2010). Methods of Consumer Involvement in Developing Healthcare Policy and Research, Clinical Practice Guidelines and Patient Information Material (Review). The Cochrane Database of Systematic Reviews, no. 1: CD004563.

Rademakers, J., Jansen, D., Van Der Hoek, L. & Heijmans, M. (2015). Clinicians’ Beliefs and Attitudes toward Patient Self-Management in the Netherlands; Translation and Testing of the American Clinician Support for Patient Activation Measure (CS-PAM). BMC Health Services Research 15 (1), 1–7.

Rademakers, J., Nijman,J. van der Hoek, L., Heijmans, M., & Rijken, M. (2012). Measuring Patient Activation in The Netherlands: Translation and Validation of the American Short Form Patient Activation Measure (PAM13). BMC Public Health 12, 577.

Reason, P., & Bradbury-Huang, H. (2001). The SAGE Handbook of Action Research: Participative Inquiry and Practice. Thousand Oaks: Sage.

Richards, D.A., & Hallberg, I.R. (2015). Complex Interventions in Heal th. An overview of research methods. New York: Routledge.

Reynkens, W. (2018). Experience-based co-design vanuit een empowermentperspectief. Ervaringen met Experience-based co-design op ziekenhuisafdelingen gericht op langdurige zorgnoden. [Masterproef]. Ongepubliceerd manuscript, KU Leuven, Faculteit Sociale Wetenschappen.

Smets, L. (2016). De inzet van ervaringsdeskundigen in het niercentrum: een studie naar de noden en wenselijkheden van patiënten en professionals. [Masterproef]. Ongepubliceerd manuscript, KU Leuven, Faculteit Sociale Wetenschappen.

Van Regenmortel, T. (2011). Lexicon van empowerment. Marie Kamphuis Stichting: Utrecht.

Small, S.A. (1995). Action-Oriented Research : Models and Methods. Journal of Marriage and Family 57 (November), 941–55.

Suhonen, R., Gustafsson, M.L., Katajisto, J., Välimäki, M., & Leino-Kilpi, H. (2010). Individualized Care Scale - Nurse Version: A Finnish Validation Study. Journal of Evaluation in Clinical Practice, 16 (1), 145–54.

Suhonen,R ., Leino-Kilpi, H., & Välimäki, M. (2005). Development and Psychometric Properties of the Individualized Care Scale. Journal of Evaluation in Clinical Practice 11 (1), 7–20.

Suhonen, R., Schmidt, L.A., Radwin, L. (2007). Measuring Individualized nursing care: assessment of reliability and validity of three scales. Journal of Advanced Nursing 59(1–2), 77–85.

Suhonen, R., Välimäki, M., Katajisto, J. (2000). Developing and testing an instrument for individual care. Journal of Advanced Nursing, 32(5), 1253–1263.

Suhonen, R., Välimäki, M., Katajisto, J., Leino-Kilpi, H. (2006). Patient characteristics in relation to perceptions of how individualized care is delivered-research into the sensitivity of the Individualized Care Scale (ICS). Journal of Professional Nursing, 22(4), 253–261.

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Suhonen, R., Schmidt, L.A., Radwin, L. (2007). Measuring Individualized nursing care: assessment of reliability and validity of three scales. Journal of Advanced Nursing 59(1–2), 77–85.

Swanborn, P.G. (1999). Evalueren. Het Ontwerpen, Begeleiden En Evalueren van Interventies: Een Methodologische Basis Voor Evaluatie-Onderzoek. Amsterdam: Boom.

Tambuyzer, E., Pieters, G. & Van Audenhove, C. (2011). Patient Involvement in Mental Health Care: One Size Does Not Fit All. Health Expectations, 17 (1), 138–50.

Tsianakas, V., Robert, G., Maben, J., Richardson, A., Dale, C., & Wiseman, T. (2012). Implementing patient-centred cancer care: using experience-based co-design to improve patient experience in breast and lung cancer services. Support Care Cancer, 20, 2639– 2647.

Waterman, H., Tillen, D., Dickson,R., & de Koning, K. (2001). Action Research: A Dynamic Discipline for Advancing Professional Goals. Health Technol Assess,5 (23), 465–470

Ziebland, S., Coulter, A., Calabrese, J.D., & Locock, L. (2013).Understanding and Using Health Experiences. Improving patient care. Oxford: Oxford University Press. 3Patient empowerment,

patient participation and patient centerednessin hospital care: a concept analysis based on a literature review

Chapter

This chapter is published as: Castro, E. M., Van Regenmortel, T., Vanhaecht, K., Sermeus, W., & Van Hecke, A. (2016) ‘Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review’. Patient Education and Counseling, 9(12):1923-1939.

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3 Chapter 3: Patient empowerment, patient participation and patient- centredness in hospital care: a concept analysis based on a literature review

After publication of this chapter, an editorial was published to stress the importance of conceptual clearness when developing research, practices and policies (Funnell, 2016).

“The important work of Castro et al is a cogent and comprehensive reminder that words matter. Patient-empowerment, patient-centered care and patient participation are not just new words to describe existing models of care and education.” (Funnell, 2016).

3.1 Abstract

Objectives: The concepts of patient empowerment, patient participation and patient-centeredness have been introduced as part of the trend towards a more participatory health care and have largely been used interchangeably. Although these concepts have been discussed for a number of years, their exact meaning in hospital care remains somewhat unclear. This absence of theoretical and conceptual clarity has led to (1) poor understanding and communication among researchers, health practitioners and policy makers and (2) problems in measurement and comparison between studies across different hospitals. Methods: This paper examines all three concepts through a concept analysis based on the method of Avant and Walker (2005) and the simultaneous concept analysis of Haase et al. (1992).Results: Through these methods, the antecedents, attributes, consequences and empirical referents of each concept are determined. In addition, similarities and differences between the three concepts are identified and a definition offered for each concept. Furthermore, the interrelatedness between the key concepts is mapped, and definitions are proposed. Conclusions: It can be concluded that patient empowerment is a much broader concept than just patient participation and patient-centeredness. Practice implications: The present study may provide a useful framework that researchers, policy makers and health care providers can use to facilitate patient empowerment.

3.2 Keywords

Patient participation, Patient-centeredness, Patient empowerment, Concept analysis

3.3 Introduction

Patient empowerment is a concept that was introduced to allow patients to shed their passive role and play an active part in the decision-making process about their health and quality of life. The concept is rooted in social action and associated with community interests and attempts to increase the autonomy, power and influence of oppressed groups such as the poor, working class residents, women and ethnic minorities (Kieffer, 1983). During the 1960s civil rights movement, the concept further expanded by emphasizing the rights and abilities of individuals and communities rather than focusing on their deficits and needs (Rappaport, 1987). In the 1970s and 1980s, the idea of empowerment was embraced by the self-help movement (Kieffer, 1983) and it has continued to grow ever since. Over the last three decades, a series of policy changes paved the way for the international attention patient empowerment currently attracts. Like other supranational organizations, the World Health Organization (World Health Organization, 2010) has developed guidelines that emphasize that patients’ voices should be heard (World Health Organization, 1986). The emphasis is on assisting people in gaining control over the factors that might affect their health. Both individual and collective empowerment are emphasized as critical to patients’ ability to control their own lives.

Against the backdrop of this desire to empower patients, a tendency towards more patient participation has developed. At the root of this trend are developments in legislative regulations and policies, and evolutions in society at large and health care (Tambuyzer, Pieters, & Van Audenhove, 2011). Patients or patient organizations are increasingly invited to take an active role in their own care as well as at more strategic levels, such as the organization of care. Patients have come to be seen as experts on their own bodies, symptoms and situations. Patients’ experiential knowledge is now considered to be complementary to professionals’ knowledge (Caron-Flinterman, Broerse, & Bunders, 2005; Thomasina Borkman, 1976) and important for the success of the treatment and improving the quality of care (Coulter, 2007; Embuldeniya et al, 2013; Loder, 2013). By inviting patients to participate in care decisions, the gap between the professional knowledge and the knowledge by experience can be bridged, while health care becomes more patient-centered (Kofahl, Trojan, Knesebeck, & Nickel,

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2014). In 1969, Balint introduced patient-centered medicine in the medical field as “another way of medical thinking”. Doctors were required to include everything they knew about their patient in their diagnosis and treatment. The focus was not only on medical-technical aspects but also on emotional, spiritual and relational dimensions (Balint, 1964; Holmström & Röing, 2010). Since 2001, patient-centeredness is one of the six improvement goals to enhance quality of care in health care systems listed in Crossing the Quality Chasm: A New Health System for the 21st Century (Institute of Medicine, 2001). It is viewed as an approach that respects the individuality, values, ethnicity, social background and information needs of the patient. Although patient-centeredness has for decades been the focus of research and health policy developments, there is no real consensus on its definition.

In research literature, patient empowerment, patient participation and patient-centeredness have been buzz concepts for quite some time now. Despite the popularity of these three terms, existing scientific literature offers no univocal definitions for these concepts (Anderson & Funnell, 2010), and it is unclear how they are related (Chatzimarkakis, 2010; Groene et al, 2010). This paper intends to clarify the meaning of the overlapping concepts of patient empowerment, patient participation and patient-centered(ness) by highlighting their interrelationship and distinguishing their antecedents, attributes, consequences and empirical referents, and this with the aim of improving understanding between different groups of health care professionals in hospital care. A second goal of this paper is to suggest a definition as well as a process model for these three key concepts.

A plethora of terms are used in existing literature to refer to the concept of patient empowerment, patient participation, patient-centeredness and the ‘users’. For the purpose of clarity, this paper exclusively uses the term ‘patient’ to refer to users.

3.4 Methods

3.4.1 Search strategy concept analysis

The search strategy of this concept analysis included a protocol driven search, combined with a secondary search (snowballing), following the recommendations of Greenhalgh and Peacock (Greenhalgh, 2005). Original articles as well as theoretical and conceptual articles were consulted. We looked at peer-reviewed papers in medical, sociological, psychological and nursing literature. Four databases were searched (Pubmed, Web of Science, Embase and Jstor) with the following keywords entered: ‘patient

empowerment’, ‘patient participation’, ‘patient-centered’ or ‘patient-centeredness’, and this with and without the search term ‘conceptual definition’. The search was limited to references published in English, and only articles published in the last 10 years were included. Since this resulted in a large number of articles, the search was limited to articles that listed the search terms in their title.

3.4.2 Eligibility criteria

Publications with a conceptual definition or framework of patient empowerment, patient participation or patient-centeredness were included in the literature study. Definitions or frameworks were considered to be conceptual if they specified ‘what needs to be assessed in empirical evidence’ (Jaccard & Jacoby, 2010).

First, titles and abstracts were screened to exclude irrelevant records. Second, full text articles were retrieved for all selected records. Third, the full texts were screened to see whether they fulfilled the inclusion criteria. Articles that showed how these concepts were understood, described and operationalized were included. Articles that were retrieved by applying the snowball method and those considered as seminal papers whether they were published more than 10 years ago or not were also included. Literature on nursing home or residential or aged care was excluded because this did not fit within the scope of this study. As the aim was to identify a broad range of conceptual definitions used in the literature, no further assessment of the validity or quality of the full text was conducted. This selection process continued until a saturation point was reached in terms of breadth of understanding and descriptions. When no new information emerged after three papers, the search was ceased. Finally, all the definitions were screened by two peers from the same research unit who evaluated the definitions’ appropriateness. The result was that 20 definitions of patient empowerment, 13 definitions of patient participation and 20 definitions of patient-centeredness were included (Appendix A). Figure 5 shows the flow diagram detailing the search process and inclusion of papers in this review.

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Figure 5: The search process and inclusion of papers

3.4.3 Concept analysis

Concept analysis is widely viewed as a process that informs theory development and facilitates communication (Morse, 1995). After a brief comparative study of different approaches, a combination of Walker & Avant (Haase, Britt, Coward, Leidy, & Penn, 1992) and the simultaneous concept analysis (SCA) of Haase et al (Haase et al., 1992) seemed the most appropriate approach to identify unique characteristics and relationships of ambiguous concepts. The strength of the method of Walker & Avant is that it provides a structural guideline (Nuopponen, 2010). In combination with SCA the method offers the advantages of clarifying all concepts simultaneously and distinguishing between their characteristics, leading to mutually exclusive definitions as the basis of a theoretical process model. Moreover it reflects diverse perspectives of concepts to obtain a generic view of those concepts. SCA is an extensive method leading to an in-depth analysis as it includes continuous validation of the concepts during the analysis. Therefore it offers greater understanding of the meaning of individual concepts and the processes that may underlie their characteristics. The analysis was comprised of the five steps shown in Figure 6. Figure 6: Method concept analysis

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3.5 Results

3.5.1 Patient empowerment

3.5.1.1Definitions

Patient empowerment is a very complex and paradoxical concept: it is situated at several levels (micro, meso and macro), can be approached from several perspectives (the patient, the health care provider or the health care system) that lead to different interpretations (a theory, a process, an intervention, an outcome, a feeling or a paradigm) and surfaces in several areas (e.g. (mental) health and welfare) and disciplines (psychology, sociology, nursing and social work). Different definitions, each with a different emphasis, are consequently in use (Barr, Scholl, Bravo, Faber, & Elwyn, 2015).

3.5.1.2 Antecedents

A dialogue between health care providers and patients is the first antecedent to patient empowerment. Health care providers should communicate effectively (Aujoulat, d’Hoore, & Deccache, 2007; Dowling, Murphy, Cooney, & Casey, 2011; Small, Bower, Chew-Graham, Whalley, & Protheroe, 2011). The focus should be on the co-creation of knowledge rather than just a transference of knowledge (Aujoulat, Marcolongo, Bonadiman, & Deccache, 2008).

A patient-centered approach is the second antecedent to empowerment. In the literature, it is even seen as a prerequisite for the empowerment process (Anderson & Funnell, 2010; Holmström & Röing, 2010; Piper, 2010). This approach calls for customization of care according to individual needs, desires and circumstances of patients (Institute of Medicine, 2001). The concept of “patient-centeredness” is discussed later in this paper.

The third antecedent concerns the enhancement of patients’ competences so that they own the necessary knowledge, skills and attitudes to make choices on issues they define as important. According to Aujoulat (Aujoulat, d’Hoore et al., 2007), health care professionals can promote these competences by supporting and strengthening their patients. Promoting a sufficient level of health literacy (Barr, Scholl, Bravo, Faber & Elwyn, 2015; Schulz & Nakamoto, 2013) seems to be essential to this.

As a core aspect of patient empowerment, active participation is the fourth antecedent (Dowling et al., 2011). Participation is seen as a crucial

dimension as it is often used interchangeably with patient empowerment (e.g. by Anderson & Funnell, 2010). Without patient participation, it is impossible to promote patient empowerment in hospital care. Hence, patient empowerment is a personal process that one completes independently; health care providers can only support this process by involving patients in decisions that affect their quality of life (Holmström & Röing, 2010). They can act as coaches by providing condition specific information, helping patients to develop change skills, promoting behavior change strategies and encouraging patients to develop self-confidence (Hendriks & Rademakers, 2014; Hibbard & Mahoney, 2010).

3.5.1.3 Attributes

Several authors define patient empowerment as an enabling process (Chatzimarkakis, 2010; McAllister, Dunn, Payne, Davies, & Todd, 2012; Small et al., 2011). By providing tools, techniques and support as in for instance self-management interventions, the enabling process can be facilitated (Chatzimarkakis, 2010; McCorkle et al., 2011 ).

A second attribute of patient empowerment is achieving personal change in relation to others. Feste and Anderson (Feste & Anderson, 1995) stated that the empowerment philosophy is based on the assumption that in order to be healthy, people must be able to effect changes. This is not only true of their personal behavior, but also of their social environment and the organizations (e.g. hospitals) that influence their lives.

The third attribute is self-determination as most definitions of patient empowerment include some conceptualization of self-determination (Aujoulat et al., 2007; Aujoulat et al., 2008; Feste & Anderson, 1995). Since the underlying philosophy of empowerment-based interventions is that people have the right and ability to make their own choices, self-determination is a guiding principle of empowerment-based interventions (Aujoulat, Luminet, & Deccache, 2007). Moreover, many authors cite self-determination theory as the underlying theory for patient empowerment implying that patients are self-determining agents who have the ability for autonomy. This is in contrast to the paternalistic concepts such as adherence and compliance (McAllister et al., 2012).

3.5.1.4 Consequences

A successful empowerment process can occur when patients come to terms with their threatened sense of security and identity (Aujoulat et al., 2007). Therefore, an integrated self is the first consequence of patient empowerment. Through interaction with their peers or health care providers,

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patients can develop new perspectives by reframing and reinterpreting their illness, which in turn leads to better adjustment to their long-term condition (Barr et al., 2015). A sense of inner strength and the development of a renewed and valuable sense of the self can be another result (Aujoulat et al., 2008; Dowling et al., 2011).

Lack of medical knowledge and loss of control over one’s body are seen as the main factors behind patients’ feelings of powerlessness (Aujoulat et al., 2007). Conversely, patient empowerment is seen as a process that results in patients’ gaining more control over their lives (Aujoulat et al., 2007). Therefore, the second consequence is a sense of mastery and control. Three types of patient control can be distinguished: cognitive control, decisional control and behavioral control (McAllister et al., 2012).

Achieving self-management is one of the most frequent consequences associated with patient empowerment (Aujoulat et al., 2008; Aujoulat, Young, & Salmon, 2012; Funnell & Anderson, 2004; Small et al., 2011). Sometimes the term self-management is even used interchangeably with patient empowerment (Asimakopoulou, Gilbert, Newton, & Scambler, 2012; Chatzimarkakis, 2010). Self-management refers to “the individual’s ability to manage symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition and to affect the cognitive, behavioral and emotional responses necessary to maintain a satisfactory quality of life. Thus, a dynamic and continuous process of self-regulation is established” (Barlow, Wright, Sheasby, Turner, & Hainsworth, 2002). It can be seen as an aspect of a sense of mastery and control. It has been defined in various ways but all existing definitions go beyond simply following medical advice: patients are encouraged to attain self-management in order to achieve mastery over their lives as well as maximum health and wellness (McCorkle et al., 2011). Moreover, patients that view themselves as managers of their own health, are more likely to engage in healthy behaviors (Hibbard & Mahoney, 2010).

Finally, improved quality of life is a long-term consequence of patient empowerment (Barr et al., 2015).

3.5.1.5 Empirical referents

There is no universally accepted generic measurement instrument for patient empowerment. Most of the existing measurement scales focus on particular conditions such as diabetes (Anderson, Funnell, Fitzgerald, & Marrero, 2000) and cancer (Bulsara, Styles, Ward, & Bulsara, 2006), or on specific contexts such as rehabilitation (Rogers, Chamberlin, Ellison, & Crean, 1997) or primary care (Howie, Heaney, Maxwell, & Walker, 1998).

The Health Care Empowerment Questionnaire (Gagnon, Hibert, Dubé, & Dubois), the Patient Enablement Instrument (Howie et al., 1998) and the Patient Activation Measure (Hibbard, Stockard, Mahoney, & Tusler, 2004) are examples of generic validated instruments. Questionnaires differ depending on the framework and the constructs used (McAllister et al., 2012). The measured outcomes are therefore limited to one aspect of patient empowerment such as ‘activation levels’ (Hibbard et al., 2004), self-management (Lorig, Ritter, Villa, & Armas) or self-efficacy (A. Rogers et al., 2008). Barr et al. (Barr et al., 2015) recently identified a range of constructs that have been operationalized in patient empowerment questionnaires. They stated that patient empowerment was differently conceptualized across the included measurement scales and found 38 distinct constructs in 19 measurement scales. They classified the constructs into four domains: patient states, experiences and capacities; patient actions and behaviors; patient self-determination within the health care relationship and patient skills development.

Based on our concept analysis, we found nine different empirical referents related to patient empowerment. Some of these empirical referents are presented in Table 4. They were derived from their associated measuring scale and linked to their corresponding dimension. This is not an exhaustive list.

Table 4: Patient empowerment: empirical referents and their associated measuring scale

Figure 7 presents an overview of antecedents, attributes, consequences and empirical referents of patient empowerment.

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Figure 7 presents an overview of antecedents, attributes, consequences and empirical referents of patient empowerment.

3.5.1.6 Proposeddefinitionofpatientempowerment

In line with the Ottawa Charter on Health Promotion (World Health Organization, 1986), patient empowerment has an individual and collective component. Based on the above analysis, the following comprehensive definition of patient empowerment is proposed:

• Individual patient empowerment is a process that enables patients to exert more influence over their individual health by increasing their capacities to gain more control over issues they themselves define as important.

• Collective patient empowerment is a process that gives groups the power to express their needs and take action to meet those needs and improve their quality of life.

3.5.2 Patient participation

3.5.2.1 Definitions

The term patient participation seems to be used interchangeably and synonymously with patient involvement, user participation and user involvement. The first framework of participation, the well-known participation ladder of Arnstein (Arnstein, 1969), shows the different degrees of influence, from manipulation to citizen control, the highest rung on the ladder. The degree of influence increases as one ascends the ladder.

Just like patient empowerment, the concept of patient participation is used at different levels: micro (individual care), meso (service development; planning, delivery and evaluation of care; education and training of health care providers) and macro (policy). Each level is associated with a range of types and activities of participation. Tritter (Tritter, 2009) distinguished between five different types of participation: (1) individual patient participation in treatment decisions, (2) involvement in service development, (3) integration of user perspectives in the evaluation of services, (4) participation in education and training and (5) participation in research activities. For each type of participation, several definitions can be found in the literature.

3.5.2.2 Antecedents

The first antecedent, being informed, is an obvious one (Forbat, Cayless, Knighting, Cornwell & Kearney, 2009; Haywood, Marshall, & Fitzpatrick, 2006; Millar, Chambers & Giles, 2015; Sahlsten, Larsson, Lindencrona, & Plos, 2005; Sahlsten, Larsson, Sjöström & Plos; Tambuyzer et al., 2011) The information that is exchanged has to be meaningful, understandable and individually adapted (Eldh, Ekman, & Ehnfors, 2006).

Education and support for patients and health care providers is the second antecedent. Both are crucial to a successful participation process as both groups need to have the right skills, knowledge and attitudes (Johnson, Conway, Edgman-Levitan, Pat Sodomka, & Ford, 2008; Sahlsten et al.; Tambuyzer et al., 2011).

A facilitating management and supportive care environment should be in place. Sufficient resources are often mentioned as a requirement. Both time and financial resources should be available to ensure successful patient participation (Tambuyzer et al., 2011). Formal structures and processes (e.g. clear guidelines) similarly need to be developed and institutionalized to provide ongoing, systematic opportunities for patients to participate in

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decision making (Tambuyzer et al., 2011).

Health care providers need to develop a positive attitude towards patient participation. Patient participation requires responsiveness to the patient and valuing of his strengths and expertise. It requires professionals to see patients’ knowledge as equal and complementary (Eldh et al., 2011; Millar et al., 2015; Rise, Grimstad, Solbjør & Steinsbekk, 2011; Tambuyzer et al., 2011).

3.5.2.3 Attributes

Patient participation is characterized by the involvement of patients at different participation levels in the decision making process that affects their lives (Johnson et al., 2008; Groene et al., 2010). Participation in decision-making is understood as partaking in decisions related to patients’ condition (through informed consent or a therapy plan) and decisions related to more strategic levels such as service development.

Patient participation revolves around active engagement in a mix of activities (Coulter, 2011; Coulter et al., 2013; Haywood et al., 2006; Millar et al., 2015; Small et al., 2011). Throughout all aspects of the participation process, participation requires activation of both the health care provider and patient. This engagement includes several types of action and several methods (e.g. shared decision making, taking part in focus groups, representation in official bodies).

Many authors stress the importance of working in partnership to successful patient participation (Coulter et al., 2013; Forbat et al., 2009; Millar et al., 2015). In order to achieve a partnership, the patient’s view as an expert must be considered important (Tambuyzer et al., 2011). In dialogue, a bilateral exchange of experiences and knowledge between patients and health care providers should take place (Rise et al., 2011). This partnership entails mutual trust and respect (Eldh et al.; Sahlsten et al.).

3.5.2.4 Consequences

Several initiatives that have implemented patient participation suggest its effects on quality of care are positive with higher accessibility (Crawford et al., 2002; Fudge, Wolfe, & McKevitt, 2008; Nilsen, Myrhaug, Johansen, Oliver, & Oxman, 2006), increased patient safety (Longtin et al., 2010) and increased patient satisfaction (Fudge et al., 2008; Sahlsten et al.). Health care providers appear to have more empathy and better communication skills (Tempfer & Nowak, 2011), which in turn result in better informed and empowered patients (Lloyd-Evans et al., 2014; Taylor, Gutteridge, & Willis, 2015).

3.5.2.5 Empirical referents

Instruments that measure patient participation at the individual level, and more specifically shared decision-making, are the ones most commonly used in the literature. Examples are: the Observing Patient Involvement in Decision Making Scale (OPTION) (Elwyn et al., 2003) and the Shared Decision Making Questionnaire (Kriston et al., 2010). A systematic review of reliable and valid tools for measurement of patient participation in health care (Phillips, Street, & Haesler, 2015) found four scales that measure ‘the patient as an expert of his or her own care needs’: e.g. the Patient Participation Emergency Department Questionnaire (Frank, Asp, Fridlund, & Baigi, 2011). The literature did not produce generic validated measurements that specifically capture the impact of patient participation in shaping health and social care services (Mockford, Staniszewska, Griffiths, & Herron-Marx, 2012). Particularly in the field of mental health, the Consumer Participation Questionnaire (Read, 1998) measures consumer involvement in the planning, management and evaluation of mental health services, and the attitudes of mental health workers towards consumer participation. Based on our concept analysis, we found four different empirical referents related to patient participation (Table 5). They were derived from their associated measuring scale and linked to their corresponding dimension. This is not an exhaustive list.

Table 5: Patient participation: empirical referents and their associated measuring scale.

Figure 8 presents an overview of antecedents, attributes, consequences and empirical referents of patient participation.

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Figure 8: Overview of antecedents, attributes, consequences and empirical referents of patient participation

3.5.3 Proposeddefinitionofpatientparticipation

Following the results of the concept analysis, the following definitions for patient participation are proposed:

• Individual patient participation revolves around a patient’s rights and opportunities to influence and engage in the decision making about his care through a dialogue attuned to his preferences, potential and a combination of his experiential and the professional’s expert knowledge.

• Collective patient participation is the contribution of patients or their representing organizations in shaping health and social care services by means of active involvement in a range of activities at the individual, organizational and policy level that combine experiential and professional knowledge.

3.5.4 Patient-centered(ness)

3.5.4.1 Definitions

Depending on the context, terms as client-centered, consumer-centered, user-centered, person-centered or family-centered are often used interchangeably. This array of concepts leads to confusion. Many definitions of patient-centeredness and a variety of models describing its dimensions

can be found in the literature. In addition, several concept analyses have attempted to clarify what patient-centeredness means (Hughes, Bamford, & May, 2008; Leplege et al., 2009; McCormack & McCance, 2006; Mead & Bower, 2000). Despite these efforts, a broad heterogeneity in definitions and conceptualizations continues to exist, so that patient-centeredness remains a fuzzy concept.

3.5.4.2 Antecedents

Several authors consider individual patient participation to be a crucial antecedent in patient-centeredness (Kitson, Marshall, Bassett, & Zeitz, 2013; Beach & Somnath, 2006; Shaller, 2007; Leplege et al., 2009; Lusk & Fater, 2013; McCormack & McCance, 2006; Scholl, Zill, Härter, & Dirmaier, 2014; International Alliance for Patients, 2007). As active partners and experts on their own situation and needs, patients should actively participate in determining their preferred outcomes.

Communication between the patient and caregiver is regarded as another central antecedent of patient-centeredness (Beach & Somnath, 2006; Groene et al., 2010; Ishikawa, Hashimoto, & Kiuchi, 2013; Scholl et al., 2014; Institute of Medicine, 2001). Several definitions consequently focus on patient-centered communication (Bauman, Fardy, & Harris, 2003; Epstein, Fiscella, Lesser, & Stange, 2010). Most interventions in this field similarly focus on enhancing caregiver-patient communication (Dwamena et al., 1996; Wiig et al., 2013) by improving health care providers’ general communication skills, e.g. verbal and non-verbal behavior (Scholl et al., 2014).

A caring environment has great impact on the operationalization of patient-centeredness (Kitson et al., 2013; McCormack & McCance, 2006; Morgan & Yoder, 2012). An organization culture that respects everyone’s values and choices is a crucial antecedent. It is determined by the attitudes and behaviors of the organizational management and has to support the committed-to vision of patient-centeredness (Morgan & Yoder, 2012). Hence, a patient-centered care climate has a positive influence on the health care provider’s competencies (attitude, skills and knowledge) (Morgan & Yoder, 2012). Examples are: being empathic, respectful, compassionate and non-judgmental (Millar et al., 2015; Scholl et al., 2014).

Finally, the literature review shows the importance of coordination and continuity of care (McWilliam, 2009; Scholl et al., 2014; Frampton et al., 2008). This implies good and interdisciplinary teamwork (Berghout, van Exel, Leensvaart, & Cramm, 2015; Shaller, 2007).

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3.5.4.3 Attributes

The first attribute, according to several published concept analyses, is the biopsychosocial perspective (Mead & Bower, 2000; Scholl et al., 2014; Stewart, 1995). A perspective combining biological, psychological and social dimensions is regarded as necessary to account for the full range of problems patients might experience. Providing care that considers the biopsychosocial perspective means exploring both the disease and illness experience, something that is also referred to as ‘holistic care’ (Morgan & Yoder, 2012).

Treating the patient as a unique person is the second attribute. Patient-centeredness is generally described as an approach to care that tries to see through the eyes of the patients and understand patients’ expectations, perceptions and experiences. It is generally seen as an approach that meets the specific needs, values and beliefs of patients (Epstein et al., 2010; Mead & Bower, 2000; Wolfe, 2001). Several authors referred to it as ‘individualized care’(Lusk & Fater, 2013; Morgan & Yoder, 2012; Scholl et al., 2014). The valued and essential characteristics of patient-centered care are empathy, listening and treating patients with dignity and respect, and regarding them as individuals (Berghout et al., 2015; Scholl et al., 2014).

In the analyzed literature, the sustainable and genuine patient-caregiver relationship is described as an essential attribute to achieving patient-centered care (Berwick, 2009; Kitson et al., 2013; Leplege et al., 2009; Mead & Bower, 2000; Morgan & Yoder, 2012; Pulvirenti, McMillan, & Lawn, 2014; Scholl et al., 2014; Stewart, 2001). Patient-centeredness is based on mutually beneficial partnerships between the patient, his family and the health care provider, and is characterized by open communication of knowledge. There is an exchange of experiential knowledge and clinical knowledge. Ridd et al. (Ridd, Shaw, Lewis, & Salisbury, 2009) characterized patients’ perspective on the doctor-patient relationship using four components: knowledge, trust, loyalty and regard.

3.5.4.4 Consequences

A patient-centered approach can improve health outcomes (Mead & Bower, 2000; Stewart, 2001; Venetis, Robinson, Turkiewicz, & Allen, 2009). Other reported outcomes are improved quality of care, for instance, increased patient satisfaction (Sidani, 2008), efficiency and a decrease in health care related costs (Coulter, 2007). Patient-centeredness is also associated with other positive outcomes such as enhanced adherence, improved illness-related knowledge and health behavior, and decreased health care utilization (Bertakis & Azari, 2011).

3.5.4.5 Empirical referents

A review of the Health foundation (de Silva, 2014) found five constructs of measurement scales of ‘person-centered care’: patient engagement, empathy and compassion, person-centered communication, supporting self-management and shared decision making. Several instruments are used to measure (aspects of) patient-centeredness. Some scales measure the broad holistic concept of patient-centeredness (e.g. the Individualized Care Scale); others focus on specific subcomponents (e.g. the Person-centered Climate Questionnaire). Based on our concept analysis, we found seven different empirical referents related to patient-centeredness (Table 6). They were derived from their associated measuring scale and linked to their corresponding dimension. This is not an exhaustive list.

Table 6: Patient-centeredness: empirical referents and their associated measuring scale.

Figure 9 presents an overview of antecedents, attributes, consequences and empirical referents of patient-centeredness.

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Figure 9: Overview of antecedents, attributes, consequences and empirical referents of patient-centeredness.

3.5.4.6Proposeddefinitionofpatient-centeredness

Based on the analysis above, patient-centeredness is a biopsychosocial approach and attitude that aims to deliver care that is respectful, individualized and empowering. It implies the individual participation of the patient and is built on a relationship of mutual trust, sensitivity, empathy and shared knowledge.

3.5.5 Similaritiesanddifferences

The multidimensional concepts of patient empowerment, patient participation and patient-centeredness all illustrate an important ideological shift from a paternalistic health care to an increasingly participation-based health care. The connecting thread when it comes to patient empowerment, patient participation and patient centeredness is a balance between the power of professionals and patients. Aside from power, interaction, relationship, communication and respecting patients’ voice proved to be key.

Besides the similarities, differences also exist. Empowerment has a political background. Patient-centeredness, unlike empowerment, originated from a medical context, more specifically that of psychology and

psychotherapy (Balint, 1964; Holmström & Röing, 2010). These differences in origins are also reflected in the different dimensions of the concepts and particularly at the level of their consequences. The consequences of patient empowerment go beyond the medical context (Bravo et al., 2015). In contrast to the consequences of patient- centeredness, patient participation developed from a combination of the origins described above: a series of social and clinical evolutions such as the increased accessibility of information and the socialization of care.

Another distinction can be made in terms of the organization levels. Patient empowerment and patient participation are multilevel concepts. They are mostly situated at the micro level but can also take place at the meso- and macro level. Patient-centeredness, however, is not a multilevel concept and is situated exclusively at the micro level. In addition, patient-centeredness is an empowering approach (Bravo et al., 2015) related to the caretaker perspective, while patient participation is more associated with the patient perspective as the patient experience is the key driver. Meanwhile, patient empowerment comprises both perspectives.

3.5.6 Process model

In figure 10 the interrelationship between the concepts patient empowerment, patient participation and patient-centeredness is shown. We can conclude that patient empowerment is a broader concept than just patient-centeredness and patient participation. It is a philosophy or a framework for thinking, and it can be considered as a meta-paradigm that connects more concrete paradigms. Patient-centeredness is an antecedent of empowerment (Anderson & Funnell, 2010; Holmström & Röing, 2010; Piper, 2010) while patient participation is often mentioned as a condition for patient-centered care (Shaller, 2007; Luxford et al., 2011) and patient empowerment (Van Regenmortel, 2009). Patient participation can be seen as a strategy to achieve a patient-centered care, which in turn can promote patient empowerment.

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Figure 10: Process model for concepts of patient empowerment, patient participation and patient-centeredness in health care.

3.6 Discussion and conclusion

3.6.1 Discussion

We generally found that use of explicit definitions was limited. Clearly distinguishing and separating the concepts is therefore a complex enterprise, as confirmed by a recent study by Fumagalli, Radaelli, Lettieri, Bertele & Masella (2015). This intricate relatedness reflects the historical roots and evolution of the concepts and can be explained by the close connections between the three concepts: patient participation is a strategy to achieve a patient-centered approach in health care and patient-centeredness seems to be a precondition to facilitating patient empowerment. In line with Barr et al. (Barr et al., 2015), we found similar principles and approaches for patient empowerment and patient-centeredness. In conclusion, the studied concepts should be seen as interrelated rather than as independent from each other.

In order to distinguish the different concepts from each other the authors had to make several choices. The reasoning behind these choices is described below. First, in contrast to some other concept analyses (Scholl et al., 2014), this study placed patient-centeredness exclusively at the micro level as a precondition for the multilevel concept of patient empowerment.

This was a choice the authors deliberately made to clarify the concepts vis-à-vis their theoretical roots. Patient empowerment, however, is a concept that derives from the multilevel concept of empowerment. Studies of empowerment depart from the assumption that people must take actions to improve their quality of life (Feste & Anderson, 1995). Not only at the level of their individual behavior, but also with respect to their social environment and the organizations that influence their lives. Empowerment is thus a relational construct that comprises different levels. Moreover, this focus on the individual might even foster the misconception that the patients themselves are the only ones responsible for their outcomes (Peterson & Zimmerman, 2004). These arguments call for a vision of patient empowerment that is much broader than just patient-centeredness. Patient-centeredness was furthermore introduced in psychotherapy (Rogers, 2003) and in the field of medicine (Balint, 1964) as an interaction process that departed from the point of view of the health care provider. As Mead & Bower (2000) state in their well-known conceptual framework, the practitioner-patient relationship is a key one. This concept is therefore exclusively situated at the micro level. The variance in conceptualization may reflect a difference between theoretical and practical definitions. In practice, the micro, meso and macro level are interrelated too.

Second, the authors chose to propose definitions that included both patients’ and professionals’ perspectives and that could be useful to the various disciplines involved in hospital care. This concept analysis therefore started from a multidisciplinary literature review that examined medical, sociological, psychological and nursing literature. However, some authors have argued that important differences in meaning exist, depending on who is using the concept and what context it is being used in (Kitson et al., 2013; Mead & Bower, 2000). In their view, different (professional) groups focus on different aspects in a reflection of the clinical conditions under which they work (Berghout et al., 2015). The result is a heterogeneity of measurement instruments. It is therefore not possible to make comparative evaluations of interventions (Lusk & Fater, 2013; McAllister et al., 2012). More generic definitions can counter this problem.

A distinction between the individual and collective level can incidentally be made when it comes to patient empowerment and patient participation. As the Ottawa Charter on Health Promotion (World Health Organization, 1986) states, both individual and collective empowerment are key drivers to having control. Individual empowerment means that individual patients take action to improve their life, while collective empowerment refers to patient groups taking action to improve their situation. In line with the WHO, the authors chose to propose separate definitions for individual and collective patient empowerment. Furthermore, both individuals and groups

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can participate (Tambuyzer et al., 2011; Tritter, 2009).Zimmerman (1995), one of the founders of psychological empowerment, proposed a nomological network of empowerment including intrapersonal, interactional and behavioral components. The behavioral component is about engaging in behaviors to exert control and is related to behavior theories such as the Patient Activation Theory. This theory provides guidance on supporting greater activation which ultimately can lead to effective selfmanagement and better health. By gaining confidence, success experiences and positive emotions patients can go through an upward spiral that is self-reinforcing (Hibbard & Mahoney, 2010). Yet we must differentiate between behavior theories and the empowerment approach. First, behavior theories such as the behavior change approach are rather paternalistic (Tengland, 2016) because the approach assumes that professionals determine problems and solutions. This might interfere with a patient’s autonomy and would be in contrast to the attribute ‘self-determination’ as the goals chosen by the professionals may not match with those of the patient.”

Furthermore, the behavior change approach risks leading to blaming and stigmatization. When professionals only focus on behavior and disregard underlying reasons for the lack of behavior change, they might assume that people themselves are to blame for their problems. Particularly when patients do not adapt their behaviors as recommended. In contrast with the behavior change approach the empowerment approach focuses not primarily on health but on quality of life and the determinants that might affect one’s quality of life. As shown by the results of our concept analysis, quality of life is a long-term consequence of patient empowerment. By not only focusing on ‘health’ but also on the determinants that might affect one’s quality of life (e.g. environmental support), the empowerment approach aims a wider range. Thus, even the focus is not specifically on health, facilitating the patients’ empowerment might increase patients’ health as it considers the determinants of quality of life related health such as the patients’ competences (Tengland, 2007, 2016).

This paper aims to bring clarity into the described conceptual vagueness in the literature. We propose three distinct definitions that capture the essential dimensions of the overlapping concepts patient empowerment, patient participation and patient-centeredness. Many definitions and models of the concepts only take into account one or some dimensions including antecedents, attributes, consequences and empirical referents. We consider all of them. Moreover, we propose a process model that shows the relationships between the three concepts. To our knowledge, no study have thoroughly analyzed these three concepts together and their inter-relatedness. This research is part of a study that focuses on the hospital

sector and therefore the analysis is limited to the hospital context. But when we compared our results with studies from other sectors (home care, primary care, care for the elderly) we found similar results (Davis, Schoenbaum, & Audet, 2005; Fotoukian, Mohammadi Shahboulaghi, Fallahi Khoshknab, & Mohammadi, 2014; Funk, Stajduhar, & Purkis, 2011; Little, 2001; Nygårdh, Wikby, Malm, & Ahlstrom, 2011; Paterson, 2001; Tralongo et al., 2011; Tutton, 2005). This might imply that our definitions are generalizable to other sectors and therefore this concept analysis might be a start towards consensus among several disciplines. Conceptual models stimulate knowledge expansion and provide research direction. More specifically, the validated concepts and relationships inform theory development. Subsequently, our theoretical model needs to be evaluated by empirically testing and validation by additional studies. First in a pilot or feasibility study, then in controlled studies (e.g. RCT) at several settings. This can lend itself to a meta-analysis in the future.

3.6.2 Study limitations

First, the subdivision of dimensions into antecedents, attributes and consequences was sometimes subjective and artificial. For example: in the concept analysis of patient empowerment, ‘active participation’ was seen as an antecedent of patient empowerment, while other authors like Shearer et al (Shearer, 2007) have seen it as an attribute. Secondly, we chose not to include synonyms in the search strategy of the analyzed concepts such as patient involvement, person-centered care or health empowerment, in order to keep the literature review manageable. Finally, we did not conduct a systematic evaluation of the quality of the included research articles. This decision was motivated by the wide variation in literature types and the inclusive nature of this concept analysis.

3.6.3 Conclusion

This study systematically analyzed the different definitions of patient empowerment, patient participation and patient-centeredness, and described these concepts by presenting the relevant historical perspectives, the defining attributes, antecedents, consequences and empirical referents. As a result, definitions and an integrative process model based on the relationships of these concepts were suggested. It can be concluded that patient empowerment is a much broader concept than patient-centeredness. It is a paradigm that approaches problems in a fundamentally different way. Patient-centeredness can be seen as a precondition for patient empowerment. By embracing patient participation

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as a strategy, health care can become more patient-centered, which in turn will facilitate patient empowerment.

3.6.4 Practice implications

The results of this study addressed some of the existing gaps in the literature. First, to our knowledge, these three concepts have never been analyzed together before. Such a simultaneous analysis may provide insight into patient empowerment, patient participation and patient-centeredness and the relation between all three. This will promote better understanding and communication about these concepts in practice and in research and policy contexts. Second, this concept analysis contributes to theory development by adding to previous studies, which limited themselves to comparing only a few definitions or solely focusing on one component of the broader concept.

3.7 Acknowledgements

We wish to acknowledge Peter Gielen and Carine Van Wanseele for proof reading this paper. We also acknowledge Frederik Knockaert and My Pham for their support with optimizing the frameworks.

3.8 AppendixA:Overviewdefinitionsand conceptual framework

Patient empowerment Definitions /conceptual frameworks

Anderson & Funnel (2010) Patients are equipped to make informed choices for themselves with sufficient skills and support from the health services.

Anderson & Funnel, 2005 The empowerment process is regarded as an individual’s discovery (and development) of their inborn capacity to control and take responsibility for their live.

Anderson et al (2010) Patient empowerment is a process designed to facilitate self-directed behavior change. The empowerment approach involves facilitating and supporting patients to reflect on their experience of living with diabetes. Self-reflection occurring in a relationship characterized by psychological safety, warmth, collaboration, and respect is essential for laying the foundation for self-directed positive change in behavior, emotions, and/or attitudes.

Aujoulat et al. (2007) Empowerment may be defined as a complex experience of personal change. It is guided by the principle of self-determination and may be facilitated by health-care providers if they adopt a patient-centered approach of care which acknowledges the patients’ experience, priorities and fears. In order to be empowering for the patient, therapeutic education activities need to be based on self-reflection, experimentation, and negotiation so as to allow for the appropriation of medical knowledge and the reinforcement of psychosocial skills.

Aujoulat et al. (2008) A process of personal transformation which occurs through a double process of (i) ‘‘holding on’’ to previous self-representations and roles and learning to control the disease and treatment, so as to differentiate one’s self from illness on the one hand, and on the other hand (ii) ‘‘letting go’’, by accepting to relinquish control, so as to integrate illness and illness-driven boundaries as being part of a reconciled self.

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Chatzimarkaki (2010) Empowerment means enablement, empowered patients need strong partnerships with doctors and caregiver, patient empowerment is a paradigm, not a technique.

Dowling et al. (2011) An operational definition for empowerment in this context therefore emphasizes equality in the relationship between the health care professional and the client, with the client viewed as an expert.

European Patinet’s Forum (EPF) (2015)

Empowerment is “a multi-dimensional process that helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.” Collective empowerment is “a process through which individuals and communities are able to express their needs, present their concerns, devise strategies for involvement in decision-making, and take political, social, and cultural action to meet those needs.

Feste & Anderson (1995) The empowerment philosophy is based on the assumption that to be healthy, people must be able to bring about changes, not only in their personal behavior, but also in their social situations and the organizations that influence their lives.

Funnel et al. (2004) We have defined the process of empowerment as the discovery and development of one’s inherent capacity to be responsible for one’s own life. People are empowered when they have sufficient knowledge to make rational decisions, sufficient control and resources to implement their decisions, and sufficient experience to evaluate the effectiveness of their decisions. Empowerment is more than an intervention or strategy to help people make behavior changes to adhere to a treatment plan. Fundamentally, patient empowerment is an outcome. Patients are empowered when they have knowledge, skills, attitudes, and self-awareness necessary to influence their own behavior and that of others in order to improve the quality of their lives.Empowerment is a patient-centered, collaborative approach tailored to match the fundamental realities of diabetes care. Patient empowerment is defined as helping patients discover and develop the inherent capacity to be responsible for one’s own life.

Gibson (1991) Empowerment is a social process of recognizing, promoting and enhancing people’s abilities to meet their own needs, solve their own problems and mobilize the necessary resources in order to feel in control of their own lives. Even more simply defined, empowerment is a process of helping people to assert control over the factors which affect their health

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Holmström & Roing (2009) The empowerment philosophy is based on the assumption that to be healthy, people must be able to bring about changes, not only in their personal behavior, but also in their social situations and the organizations that influence their lives.

Keleher (2007) Respect for culture, cultural and local sensitivity of programs, education materials and opportunities examined for their underlying assumptions about race and culture, a sense of community and local bonding, reinforcement of authentic participation, increase people’s skills and control over resources, use of lay leaders and helpers, fostering of advocacy and leadership development, time and space to identify structural barriers and facilitators to empowerment interventions, mechanism to overcome structural barriers and facilitators to empowerment interventions, understanding of the role of material and social forces that underpin constraints to good health conditions or personal health skills.

Lau (2002) Patient empowerment in the health care context means to promote autonomous self-regulation so that the individual’s potential for health and wellness is maximised. Patient empowerment begins with information and education and includes seeking out information about one’s own illness or condition, and actively participating in treatment decisions.

McAllister et al. (2012) Patient empowerment is a multi-dimensional construct: cognitive control, decisional control, behavioral control, emotional regulation, hope for the future.

Mok (2001) Connectedness, partnership with health care professionals, reinterpretation of the illness, and self-reliance. “Experience of empowerment is a process whereby they have strength, self-reliance and cognitive choices in coping with the illness and the situation they confront.

Piper (2010) The theme of empowerment suggested patient centered, holistic practice responsive to patient needs involving a reduction in the ‘social distance’ between the patient and the nurse and a move away from compliance based, nurse directed intervention and outcomes

Schulz & Nakamoto (2013) Spreitzer (1995) identifies four constructs inherent in empowerment—meaningfulness (or relevance), self-efficacy (or competence), self-determination (or choice) and impact. Schulz and Nakamoto adapted this set of measures to the health context. “What is central to this operationalization is that the components all highlight the subjective experience of empowerment and its force as a motivation for action. This distinguishes empowerment from literacy, which focuses on knowledge and abilities to use it”

Shearer (2007) A process of purposefully participating in health change: the empowerment process is a mutual process in human beings and their environment that generates an ongoing and innovative change.

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Small et al. (2013) An enabling process or outcome arising from communication with the health care professional and a mutual sharing of resources over information relating to illness, which enhances the patient’s feelings of control, self-efficacy, coping abilities and ability to achieve change over their condition. Empowerment is a psychological state that occurs as a result of effective communication in health care, and which acts as a determinant of consequent participation and self-management.

The Lancet (2012) A widely accepted as a process by which people are helped to use autonomous decision making in order to better self-manage their condition, gain control over their health and remain socially integrated.

Patient participation Definitions/conceptual frameworks

Sahlsten (2007) Mutuality in negotiation emerged as the core category for explaining nurses’ perspectives on patient participation in nursing care. It is characterized by four interrelated sub-core categories: interpersonal procedure, therapeutic approach, focus on resources and opportunities for influence. Mutuality in negotiation constitutes the dynamic nurse–patient interaction process.

Sahlsten (2008) An established relationship between nurse and patient, the surrendering of some power or control by the nurse, shared information and knowledge, and active engagement together in intellectual and/or physical activities.

Haywood et al (2006) An interaction, or series of interactions between a patient and the healthcare system or health care professional in which the patient is active in providing information to aid diagnosis and problem-solving, sharing his/her preferences and priorities for treatment or management, asking questions and/or contributing to the identification of management approaches that best meet his/her needs, preferences of priorities.

Tambuyzer et al (2013) Participation in decision making, the active character of involvement, involvement in a diverse range of activities, collaboration with professionals.

Forbat et al (2009) Engagement is further development, referring to working in partnership with service-users having them inform 1) service redesign/improvement, 2) policy, 3) research, 4) their own care/treatment. Engagement involves a collaboration which demands understanding rather than purely an information seeking process.

Millar et al (2015) An active partnership between service users and mental health professionals in decision making regarding the planning, implementation and evaluation of mental health policy, services, education, training and research. This partnership employs a person-centered approach, with bidirectional information flow, power sharing and access to advocacy at a personal, service and/or societal level

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Eldh et al (2010) Patient participation from the patients’ point of view relates to getting explanations and having knowledge of (a) plans, (b) where to turn for help and (c)what to do in order to feel well. As a result, the general focus on patient participation should be considered in relation to patients acquiring knowledge and having comprehension.

Rise et al (2011) Patient and public involvement is founded on mutual respect and is carried out through dialogue aiming to achieve shared decision making.

Groene et al (2010) Patient involvement is understood as the extent to which patients participate in decisions related to their condition (through informed consent, therapy plan or self-management) and contribute to organizational learning through their expert knowledge acquired during illness and hospitalization.

The Institute for Patient- and Fa-mily-Centered Care (IPFCC) (2008)

Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among patients, families, and health care professionals. These partnerships at the clinical, program, and policy levels are essential to assuring the quality and safety of health care.They define 4 core concepts: 1) Dignity and Respect, 2) Information Sharing, 3) Participation, 4) Collaboration

Coulter (2011) To promote and support active patient and public involvement in health and healthcare and to strengthen their influence on healthcare decisions, at both the individual and collective levels.

Coulter et al (2013) Patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system - direct care, organizational design and governance, and policy making - to improve health and health care.

Lathlean et al (2006) An active and equitable collaboration between professionals and service users concerning the planning, implementation and evaluation of series and education.

Tutton (2005) Dynamic process that changes over time and is integral to the work of nurses and carers. This process is carried out through facilitation, partnership, understanding the person and emotional work. Partnership is seen as an essential process that underpins participation by identifying the values and beliefs on which negotiation is based. Staff may make decisions for patients but these decisions are participatory through this dynamic process.

Patient-centeredness Definitions/conceptual frameworks

Bauman et al, 2003 Is about interactions and partnerships between health practitioner and patient, based on communication and a focus beyond specific conditions, on health promotion and healthy lifestyles.

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Beach et al (2006) (1) respect for patients’ values, preferences, and expressed needs; (2) coordination and integration of care; (3) information, communication, and education; (4) physical comfort; (5) emotional support and alleviationof fear and anxiety; (6) involvement of friends and family; and (7) transition and continuity.

Berwick (2009) Such care respects the individuality, values, ethnicity, social endowments, and information needs of each patient. The primary design idea is to put each patient in control of his or her own care. The aim is customization of care, according to individual needs, desires, and circumstances. It also implies transparency, with a high level of accountability of the care system to the patient.

European Patinet’s Forum (EPF) (2015)

Individual: the extent to which patients and their families or caregivers, whenever appropriate, participate in decisions related to their condition (e.g. through shared decision-making, selfmanagement) and contribute to organisational learning through their specific experience as patients.Collective: the extent to which patients, through their representative organisations, contribute to shaping the health care system through involvement in health care policy-making, organisation, design and delivery.

Institute of Medicine, 2001 Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.

Ishikawa et al, 2013 Patient-centered communication should be operationalized as the interaction between the patient and physician considering the specific context, rather than the independent behaviors of each party. In previous communication research, interactional measures of patient-centered communication have been proposed, such as the physician’s responsiveness to patient cues and concerns, the extent to which patient illness experience is discussed, and the common ground established between the patient and physician (Henbest and Stewart, 1989, Mead and Bower, 2000a and Stewart et al., 2000). Additionally, the degree to which physicians and patients have shared beliefs, emotions, and values as well as the degree to which they can articulate each other’s perspectives can be considered a maker of shared mind (Street & Haidet, 2011).

Leplege et al (2009) The principles underpinning person-centered care can be summarized as being concerned with treating people as individuals; respecting their rights as a person; building mutual trust and understanding and developing therapeutic relationships.

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Little et al (2001) There are at least three important and distinct domains of patient-centeredness: communication, partnership and health promotion.• Exploring the experience of disease and illness: patients’ ideas about the problem, feelings, expectations for the visit, and effects on function • Understanding the whole person: personal and developmental issues (for example, feeling emotionally understood) and the context (the family and how life has been affected)• Finding common ground (partnership): problems, priorities, goals of treatment, and roles of doctor and patient• Health promotion: health enhancement, risk reduction, early detection of diseaseEnhancing the doctor-patient relationship: sharing power, the caring and healing relationship

Longtin (2010) Conceptual framework

Lusk & Fater (2013) The provision of care incorporating contextual elements and including the attributes of encouraging patient autonomy, the caring attitude of the nurse, and individualizing patient care by the nurse. Attributes are encouraging patient autonomy, caring attitude of the nurse, and individualizing patient care by the nurse. Antecedents are the need for healthcare intervention and the ability of the patient or significant other to participate in his/her own care. Consequences are self-care ability and patient satisfaction.

McCormack & McCance (2006) The formation of a therapeutic narrative between professional and patient that is built on mutual trust, understanding and a sharing of collective knowledge.

McWilliam et al (2009) Lists additional elements from other approaches based on health promotion, accessibility of services, continuity of care and motivation of the patient. The aims are to encourage, enable and support patients to take responsibility for control of management of their conditions and growing patient autonomy in decision making to become ‘expert patients.

Mead & Bower (2000) (1) the caregiver gives attention to biological, psychological and social aspects of patients’ health, (2) the caregiver understands the ‘patient-as-person’, that illness has a personal meaning for each individual, (3) there is a sharing of power and responsibility between healthcare provider and patient, where the healthcare provider strives to be sensitive to, and is able to respond to patients’ needs for information and sharing in decision making, (4) there is a therapeutic alliance between healthcare provider and patient, in which common goals of therapy are developed and relationship between healthcare provider and patient is strengthened and (5) there is an awareness that the healthcare provider is also a person, and that the personal qualities and subjectivity of the healthcare provider may influence their practice of medicine.

Millar et al (2015) 5 key attributes: person-centered approach, informed decision making, advocacy, obtaining service user views and feedback and working in relationship.

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Morgan & Yoder (2012) PCC is a holistic approach to delivering care that is respectful and individualized, allowing negotiation of care, and offering choice through a therapeutic relationship where persons are empowered to be involved in health decisions at whatever level is desired by that individual who is receiving the care.

Picker Institute 8 principles: fast access to reliable health advice, effective treatment delivered by trusted professionals, involvement in decision and respect for preferences, clear, comprehensible information and support for self-care, attention to physical and environmental needs, emotional support, empathy and respect, involvement of, and support for family and carers, continuity of care and smooth transitions

Pulivirenti et al (2011) ‘Our review of PCC showed it to be understood variously as putting a person’s needs at the heath of the system, supporting people to make informed decisions, a focus on the relationship between the practitioner-patient relationship, a partnership approach, a valuing of people’s experiences and a process of empowerment.

Scholl et al (2014) The dimensions patient as a unique person, biopsychosocial perspective, essential characteristics of the clinician and clinician-patient relationship can be seen as underlying principles of patient-centered care. These principles can be implemented by a range of patient-centered activities, i.e. patient information, patient involvement in care, involvement of family and friends, patient empowerment, physical and emotional support. Furthermore, there are certain enablers, which, if present, can be helpful to implement these activities. They are clinician-patient-communication, integration of medical and non-medical care, coordination and continuity of care, access to care and teamwork and team building.

Shaller (2007) Education and shared knowledge, involvement of family and friends, collaboration and team management, sensitivity to non-medical and spiritual dimensions of care, respect for patient needs and preferences, free flow and accessibility of information.

Stewart (1995) Patient-centered clinical method: (1) exploring both the disease and the illness experience; (2) understanding the whole person; (3) finding commonground regarding management; (4) incorporating prevention andhealth promotion; (5) enhancing the doctor-patient relationship,and (6) ’being realistic’ about personal limitations and issues suchas the availability of time and resources.

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The International Alliance of Pa-tients’ Organizations (IAPO)

1)Respect – Patients, families and carers have a fundamental right to patient-centered healthcare that respects their unique needs, preferences and values, as well as their autonomy and independence. 2)Choice and empowerment – Patients have a right and responsibility to participate, to their level of ability and preference, as a partner in making healthcare decisions that affect their lives. 3) Patient involvement in health policy – Patients and patients’ organizations have a valuable role to play in healthcare policy-making through meaningful and supported engagement in all levels and at all points of decision-making, to ensure that they are designed with the patient at the centre. 4)Access and support – Access to safe, quality and appropriate services, treatments, preventive care and health promotion activities is needed with a commitment to equity so that all patients can access the appropriate treatments. 5)Information – Accurate, relevant and comprehensive information is essential to enable patients and carers to make informed decisions about healthcare treatment and living with their condition.

Wiig et al (2013) The term ‘patient-centered’ has been used to describe an approach in which the therapist ‘sees the situation through the eyes of the client’, attends to patients’ experiences with their illness, empathizes with their feelings and fears, or refers to professionals creating opportunities for and responding to patients’ desires for information and participation in treatment decision making.

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4Patients’ experiential knowledge and expertise in health care:a hybrid concept analysis

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This chapter is published as: Castro, E.M., Van Regenmortel, T., Sermeus,W., Vanhaecht, K. (2018). Patients’ experiential knowledge and expertise in health care: A hybrid concept analysis. Social Theory and Health, 1-24.

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4.1 Abstract

Background: Although the concept of experiential expertise is relatively new in modern health care services, policy and research, it has profound implications for improving participation in healthcare. The absence of theoretical and conceptual clarity has led to poor understanding and miscommunication among researchers, health practitioners and policy makers.

Objectives: The aim of this article is to present a concept analysis of experiential expertise and to explain its defining characteristics, applicability, and significance.

Method: A combination of Rodger’s evolutionary method combined with Schwartz-Barcott and Kim’s hybrid model was selected as a method for the analysis of the experiential expertise concept. This method combines theoretical (24 definitions) with empirical data analysis (17 interviews).

Results: Antecedents, attributes and consequences are determined. A comprehensive definition is provided and the interrelatedness between experiential expertise and related concepts was mapped.

Conclusions: Experiential expertise is a complex process exceeding the boundaries of individual experiences. Its availability cannot be taken for granted. Using experiential expertise in health care can facilitate patient empowerment leading to improved quality of life and health care. The present study offers clarity by proposing a conceptual model that can assist researchers, policy makers and health care professionals in facilitating implementations in practice.

4.2 Keywords

Experiential knowledge, Experiential expertise, Co-production, Concept analysis.

4 Chapter 4: Patients’ experiential knowledge and expertise in health care: A hybrid concept analysis

4.3 Introduction

Co-production is increasingly being applied in the delivery and evaluation of services in modern health care (Batalden, Batalden, Margolis, Seid, Armstrong, Opipari-Arrigan & Hartung, 2015). It refers to the active input by people who use(d) services together with people who provide services. Co-production in health care is promoted by supranational organizations such as the World Health Organization and is situated in a shift from paternalistic to deliberative and empowering models (World Health Organisation 2015). At the backdrop of the declining status of professional expertise and the democratization of knowledge, sociologists report a shift in the terminology to refer to the patients perspective. Since the 1990s, sociologists do no longer use the terms ‘lay health beliefs’, instead they use the term ‘lay knowledge and expertise’ (Blume, 2017). This combination of reasons implied that patients, who first were considered as passive subjects now have come to be seen as ‘experts’ with knowledge about their own bodies, symptoms and life situations.

Experts by experience are potential co-producers of care. As long-term service users they do not only have experienced a particular disease of disability, they also gained knowledge about it and about the health care services they use. Additionally, they possess the appropriate competencies (e.g. attitudes and skills) to bring their knowledge into action. Although not the same, some authors refer to them as ‘expert patients’, ‘trained patients’, or ‘peer counsellors.

The need for a concept analysis in the context of medical health care arises from both literature and practice. Experts by experience can coproduce care at the level of direct care (micro level) as well as at the level of care organization (meso level) and policy (macro) (Nickel, Trojan & Kofahl, 2016). With respect to direct care, experts by experience can provide mental, social and practical care. With respect to care organization and policy, experts by experience can co-evaluate care. The literature demonstrates various examples of successful co-production initiatives (Crawford, Rutter, Manley, Weaver, Bhui, Fulop & Tyrer, 2002; Mockford, Staniszewska, Griffiths & Herron-Marx, S. 2012; Sharma, Knox, Mleczko & Olayiwola, 2017). Nevertheless, examples exist where professionals do not seem to value patients’ contributions (Solbjør & Steinsbekk, 2011). An often-cited criticism is that patients merely reflect from their individual viewpoint and experiences and that they lack the knowledge about the care system in which they participate. Therefore, the effect of their insights on the daily

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work of healthcare professionals is reported to be rather limited (Solbjør and Steinsbekk, 2011). Practical experiences and observations from other domains show that the involvement of experts by experience has the potential to counter this criticism since experts by experience seem to possess the essential competencies to contribute to the micro, meso and macro level as well (Boivin, 2014).

Sociologist Borkman (1976) was the first to theoretically clarify the concepts ‘experiential knowledge’ and ‘experiential expertise’. She defined experiential knowledge as “the truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others.” It refers to wisdom and know-how gained from a personal experience with a phenomenon such as a disease or disability. Experiential expertise, the second concept, was defined as “a competence or skill in handling or resolving a problem through the use of one’s own experience”(Borkman, 1976). The most important difference between both concepts is that everyone with the same problem may have experiential knowledge, but the degree in which one has integrated the information and is competent to share the knowledge to others, varies. Borkman’s definitions form a firm basis but are related to self-help groups and date from 40 years ago.

Whilst a body of recent literature highlights renewed acknowledgement (Tambuyzer, Pieters, and Van Audenhove 2011), experiential expertise seems to be a concept which is poorly understood in the current health care context (Mclaughlin, 2009; Scourfield, 2010; Miaskiewicz & Kozar, 2011). In literature and practice as well, different understandings by different stakeholders are reported. This is due to the complex and multifaceted nature of the concept experiential expertise. The concept has been used in diverse sectors (e.g. mental health, social work) through multiple modes of interaction (e.g. one to one, groups), in diverse settings (e.g. hospital, training) and domains (e.g. social work, mental health, addiction treatment). It incorporates a variety of roles (e.g. mediator, advocate, change agent) and activities with varying degrees of involvement and structure (e.g. formalized versus informal, paid versus unpaid).

Experiential expertise is most developed in mental health services (Repper & Carter 2011), and social work (Casman, Vrancken, Dierckx, Deflandre, & Campaert, 2010; Roets, Roose, De Bie, Claes, van Hove, 2012). Often in these domains experts by experience are even employed, or competency and function profiles are developed by policy makers (van Bakel, van Rooijen, Boertien, Kamoschinski & Kluft, 2013; Vandenbempt & Demeyer 2003). This is in contrast to the area of medical health care where the term experiential expertise is often diminished in impact by making it interchangeable with

the term ‘lay expertise’, ‘patient expertise’ or even ‘peer support’ (Civan, McDonald, Unruh & Pratt, 2009; Thompson, Bissell, Cooper, Armitage & Barber, 2012). The aim of this article is to illuminate the essential aspects of experiential expertise. By combining theoretical and empirical data from medical, mental and social care our study provides a comprehensive and operational definition. We aim to contribute to the development of theory and practice in the Netherlands and Belgium, but also to the international literature regarding co-production of care.

This study is part of a larger research project which aimed to develop and test a method to structurally involve experts by experience in hospital services. Therefore, 14 experts by experience were employed in three services of a large Belgian hospital during almost ten months. To conduct this study properly, the concept ‘experiential expertise’ had to be clarified. A full description and evaluation of the case studies will be described in another paper.

4.4 Methods

Concept analysis is widely viewed as a process that enhances theory development and empirical research (Goertz, 2006). After a comparative study of different approaches, a combination of Rodgers’ evolutionary method with Schwartz-Barcott and Kim’s hybrid concept analysis seemed the most appropriate method (Rodgers & Knafl 2000). This hybrid model aims to illuminate the essential aspects of concepts by combining inductive and deductive approaches. The strength of the method lies in the combination of data collection from theory and practice. As a result, it fits perfectly with the objective of this paper: to develop a comprehensive and operational definition, which promotes both theory development and empirical research. The hybrid method consists of three phases: (1) the theory phase, (2) the fieldwork phase and (3) the analysis phase. The initial theoretical phase requires comparison of theoretical definitions from literature, to develop a tentative working definition. The second phase, which is empirical, builds on the working definition and aims to thoroughly identify the defining characteristics. The final analytical phase starts from the findings of the first two phases and includes comparisons, contrasts and adaptations to clarify and refine the concept.

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4.4.1 Phase 1: Theoretical phase4.4.1.1 Search strategy concept analysis

The strategy included a protocol-driven search, combined with a secondary search (snowballing), following the recommendations of Greenhalgh and Peacock (Greenhalgh, 2005) (see Figure 11). We included peer-reviewed papers in international (English) medical, sociological, psychological and nursing literature. Four databases were searched (Pubmed, Web of Science, Embase and Jstor) with the following keywords entered: ‘expertise by experience’, ‘experiential expertise’ with and without the search term ‘definition’. Furthermore, Dutch journals and books were searched manually. Finally, we also searched gray, mostly unpublished, literature, policy and legislation documents and the search engine Google. Using the snowball method we screened reference lists and citations. Original research articles as well as theoretical and conceptual articles were consulted. We did not limit our search by publication date.

Figure 11: An overview of the search strategy

4.4.1.2 Eligibility criteria

Publications with a definition of expertise by experience were included in the literature study. First, titles and abstracts were screened to exclude irrelevant records. Second, full-text articles were retrieved for all selected records. Third, full texts were screened to establish whether

they fulfilled inclusion criteria. Articles that showed how these concepts were understood, described and operationalized were included. We only included articles derived from the areas of social work (poverty and social exclusion), mental health care and medical health care as the concept is most frequently used and developed in the first two areas. As the aim was to identify a broad range of conceptual definitions used in the literature, no further assessment of the validity or quality of the full text was conducted. This selection process continued until a saturation point was reached in terms of breadth of understanding and descriptions. When no new information emerged after three papers, the search was ceased. Finally, all definitions were screened by two peers from the same research unit, who evaluated their appropriateness. As a result, 24 definitions of ‘experts by experience’ were included: 12 in (medical) health care, 9 in mental health care, 3 in social work (see Appendix B). Three other papers (without a definition but with a useful description of the concept) were included.

4.4.1.3 Content analysis

We used content analysis, based on an inventory of several definitions of the concept. The clarification process incorporated aspects of concept analysis strategies proposed by Rodgers and included criticism on existing definitions and identification of the antecedents, attributes and consequences (Rodgers & Knafl, 2000). Each definition was divided into meaningful units that were subsequently coded. A coding sheet was developed in an iterative process. The sheet was continuously extended if new codes emerged during the analysis of new definitions. It was then revised by two other members of the same research unit. Finally, the codes were grouped into meaningful clusters (e.g. experience with a phenomenon).

4.4.2 Phase 2: Empirical phase

4.4.2.1 Interviews with key informants

Schwarts-Barcott and Kim (1993) consider fieldwork as an essential element in concept development. In hybrid concept development, qualitative data are used to develop insight into the nature of the concept (Rodgers & Knafl, 2000). In an attempt to maximize response diversity, we recruited a purposive sample consisting of experts by experience and professionals in social work, mental and medical health care in Belgium and the Netherlands. In social work and mental health, caregivers are more aware of ‘expertise by experience’. Purposive sampling is a common approach in qualitative research. It allows the selection of participants

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whose experiences permit an understanding of the phenomena in question (Polit & Beck, 2012). The aim was to collect the key-informants’ views about the meaning of experiential expertise. Experts by experience, health care workers and researchers were contacted through self-help organizations and the researchers’ network. Inclusion criteria were: age 18 or over and personal experience with the enablement of experts by experience. In total, 17 explorative interviews took place face-to-face. The transcripts of 11 experts by experience, 4 professionals and 2 researchers were analyzed. One respondent was both a professional and a researcher (see Appendix C for the respondents’ characteristics).

4.4.2.2 Analytical Phase

The analytical reflection involved combining definitions derived from the first two phases, resulting in possible changes to the definition and refinement of the concept. The results of the qualitative data were tested against all theoretical data. Similarities and differences between the two sets of findings were extracted and noted.

To improve the readability, we described the first (“theoretical”) and second (“empirical”) phase together in the following section. The third (“analytical”) phase is described in section 3.4 “Analytical reflection”.

4.5 Results

4.5.1 Antecedents (based on theoretical and empirical phase)

A common thread in the definitions of experiential expertise is that its development starts with experiencing a phenomenon, such as a chronic disease or disability on a daily basis (Boevink, 2012, 2006; Borkman, 1976; Bovenberg, Wilrycx, & Francken 2011; Casman et al., 2010; Van Erp et al. n.d.; van Haaster et al. 2013; van Haaster & Koster-Dreese 2005; Karbouniaris & Brettschneider 2008; Knooren, 2010; Van Regenmortel, 2011; Rietbergen, Mentink & Verkuyl 1998; Timmer & Plooy 2009; Verbrugge & Embregts 2013). These experiences relate to the patient’s body, care, recovery and his social environment. (Caron-Flinterman, Broerse, & Bunders, 2005; van Haaster et al., 2013). For example, when living daily with rheumatism, patients have to deal with pain in their body, they often have to rely on professionals or informal care, they have to take care for themselves in order to prevent worsening and they need to combine the care for their condition with other things such as being a parent, an employee or a partner. All these experiences are concrete and they strongly depend on a patient’s personal

situation and social profile. As such, a young female student will experience rheumatism in another way than elderly widower.

Another crucial dimension is experiential knowledge (Boevink, 2006, 2012; Borkman, 1976; Casman et al. 2010; Van Erp et al., n.d.; van Haaster et al., 2013; van Haaster & Koster-Dreese, 2005; Plooy, 2007; Van Regenmortel, 2009; Timmer & Plooy 2009). A person acquires experiential knowledge by analyzing and reflecting repeatedly about one’s own experiences and reading for example patient stories throug blogs or online communities and medical literature (van Haaster et al., 2013; van Haaster & Koster-Dreese, 2005; Karbouniaris & Brettschneider, 2008; Posthouwer & Timmer 2013; Van Regenmortel, 2009; Timmer & Plooy 2009). By comparison this kind of knowledge continuously develops through observation and imitation. The empirical data confirm this:

“In addition to the experience of the disease, you have to build up knowledge and gain insights into your experience. You also have to meet others so you can observe similar experiences and afterwards you can think “ah, it’s the same for them “. In that way, you create insights into the experiences of others, which results in recognition.”(expert by experience)

In the literature terms as ‘embodied knowledge’ or ‘knowledge from within’ are also used to describe experiential knowledge. Experiential knowledge is characterised by an unconscious and automatic component, as it is learned through daily experiences. It is implicit and thus difficult to describe (Burda, van den Akker, van der Horst, Lemmens & Knottnerus, 2016; Lam, 2000; Thompson et al. 2012; Utschakowski, 2017). Experiential knowledge is therefore often compared to cycling: it is knowledge that one can put into practice, but it is difficult to describe and explain to someone else.

In the literature, a distinction is made between personal and collective experiential knowledge. Whereas personal knowledge is reserved for oneself, collective knowledge is the result of sharing the individual knowledge with others with similar experiences, for example in patient organizations (Burda et al. 2016, 2012; Verbrugge & Embregts 2013). Doing so creates a sense of familiarity and recognition and leads to a collective body of knowledge (van Haaster et al. 2013). By listening to others with the same condition, the boundaries of individual experience are exceeded and collective experiential knowledge is acquired (Boevink, 2012; Caron-Flinterman et al., 2005; Korevaar & Droës, 2011). The broadening of individual experiential knowledge as a prerequisite for experiential expertise is confirmed by the empirical data of this study. Furthermore, respondents stated that this goes hand in hand with the processing or acceptance of a

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patient’s disease or disability.

“Processing and extending the experience is very important. You have to focus on your own story but also on that of someone else. My experience can be very different from that of the other. An expert by experience must be aware that such a width exists.” (professional)

Having the appropriate competencies to articulate experiential knowledge is another crucial antecedent (Borkman, 1976; Casman et al., 2010; van Erp, Boertien, & Rooijen 2015; van Haaster et al., 2013; Karbouniaris & Brettschneider, 2008; Posthouwer & Timmer, 2013). Through specific training or learning path (e.g. learning from practice) one obtains the appropriate attitudes (e.g. open attitude towards others), skills (e.g. active listening) and knowledge (e.g. regulations concerning doctor -patient confidentiality) to put his experiential knowledge into action. The necessary competencies depend and differ on the areas where the experiential expertise will be used.

The importance of training to develop experiential knowledge into experiential expertise is also acknowledged by empirical data. The purpose of training is to deploy experiential knowledge in an expert and ethical manner and to give future experts by experience sufficient self-confidence when they become an actor in a health care context which is merely dominated by medical technical knowledge. However, respondents highlight the importance to carefully monitor the potentially excessive level of training as that could threaten the possible advantages of experiential expertise. The majority states that the authenticity of the experiential expertise must be preserved and that the expert by experience should not evolve into a pseudo-professional. Therefore, regular interaction between peers, supervision and retraining but also discussions with team members or patient associations are crucial.

4.5.2 Attributes (based on theoretical and empirical phase)

Experiential expertise is based on a daily lived experience with a particular disease or disability. It includes for example experience in dealing with one’s injured body (e.g. an amputation) and the associated difficulties (e.g. climbing stairs, practicing sports), experience in dealing with health care providers and health care institutions (e.g. several hospital admissions or doctor visits to test a prosthesis) and experiences in dealing with social comments and stigma (e.g. people staring). As such, this broad lived experience is a source for problem solving and support (e.g. learning how to climb stairs, dealing with staring people). Subsequently, distinctive

characteristics of experiential expertise are pragmatic, oriented to ‘here-and-now’ action and holistic. A person with an amputation has to translate the technical-theoretical explanation of a physiotherapist into practice, has to deal with wounds caused by the prosthesis and has to integrate its disability into his daily life (e.g. going to work). One of the respondents stated that this type of expertise is subjective, a dimension often filtered out in other kinds of knowledge:

“The knowledge domain of experiential expertise differs from regular professional knowledge. Something that objectively seems a ‘mosquito’ can be subjectively be experienced as an ‘elephant’ throughout your life. Something that is scientifically a small negligible detail within treatment can be of great importance in daily life.” (expert by experience)

Experiential expertise distinguishes itself from other similar concepts (e.g. lay knowledge) by the specific expertise in bringing the experiential knowledge into action. It is characterized by experience-based expertise, which is complementary to expertise based on medical, scientific, technical and theoretical knowledge.

This complementarity between experiential and professional expertise was repeatedly stressed by the respondents of the empirical part of this study. Professionals often seem to approach patients from a purely theoretical or medical point of view. With their clinical medical knowledge, they try to improve patients’ physical health. For dealing with very practical issues for example, they often have too little expertise (e.g. swimming with a stoma). Experts by experience, with their experiential knowledge, have the expertise to support people living with a chronic disease or disability in various areas of daily life. Their first-hand experience with a certain condition complements professional care.

In contrast to experiential knowledge, which is mostly implicit, experiential expertise is explicit and transferable to others (e.g. peers, professionals) and to several situations (e.g. evaluating care organizations, informing other patients) and contexts (e.g. health care institutions) (Burda et al., 2016, 2012; Casman et al., 2010). The mode of application is highly variable (individual versus group, face-to-face versus online, etc.).

Experiential expertise presupposes the transfer of experiential knowledge, in a structured and orderly manner, at four levels: micro, meso, macro and meta (Tambuyzer et al., 2011). At the micro level or the level of direct care, experiential expertise is used to offer peers emotional, social and practical support through multiple modes of interaction (e.g. individual one-to-one sessions, group sessions). At the meso level, the level of the organization,

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experiential expertise is used to improve health care quality through involvement in service development or evaluation through a variety of participation methods (Roets et al., 2012; Tritter, 2009). At the macro level, the expertise can be used to ensure that the health care system and policy is oriented and responsive to the patient’s perspective. Finally, the experiential expertise can be used at the meta level (e.g. research and education), which spans all the other levels.

4.5.3 Consequences (based on the theoretical and empirical phase)

The scarce literature regarding ‘effects’ of the use of experiential expertise in health care settings, suggests an enhancement of societal integration, societal participation, increased mental health confidence, fewer self-reported symptoms, lower level of need for care, reduced risk of institutional residence (Boevink et al., 2016; Burda et al., 2016, 2012) and patient empowerment (Boevink, 2012; Casman et al., 2010; Korevaar & Droës 2011). Ultimately, this leads to a better quality of life (Tambuyzer et al., 2011).

The empirical data suggest that the enablement of experts by experience results in effects with respect to the experts themselves. They report mutually empowering relationships between the giver and receiver as both benefit from the interaction. Respondents stated that having a valued role and an opportunity to contribute to care for patients with a similar condition can have a powerful effect on their identity.

A second consequence is related to the professionals’ context. The use of experiential expertise will lead to improved service quality. Experts by experience look at the services through different eyes (Korevaar & Droës, 2011) which results in improvements in accessibility (Casman et al., 2010) and patient-centredness. The empirical data suggest that valorization of experiential expertise in medical health care can assist in creating a culture change to ensure that patients and health care professionals coproduce care to meet the patients’ needs. In the fields of mental health care (Netherlands and Belgium) and social care (Belgium), experts by experience already contributed to a cultural shift from a supply-driven to a demand-driven approach.

4.5.4 Analyticalreflection(basedontheanalyticalphase)

By comparing the conceptualization of expertise by experience as reported

in literature to the one that is described by key informants in the empirical part of this study, no substantial discrepancies were noted between the two data sets. However, one aspect in the analysis of the empirical data is noteworthy. Respondents consider training important, but the underlying reason for this differs. Professionals point out the importance of ‘competent patients’, as a kind of ‘quality assurance’ for the health care service, the professionals and the patients with whom they come into contact. This in contrast to experts by experience who consider training important in order to participate in an ethical and authentic way, to build self-confidence and to be able to deal with difficult and delicate situations.

In conclusion, personal experience, individual and collective experiential knowledge and a wide range of competences, optionally enhanced by training, seem to be crucial antecedents in both data sets. Analyzing, reflecting, consulting various sources and sharing knowledge together will enhance the development of experiential expertise. Figure 12 presents a summarizing overview of antecedents, attributes and consequences of expertise by experience. This kind of expertise is complementary to professional knowledge, draws on expertise regarding how to cope with disabilities and situations and is transferable to others in several situations and contexts. It thus leads to co-producing care, resulting in ‘patient empowerment’, ‘improved quality of care’ and in the long term to ‘better quality of life’.

Figure 12: Overview of antecedents, attributes and consequences

As a result of a thorough literature search and empirical data analysis, a comprehensive definition of experiential expertise was developed. We established a generic and a specific part. The generic part is based on similar aspects derived from the data of mental health care, social care and medical health care. The specific part particularly applies to medical health care and is indicated in italics.

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Expertise by experience is the expertise built on one’s shared, widened and processed experiences of (1) coping with one’s own body and condition, (2) dealing with health care providers and their organizations, (3) handling social reactions and (4) relating to peers aiming to expertly transfer this experiences at different levels in order to coproduce ‘services’ and to facilitate empowerment, quality of life and quality of care’.

4.5.5 Understanding experiential expertise through an illustrative case

A case in the Dutch-speaking part of Belgium, drawn from the authors’ research, illustrates key characteristics of the concept. The case concerns ‘the experts by experience intervention’, which involved 14 experts by experience in the delivery and evaluation of three hospital services. During a pilot study (October 2016 – June 2017) the intervention was tested, refined and evaluated. Fourteen experts by experience were systematically employed: six at a rehabilitation centre, four at a renal centre, and four at a dermatology consultation.

A researcher recruited the patients with experience in amputation, spinal cord injury, renal disease and atopic eczema through patient associations and contact persons of the hospital wards. A three-person jury selected them on the basis of a motivation letter and interview. They mainly focused on the collective experience knowledge and an “open” attitude, as these competencies are difficult to train. The jury consisted of a staff member of the Flemish Patient Platform (an umbrella organization that defends the interests of chronic patients in several commissions and policy bodies at the macro level), the coordinator of the Flemish self-help clearinghouse and a member of the board of a patient association regarding breast cancer who was an expert by experience herself.

All experts by experience participated in a co-design trajectory, where they collaborated with other patients and health care professionals to design the experts by experience intervention (Castro, Malfait, Van Regenmortel, Van Hecke, Sermeus, Vanhaecht, 2018). During this co-design trajectory, the group discussed several topics, amongst others: goals of their engagement, tasks and roles, preconditions for successful integration, practical organization and the desired training. The result was a training course, mainly to enhance skills and knowledge. The training included four aspects: a basic course to enhance social skills (conversation and listening techniques, communication with caregivers, dealing with difficult and delicate situations), a pathology-specific course (medical background information), an introduction to volunteer service and hospital organization

(hygiene, safety, discretion and privacy rules) and an introduction to the specific hospital departments. Staff members of the self-help clearing house together with the hospital departments organized the training. In addition, staff members of a self-help groups’ support centre provided extensive support to the experts by experience though regular individual coaching sessions, monthly inter- and supervision in group and bimonthly meetings with the health care professionals of the hospital wards. This extensive support was needed so that the experts by experience could transfer their experiential knowledge to patients and professionals as well.

Experts by experience conducted two tasks. They offered patients complementary (mental, social and practical) support through several modes of delivery (tailored to the concerning hospital ward) such as individual face-to-face sessions, group face-to-face sessions (e.g. during therapy and exercise sessions, workshops), e-mail or an online community. As such, they putted their expertise in coping with their disease or disability into practice. The other task of the experts by experience was to offer professionals a continuously evaluation of the organization and the delivery of care, based on issues reported to them. As stated in the introduction, this case will be described in another paper.

4.6 Discussion and conclusion

4.6.1 Discussion

The unravelling of the characteristics of the concept of experiential expertise contributes to the theory development, empirical research and the valorization of the informal knowledge of patients with chronic conditions. Currently, medical and scientific knowledge dominates health care settings. Expertise based on experience is often neglected because it is considered to be subjective and individualistic and therefore not evidence-based nor scientific. Professional knowledge alone seldom considers ‘life with a condition or disease’. Furthermore, experiential knowledge can be differentiated from professional knowledge as mostly implicit, pragmatic, holistic and oriented to ‘here-and now’ action. Professional knowledge is mostly explicit, theoretical or scientific, long-term oriented and segmented (Borkman, 1976; Lam, 2000) and revolves primarily around embrained knowledge. By combining both forms (‘co-producing’), the gap between patient knowledge and professional knowledge can be bridged. This may lead to a new and more balanced distribution of knowledge which better meets the needs of patients with long-term diseases or disabilities.

Not only differences but also similarities between experiential and

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professional expertise can be outlined. The development of the expertise itself runs through the same stages. Dreyfus’ Model of Skill Acquisition explains the mental processing of becoming an expert (Dreyfus & Dreyfus, 1980). The evolution from a ‘novice’ to an ‘expert’ is characterized by a shift from rather abstract towards more ‘intuitive’ and ‘holistic’ problem-solving actions. The more experience someone has, the more of an expert he or she becomes in problem solving. However, not every patient will evolve into an expert by experience, nor can every nurse become an expert according to Benner (Picker Institute 2008). She states that many nurses often remain in the third stage, which stands for ‘a competent nurse’.

The results of this concept analysis reveal that experiential expertise differs from other concepts such as peer support which is often used interchangeably with experiential expertise. The main differences are situated in the following three areas. First, experiential expertise is a multilevel concept because experiential expertise is usable at the level of direct care (micro level), care organization (meso level), care policy (macro) and research and education (meta). This is in contrast to peer support, which only targets the level of direct care. Second, it takes a number of requirements to develop experiential expertise. A first prerequisite is the availability of collective experiential knowledge (e.g. by being a member of a patient association) as it is important to exceed the boundaries of one’s own experiences. A second prerequisite is the competency to transfer this collective experiential knowledge to others.

This also leads to a crucial difference with the concept of ‘peer support’(Mead, Hilton and Curtis, 2001; Dennis, 2003). Peers share the same experiences and have experiential knowledge but in contrast to experts by experience, they do not automatically have collective experiential knowledge and experiential expertise. Peer support is ‘limited’ (no value judgement intended) to supporting peers (emotionally, by appraisals and with information) while experts by experience can have multiple roles at the micro, meso, macro and meta level ranging from supporting (and defending) peers (their interests) to involvement in improvement trajectories (Tambuyzer, Pieters and Van Audenhove, 2011). Third, experiential expertise can be used for the benefit of patients (e.g. informing and supporting) and professionals (evaluating care organization), where peer support mainly focuses on supporting peers. All these characteristics imply that experiential expertise is a broader concept than peer support.

In section 4.5.4. we propose a comprehensive definition that captures the essential dimensions of experiential expertise in terms of antecedents, attributes and consequences. To our knowledge, no recent studies have thoroughly analyzed this concept in health care. Our concept analysis

addresses an important gap in the literature as formulated by Scourfield (2010) and Mclaughlin (2009). Despite its upcoming popularity, the concept has never been analyzed before. Because the domains of mental health care and social work have more experience and knowledge concerning experiential expertise, we included literature and empirical data from these domains resulting in a comprehensive definition and framework. This framework has the potential to facilitate co-production initiatives by offering guidance in the selection process and further implementation in practice. By using a hybrid concept analysis, we provided insight into how the concept is expressed in theory and practice. This enabled us to validate, broaden and deepen the data that was identified in the theoretical phase resulting in a comprehensive definition and framework that is representative for both theoretical and empirical perspectives. However, the authors are aware that the theoretical framework is an artificial simplification of a complex concept.

4.6.2 Study limitations

We did not conduct a systematic evaluation of the quality of research articles included as our aim was to consider all relevant research. Furthermore, we interviewed fewer respondents in the social work domain as we felt that saturation was reached and no new information emerged from the data.

4.6.3 Further research

The experiential expertise of relatives has been excluded in our study but should be considered in further research. Abel & Browner (1998) differentiate between the knowledge of persons with personal experiences of bodily experiences (‘embodied knowledge’) and the knowledge of relatives whose knowledge derives from close emotional ties (‘empathetic knowledge’) (Blume, 2017). Finally, the application of the concept raises a number of questions: “Who gives these individuals authority to speak as experts by experience?” “Who will organize the training for experts by experience? What kind of training do they need? What kind of issues do experiential experts face in the medical community? In order to answers these kinds of questions, there is a need for the development of more interventions that involve experts by experience in the medical health care.

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4.6.4 Conclusion

This study systematically analyzes the concept of experiential expertise by describing its antecedents (experience with a chronic condition, experiential knowledge, competencies), attributes (experience and knowledge in coping with disabilities and situations, complementarity to professionals expertise, transferability to other persons, situations and contexts) and consequences (patient empowerment and quality of care) in health care. Doing so, the study aims to contribute to theory development, to facilitate empirical research and to contribute to the valorization of the knowledge of patients as an essential complement to the knowledge of professionals. As such, the concept of experiential expertise also fulfills a ‘symbolic’ function as it can be understood as a self-conscious and deliberate attempt to equalize the status of professionals and patients (Mclaughlin, 2009; Scourfield, 2010). Involving patients in health care, or co-producing health care, has been put forward as a way to improve health care services. All too often strategies to co-produce care are rooted in professionally dominated approaches where patients are consulted only at a level where they have little opportunity to influence care. Co-production with patients with experiential expertise can be seen as an ethic way of addressing power imbalances as experts by experiences have collective experiential knowledge and the appropriate skills to collaborate as an equal partner of health care professionals.

Author Definition

Health care

Borkman (1976) Experiential knowledge is truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others. The two most important elements of experiential knowledge are (1) the type of information on which it is based and (2) one’s attitude toward that information. * The type of information is wisdom and know-how gained from personal participation in a phenomenon instead of isolated, unorganized bits of facts and feelings upon which a person had not reflected. This wisdom and know-how tend to be concrete, specific and commonsensical, since they are based on the individual’s actual experience, which is unique, limited and more or less representative of the experience of others who have the same problem. * The second element is the certitude that what one experiences indeed becomes knowledge. Experiential knowledge is the ‘‘truth learned from personal experience with a phenomenon’’ and experiential expertise refers to ‘‘competence or skill in handling or resolving a problem through the use of one’s own experience’’

Foundation for Learning Disabi-lities

A term used by the recovery movement to draw attention to the value of working alongside service users. A particular approach which acknowledges a person’s capacity to work towards their own rehabilitation.

Care Quality Com-mission (2016) http://www.cqc.org.uk/content/become-an-ex-pert-experience

Experts by Experience are people who have personal experience of using or caring for someone who uses health, mental health and/or social care services that we regulate.

4.7 AppendixB:Overviewdefinitionsexperiential expertise

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Commission for Social Care In-spection (2009) in Scourfield (2010)

People who have chosen to become more closely involved with the organization, developing their skills, knowledge and expertise (CSCI, 2009)An expert by experience is a person who, because of their shared experience of using services, and/or ways of communication, visits a service with an inspector to help them get a picture of what it is like to live in or use the service. Experts by experience do not need to have experienced an identical service. What matters is that they know what it is like to need a service.

Carer Quality Commission (2009) in Scour-field (2010)

Experts by experience are people who are using services now or have done so in the past, people who need services but haven’t been offered them, people who need services but haven’t been offered any that are appropriate, people living with or caring for a person who uses services.

Burda et al. (2016) Having the experience of living with a chronic disease implies having experiential knowledge. When this experiential knowledge of patients is joined and shared, a communal body of knowledge—called experiential expertise—can arise. Experiential expertise relates to the disorder as a physical–biological and psychosocial entity and relates to social roles in various life domains, such as family, school/work, social networks, public places, and health care services. An essential aspect of experiential expertise is its transmissibility to peers and others and aimed at the benefit of peers. Experiential expertise contributes to the improvement of ways to deal with and solve restrictions resulting from the disorder and the medical regimen, with the emphasis on consequences for daily life. An important aim of transferring experiential expertise is to help people with a chronic disease increase their social integration and societal participation and hence achieve the quality of life they aspire to.

Burda et al. (2016) Patient-specific knowledge is often implicit and concerns the lived experiences of individual patients regarding their bodies and their illnesses as well as cure and care. The first step towards experiential expertise is made when these experiences are converted into personal insights that enable a patient to cope with their individual illness and disability. When experiences are tested and shared by peers, the communal body of knowledge exceeds the boundaries of individual experiences and starts being ‘experiential expertise,’ which can be transferred to peers. Experiential expertise can be regarded as an intersubjective body of competence in terms of attitude, knowledge, and skills, tested and adapted continuously in daily life by the experiential experts themselves.

Popay & Williams (1996) in Thomp-son et al (2012)

The implicit, direct knowledge, experience and understanding that an individual has about their body, health and illness or about health services, care and treatment.

Gielen et al. (2010)

Expertise by experience starts, as the word suggests, from a personal, specific experience related to a problem. At a later stage, that problem is converted to a personal interpretation of the problem. In other words,: experiential knowledge is specific and tangible. It is about the tacit and embodied knowledge of an individual. Expertise by experience also has another dimension: it involves the ability to tackle and resolve a problem. By this, Expertise by experience transcends the individual experience. It is more about abstracted knowledge that can be enabled to help others. Expertise by experience is embedded knowledge on a collective level. It is a gradual quality- one can have less or more Expertise by experience – and it is dynamic. Expertise by experience can indeed change over time. It is transferred in self-help groups from peer to peer. Gradually, it also starts to gain ground in regular care, where it is enabled externally. [Own translation]

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Curran et al. (2014)

We use the term ‘expert by experience’ to refer to roles beyond the immediate experience of being a service user or carer when that expertise is deployed in other situations, for example for contributing to student recruitment, teaching, research, policyconsultation or service improvement.

De Jonge (1994) The development of expertise by experience is a process. Combining individual experiences does not necessarily generate experience-based knowledge. Experience-based knowledge only arises when analyzing those experiences and when theories based on experiences from the field are generated. Expertise by experience is established through a process where individual experiences are combined and where theories based on experiences that lean on shared experiences, are formulated.

Deegan (2013) One can speak of expertise by experience when a patient recovered sufficiently and when he’s able to cope with his problems. It also means that the patient can see his illness in a wider context.. He has knowledge about his condition and knows which factors contribute to recovery. He also has a view on his condition and the therapies he has followed. With this knowledge, he is able to help others on their way to recovery.

Mental health care

Geestelijke ge-zondheidszorg Eindhoven en de Kempen (2011)

Expertise by experience is a source of knowledge that is founded upon experience, upon the process of recovery and the exchange of your own personal story with the stories of others. The struggle with several complaints, psychological illness, opposition, and uncertainties about choices made are all part of this. In addition, resilience, the ability to find creative solutions and adjustments, the support of others, the new identity and new experiences are a source of expertise by experience. Therefore, expertise by experience is not something that can be learned through education. It is the ability to apply and use all the knowledge gathered from those experiences. [Own translation]

Boevink (2017 In order to gain confidence in your own power, and to be able to develop and expand that power, experience-based knowledge is required: knowledge about what improves and what impedes one’s own recovery process. In our view, recovery and empowerment lean on experience-based knowledge and expertise by experience. People who have experienced severe and long-term psychological suffering, all have a unique story. This story encompasses the meaning that people give to their problems and the strategies they develop to cope with these problems. This is the so-called personal experience-based knowledge. Together, all these individual stories form collective experience-based knowledge: knowledge about what it is like to live with psychological vulnerability and its consequencest. If someone is capable of transferring this knowledge to others, in any form, we use the term expertise by experience. Expertise by experience is essential for the recovery of people diagnosed with psychological illness. At an individual level, it contributes to the empowerment of peers in their search for their own powers. At a higher level, it clears the way for the influence of clients on the improvement of medical care. [Own translation]

Karbounianiss & Brettscheider (2009)

Expertise by experience is the result of a processing process and of the reflection about…Recognition and acknowledgement are the leading principles. Although knowledge can be meaningful for one’s personal life and the life of peers initially, it should also be verifiable, for instance, by evaluation research. Experience-based knowledge is the expertise by experience and knowledge:- That is used, and considered useful by experts by experience- That is based on the experts by experiences’ own experience.- That refers to competencies to commit knowledge in favour of a third party (e.g. phrasing emotional experiences)- That can be used in several fields and practices.- But that can be applicable to a specific area and a specific context. [Own translation]

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Koningin Fabio-lafonds voor de Geestelijke Ge-zondheid (2009)

Expertise by experience is the specific expertise that was constructed by learning-from-experiences: by taking your own experiences seriously, by processing them for yourself and reflecting on them and additionally by considering similar experiences of others as being serious, by listening to those experiences and assimilating them in own reflections. [Own translation]

Korevaar & Droës (2008)

Expertise by experience is good example of how empowerment works. It encompasses the idea of sharing own experiences with peers. Throughout this process one will gradually learn how own experiences can fit in a ‘we-story’ and how this can be applied to other contexts: e.g. improvement of care, policy making or political action. [Own translation]

Plooy (2007) Expertise by experience is a skill, a profession based on specific and mature knowledge. It is embedded in comprehensive literature of experience stories of people with long-term psychological illness. It is knowledge that is supported by scientific research and that leans on the experiences and the development of the client-movement in the 30s. This knowledge refers to the recovery of psychological illness and the support of people with psychological illness. Experiential knowledge is the integration of individual experiences into a commonly shared story. That is expert by experience. When you have the ability to transfer this knowledge in an efficient way, and when you put it at stake for the improvement of the position of psychiatric patients, then you develop something that we could call expertise by experience. [Own translation]

Posthouwer & Timmer (2013)

Expertise by experience is the professional dedication and transfer of knowledge gathered by analysis of and reflection on one’s own experiences and experiences of peers, completed with knowledge from other sources such as literature, presentations and media. [Own translation]

Ruis (2012) One can speak of expertise by experience when people offer emotional, social or practical help and engage personal experiences to help people with similar experiences (peers). [Own translation]

van Erp (2011) Expertise by experience is the expertise in supporting others to develop your own experiential knowledge and to support the recovery process. At the same time, it is the expertise in the field of more general experience knowledge and the enabling of it in care and in the emancipation and the battle against stigmatization. [Own translation]

Social Work (poverty)

Casman et al (2010)

This experience is:Assimilated: the capacity of experts by experience to carry out their missions effectively requires, initially, that they have assimilated the experiences acquired all along their own life path spent in poverty. Supplemented by specific training: during the first three years of their engagement, these experts by experience follow a part-time training course, which is intended to prepare them to take up their activities within the federal public services. Connected to wider horizons acquired by the exchange and the expertise of others’ experiences: these three years of training are an opportunity for the experts by experience of similar mind to be in contact with each other on a regular basis and to exchange thoughts on their respective paths. Moreover, the training process aims at maximizing the dynamics of exchange and expression. Gradually enriched by professional experience: finally, expertise acquired through rea- life experiences continues to be refined and to become enriched by doing the professional work itself.

Missing link (2010)

Trained experts by experience in poverty and social exclusion are persons who have experienced poverty since birth. They have processed and expanded their experience to broader poverty experience, and through training they were handed attitudes, skills and methods to practice and apply the broadened poverty experience in a well-grounded way in all fields of poverty prevention. [Own translation]

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Spiesschaert (2005)

Trained experts by experience in poverty and social exclusion, persons who have experienced poverty, who have coped with and extended this experience and who, through training, have acquired attitudes, skills and methods to apply this extended poverty experience professionally in one or several areas of the fight against poverty. In other words, they have received the opportunity through training to start or continue their coping process, to extend their experiences with that of others and to develop attitudes, skills and methods which are important in the field of practice. However, the official designation of the training, as it is recognized by the department of education, differs from the term used in the poverty decree. The latter refers to expert by experience in poverty, while within the department of education the training is known as training for “experience expert in poverty and social exclusion.

4.8 Appendix C: Overview respondents

Discipline Gender Sector Country

Respondent 1 Expert by experience f Medical surgical health

Belgium

Respondent 2 Expert by experience f Medical surgical health

Belgium

Respondent 3 Expert by experience f Medical surgical health

Belgium

Respondent 4 Expert by experience m Medical surgical health

Belgium

Respondent 5 Professional f Medical surgical health

Belgium

Respondent 6 Expert by experience m Medical surgical health

Netherlands

Respondent 7 Expert by experience m Medical surgical health

Netherlands

Respondent 8 Expert by experience m Mental health Belgium

Respondent 7 Expert by experience m Mental health Belgium

Respondent 9 Expert by experience f Mental health Belgium

Respondent 10 Expert by experience f Mental health Belgium

Respondent 11 Professional m Mental health Belgium

Respondent 12 Professional f Mental health Belgium

Respondent 13 Researcher m Mental health Belgium

Respondent 14 Researcher m Mental health Netherlands

Respondent 15 Expert by experience m Social work Belgium

Respondent 16 Professional and researcher

m Social work Belgium

Respondent 17 Professional m Social work Belgium

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5Participation and health care:a survey investigating the current and desired collaboration between patient organizations and hospitals

Chapter

This chapter is published as: Castro, E. M., Van Regenmortel, T., Van Wanseele, C., Sermeus, W., & Vanhaecht, K. (2018). Participation and health care: a survey investigating the current and desired collaboration between patient organizations and hospitals. Journal of Social Intervention: Theory and Practice, 27(4), 4–28.

5.1 Abstract

Background: Although the concept of experiential expertise is relatively new in modern health care services, policy and research, it has profound implications for improving participation in healthcare. The absence of theoretical and conceptual clarity has led to poor understanding and miscommunication among researchers, health practitioners and policy makers.

Background: Patient participation is widely seen as a way to improve health care quality. It is encouraged by public health policies but systematic development and implementation of such policies in practice is still lacking.

Objective: To facilitate a structural approach of involvement of patient organisations at the meso level we conducted an explorative survey in order to understand the current state of collaboration between patient associations and hospitals, and to gain insight in the needs and wishes of these patient organisations.

Design: 111 patient organisations participated in our cross-sectional web-based survey. The results were analysed through a quantitative and qualitative approach.

Results: The majority of the patient organisations aspire to ‘advise’ health care professionals regarding service developments and evaluations. They want to participate in hospitals to produce brochures informing peers and inform and support peers. The aim of their collaboration is fourfold: offering complementary services to patients in the hospital, increasing patient satisfaction, facilitating patient empowerment and increasing quality of care. In general, organisations report a need for more support.

Discussion and conclusion: The ultimate ambition of patient organisations is to more closely collaborate with professionals and to become an acknowledged partner in patients’ care networks. Successful collaborations

5 Chapter 5: Participation and health care: a survey investigating the current and desired levels of collabora tion between patient organizations and hospitals

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can after all produce synergies and establish a complementary type of care and information for patients as well as caregivers.

5.2 Keywords

Belgium, survey, patient participation, patient associations, hospitals, experiential knowledge, health care

5.3 Introduction

Patient organizations (PO) are voluntary, more or less structured partnerships of people whose activities are aimed at controlling and overcoming particular health conditions and associated psychological or social problems that affect them personally or as relatives (Gielen, Godemont, Matthijs, & Vandermeulen, 2010). In Belgium, they have an internal and external functioning. Within the internal functioning, they inform and advise fellow sufferers. This facilitates the fellow sufferers’ empowerment. Within the external functioning, they participate in health care organisations and policies and defend the interests of their members. The participation usually includes: being informed and consulted about matters that concerns them; advising by serving on patient advisory councils or as members of quality improvement committees; and co-production of care by being involved in health care services to support peers. In this article we focus on the external functioning of PO, in particular on their involvement in hospitals (i.e. the organisational level).

Today in hospitals, spurred on by societal evolutions such as socialization of care, increased educational levels, changed patient expectations, budget constraints, and multimorbidity, a momentum is growing towards more patient participation (cf. involvement of patients in their care through shared decision-making, participatory medicine, peer support, involvement of patients in care improvements, etc.) (Boivin, 2014; Tambuyzer, Pieters, & Van Audenhove, 2011). This trend encourages PO to expand their external activities as they are increasingly seen as an active partner in health care.

Patients’ practice-based experience and knowledge are more and more viewed as highly valuable assets to increase patient satisfaction, and achieve more accessible and higher quality care and better informed and more empowered patients (Crawford et al., 2002; Baker, 2007; Longtin, Sax, Leape, Sheridan, Donaldson, & Pippet, 2010; Sanders, van Weeghel, Vogelaar, Verheul, & Pieters, 2013). PO, as pools of practice-based experience and knowledge, have proven to be able to contribute to care innovations and

have become increasingly important health care partners (Levin & Idler, 1981; Kofahl et al., 2014). By establishing peer-to-peer interactions, spreading information, offering social support and advocating for their members, they contribute to an overall trend towards more empowered users and more patient-centered care (Rabeharisoa, 2003). Collaboration between hospitals and PO appears to constitute an excellent strategy for hospitals to integrate patient participation into daily care practice and to achieve a higher level of patient-centered care.

The specific strength of PO is the competitive advantage of their representatives in building experiential expertise (Borkman, 1976; Rabeharisoa, 2003). As such, the representatives can contribute at the level of direct care for patients and the level of health care organization (Carman et al., 2013). At the level of direct care, members of PO spread this interpersonal knowledge from peer to peer, which ultimately results in more effective coping mechanisms for those affected by a disease. At the level of health care organization, patient representatives can work together with health care professionals, for example in patient advisory councils. By using the collective experiential knowledge of PO to the benefit of others and combining it with professional knowledge, healthcare could become more patient-oriented (World Health Organization, 2004; Repper & Carter, 2011; Kofahl, Trojan & Knesebeck, 2014)

PO already participate in one way or another, in hospitals in several countries. These initiatives have suggested positive effects at the level of direct care (individual level) and the organizational level (collective level) (Gielen et al., 2010). But although overall policy recommendations exist that drive at patient participation through (members of) PO in hospitals, their structural collaboration in practice is still limited. As active patient participation mainly occurs at the level of the hospital wards, this paper addresses social workers, nurses, as well as other hospital staff. In order to contribute to knowledge regarding participation of PO in hospitals and to help hospital staff in overcoming barriers, a survey was consequently conducted among PO questioning their current and desired way of participation in hospitals. To our knowledge, no systematic empirical research exists that addresses the needs and desires of PO regarding active patient participation in hospitals. The survey aimed to gain better insight into the needs and ambitions of the associations in order to offer a strong foundation for further, sustainable participation activities.

The two main research questions were the following: • What is, from the perspective of patient organisations, their current state of collaboration with hospitals? • What is, from the perspective of patient organisations, the desired state of collaboration with hospitals?

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5.4 Political background

5.4.1 International context

In the US and Canada, patient (and public) participation is established by involving patient representatives (and citizens) in local/regional councils and in hospitals to achieve healthcare improvements (Health Canada, 2000; Agency for Healthcare Research and Quality, 2013). The EU has also developed policies to promote patient participation in hospital care. The inspiring concept of ‘selbsthilfefreundlichkeit’ [self-help friendliness] was conceived and successfully implemented in Germany, with formal agreements of collaboration between patient associations and hospitals as the ultimate goal. Under this approach, hospitals collaborate with experiential experts in care (organisation) to establish a more patient-oriented care policy (Nickel, Trojan and Kofahl, 2016). In the UK, patient participation is a key pillar of the National Health Service (NHS) (Barham, 2011). The NHS promotes participation of patient groups in decisions related to the planning, design and development of local health services with the aim of improving services and patient outcomes. In France, patient associations are represented in each hospital in a commission for relations with users and health care quality, but also in the board of directors. In the Netherlands, patient associations are the third party in health policy development next to health care providers and insurance bodies (Denis and Teller, 2011). The system includes three participation levels: informing, advising and co-producing. Patient associations are financially rewarded when participating on all three levels.

5.4.2 Belgian context

In general, several examples (Malfait et al., 2015, 2017) suggest a significant level of attention to patient participation in Belgian hospitals. However patient participation was until recent mainly implemented by involving individual users at the overall level of hospital policy. It is only recently that the collective experiential knowledge and expertise of PO is being introduced to foster the quality of care and patient centeredness.

In Flanders, the Dutch-speaking part of Belgium, 431 patient associations are active. They are supported by “a self-help clearinghouse (Trefpunt Zelfhulp, http://www.zelfhulp.be/)”. A large part of these associations join forces in the Flemish Patient Platform (Vlaams Patiëntenplatform, http://www.vlaamspatientenplatform.be/), an umbrella organisation that defends the interests of chronic patients in several commissions and policy bodies

at the macro level. Since 2016, Trefpunt Zelfhulp and the Flemish Patient Platform co-ordinate a regional support center that focuses on participation by PO at the meso level by facilitating their collaboration with professional organisations. The government subsidizes these three organisations for their support of PO (and self-help groups) and the participation at the meso and macro level. The patient associations finance their activities mainly from membership fees and fundraising activities.

5.5 Theoretical background

Patient participation can be defined as the contribution of patients or their representing organisations in influencing health and social care services by means of active involvement in a range of activities at the individual, organisational and policy level (Castro, Van Regenmortel, Vanhaecht, Sermeus, & Van Hecke, 2016). The concept of patient participation is used at different levels: micro (individual care), meso (service development; planning, delivery and evaluation of care; education and training of health care providers) and macro (policy). Each level is associated with a range of types and activities of participation (Vennik & Van De Bovenkamp, 2013; Vennik, Van De Bovenkamp, Putters, & Grit, 2016). In this study, we focus on the meso or organizational level where (representatives of) PO can support their peers and co-evaluate care. To develop the comprehensive survey in order to gain insight into the needs and ambitions of the patients’ associations concerning patient participation at the organizational level, we used several existing frameworks: the well-known participation ladder of Arnstein (Arnstein, 1969), the five types of participation described by Tritter (Tritter, 2009), Tambuyzer’s framework that includes determinants that enhance patient participation(Tambuyzer et al., 2011), eight criteria of ‘self-help friendly hospital’ (Kofahl et al., 2014) and the eight-phase model of Sarrami-Foroushani (Sarrami-Foroushani, Travaglia, Debono & Braithwaite, 2014). Although the majority of the aforementioned theoretical frameworks have been developed for the participation of individual patients, we think they are generalizable to participation by delegates of patients’ associations.

5.6 Method

5.6.1 Questionnaire

The survey was conducted between Feb. 13 and Feb. 27, 2015, and sent to all PO in the Dutch-speaking part of Belgium (n=431). After sending two reminders, we received a total of 111 completed surveys.

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The questionnaire was developed based on an exploratory literature review and interviews with patient representatives and experienced self-help group supporters. A questionnaire of 13 questions was designed using a multi-stakeholders perspective. The first step was to consult three online databases (PubMed, Embase and Ystor) as well as grey literature. Various combinations of the following search terms were used: collaboration, participation, involvement, experts by experience, expertise by experts, self-help groups and hospital. In a second phase, information was collected through explorative interviews with five active members of different PO that have established successful partnerships with hospitals. Based on these two sources of information, a first version of the questionnaire was prepared and subsequently critically evaluated in a peer review session. An adapted version was later reviewed by three staff members and three researchers at the University of Leuven. To test face validity, a third version integrating their remarks was sent to the full board of the Flemish Patient Platform consisting of 12 representatives of PO. Half of the contacted individuals completed the questionnaire and formulated a number of minor remarks that were incorporated into the final version of the survey. The final questionnaire consisted of 13 questions (see appendix A) and eight of these closed questions included an open-end answer option that allowed respondents to give ‘other’ answers. As this exploratory study does not aim to present a survey including an exhaustive list of answer categories, the respondents had the opportunity to give additional answers (if the presented answer categories didn’t cover their opinion).

5.6.2 Variables

Because of the exploratory nature of the research, we decided to focus on all possible dimensions of participation by PO. The global structure of the survey was modelled after the eight-phase model for implementation of consumer and community engagement (Sarrami-Foroushani et al., 2014). Seven dimensions were consequently questioned in the survey:

1. Participating or non-participating in hospitals 2. Assessment of current participation3. Current and desired participation level4. Current and desired participatory methods5. Goals of the participation process 6. Current and desired level of hospital support (conditions)7. Desired competencies (knowledge, attitudes and skills) of delegates of PO to participate in hospitals.

The surveyed variables are further described in appendix A. For the dimensions 3 through 7, it was possible to give multiple answers.

5.6.3 Data analysis

The survey data were analysed by generating frequency distributions for each variable using SPSS. The free text responses were analysed using a thematic analysis which was useful for a more in-depth understanding (Polit & Beck, 2012). After reading and rereading the comments, emerging (sub)themes were identified. As the qualitative data was manageable, no software was used to support the coding process.

The following section presents the main results of the study based on the seven dimensions of the survey where the current and desired situation is described for each dimension. When applicable, the frequencies and analysis of the free text responses are presented per individual aspect.

5.7 Results

5.7.1 Survey participants

We received a total of 111 completed surveys (26% response rate). Patient associations that participated in the survey can be categorized into three sub groups: problem category, degree of occurrence of the problem, and age of the group. Table 7 shows that the respondents are mainly representatives of organisations focused on physical illnesses, caused by common chronic diseases. A large majority of the organisations was established at least five years ago. The response analysis shows that distribution within the sample largely corresponds with distribution across the total of PO.

Table 7: Division and sub groups of survey respondents (n=111).

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5.7.2 Collaboration with hospitals and rating current collaboration

Of the 111 PO that filled out the questionnaire, 67 or 60 % collaborated with one or more hospitals, at present or in the past. 44 or 40% have not (yet) collaborated with a hospital in any sense.

Eight PO (11%) gave a weak (10%) to very weak (1%) score on their current collaboration. 28 (42%) rated it as acceptable, 26 (39%) described it as very good and 5 (7%) viewed their collaboration as excellent.

5.7.3 Other survey results

Table 8 demonstrates the frequencies concerning the participation level. One out of four PO reported that their collaboration currently consists of being informed by hospital staff about information and developments that are relevant for their members and peers (26%). Almost 10% of the respondents participates at the co-producing and patient-driven level. While informing represents the most common collaboration level, the majority of associations aspire to be two levels higher up on the participation ladder, i.e. advising. For half of the PO (49%), ‘advising’ is the participation level most desired, followed by 43% who listed ‘being informed’ as the most desirable level. One out of ten organisations aspired to reach the patient-driven level.

Table 8: Frequency distributions of the dimension ‘participation level’ (multiple responses were possible).

Twenty-three respondents offered extra comments and discussion on the question about participation levels. Patients organisations express their dissatisfaction with the lack of information offered on matters that directly affect their members. Respondents also reported insufficient collaboration: “the hospital does not inquire about our opinion” (resp. 24), “we are often not involved – let alone informed – about issues that concern us” (resp. 47), and pointed to clear potential for more consulting and advising. Participants also expressed their dissatisfaction with the

gap between agreements reached in theory (advisory role of the patient group) and everyday practice (opinion is not asked de facto).

Table 9 demonstrates the frequencies concerning the participation methods. The most commonly used methods are ‘informing and supporting individual peers’, together with ‘the development of leaflets and information brochures’. Both methods were used by 73% of the PO and thus clearly represent the most established ones. For other methods there is no common practice yet. More than three-quarters of the PO describe spreading of leaflets and information brochures (86%) and individual peer support (78%) as desirable.

Table 9: Frequency distributions of the dimension ‘participation method’ (multiple responses were possible).

The open question yielded 44 additional answers, which were condensed and divided into the following four main categories. First, PO want opportunities to communicate their experiential knowledge to both staff and patients. Educational sessions organized for patients so they can become ‘expert patients’ (i.e. ‘Experts Patients Programme’, Lorig, Ritter, Villa and Armas, 2010) is seen as a very useful element. Second, patients want to be represented in the management of the hospital. Third, patients aspire to act as expert patients in the training of professionals. Fourth, doctors or head nurses are asked to invest more time in the collaboration in spite of their time constraints.

The fact that PO offer complementary services to patients in the hospital (52%), increases patient satisfaction (50%), facilitates patient empowerment (48%) and increases quality of care (48%). They are all seen as goals that could motivate hospitals to collaborate. PO view all four of these goals as even more important than they think the hospitals do

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(between 88% and 95%). In addition, the results show that PO also see other goals at the level of participation in the hospital, for instance improving their internal functioning and facilitating the transition of patients to their home (see Table 10).

Table 10: Frequency distributions of the dimension ‘goals of participation’ (multiple responses were possible).

The results in Table 11 demonstrate that the current state of collaboration strongly differs from the desired one. Despite differences in the currently fulfilled conditions, almost all forms of support are viewed as equally important by the majority of the PO (89% through 99%). Practical facilities such as free catering during participation activities represent an outlier and are seen as desirable by only 56% of the PO.

Table 11: Frequency distributions of the dimension ‘preconditions’ (multiple responses were possible).

Patients were also asked in an open question how hospitals might support successful participation by PO. An often-cited response was good communication about organisational changes in the hospital, or about new treatment and protocols (“There is a need for regular evaluation of - and feedback.” (resp. 20)). Second, facilities for expert patients and logistic support for the PO in the hospital were described as nice-to-have conditions but “It is extremely important to take into account the restricted possibilities of each PO.” (resp. 47). Third, PO would like to see more collaboration at the level of continued care after patients are discharged from the hospital (“Doctors, especially, must mention the peer support options and encourage people to use them” (resp. 19)).

Education and support for patient representatives and health care providers are seen as crucial to establish a successful participation process as both groups need to have the right competencies (skills, knowledge and attitudes). The five most important competencies are the same for both peer support and quality improvement: handle confidential information (94% - 94%), communicate viewpoints in a structured way (93%-93%), give and receive feedback (96% - 94%), active listening (95% -94%) and empathise with the experiences of peers (94%-94) (see Table 12).

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Table 12: Frequency distributions of the dimension ‘required competencies’ (multiple responses were possible).

Besides the necessary competencies for representatives of PO listed in the survey, respondents cited a series of additions skills: willingness to collaborate, mutual respect, open communication, patience, time to listen to patients and regular feedback. Moreover, respondents mentioned the following attitudes and types of knowledge: methods to successfully defend patients’ interests and profound knowledge of illness and treatments. Last but not least, respondents called for more time and resources to be invested in collaboration: “Volunteers are not endlessly available” (resp. 10).

As a summery, the open comments in the survey revealed tensions at the level of patient participation: (1) representatives are not sufficiently heard since they feel that their viewpoints are not taken into account, (2) representatives are not consulted about issues affecting them, (3) a gap exists between agreements and their actual implementation, and (4) the advisory role of representatives remains limited to the theoretic level. All these topics suggest that patients and their associations remain in a subordinate position.

5.8 Discussion

60% of the surveyed patient associations participate in one way or another with hospitals, 40% do not. A frequently cited obstacle impeding successful participation is the lack of interaction with the head of a specific hospital department, who is often a doctor or head nurse. They seem to be crucial partners in facilitating collaboration and participation.

While informing represents the most common collaboration level, the majority of associations aspire to be two levels higher up on the participation ladder, i.e. advising. For half of the PO (49%), ‘advising’ is the most desired participation level, followed by 43% who listed ‘informing’ as the most desirable level. When taking a look at the desired participation methods, more than three-quarters of the PO describe producing leaflets and information brochures (86%) and individual peer support (78%) as desirable. Bearing in mind that these two methods are situated at the ‘co-producing’ level, PO are more ambitious than the present situations suggests. The results also demonstrate that, despite differences in the currently fulfilled conditions, almost all forms of support (e.g. staff’s attitudes, formal procedures, communication and information) are viewed as equally important by the majority of the PO. Education and support for patients and health care providers are seen as crucial to establish a successful participation process. The five most cited competencies needed for this are: handle confidential information (94% - 94%), communicate viewpoints in a structured way (93%-93%), give and receive feedback (96% - 94%), active listening (95% -94%) and empathize with the experiences of peers (94%-94).

The findings of the study add six new insights in the complex process of participation. First, when patients and their associations are able to establish a collaboration with a hospital, the likelihood that this partnership will be satisfactory is high. 88% of the collaborating patient associations are fairly to very positive about their collaboration with hospitals. The aforementioned high satisfaction rate however still masks a level of discontentment among PO as mentioned in the open comments of the survey (see 5.3).

Second, PO appear to want to collaborate more closely and intensely. ‘Advising’ seems to be the most-desired participation level, while ‘informing’ represent the most-cited level of current participation. ‘Advising’ indicates that professionals explicitly ask for the opinions of PO, but can nonetheless pursue and reason different proposals and ideas. Giving feedback on this is viewed as a sign of equality and avoids tokenism. The survey comments teach us that patient associations are aware of the requirements (e.g.

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accountability) that come with high participation levels because the higher the participation level, the more influence, responsibility and efforts are needed. Our findings in this respect confirm previous research that the highest level of participation is not automatically the most suitable one as it depends on the aim of the participation process (Adams, van de Bovenkamp, & Robben, 2015).

Third, several respondents propose active exchanging, sharing and combining of their experiential knowledge with the professionals’ clinical and scientific expertise. This clearly indicates that members of PO prefer direct interaction with social workers, nurses, other hospital staff and management in for instance working groups and other face-to-face meetings.

Fourth, most of the associations would like to participate in the production of leaflets and brochures to inform peers, in ad hoc meetings and in peer support activities (to inform and support individual peers). This desire to exchange information is highlighted by the survey comments stating that, despite their limited capacity (time and manpower), patients and their organisations prefer methods that do involve a considerable workload (e.g. questionnaires), or methods that match their experiential expertise (e.g. producing leaflets and brochures to inform peers and support individual peers). Furthermore, peer support and providing information are the core tasks for which patient associations are founded originally (Van de Bovenkamp & Trappenburg, 2011). It is confirmatory that following the literature there is evidence that these two methods are effective (Nilsen, Myrhaug, Johansen, Oliver & Oxman, 2010; Repper & Carter, 2011).

Fifth, our qualitative analysis, however, suggests that patients continue to be in a dependent position vis-à-vis hospitals, this way confirming van Bovenkamp’s findings (Van De Bovenkamp, Trappenburg and Grit, 2010). To overcome their subordinate position, PO wish to strengthen their competencies. They report that open collaborative attitudes are more desirable than disposing of the right knowledge and skills which therefore underlines the importance of careful selection of patient representatives as it is harder to train attitudes than it is to develop skills or knowledge.

Finally, the importance of adequate support for the groups and their representatives as well as for hospitals, is also stressed in previous research literature; support from all stakeholders (e.g. hospital management, decision makers at the policy level) enhances patient participation (Boivin, 2014; Tambuyzer et al.,2011; Castro et al., 2016). An independent intermediary organisation such as a self-help clearinghouse or an umbrella organisation could take care for this kind of support. A large discrepancy,

however, appears to exist between the current situation and the desired situation when it comes to clear guidelines and a written mission/vision. Yet such an agreement appears to be crucial. Clear guidelines (e.g. the guidelines of the German concept “self-help friendly hospital”(Nickel et al., 2016) establishing a framework for the collaboration have also been cited as an import determinant for successful collaboration in other studies (Tambuyzer et al., 2011). Only a third of PO indicated that they have regular feedback moments with hospitals to discuss the collaboration or have meetings to monitor progress on action points that were targeted in service improvement consultations. Other studies have shown that lack of feedback can be demotivating and hinder sustainable collaborations (Linhorst, Eckert, & Hamilton, 2005).

Based on our findings, we suggest some points of actions and recommendations. We conclude that engaging in a meaningful dialogue and mutually trustful relationship with hospital staff are important to increase interest in- and the likelihood of - a successful partnership. Adjusting and relating the collaboration modalities to both the abilities of - and opportunities open to – PO and hospitals will be critical to further improve the collaboration between both (Vennik et al., 2016). Therefore, a “co-design trajectory” before the start of the collaboration could be beneficial. During such a preliminary stage both patient associations and hospital staff can reflect about several aspects of the collaboration (e.g. preconditions, tasks and roles, goals). In addition, clear guidelines that outline what the concerned parties can expect from the collaboration are needed. Also, there is a need for recognition and appreciation of ‘informal’ knowledge. This can be achieved by, among other things, motivating health care staff to systematically refer patients to patient associations. As a result, associations will have more members which is associated with more possibilities. This might help them to receive a (formal) place in the regular care circuits.

5.9 Research evaluation

This exploratory study aimed to provide insights in the current and desired state of collaboration between PO and hospitals. A web survey offered the best way to reach a large number of respondents in a timely manner at a low cost (Polit & Beck, 2012). Bearing in mind that web surveys yield an 11% lower response rate compared to other modes (Lozar Manfreda, Bosnjak, berzelak, Haas and Vehovar, 2008), we applied a number of strategies to increase the response rate (Edwards, Roberts, Clarke, DiGuiseppi, Wentz, Kwan, et al, 2009). However, the response rate of the survey was rather low as Shih & Fan (2009) report an average response rate of 34% (Shih and

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Fan, 2009). Respondents may have abandoned the survey due to the many questions asked. The potential bias caused by the relatively low response rate is, however, partly compensated by the fact that each respondent represents the view of the members of an entire organisation active in hospital settings and the similar distribution between the sample and total population. The likelihood of response bias to the open questions is possible, but we consider it rather small. After all, the open questions mainly examined the contexts or gave the respondents the opportunity to give answers that were not foreseen in the range of answer options and extra comments on the subject.

Currently, the necessity of participation by PO is widely agreed upon. However, our findings cannot easily be transferred from one country to another. The discussed key principles can however have their place in different models of patient participation, either for collaboration between PO and hospitals, or for collaboration between non-organized patients and hospitals. Further research to map the differences in participation activities between subgroups of patient associations (e.g. large and small associations) would be useful. Therefore, more descriptive variables on the nature of the association should be included in the survey. Also, qualitative research is necessary to a more in-depth understanding of the findings

5.10 Conclusion

In this study, the current and desired state of participation of PO in hospitals is investigated. The survey provided useful baseline data. PO prefer to ‘advise’ the health care professionals and the hospital. They prefer to participate through methods that are tailored to their capacities and resources such as informing and supporting peers and professionals in different ways. In terms of conditions for powerful participation, there is still a lot of room for improvement: two-way communication, sufficient support, guidelines, a clear mission and vision and a legal framework of patient participation are seen as critical success factors. Furthermore, the participation process has to be a win-win venture for the hospital and the associations as well.

5.11 Acknowledgements

We wish to acknowledge Peter Gielen, Siel Pirard and Sofie Van Assche for proof reading this paper.

5.12 References

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patient participation in hospital services:a discussion paper

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This chapter is published as: Castro, E. M., Malfait, S., Van Regenmortel, S., Van Hecke, A., Sermeus, W., & Vanhaecht, K. (2018). Co-design for implementing patient participation in hospital services: a discussion paper. Patient Education and Counseling, 101(7), 1302-1305.

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6.1 Introduction

Patient participation is increasingly recognized as a key component in healthcare. Patients’ experiences and knowledge are considered as complementary and equal in importance to professionals’ knowledge (Caron-Flinterman, Broerse, & Bunders, 2005), both in individual care contexts and in healthcare organization (Embuldeniya et al., 2013; Loder, Bunt, & Wyatt, 2013). Direct patient participation methods have been proven to lead to patient-centeredness and better care (Nilsen, Myrhaug, Johansen, Oliver, & Oxman, 2010), but developing and implementing such methods is often a complex matter (Malfait, Eeckloo, & Hecke, 2017; Richards, 2015). The use of the co-design methodology could offer a solution for designing and implementing these complex interventions. ‘Experience-Based Co-Design’ is a specific form of co-design in healthcare. “Experience-based” refers to how patients feel about the used healthcare services and how well they serve their needs. “Co-design” indicates that both patients and healthcare professionals act as designers of the healthcare services. Also, it can be seen as an implementation strategy as it has the potential to counter reluctance within healthcare teams (Tyler, Lepore, Shield, Looze, & Miller, 2014). Overall, EBCD is a rigorous participatory approach that enables both staff and patients to (re)design services together by sharing experiences, identifying priorities, implementing and evaluating improvements in care and service provision (Bate & Robert, 2008).

6.2 Background of EBCD

EBCD has already been used in several countries, in at least 57 projects, and in a variety of settings (Donetto et al., 2015). It originates from design science and draws on the idea that products and services could be improved by involving the end-user in their design. By combining insights from design science, organizational learning and patient engagement, Bate & Robert (2006) transferred this user-centered approach into the healthcare context. Using a range of qualitative methods, the approach seeks to capture and understand how people actually experience a process or service in healthcare. Key moments that shape a person’s overall experiences (‘touch points’) are identified. Patients and hospital staff then jointly set priorities and seek solutions. A full version of EBCD

6 Chapter 6: Co-design for implementing patient participation in hospital services: a discussion paper

includes eight stages: (1) gathering hospital staff experiences through clinical observations, (2) filmed in-depth narrative- based interviews with patients or families, (3) editing the interviews in a 30-minute trigger film, (4) staff feedback event to review themes from staff interviews to identify priorities for improving services, (5) patient feedback event to view the edited film and to identify priorities for improving services, (6) joint event bringing staff, patients or families together to share their experiences of a service and identify their shared priorities for improvement, prompted by an edited 30-minute trigger film (7) co-design groups of staff, patients or families working on implementing improvements relating to identified priorities, and (8) an evaluation/celebration event (Tsianakas et al., 2012). Recently, accelerated versions of EBCD have been designed and tested using video interviews from a national database (Locock et al., 2014), but the innovative elements of remained the same: patients’ active involvement throughout the entire improvement process, including implementation.

6.3 Methods

We describe three studies to illustrate the fit between co-design and implementing complex healthcare interventions; each study used co-design to (re)design and evaluate a patient participation intervention introduced by the researchers. Applicability of the interventions, based on theoretical knowledge, needed to be discussed with those who would benefit from them or might be harmed by them. Therefore, patients and hospital staff were involved by use of interviews and group meetings. Two important considerations in the evaluation of interventions were desirability and feasibility. Although the three studies used co-design, they varied in terms of scope, length and complexity.

The first study aimed to design and implement the ‘experts by experience intervention’, which involved trained patients in the delivery and evaluation of hospital services (Borkman, 1976; Castro, Van Regenmortel, Vanhaecht, Sermeus, & Van Hecke, 2016). Experts by experience were systematically involved to support their peers and provide feedback to hospital staff about the care and its organization. The intervention took place in three settings of a large university hospital in Belgium. In each setting, a full co-design trajectory was performed. Experts by experience were, together with other patients and healthcare staff, involved in the co-design process. Adaptation were made to the original EBCD-version. First, participants were informed about the co-design trajectory by means of a video message. Second, discharged patients (>1year) were also included to provide a broader perspective on healthcare by including patients who had already processed their physical and mental problems. Third, researchers provided literature-

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based knowledge during the process to equally combine experiential knowledge, practical knowledge and scientific knowledge. Lastly, staff interviews were filmed to treat patients and hospital staff equally. The two latter adaptations are grounded in the responsive evaluation and the empowerment evaluation methodology which served as a framework in our study (Abma & Stake, 2002; Fetterman & Wandersman, 2007). Reflecting on our approach, the embedding of co-design in the two well-established evaluation frameworks increased mutual understanding and facilitated an open dialogue among stakeholders. To ensure full participation of the experts by experience it was necessary to conduct an extensive co-design trajectory where all aspects of the intervention and its implementation were discussed together (e.g. goals of their engagement, tasks and roles, practical organization, dissemination of the project). However, our approach was costly and time consuming as 45 individual filmed interviews, nine group meetings and nine co-design groups were organized together with four researchers and three moderators.

The second study aimed to develop and implement the Tell-us Cards in eight settings in six hospitals. The Tell-us Card is a tool, which facilitates communication between nurses and patients by inviting patients to write on the Tell-us Card what is important for them concerning hospital discharge. The card offers the possibility to identify patients’ preferences and needs to be acted upon by nurses (Jangland, Carlsson, Lundgren, & Gunningberg, 2012; Sehgal et al., 2008; Sehgal, Green, Vidyarthi, Blegen, & Wachter, 2010; van Belle, Zwakhalen, Caris, Van Hecke, & Heinen, 2017). Admitted patients and nurses were selected in each setting to participate in the co-design trajectory to tailor the tool for the local context. Due to the practical nature of the Tell-us cards, the co-design process was comprehensively shortened. Film-editing in the third stage was replaced by using audio fragments from the interviews of both nurses and patients. The sixth, seventh and eighth stage were held together. In our opinion, the co-design approach was supportive in tailoring the intervention and creating acceptance on the ward. However, a more substantial and comprehensive explanation of the intervention to prepare the stakeholders would have been useful. The duration of the shortened trajectory was sufficient.

The third study used the co-design trajectory to design and implement bedside handovers on nursing wards. Bedside handover is a process where the shift-to-shift report between nurses is delivered at the patient’s bedside to improve the patient’s involvement (Anderson & Mangino, 2006). The goal was to use bedside handovers as new standard in fourteen services in eight hospitals. Admitted patients and nurses were involved to fine-tune the intervention. To reduce length and intensity of the co-design process, adaptations were made to the classic EBCD-trajectory. First, all

respondents received an information brochure in combination with verbal explanation. Second, patients were selected on availability (i.e. present on the ward). Third, instead of using an edited film, written quotes from patients were used in the third stage of the co-design trajectory. As the intervention was quite straight-forward, the sixth and seventh stage were merged. Finally, the celebration event was not organized but comprised of a gift in the final session. The adaptions were made from a perspective of cost-effectiveness. Looking back to our co-design trajectories, our approach enabled us to tailor the intervention for both patients and nurses, without overusing the available time resources. Moreover, the interactions with patients were valuable to overcome barriers that were initially reported by nurses. As such, we consider co-design as an appropriate implementation strategy. However, we experienced one difficulty: by using written quotes from patients instead of videos, nurses were confronted with patients’ opinions quite late in the trajectory.

Based on observations, recordings and field notes of the 25 co-design trajectories in 15 general and university hospitals in Flanders, two research teams analyzed and triangulated their observations using the five phases of Atkins and Murphy’s model of reflection: awareness, describing the situation, analysis of feeling and knowledge, assessment of the relevance of knowledge, identifying and learning. Experienced barriers and enablers were described, analyzed, and translated into nine points of action and recommendations (Atkins & Murphy, 1994).

6.4 Points of action and recommendations

6.4.1 Preparation of co-design

Sufficient preparation to ensure patients and staff feel comfortable with the method is highly recommended. Both patients and hospital staff should be prepared for the interviews. Being interviewed is usually a new and exciting experience, especially if interviews are (video-/audio)-recorded. For some participants, this method can even be slightly frightening and prevent patients from speaking freely. To create trust and put participants at ease, we suggest providing patients with a detailed explanation of the trajectory and the purpose of the interviews, not solely on paper but also on film/in person. Preparations and planning are important, but so is ‘letting things go’, as not everything is controllable. For example, some patients abandoned the project and continuing to pursue these patients is not recommended as it contravenes the principle of patient self-determination, which should be respected in all co-design trajectories.

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6.4.2 Recruitmentofpatientsandhospitalstaff

Patients as well as hospital staff should be purposefully recruited. Patients had difficulties extrapolating their individual experiences because of their health condition (e.g. still processing a traumatic experience). Therefore, patients with a less recent hospital experience were also included. In terms of patient recruitment, the three studies showed that it was desirable to collaborate with a head nurse or physician to facilitate initial contact with participants, although the risk of selection bias increased (Hahn, Puffer, Torgerson, & Watson, 2005). To support acceptance and successful implementation of an intervention a multidisciplinary sample of hospital staff should be recruited. An open but critical mindset and willingness to collaborate in this empowering participatory trajectory are essential for both hospital staff and patients. Furthermore, to assess the intervention, hospital staff should feel free to give constructive feedback.

6.4.3 Practical support

The effect of contextual factors such as practical arrangements should not be underestimated. Some examples to take into consideration are reachability, accessibility of the location, name badges so that participants can be addressed personally, catering so that participants feel welcome, a little present to thank the participants, etc. It was useful to have an additional person onsite to help patients with these logistic arrangements (e.g. transport), to support all stakeholders during several activities (e.g. giving additional explanation in smaller groups) and to assist the moderator by safeguarding the research process (e.g. making field notes based on observations). This type of support services and practical assistance are necessary to allow the moderator to focus on enabling interaction and effective group discussions.

6.4.4 Group cohesion

An important task of the moderator is to facilitate group cohesion by taking group dynamics into account. Group dynamics refers to a system of behaviors and psychological processes occurring within or between (a) social group(s) (Franz, 2012). Facilitation of group cohesion can be challenging as it might be hampered by inequalities associated with traditional roles of patients and healthcare professionals, in which patients mainly rely on healthcare professionals’ knowledge and where healthcare professionals tend to use a rather paternalistic approach. This approach was sometimes observed in the first part of a joint meeting: the group of

patients sat on one side of the table and the group of professionals on the other side of the table. Patients barely spoke. Next, the moderator showed the filmed interviews. To facilitate group cohesion professionals and patients were asked to reflect on their activity in small mixed groups. During the second part of the meeting, the two ‘subgroups’ spontaneously took mixed seating positions at the table, resulting in an open discussion of the various experiences. Apparently, the combination of showing the edited films and the reflection exercise in mixed subgroups was very valuable to achieve connectivity.

6.4.5 Combination of methods and tools

In an attempt to overcome the lack of (participatory) ideation tools provided in EBCD (Bowen et al., 2013), we used specific, mostly qualitative, research methods in combination with creativity-oriented methods to organize the meetings. Amongst others, rating scales, imaginary cases and other focus group techniques such as written citations and video quotes were used (de Bono, 1985; Miaskiewicz, Lisboa, Campolide, & Kozar, 2011) next to several interactional materials such as notepapers and feedback on presentations. The combination of these methods and tools proved appropriate and in line with the aim of the meeting and its participants, provided guidance, interaction, variety, and trustworthiness in an informal atmosphere.

6.4.6 Ensuring mutual respect

All participants need to experience that their point of view is taken seriously. Ensuring mutual respect, avoiding unnecessary jargon and safeguarding an equal distribution of patients and staff are indispensable. We suggest avoiding meetings with more professionals than patients or vice versa. Including more patients than professionals may lead to the assumption that the patient’s voice is not be as powerful as the professional’s. The moderator should create a safe environment, in which an open, respectful and authentic dialogue between participants with differing perspectives can take place. This can be achieved by interviewers adopting an open attitude themselves, having participants introduce themselves informally, using humor, and specific methods such as Metaplan, in which participants first write down ideas on slips of paper before they are discussed in group. Only those who are willing to provide extra explanation, do so.

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6.4.7 Common ground

Searching for common ground should be one of the key objectives of a co-design trajectory. This is achieved by first exploring the experiences of patients and healthcare professionals in separate groups, followed by an integration in a joint group. This process allows participants to first differentiate, share basic assumptions and subsequently move towards integration, aiming to determine the common denominator. It can be supported by identifying, mapping and comparing the differences rather than ignoring them (Begeer & Vanleke, 2016; Weisbord & Janoff, 2007). Again, the use of ideation tools is indispensable.

6.4.8 Avoiding participant drop-out

Drop-out and short hospital stay causing discontinuous involvement of participants might disrupt equality and perhaps empowerment (Fetterman & Wandersman, 2007). Three ways to achieve continuous involvement are to include discharged patients, reward them for their contribution, and capturing the interviews of patients as well as those of hospital staff, in videos, recordings or written quotes. By showing these to the participants, they gain insight into each other’s perspective, which provides a solid basis for further exchange of ideas. Including the quotes from hospital staff is not part of the original version of EBCD. The statements could be confrontational for patients, who still need the support and care of the staff during their hospital stay. However, in our experience, professionals who are willing to participate in a co-design trajectory refrain from disrespectful or offensive statements.

6.4.9 Knowledge convergence

Aiming to effectively co-design interventions, all voices should be heard: those of healthcare professionals and their practical knowledge, of patients and their experiential knowledge and of researchers and their theoretical knowledge (i.e. by a preceding literature review). Following the empowerment theory, this combination of different types of knowledge will lead to more sustainable and accepted interventions in practice (Fetterman & Wandersman, 2007). The EBCD method upholds this principle through the use of group meetings, in which different types of knowledge converge. However, in our experience the frequency of knowledge convergence (i.e. the duration and comprehensiveness of the co-design trajectory) should be determined by the complexity and concreteness of the proposed intervention. For example, the first study (i.e. the involvement of experts

by experience) was more complex (more interacting components (Craig, Dieppe, Macintyre, & Michie, 2008) than the second (i.e. Bedside Shift Reporting) and third study (i.e. Tell-us Cards). Therefore, in the first study we conducted the full EBCD trajectory but in the second and third study, researchers felt this would not have an added value. As such, in light of a balance between costs and benefits, we suggest adjusting the number of meetings to prevent unnecessary overshooting.

6.5 Conclusion

We reported the value of co-design in studies on implementing complex patient participation interventions, and provided insights from a researcher’s perspective. Two conclusions can be drawn from our findings. First, although the effects and process of co-design have been reported frequently (Tollyfield, 2014; Wright, Lowton, Robert, Grudzen, & Grocott, 2017), practical advice on how and when to use it remains limited. We are convinced that co-design can be helpful as a participatory research method in healthcare thanks to its combination of several research methods and the systematic convergence of stakeholder perspectives. We found co-design to facilitate group dynamics resulting in constructive collaboration. Furthermore, we retrieved one of the foundations of EBCD (user involvement in product improvement) and included the innovative aspects of EBCD such as the dynamic sequence of several meetings, in varied forms, using several methods, all enhancing a perpetual motion of evaluating and (re-)designing an intervention.

Second, we consider co-design a useful tool for designing, evaluating and implementing complex patient participation-related interventions. We found the practical step-by-step approach of co-design, in which the perspectives of patients and healthcare professionals are brought together, to be a critical factor in overcoming reluctance in practice and designing methods tailored to patients and healthcare practitioners. We consider it necessary to adapt the approach to the proposed intervention, using either an extended or accelerated trajectory, depending on the scope of the intervention. A balance between costs and benefits should be taken into account when planning co-design.

Overall, co-design can be considered as the future method for quality improvement, research, intervention development and implementation. In this reflective paper, we suggest nine recommendations for further use, grounded in the essentials of empowerment and placed within a societal responsible framework of costs and benefits.

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Sehgal, N. L., Green, A., Vidyarthi, A. R., Blegen, M. A., & Wachter, R. M. (2010). Patient whiteboards as a communication tool in the hospital setting: A survey of practices and recommendations. Journal of Hospital Medicine, 5(4), 234–239.

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7A framework for the involvement of experts by experience in the delivery and evaluation of hospital services:a qualitative study

Chapter

This chapter is co-authored by Tine Van Regenmortel, Walter Sermeus, Kathleen Claes (KU Leuven), Carlotte Kiekens (UZ Leuven), Marie-Anne Morren (UZ Leuven) and Kris Vanhaecht, and is currently under review.

7.1 Abstract

Background: Current hospital care is unable to meet all the needs of patients with chronic diseases or disabilities. There is a gap between care offered by hospitals, which is mainly driven by medical knowledge, and the needs of patients with chronic illnesses for practical knowledge, drawn from experience, and psychosocial support. The introduction of experiential knowledge has the potential to fill this gap.

Objective: This study aimed to test and evaluate the involvement of experts by experience in the delivery and evaluation of hospital services. Facilitating factors and effects were identified and a framework for the involvement of experts by experience in hospital services was proposed.Setting: Three hospital departments (physical and rehabilitation medicine, nephrology, dermatology), on three sites, in a large university hospital.

Methods: The intervention was developed, tested and evaluated using qualitative methods. First, a co-design trajectory with patients, experts by experience and healthcare professionals was conducted to design a feasible approach to involve experts by experience in the delivery and evaluation of hospital services. Secondly, nine group interviews and twenty-one individual semi-structured interviews were conducted to identify key drivers and effects. The group interviews and individual interviews were audio-taped, transcribed verbatim and analysed using the QUAGOL-method.

Results: The results revealed seven facilitators or drivers (a shared vision on care and patient involvement; collaboration as partners; unconstrained commitment of the experts by experience; informal approach within a formal normative framework; continuity and regularity of the involvement; recruitment, selection, training and support; practical preconditions) and twelve effects, of which five were related to the patients (a), three to the experts by experience (b); and three to the healthcare professionals and unit management (c) ((a) humanized care; stimulating care environment; identification and recognition; awareness of preventive actions; easy access to mental, social and practical support; (b) sense of significance; sense of fulfilment; process of growth; (c) insights into the psychosocial

7 Chapter 7: A framework for the involvement of experts by experience in the delivery and evaluation of hospital services: a qualitative study

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factors of health; more competencies; job satisfaction).Conclusions: The involvement of experts by experience is a complex intervention and its implementation must be carefully designed. Moving towards a more patient-centred healthcare that aims to facilitate empowerment, requires efforts made by physicians, nurse managers, nurse specialists, allied health professionals and hospital managers.

7.2 Keywords

Patient participation, peer counseling, experiential knowledge, hospital, patient-centredness, patient empowerment

7.3 Introduction

The importance of patient participation at all levels of healthcare is widely and increasingly recognized (Beard & Redmond, 1979; Coulter, 2002; World Health Organization, 2004). Potential benefits of patient participation are better care and better health (Castro, Van Regenmortel, Vanhaecht, Sermeus, & Van Hecke, 2016; Mockford, Staniszewska, Griffiths, & Herron-Marx, 2012). However, the current focus of participation of patients is mainly on individual patients, for example by allowing patients to engage in informed decision-making and involving them in their own care. Less is known about patient participation at organizational level of hospitals (Carman et al., 2013; Coulter, 2016; Sharma, Knox, Mleczko, & Olayiwola, 2017). Therefore, this study evaluated the involvement of expert patients, i.e. trained patients or “experts by experience” (preferred term) as caregivers and evaluators in hospital services.

In mental health, experts by experience are already structurally engaged in care at several places in various countries. Their involvement is associated with improved mental health confidence of patients, fewer care needs, fewer self-reported symptoms and less likelihood of institutional residence (Boevink, Kroon, van Vugt, Delespaul, & van Os, 2016). In somatic healthcare, experts by experience are currently only occasionally involved in hospitals services, e.g. when a patient explicitly asks to meet a fellow-sufferer or when a hospital board seeks the advice of a patient representative in specific matters of care or organization. Structural participation of experts by experience has the potential to bridge the gap between the supply-sided mindset of professionals on the one hand, and needs, expectations and preferences of patients with chronic health conditions on the other. Nevertheless, this structural involvement of experts by experience has not been studied yet.

Experts by experience are patients with experiential knowledge and appropriate competencies to bring this knowledge into action (Borkman, 1976). Armed with this type of knowledge, experts by experience can contribute to direct care as well as care organization (Nickel, Trojan, & Kofahl, 2016).

With respect to direct care (Carman et al., 2013) experts by experience can provide mental, social and practical care (although not completely the same, some authors refer to it as ‘peer mentoring’, ‘peer counseling’ or ‘peer support’ (Beauchamp et al., 2016; Embuldeniya et al., 2013).

Experts by experience have the potential to complement existing medical-technical know-how with experiential knowledge. This facilitates patient empowerment (Castro et al., 2016) which is an important goal put forward by supranational organizations such as the World Health Organization (World Health Organization, 2015). The emphasis is on assisting people in gaining control over the factors that affect their quality of life.

With respect to care organization (Carman et al., 2013), experts by experience can co-evaluate how care is organized. As a result, healthcare organizations can deliver care that is more patient-centred (Berwick, 2009) and, as some authors suggest, at a lower cost (Hwang & Christensen, 2008). The literature demonstrates various examples of successful patient feedback (Crawford et al., 2002; Mockford et al., 2012; Sharma et al., 2017). Nevertheless, examples exist where professionals do not seem to value patients’ remarks and observations (Solbjør & Steinsbekk, 2011). An often-cited criticism is that patients merely reflect from their individual viewpoint and experiences and that they lack the knowledge about the care system in which they participate to formulate appropriate feedback. Therefore, the effect of their insights on the daily work of healthcare professionals is reported to be rather limited (Solbjør & Steinsbekk, 2011). The involvement of experts by experience is a type of patient participation that may counter this criticism since experts by experience possess the essential competencies to evaluate care organization in hospitals.

Although it is clear that both hospitals and patients can benefit from involving patients, there is no consensus on how they should participate systematically and what effects this can actually bring to healthcare professionals and patients (Coulter, 2016; Crawford et al., 2002; Mockford et al., 2012). Therefore this study aims to investigate the results and critical ingredients for achieving the maximum benefit of involving experts by experience in hospital services, from the perspective of healthcare professionals, patients and experts by experience themselves. The specific research questions to which answers are given are: What are the drivers of

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involving experts by experience in hospital services? What are the effects of involving experts by experience in hospital services?

7.4 Methods

7.4.1 Setting

The intervention took place in three hospital departments at three sites of a large university hospital in Belgium. These comprised a rehabilitation centre (department of physical and rehabilitation medicine), a renal centre (department of nephrology) and an ambulatory centre for patients with dermatological diseases (department of dermatology). In the rehabilitation centre, the target group consisted of patients with an amputation or a spinal cord injury. Patients stay there between some weeks and one year. At the renal centre, ambulatory haemodialysis patients were targeted. These patients are treated with haemodialysis for four hours, three days a week. In the dermatology consultations, the focus was on adolescents with atopic eczema. On average, they visit the hospital every three months.

7.4.2 Procedures

The reporting of the research process was guided by the consolidated criteria for reporting qualitative research (COREQ) (Tong, Sainsbury, & Craig, 2007). This study is part of a broader research study, guided by the framework of complex interventions (Craig, Dieppe, Macintyre, & Michie, 2008). To develop the intervention, a literature review and experience-based co-design trajectory was conducted (December 2015 – August 2016). A range of qualitative methods was used to select a purposefully composed sample of 45 participants (patients and healthcare workers) to be involved in designing a feasible intervention. The development phase resulted in an intervention to involve experts by experience in the service delivery and evaluation, which is described using the TIDieR-framework (Hoffmann et al., 2014) (see Appendix D). During nine months (October 2016 – June 2017) the intervention was tested, refined and evaluated. Fourteen experts by experience were employed: six at the rehabilitation centre, four at the renal centre, and four at the dermatology consultation. At the dermatology consultation, young experts by experience (18 – 24 years) were involved because the target group consisted of adolescents. The evaluation of this study is further described in this article.

The study design was based on the responsive methodology originally developed as an approach in qualitative evaluation studies (Abma & Stake,

2002). This type of evaluation inquiry aims to foster a dialogue among various stakeholders to enhance personal and mutual understanding of a situation. A key principle is that all participants should have their say, also the less powerful ones. The added value of using responsive evaluation for this study is the presence of contextual information, which is essential when planning an implementation of a complex intervention such as involvement of experts by experience on hospital wards.

To facilitate a safe climate where people can express their opinion, our study consisted of two phases, each with a method that was most appropriate for the target group. The initial phase aimed to evaluate the project from the perspective of experts by experience and healthcare professionals. This phase included a homogeneous group with only experts by experience, a homogeneous group with only professionals and subsequently a joint heterogeneous group including both experts by experience and professionals. The issues discussed in the homogenous groups, in which respondents in similar positions could exchange experiences, were introduced into the heterogeneous groups. The second phase aimed to evaluate the project from the perspective of patients. Patients were interviewed in one-to-one interviews.

In the first phase, three group interviews were conducted on each hospital ward, nine in total. These interviews lasted from 60 min to 150 min and were carried out in a room on the hospital ward. They were led by three experienced moderators, who had also led the group meetings during the co-design trajectory. The three hospital services each had their own moderator, thus ensuring that participants felt safe and comfortable. The principle researcher observed the group interviews and took field notes. In the second phase, 21 semi-structured interviews were conducted, which lasted from 25 min to 60 min and were carried out in a room at the hospital ward or at the respondent’s home. A team of four researchers (the three moderators and the principle researcher) conducted the one-to-one interviews. Before the interviews, researchers discussed their preconceptions and attitudes in order to ensure an open and non-judgmental attitude (‘bracketing’) (Polit & Beck, 2012). Each researcher transcribed his own interviews in full and the transcripts were checked against recordings. After transcription, the 21 interviews were delivered to the respondents for feedback (‘member check’).

7.4.3 Sampling strategy and recruitment

In the first phase, a purposive sampling technique was used in that the sample was taken from our co-design groups. All experts by experience involved in the project and all members of the multidisciplinary team, who

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had already been involved in the previous co-design groups, were invited. Table 13 shows the number of respondents of the group interviews. Table 14 shows the demographic variables.

In the second phase, patients in the three hospital centres who had had two or more recent contact moments (< four months) with the experts by experience and without any cognitive impairment, were included. Sampling was purposive, designed to provide maximum diversity in gender, age and condition. First, respondents were contacted by a healthcare worker or expert by experience. Next, the researchers contacted them by telephone to give more detailed information. Recruiting was stopped once saturation was reached (i.e. when new or different subjects and perspectives were unlikely to be provided by additional participants).

Table 13: Number of participants of the group and individual interviews.

Table 14: Participants’ characteristics

7.4.4 Questions

During the two phases, moderators used a topic guide with probes to elicit information while offering space for discussion to obtain rich, detailed information (Polit & Beck, 2012). The main topics discussed were the experiences with the intervention, points of improvement and effects. Questions were formulated in a logical sequence, moving from general to specific questions.

7.4.5 Data analysis

Data were analysed using the QUAGOL-method, which enables the researcher to work systematically and which is inspired by the constant comparative method of the Grounded Theory approach (Dierckx De Casterle, Gastmans, Bryon, & Denier, 2012). First, the researcher described the data verbatim and familiarized himself with the data by reading and rereading the manuscripts. With the research questions in mind, emerging (sub)themes were identified. In accordance with the guidelines for qualitative analysis, the process consisted of two steps allowing the researcher to obtain in-depth insights by iteratively moving between the stages. The first step included the preparation of the coding process. Only paper and pencil were used to develop the empirically based framework (i.e. a list of contextually and analytically meaningful concepts). The second step included the actual coding process. Coding software was used to allow a systematic analysis of the concepts based on the data, ending with an empirically based description of the results. The coding process, conducted by the principle researcher, was supported by NVIVO 11 software. Subsequently, the labeling of emerging themes and subthemes was critically evaluated in a peer review session with the other researchers involved.

7.4.6 Ethical considerations

The study protocol (B322201627024) was approved by The Ethical Committee of the University Hospitals Leuven (Belgium). All respondents provided informed consent.

7.5 Findings

Drivers and effects were detected. The seven (primary) drivers are each associated with several secondary drivers, which are described per primary driver. Figure 1 gives an overview of the findings using a combination of the Bowtie and Drivers diagram (Goldmann, 2018) (see Figure 13).

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Figure 13: Overview of drivers and effects of involving experts by experience

7.5.1 Drivers

7.5.1.1 A shared vision on care and patient involvement

Preceding the development of a common approach, both management and hospital staff need to be convinced of and actively support the involvement of experts by experience. Subsequently, professionals and experts by experience should work out a shared vision together, which values both experiential and professional knowledge. Experts by experience’s experiential knowledge should be considered complementary to the professional’s theoretical and technical knowledge. Involving experts by experience should not be perceived as a cost-saving solution whereby experts by experience take over tasks from professionals to save money.

“A positive outlook, without any distrust, is important. The team must be ready for it; as a matter of fact, you must believe in it in advance.” (participant 12, professional)

“(…) I think it is a very valuable addition.. I always put it like this ‘we, the professionals, do our best to empathize, but we can’t, we don’t know what that is, to have an amputation or a spinal cord injury’. You can only get this type of information from, patients, the experts by experience. I often referred someone telling them ‘discuss it with one of them now’ and they did. So, what people got as feedback from the experts by experience, was always positive. People were very satisfied” (participant 11, professional)

7.5.1.2 Collaboration as partners

A successful complementary collaboration between professionals and experts by experience firstly implies a clear distinction between tasks and roles: experts by experience can never take over or operate in the same line of activity as that of professionals. A clear understanding of this distinction eliminates resistance and distrust with professionals. Secondly, an active engagement, in which all parties take their duties and roles in the involvement of experts by experience seriously, ensures sustainable collaboration. Time constraints to interact or communicate with experts by experience, can no longer be put forward as impediments. Thirdly, an ongoing and open dialogue, in which each voice is equal, is desirable to facilitate interaction and exchange of information. Open communication is necessary between the team of professionals and that of experts by experience, but also within the teams internally. In order to achieve these three aspects related to a successful collaboration, it is highly recommended that the involvement of experts by experience is jointly prepared (for example in a co-design trajectory). This will result in a more sustainable and broadly accepted collaboration .

“It is important that the work is not underestimated. It takes more work than you would imagine beforehand and in the end the commitment is greater than expected. I do think it is important that this is taken into account. You should get a feel for it, for example, you should prepare the workshop thoroughly. In order to collaborate in a good way, it is important that everyone respects the agreements.” (participant 23, expert by experience)

7.5.1.3 Unconstrained commitment of the experts by experience

The experts by experience’s flexibility and their purely voluntary support are highly valued. Patients feel that experts by experience are genuinely concerned with them and that they really want to help, for example because their engagement is not limited to working hours.

“ I think that it is always an added value to meet someone who has experienced the same thing, rather than someone who has never experienced it. I think that is much stronger, more authentic. I don’t say that if the doctor told me that, then I would not believe it. But the fact that.... people who come to support you, on a voluntary basis, making time to get in touch with you, that is a very genuine gesture, and I also find it admirable that these people want to do this.” (participant 30, patient)

7.5.1.4 Informal approach within a formal (normative) framework

On the one hand, informal, spontaneous interaction between experts by experience and patients seems to be crucial. It ensures a more natural conversation, which takes off as a casual encounter and evolves into a more in-depth dialogue. On the

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other hand, clear agreements (e.g. tasks and roles), guidelines (e.g. how to deal with a conflict) and procedures (e.g. how to give feedback to the professionals) allow experts by experience to carry out their work in a structured environment. A supervisor or ambassador of the hospital service can monitor whether the intervention is performed as described in the formal framework.

“I could ask what I wanted. There were no protocols, questionnaires or boxes to tick. (...) And then they just started chatting, as if you were sitting at a table in a café and you tell something as if you were talking to friends without thinking about the effects of what you tell.” (participant 31, expert by experience)

7.5.1.5 Continuity and regularity of the involvement of experts by experience

The continuous and regular involvement (in contrast to an ad-hoc involvement) facilitates embedding of (the work of) the experts by experience in the hospital service. As such, experts by experience can become acquainted with all team members and gradually build trust. Patients, and professionals as well, can look forward to and count on their presence. To ensure a continuous, regular and availability, a team of experts by experience (i.e. more than one expert by experience) who carry out the work, is desirable. In addition to reasons of feasibility, this also allows matching with peers and offers a safer environment for the experts by experience, as one is not the only ‘rookie’ in the hospital service.

“I think we have achieved a lot more by just being here so often and regularly, as opposed to being here at the request of a particular patient.” (participant 2, expert by experience)

7.5.1.6 Recruitment, selection, training and support

Experts by experience should have a variety of competencies: a positive attitude (e.g. discrete, constructive, empathetic), appropriate knowledge (e.g. hospital procedures) and skills (e.g. communication skills) to transfer their experiences in an expert manner. Furthermore, they need to be able to transcend their own personal perspective and should have come to terms with their condition, insofar as possible.

“He is always calm, friendly and chats with everyone. Yes, that’s a good thing. If you asked something, he would always answer the question. Any kind of question actually, whether it’s about cycling or about medical interventions”. (participant 43, patient)

Careful recruitment and selection ensures that the experts by experience have the desired attitudes needed to support their fellow patients in

hospitals. Specific training refines their skills and knowledge and provides a solid basis for carrying out their work with confidence.

In order to ensure that experts by experience can maintain their authenticity and do not evolve into proto-professionals, sufficient support should be available, through inter- and supervision, combined with individual coaching sessions. It may be preferable that an external, independent organization with expertise in supporting patients (e.g. self-help clearinghouse), takes on this supporting and facilitating role. A permanent external contact person, who builds bridges between experts by experience and health workers, can strengthen the collaboration.

A careful selection procedure, followed by training and support ensure more self-confidence among the experts by experience, more high-quality work and more credibility among patients and professionals.

“A selection procedure and training is simply necessary for everyone and we also need an external counsellor, a pivotal point outside the hospital, I think this is important.” (participant 15, expert by experience)

7.5.1.7 Practical preconditions

Practical preconditions may seem less important, but they are not. On the contrary, they ensure an equal and respectful approach of the experts by experience and enhance efficiency. First, multimedia devices such as computer or telephone can facilitate communication and the actual engagement of the experts by experience. Second, facilities such as an easily accessible room for the experts by experience, facilitate the accessibility and visibility of the experts by experience, especially on large hospital wards. Physical and psychological proximity seem to go hand in hand.

“Limited visibility and poor reachability are an obstacle. For example, if you are working with a patient and you think ‘now it would be interesting that [name expert by experience, with a spinal cord injury] would be here to demonstrate this or that’ (…) I don’t want to spend fifteen minutes searching for him” (participant 8, professional)

Third, flyers and posters enhance visibility of the experts by experience. Fourth, practicalities ensuring easy access to the hospital ward are also desirable (e.g. badge, parking space, etc.). Fifth, a fair remuneration, covering at least the costs incurred, facilitates long-term commitment.

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7.5.2 Effectsrelatedtopatients

7.5.2.1 Humanized care

Patients express a higher level of satisfaction because they feel less like a number and more like a person. A trusting bond, endorsed by the sense that experts by experience are more able to show empathy and because they convey a sense that they genuinely want to help, reassures patients. The experts by experience are seen as an anchor in the dynamic, sometimes technical, hospital environment where patients are managed by many different health care professionals.

“Currently, it’s more pleasant, I’ll be honest about it, I feel less of a number.. I feel more relaxed now “(participant 37, patient)”

7.5.2.2 Stimulating care environment

Experts by experience provide a true and insightful picture of how a particular condition can evolve. By focusing on opportunities rather than limitations, they inspire and pass on hope and encouragement, thus facilitating the coping and reintegration process.

“I wanted to give up dialysis but [name expert by experience] helped me out . (participant 37, patient).”

Contact with an expert by experience, who has already undergone a specific therapy or treatment and who is doing well, gives patients more confidence in a positive outcome and a better future.

“Meeting an expert by experience, who has a partner, who is happy, who has kids, is a reassurance.” (participant 35, patient).

7.5.2.3 Identificationandrecognition

Patients are more likely to connect with their peers than with their caregivers “because they really understand what we are experiencing”. Conversations take place on a wide range of topics, sometimes sensitive to discuss with others. This interaction raises feelings of acceptance and understanding, which endorses the feeling of not being alone. This validation of personal feelings is thus an affirmation of the normality of their own experiences.

“With [name expert by experience] I can talk about all kinds of problems. We have a lot of bladder and intestinal problems, for example. You don’t

dare to talk about those things with another person, but you can just say it to him while you are eating lunch, like “oh yeah, bladder inflammation, I have been wetting my bed four times lately.” You cannot talk about such things to another person” (participant 35, patient)”

7.5.2.4 Awareness of preventive actions to enhance compliance

Although this was not the primary aim, experts by experience seem to enhance health literacy (e.g. by re-explaining certain information) and thus facilitate compliance/adherence (e.g. by explaining the reasons why certain medications are prescribed or the reasons why a certain diet should be followed) and prevent additional problems or complications.

“Now I can discuss this with [name expert by experience] because she already has experience with it and she knows what is best. And that has been much more reliable for me and has encouraged me to think about what I can do with my atopic eczema. And I really thought that was a big plus. It made me realize.. like…okay I am not stuck with just my ointments, I can do more to prevent my skin from drying out.” (participant 48, patient)

7.5.2.5 Easy access to mental, social and practical support

Patients with a chronic condition often have several questions about how to deal with practical and psycho-social issues occurring in everyday life. By drawing on their lived experience, experts by experience, are usually able to answer these kind of questions while professionals usually cannot because they do not possess this kind of experiential knowledge.

The support from experts by experience, whether or not in terms of solutions and strategies, is likely to speed up the coping and reintegration process, for example, by stimulating patients’ autonomy (e.g. tips and tricks on how to eat and drink independently).

“I didn’t expect to learn so much from it. That there are tools to actually help me out. It doesn’t go away completely, but they are remedies to improve it (…) It was a bit like that, mmm how shall I say, it gave a new insight into how it is to live with atopic eczema, because you hear different stories and you recognize parts in them, but you also see differences. And with this you can get a better picture of what you have and then you can search for tips and find, give and get tips for each other..” (participant 48, patient)

“Just everything, really everything, such as a pillow to put in the wheelchair, the cost of specially adapted cars, family situations, dealing with a little baby, I have no belly muscles anymore, so getting my little one on my lap

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was impossible... I thought I would never succeed but in the meantime I succeeded because of [name expert by experience]. He demonstrated it and said ‘do it like this or like that’. He helped me with everything, literally everything.” (participant 34, patient)”

“The experts by experience, I found it very pleasing to meet them, because you can ask things you cannot ask a nurse, although she is going to give you an answer, but it’ll be a standard answer that she has read in books. And of which the expert by experience will say: ‘of course, yes, I had some trouble with that and I did this and that to solve it’ (participant 31, patient)”

7.5.3 Effectsrelatedtoexpertsbyexperience

7.5.3.1 Senseofsignificance

Experts by experience consider their work as meaningful. They bring in their experiences and knowledge and receive satisfaction in return.

“I like saying to my children that I go to work, although it’s not a nine-to-five job, but that gives me a boost, personally, that you can contribute to something again and mean something” (participant 4, expert by experience)

7.5.3.2 Senseoffulfilment

Experts by experience report it makes them happy to be able to help others. This is reinforced when they receive feedback or witness improvements in coping strategies of their peers. The more contacts and the more visible the results of their input, the greater their satisfaction seems to be.

“There you can also teach someone something, e. g. how to grab a glass, I have explained and showed how I do it myself. You can convince someone that something is going to succeed, while they think it won’t work. And if it did succeed in the end, you get a very good feeling. I have been able to motivate that person to actually do something of which most of them say ‘it is not going to work anyway’. And I thought by myself: yes! That was so cool to do.” (participant 4, expert by experience)

7.5.3.3 Process of growth

Experts by experience seem to grow into their new role and discover competencies of which they were not aware. Their role as expert by experience also brings benefits to their personal life.

“It was as if I had a personality crisis, I have learned a lot about myself. I have taken on a leadership role for the first time in my life. I’ve learned so much about myself” (participant 22, expert by experience)

7.5.4 Effectsregardingprofessionalsandunitmanagement

7.5.4.1 Insights into the psychosocial factors of health

Professionals benefit from the involvement of experts by experience. Professionals report that their “new colleague” is an enrichment and provides them with insight into the patient’s perspective. Experts by experience provide feedback on the professionals’ routine and the organization of care. This ensures that overall care becomes more tailored to the patient’s needs and brings changes in organizational culture.

“You are confronted with the fact that you can do more than what you are currently doing. It is not just about dialysis, you have to look further. I think that the involvement of experts by experience is very positive; it ensured a process of growth with my colleagues. Experts by expertise are not only beneficial for patients but also for professionals (participant 19, professional).”

7.5.4.2 More competencies

Professionals value the feedback from experts by experience on several topics, for example about their communication styles (e.g. how to inform patients about all therapy options, how to take into account patients’ experiences) and the way they educate patients (e.g. on diet).

“The advice to let patients choose between treatments is certainly taken to heart. For example, I pay more attention to the experiences patient had with a certain ointment, I ask if they like applying it, I give out samples,...At this point, I take into account the patients’ preferences and experiences.” (participant 24, professional).

7.5.4.3 Job satisfaction

Professionals also report an increased feeling of job satisfaction.

“My job satisfaction has increased because of the involvement of the experts by experience, it makes me happy. So it has an influence on the patients but certainly also on myself.” (participant 19, professional)

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7.6 Discussion

As underscored at the beginning of this article, patient participation and empowerment are promoted by various governments, both national and international. One of the arguments is that current healthcare systems are unable to meet all the needs of patients suffering from chronic diseases or disabilities. To date, the main research activity has been concentrated on participation at the micro level (e.g. shared decision-making) (Snyder & Engström, 2016). Initiatives at the level of healthcare organizations are scarce and essentially serve occasional quality improvement and peer support purposes. To move forward, a structured approach of direct forms of patient participation is needed to embrace new collaborative paradigms in healthcare. The current literature is not clear on how participation and empowerment should be promoted in hospitals and what their specific effects are. In response to these gaps, this study provides two important contributions. In addition, in line with Dale’s suggestion to strengthen the theoretical foundations (Dale, Williams, & Bowyer, 2012), an important underpinning process is explained.

The first contribution is that the results from this study reveal some of the key ingredients that structure and support productive patient involvement in hospital services. Our findings demonstrate seven key drivers that enhance a successful participation process: (1) a shared vision on care and patient involvement, (2) collaboration as partners, (3) unconstrained commitments of the experts by experience, (4) interaction between an informal atmosphere and a formal framework, (5) continuity and regularity, (6) recruitment, selection, support and training and (7) practical preconditions. The implementation of participatory approaches within current hospital care is likely to face various obstacles. A critical element that is not directly based on direct empirical evidence, but rather on the investigator’s interpretation of the results is when healthcare professionals have difficulties acknowledging the value of the experiential expertise of experts by experience. In case of doubt regarding its value, patient participation is easily considered as a time-consuming process instead of as a rich and indispensable source of information. In a context where a positivist, empirical-analytical view of knowledge dominates, professionals’ knowledge is usually considered more objective and therefore more superior than that of patients. To avoid any suggestion of inferiority, the added value of experiential knowledge and expertise needs to be clear. Expertise by experience is the expertise built on one’s shared, widened and processed experiences of coping with one’s own body and condition, dealing with healthcare providers and their organizations and handling social reactions (Caron-Flinterman, Broerse, & Bunders,

2005; Thomasina Borkman, 1976). By analysing and reflecting on their individual experiences and by consulting various sources, patients develop ‘experiential knowledge’. When patients share their experiential knowledge (e.g. by relating to peers), their body of knowledge exceeds the boundaries of individual experiences resulting in ‘collective experiential knowledge’. This collective body of knowledge guarantees a perspective that transcends the concrete situation of one individual. A specific training and coaching trajectory ensures the patient possesses the appropriate competencies to bring his experiential knowledge into action, for the benefit of patients (level of direct care) and professionals (level of organizational design).Perspectives on the validity of patients’ experiential knowledge and expertise might depend on the paradigm adhered. All too often, healthcare workers are still operating in an older paradigm of a paternalistic system, which suggests that the only true knowledge is based on objective rational arguments (Carman et al., 2013; Caron-Flinterman et al., 2005; Ocloo & Matthews, 2016). To move towards a more empowering framework of thinking, which values patients’ knowledge as well, professionals should be given the opportunity to experience the added value of the experience knowledge at first hand. Therefore, a co-design trajectory, based on the principles of Experience Based Co-Design (Bate & Robert, 2006), has proven to be valuable. Together with patients and professionals, the current gaps in hospital care can be discussed (Wright, Lowton, Robert, Grudzen, & Grocott, 2017). Patients hold up a mirror to the professionals, and this results in valuable new insights. Moreover, this trajectory was not only beneficial in designing a well-balanced, feasible and effective type of patient participation, professionals also perceived the participative approach as a team-building activity, where they had the opportunity to reflect on care objectives. The second contribution of this study is that the results highlight multiple effects associated with the systematic involvement of experts by experience, all including the improvement of aspects of quality of care (i.e. patient-centredness), empowerment and quality of life. Consequently, there is strong support to claim that all three parties benefit from the process: patients, experts by experience themselves and professionals.First, patients report positive effects such as improved coping, fewer worries, higher levels of satisfaction, identification and recognition, improved adherence and new insights in possibilities in daily life. The benefit for patients receiving support from the experts by experience is partly explained by the social learning theory (Bandura, 1971). This theory provides a comprehensive model stating that learning is a cognitive process that can occur through observation or direct instruction. Experts by experience, who have more experience in dealing with their condition, are credible role models for their peers. Therefore, their interaction with peers is more likely to result in positive behavior change as they are

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successfully coping with their condition themselves. Second, also experts by experience reported a sense of meaning, a sense of connection and a growth process. The literature supports the existence of a ‘reciprocal empowerment process’ between experts by experience and patients. It is referred to as a reciprocal relationship and is explained by Riessman’s (1965) well-known Helper Therapy Principle, which suggests that when an individual (the “helper”) provides assistance to another person, the helper may benefit himself (Riessman, 1965). Third, professionals reported feelings of happiness and higher job satisfaction and they obtained new insights in the care for their patients. This third-party influence is the result of a chain reaction that reaches beyond the original act. In literature, the concept of “reciprocal determinism” explains this chain reaction: the positive behavior of an individual, in this case the expert by experience, in turn positively influences the (hospital) environment (Bandura, 1971; Tsvetkova & Macy, 2014).The effect of engaging experts by experience thus targets several levels simultaneously: the level of direct care (patients and experts by experience) and the level of hospital service (professionals).Several underlying theories explain why peer support activities are beneficial in healthcare. For example, Solomon (2004) and Dennis (2003) refer to the social comparison theory, the social learning theory and experiential knowledge (Dennis, 2003; Solomon, 2004). However, their focus is less on interaction and exchange between different types of knowledge, which in our study emerges as an essential mechanism. According to the French philosopher and physician Canguilhem (1966) (Canguilhem, 1966), there are three types of knowledge: scientific medical knowledge, clinical medical knowledge and patient knowledge. The scientific medical knowledge derives from laboratories and generates knowledge about the way bodies behave in particular conditions. The clinical medical knowledge is fed by scientific knowledge, theoretical knowledge, technical knowledge, clinical practice, experiences of patients, etc. Patients’ knowledge is pragmatically infused by the two former types of knowledge. In living daily with a chronic condition, patients need to translate and apply medical knowledge into practical and feasible strategies within their daily lives. They need to combine the care for their condition with other aspects such as being a parent, an employee or a partner (Pols, 2014).

The care offered by hospitals - merely dominated by medical knowledge – is not always completely fitting the needs of people with chronic illness who also require support based on experiential knowledge. According to Hwang and Christensen (2008) (Hwang & Christensen, 2008), this discrepancy is caused by the lack of business-model innovation. The authors distinguish three types of business models: solution shops, value-adding process business and facilitated user networks. Solution shops aim to diagnose

and solve unstructured problems. To deliver value, they depend on their highly trained employees, such as doctors, who draw on their problem-solving skills to handle complex problems and then suggest solutions. Solution shops deliver customized work. Examples of such organizations are research organizations and hospital services offering acute care. Value-adding process businesses aim to transform resources into outputs of greater value. This occurs in repetitive ways so that processes are more important than resources used in the process. Examples are: restaurants and manufacturing. Facilitated user networks aim to facilitate the exchange of things (e.g. information and support) to and from each other by offering a platform. Examples are Ebay and online communities as PatientLikeMe. Currently, overall hospital care is dominated by the solution shop model, where physicians know best. However, this model does not always fit the needs of people with chronic conditions. According to Hwang and Christensen (Hwang & Christensen, 2008), the facilitated user networks are an ideal business model for the care of many chronic conditions as their principle aim is to connect people. As these user platforms deliver value propositions that are distinct from those of hospital practices, they will improve the quality of care and additionally, will reduce the cost of care. In other words, hospital services will benefit greatly from the introduction of another type of knowledge. Knowledge about everyday life with a chronic disorder, care and treatment is indispensable as not every patient has the capabilities and possibilities to acquire all that knowledge himself. The findings from this study illustrate that the use of experts by experience may fill this knowledge gap. Furthermore, during their interactions with peers, experts by experience collect and identify problems or dissatisfactions, which they use to evaluate the care organization. As a result, they challenge biomedical paradigms and the solution shop model that merely rely on medical-technical expertise.

7.7 Research, practice and policy implications

Three hospital services with a participatory culture were included in the study. The rationale is that literature teaches us that an open attitude towards patient participation is a prerequisite for involving experts by experience (Tambuyzer, Pieters, & Van Audenhove, 2011). Patient participation is culturally located in time, place and population. Hence, it is unlikely that any standardized model will be widely applicable (Dale, 2012). However, further research is recommended.

As stated above, the envisioned impact of involving experts by experience is to facilitate patient-centredness and patient empowerment in hospital care. The intent is not to replace counselling interactions of physicians,

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nurses and allied health professionals but to add a new type of knowledge to the nature of care, beneficial to patients with a chronic disease or disability. Physicians, nurse managers and hospital managers need to help their staff members recognize and value the important contribution that patient involvement can make to improving healthcare. Adding a new type of colleague may well challenge current team structures. Therefore, adequate support of both professionals and experts by experience is desirable.

This new model of hospital care has some implications for policymakers. First, a culture supporting patient involvement initiatives needs to be created. A vital starting point in this is appropriate support to hospitals and experts by experience. For hospitals, the focus will primarily be on financial support. If future research provides strong evidence, the government could support financially for example, to recruit a new staff member to facilitate and monitor patient participation initiatives. For experts by experience, training and coaching is indispensable. Generic training, such as that required for experts by experience in poverty reduction and mental healthcare could be taken in consideration. In these domains, expert by experience have obtained certificates and enjoy a certain status. Moreover, experts by experience are rewarded financially for their contributions. It is highly recommended that policymakers explore experiences gained in these domains to integrate applicable aspects.

7.8 Conclusion

This study provides evidence that patients, experts by experience and healthcare professionals benefit from involving experts by experience in service delivery and evaluation. The results revealed five positive effects regarding the patient perspective (humanized care, stimulating care environment, identification and recognition, awareness of preventive actions, easy access to mental and social and practical support), three effects regarding the perspective of the experts by experience (sense of significance, sense of fulfilment and process of growth) and three effects regarding the professionals (insights into the psychosocial factors of health, more competencies and job satisfaction). However, the involvement of experts by experience in hospital services is likely to be complex. Therefore, it calls for a well-thought-out structured approach which incorporates seven interacting drivers (a shared vision on care and patient involvement, collaboration as partners, unconstrained commitment of the experts by experience, informal approach within a formal normative framework, continuity and regularity of the involvement, recruitment, selection, training and support and practical preconditions). By paying attention to

them, hospital managers and nurse managers can develop and implement more effective patient participation and increase patient-centredness and empowerment in hospital care. To provide more robust evidence, further research is desirable (e.g. a multi-centre study, cost-effectiveness study).

7.9 Acknowledgments

We wish to acknowledge all experts by experience, patients, hospital staff and staff members of the self-help clearing house (Trefpunt Zelfhulp vzw) for their contributions to this study.

7.10 Appendix D: Description of the intervention usingtheTIDieRframework(Hoffman,2014).

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7.11 References

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Castro, E. M., Van Regenmortel, T., Vanhaecht, K., Sermeus, W. and Van Hecke, A. (2016). Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review. Patient Education and Counseling, 9(12):1923-1939.

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Ocloo, J., & Matthews, R. (2016). From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Quality and Safety, (March), 1–7.

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Solomon, P. (2004). Peer Support/Peer Provided Services Underlying Processes, Benefits, and Critical Ingredients. Psychiatric Rehabilitation Journal, 27(4), 392–401.

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Wright, R., Lowton, K., Robert, G., Grudzen, C., & Grocott, P. (2017). Using Experience-based Co-design with older patients , their families and staff to improve palliative care experiences in the Emergency Department : A reflective critique on the process and outcomes. International Journal of Nursing Studies, 68, 83–94. 8Effectsofanexpertsby

experience intervention on the congruence of nurses’ and patients’ perceptions of patient-centred care: a pre-test and post-test study

Chapter

This chapter is co-authored by Tine Van Regenmortel, Kris Vanhaecht, Walter Sermeus, Carlotte Kiekens, Kathleen Claes and Luk Bruyneel, and is currently under review.

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8.1 Abstract

Purpose: This study aims to evaluate measurement invariance of the Individualized Care Scale across patients and nurses. If measurement invariance is established, the degree of congruence in nurses’ and patients’ perceptions on patient-centredness and the impact of an intervention on this congruence are assessed.

Design: A pre-post intervention study design was used. Nurses (n=138) and patients (n=199) of two hospital departments (renal centre and rehabilitation centre) in Belgium were surveyed. Data were collected before (January 2016) and after (June 2017) an experts by experience intervention took place.

Methods: The data were collected using the Individualized Care Scale (ICS-Nurse and ICS-Patient). Measurement invariance was evaluated by conducting multiple group confirmatory factor analysis. To evaluate the degree of congruence in nurses’ and patients’ perceptions on patient-centredness and assess the impact of an intervention on nurses’ and patients’ perceptions, unpaired t-tests were used. Then, using difference in difference analysis we evaluated whether pre-post changes in nurses’ and patients’ scores were significantly different.

Findings: There is a significant gap between the perceptions of nurses and patients regarding the support and provision of individual care. Nurses perceived the individuality of care more positively than patients. This gap remained after the implementation of the intervention. All mean scores increased over time but only statistically significant for patients regarding three out of six subscales. The difference in difference analysis showed that pre-post changes in nurses’ and patients’ ICS scores were not statistically significant.

Conclusions: Nurses tend to consider their provided care as more individualized than patients do. To orient nurses’ perspectives more towards their patients’ perspective, multicomponent interventions are

8 Chapter 8: Effectsofanexperts by experience intervention on the congruence of nurses’ and patients’ perceptions of patient-centred care: a pre-test and post-test study

needed. Embedding experts by experience in the professionals’ team has the potential to foster patient-centredness but needs to focus on patients and nurses equally.

Clinical relevance: Researchers and hospital managers may use the ICS to evaluate interventions that have the ability to close the gap in nurses’ and patients’ perceptions of patient-centredness. This study focused on involving experts by experience, but multicomponent interventions that convey to both nurses and patients may prove more successful.

8.2 Keywords

Pre-post intervention research, Measurement invariance, Patient-centredness, Statistics

8.3 Introduction

During the last two decades, patient-centredness has gained importance. It is seen as a biopsychosocial approach and attitude that aims to deliver care that is respectful, individualized and empowering. Patient-centredness assumes the individual participation of a patient and is built on a relationship of mutual trust, sensitivity, empathy and shared knowledge (Balik, Conway, Zipperer, & Watson, 2011). The concept dates from 1955, when Michael Balint introduced patient-centred medicine as “another way of medical thinking” (Balint, 1955). It gained renewed attention since 2001 when it was promoted as one of the six characteristics of improvement goals to enhance quality of care (Institute of Medicine, 2001). However, its translation in hospital practices is insufficient (Groene, 2011).

One of the key facilitators in implementing patient-centred interventions is measurement and feedback (Shaller, 2007; Luxford, Safran, & Delbanco, 2011). Suhonen (2005) was one of the first to develop an appropriate measurement scale to measure ‘individualized care’ from a patient perspective, using the ‘Individualized Care Scale (ICS-Patient) (Suhonen, Leino-Kilpi, & Välimäki, 2005). This instrument is identified as an appropriate scale to evaluate patient-centredness of care, and is characterized by robust psychometric properties (Köberich & Farin, 2015). Out of this scale used to survey patients, a scale to survey nurses (ICS-Nurse) was developed to measure the level of individualized care also from the nurses’ point of view (Suhonen, Gustafsson, Katajisto, Välimäki, & Leino-Kilpi, 2010). This

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‘mirrored questionnaire’ thus allows a comparison of patients’ and nurses’ perspectives of patient-centred care. Two cross-sectional studies focused on comparing these perspectives and found that nurses have a more positive perception of individuality than patients (Berg, Idvall, Katajisto, & Suhonen, 2012; Suhonen et al., 2012). This incongruence between nurses’ and patients’ perspectives is also present in similar studies which used other measurement scales to measure patient-centredness (McCance, Slater, & McCormack, 2009).

We identify two gaps in the existing literature when it is of interest to compare perspectives on patient-centredness across nurses and patients. First, no attention has been given to evaluating measurement invariance of the concept of patient-centredness across nurses and patients. Measurement invariance is a prerequisite to making fair comparisons across groups. It is defined as “the extent to which respondents across groups perceive and interpret the content of survey instrument items in the same way” (Horn & McArdl, 1992). To compare nurses’ and patients’ opinions on patient-centredness, it is crucial that respondents of each group hold similar conceptualizations of the constructs which are surveyed. Several statistical techniques have recently become widely available to examine this important issue.

Second, the current studies were cross-sectional and observational. One would expect that a patient-centered intervention would reduce the gap between nurses and patients. Berg et al. (2012) already called for interventions that could close the gap for example by introducing the patient perspective in nursing care.

To overcome these two gaps, the aim of this interventional study is twofold. Our first objective is to evaluate measurement invariance of the Individualized Care Scale across patients and nurses. Second, if measurement invariance can be established, we evaluate the degree of congruence in nurses’ and patients’ perceptions on patient-centredness and assess the impact of an intervention on this congruence.

8.4 Methods

8.4.1 Study design

A pre-test post-test study design was used to evaluate the effect of the piloted intervention in two hospital departments.

8.4.2 Intervention

This study is part of a broader research program that is guided by the framework of complex interventions (Craig, Dieppe, Macintyre & Michie, 2008). The framework consists of four key elements: development; feasibility and piloting; evaluation; and implementation of the intervention. To develop the intervention, a co-design trajectory in each hospital service separately was conducted. Experts by experience, patients and health care staff were involved through interviews, group meetings and co-design sessions (Castro et al., 2017). In an attempt to enhance patient-centredness in hospital services, an intervention which involved experts by experience in the delivery and evaluation of hospital services, was piloted. During nine months, these trained patients were part of the professionals’ team. They had two main tasks: supporting their peers mentally, socially and practically and evaluating the care delivered by the health care professionals. As such, they complemented the professionals’ care and insights. In this pilot/feasibility study, we conducted a qualitative (interviews and focus groups) and quantitative evaluation. The results of the qualitative study were positive. Patients, nurses and other health care staff reported an enhancement of patient-centred aspects.

8.4.3 Instrument

The ICS is based on a conceptual framework developed by Suhonen et al. (Suhonen et al., 2005). They conceptualized individualized care into two dimensions: perceptions about how nursing activities support patients’ individuality, and perceptions of the realization of that individuality in care provision. Both dimensions include the recognition of the patients’ individual clinical situation, personal life situation and the decisional control over their own care. Based on this conceptual model, the ICS-Patient and ICS-Nurse are bipartite questionnaires, each consisting of 34 items, grouped in two subscales which each consists of 17 items. Subscale A (ICS-A) aims to explore views on how individuality is supported and

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subscale B (ICS-B) aims to explore views on how individuality in care is provided. Both subscales each cover clinical situation (7 items), personal life situation (4 items), decisional control over care (6 items). The items are scored on a 5-point Likert-type scale, ranging from 1 = strongly disagree to 5 = strongly agree. The ICS is characterized by factorial, criterion, construct and content validity. The internal consistency of the ICS-Nurse is proven to be acceptable and that of the ICS-Patient is high (Suhonen et al., 2013, 2010, 2005). Overall, the ICS is the most often reported and extensively tested instrument which is used in several countries and thus translated in several languages (Acaroglu, Suhonen, Sendir, & Kaya, 2011; Köberich, Suhonen, Feuchtinger, & Farin, 2015; Suhonen et al., 2012).

The ICS was translated from English to Dutch by a senior researcher in nursing sciences and ranslated back into English by a professional translator. Both versions were compared and discrepancies were discussed. Then, the Dutch version was validated by two students in nursing sciences using a Delphi procedure. As such, the content validity index was calculated.

8.4.4 Data collection

Data collection took place in two hospital services at a large university hospital in Belgium: a dialysis unit and a hospital service for patients with an amputation, polytrauma or spinal cord injury. The intervention was piloted in these hospital services. Surveys were collected eight months before (January 2016) and immediately after (June 2017) the intervention was tested. With respect to patients, inclusion criteria were: admitted or present in the aforementioned hospital services during the period of data collection, of adult age (≥ 18 years), able to read and understand Dutch. Patients with limited cognitive skills or with a disorder in the production and comprehension of language were excluded. With respects to nurses, inclusion criteria were: able to read and understand Dutch, and closely involved in direct patient care in the targeted hospital services.

8.4.5 Data analysis

8.4.5.1 Statistical analysis

First, we described the sample of nurses and patients before and after the introduction of the intervention. Chi squared tests are used to compare sample characteristics.

Second, for our first research objective to evaluate measurement invariance of the Individualized Care Scale across patients and nurses, multiple factor analytic models were established. We started by conducting single group confirmatory factor analysis (CFA) to investigate whether the established dimensionality of the ICS (Suhonen et al., 2010, 2005) fit our sample of nurses and patients separately. That is, we assess whether the hypothesized subscales of the ICS-Nurse and ICS-Patient are indeed conceptualized as such by nurses on the one hand and patients on the other hand. We then assessed measurement invariance of the ICS dimensionality across nurses and patients by conducting multiple group confirmatory factor analysis (MGCFA). This technique allows an assessment of various types of invariance. Configural invariance pertains to showing the same pattern of association between items and factors, and the same number of factors. In this model, factor loadings and thresholds are free across groups. Metric invariance on the other hand includes equality of factor loadings. And scalar invariance also includes equality of factor thresholds. Evidence of scalar invariance is a requirement for drawing meaningful comparisons across groups (Steenkamp & Baumgartner, 1998). For multiple‐group confirmatory factor analysis, we used weighted least squares estimation using delta parameterization. Model fit evaluation was based on Hu and Bentler’s (1999) cut-off criteria and Chen’s (2007) allowed changes in these fit indices when studying invariance. The Comparative Fit Index (CFI) (Bentler, 1990) and Tucker-Lewis Index (Tucker & Lewis, 1973) range between 0 and 1, are reasonable if >0.90 and very good if >0.95. A change of ≥−0.01 indicates non-invariance. The Root Mean Square Error of Approximation (RMSEA) (Steiger, 1990) also ranges between 0 and 1, is reasonable if <0.08 and very good if <0.05. A change of ≥0.015 indicates non-invariance.

Third, since our findings for multiple group confirmatory factor analyses were supportive of making comparisons across nurses and patients, we tackled our second research objective, which was to evaluate the degree of congruence in nurses’ and patients’ perceptions on patient-centredness and assess the impact of an intervention on this congruence. We calculated ICS subscale scores by averaging item scores for their respective dimensions. Using unpaired t-tests, we evaluated whether differences across nurses and patients before and after the intervention were statistically significant. Also, the consistency of effects were evaluated across participating wards. We used an unpaired t-test since neither nurses nor patients could be identified over time. Using difference in difference analysis with patient and nurse age, gender and education as fixed effects, we evaluated whether any pre-post changes in nurses’ and patients’ ICS scores were statistically significantly different. Last we also used paired t-tests to evaluate the difference in ICS-A and ICS-B within each time point and within each

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group. Statistical significance of differences across nurses and patients was assessed through chi-squared tests.

Mplus version 7.1 was used to estimate factor analytic models (Muthén & Muthén, 2012). The descriptive analysis and chi-squared tests for this paper were generated using SAS software, Version 9.4 of the SAS System for Windows. Copyright ©2016 SAS Institute Inc. SAS and all other SAS Institute Inc. product or service names are registered trademarks or trademarks of SAS Institute Inc., Cary, NC, USA.

8.5 Ethical considerations

The study protocol (B322201627024) was approved by The Ethical Committee of the University Hospitals Leuven (Belgium). All respondents provided informed consent.

8.6 Results

8.6.1 Sample characteristics

The total sample (pre-test and post-test together) consisted of 337 respondents of which 138 nurses and 199 patients. In the rehabilitation centre the sample consisted of 38 (response rate = 65.5%) nurses and 28 patients (response rate = 96.5%), in the renal centre 100 nurses (response rate = 70%) and 171 patients (response rate = 78.4%) were involved. Table 15 displays the sample characteristics for nurses and patients. Most of the nurses were female and held a bachelor degree. There was no significant difference between the nurses in the pre-test compared to the post-test. Most of the patients were male, aged above 70 years and held a diploma from high school. With respect to gender and age there was a significant difference in the patient group before and after the implementation of the intervention.

Tabel 15: Sample characteristics

8.6.2 Evaluating measurement variance

Using single group confirmatory factor analysis, the hypothesized dimensionality of the ICS-Nurse and ICS-Patients were evaluated separately (Table 16). Both models showed a very good fit (CFINurse=0.972, TLINurse =0.969; CFIPatient=0.972, TLIPatient=0.969,) and RMSEA was good (RMSEANurse= 0.068; RMSEAPatient=0.062). Thus, the hypothesized subscales of the ICS-Nurse and ICS-Patient are conceptualized as such by nurses on the one hand and patients on the other hand. Configural invariance and scaler invariance as well showed very good fit indices with minor changes between the configural and the scalar invariance models (CFIConfigural=0.972, TLI=0.969Configural; CFIScaler=0.969, TLIScaler=0.969) and RMSEA was reasonable (RMSEAConfigural=0.064; RMSEAScaler = 0.065). Thus, the ICS allows cross-group comparison between patients and nurses.

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Tabel 16: Single-group and multiple group confirmatory factor analysis evaluating ICS dimensionality across nurses and patients

8.6.3 Evaluating support and provision of individuality

Following Berg et al. a mean score >4.5 indicates a high level of individualized care. At the subscale level, no mean scores exceeded the 4.5 threshold (Table 17).

Before the intervention, nurses perceived the support and provision of individual care more positively than patients. This significant gap remained after the implementation of the intervention, except ICS-B personal life situation. This is despite an increase in all mean scores over time, which was not once statistically significant when it came to nurses, but was statistically significant for the overall ICS-B score and in three out of six subscale scores (ICS-A clinical situation, ICS-B personal life situation, and ICS-B decisional control) when it came to patients. The evaluation of the consistency of effects across participating wards did not alter any conclusions. Findings from the difference in difference analysis showed that pre-post changes in nurses’ and patients’ ICS scores were not statistically significantly different. Last, both before (t-value=-5.08, P-value<0.001) and after (t-value=-2.84, P-value=0.006) the intervention nurses’ scores on the ICS-A were significantly higher than their scores on the ICS-B. Patients’ scores on ICS-A and ICS-B did not differ significantly, neither before (t-value=1.55, P-value=0.12) nor after (t-value=1.97, P-value=0.05) the intervention.

Tabel 17: Nurses’ and patients assessments’ on individualised care at scale and subscale levels before and after the intervention

8.7 Discussion

8.7.1 Relevanceofthefindings

The data of this interventional study could add to three insights regarding the measurement of individuality in care.

First, measurement invariance between the ICS-Nurse and ICS-Patient had never been evaluated before. To overcome this gap, this study conducted a number of appropriate factor analytic models. Our findings showed that nurses and patients, using the ICS-Nurse and ICS-Patient, conceptualized the construct of individualized care similarly. Therefore, the ICS-Nurse and ICS-Patient allow comparison of scores across nurses and patients.

Second, similar to the findings of Berg et al. (2012) and Suhonen et al. (2012), the results of this study show incongruence between the perceptions of patients and nurses regarding individuality of the delivered care. More specifically, nurses scored the degree of individuality significantly higher than patients. This might indicate that nurses overestimate their patient-centred attitude. Furthermore, patients’ scores on ICS-A and ICS-B did not differ significantly. This is in contrast to the scores of nurses which are statistically significantly higher on ICS-A than on ICS-B. The latter might indicate that nurses felt that there is organizational and managerial support but that they fail to effectively bring their patient-centred attitude into action. In literature, nurses and patients score the ICS-B higher than ICS-A, except in Finland where the results are similar to our results (Berg

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et al., 2012; Suhonen et al., 2012).

Third, after the involvement of experts by experience the mean scores of nurses and patients were higher than before the intervention was implemented. However, while the nurses’ scores were not statistically significantly higher after the intervention was implemented, the ICS-B and three of its subscales showed a significantly improvement (i.e. ICS-A clinical situation, ICS-B personal life situation, and ICS-B decisional control) when it came to patients. The significant effect on the ICS-B scale is not surprising because it measures the individuality in care actually provided which is intuitively easier to understand than ICS-A, which measures how individuality is supported. In addition, the nature of the experts by experience intervention is likely to enhance aspects of personal life situation and decisional control as the predetermined aim was to support patients regarding psychosocial aspects (such as ‘personal life situation’) and to enhance patient empowerment (such as ‘decisional control’).

Unfortunately, taken together, contrary to what we had hoped for, our findings suggested a limited impact of our intervention in patients only. Because the magnitude of this effect in patients was small, our difference in difference analysis showed that the intervention did not reduce the gap in nurses’ and patients’ opinions of patient-centredness. Either the moderate effect was due to the relatively short intervention period (i.e. nine months) or the intervention was not powerful enough to attain the desired effect

However, the lack of strong statistical relevance does not mean that the intervention also lacks clinical relevance. Next to an improvement in patients’ scores, the analysis shows an increase in the mean scores of nurses. This improvement was also reflected in the qualitative data analysis. Patients, and nurses as well, indicated positive effects of the intervention on the patient-centredness of care. The work of the experts by experience gave them insights into the psychosocial aspects of patients’ disease and enabled them to deliver more care that takes into account several issues that come along with a long-term disease or disability. Nurses also reported higher job satisfaction because they became aware that, with minimal efforts, they could do more for their patients than they currently did.

8.7.2 Limitations

First, the sample of patients in the pre- and post-test are not fully comparable as there is a significant difference in gender and age. These

differences might affect the comparability of the patient group before and after the implementation of the intervention. Second, a convenience sample was used and the sample size was relatively small, both reducing the external validity. However, the present preliminary study was intended to be hypothesis generating rather than confirmatory. Third, because our collected data did not allow us to match nurses, we were not able to use a paired t-test. Using a paired t-test could have yielded more specific results. Fourth, we did not conduct a process evaluation to assess the intervention dose, which was different in the two hospital departments (e.g. at the rehabilitation centre, six experts by experience were employed in duo, three times a week while at the renal centre four experts by experience were employed, each one time a week). In this study, we merged the data of two hospital departments of which the intervention dose was different. By doing this, the overall effect is likely to be reduced.

8.7.3 Recommendation for research

The ICS is able to compare the perceptions of patient-centredness between nurses and patients. As such, researchers and hospitals managers may use the ICS to evaluate interventions that aim to close the gap in nurses’ and patients’ perceptions. The results of our study indicate that there is a need for multicomponent interventions that convey to both nurses and patients. The preferable design of these interventions is al long-term multicentre pre-test and post-test intervention study with a control group.

8.8 References

Acaroglu, R., Suhonen, R., Sendir, M., & Kaya, H. (2011). Reliability and validity of Turkish version of the Individualised Care Scale. Journal of Clinical Nursing, 20(1–2), 136–145.

Balik, B., Conway, J., Zipperer, L., & Watson, J. (2011). Achieving an Exceptional Patient and Family Experience of Inpatient Hospital Care. IHI. Innovation Series white paper. Cambridge, Massachusetts.

Balint, M. (1955). The doctor, his patient, and the illness. The Lancet, 265 (6866), 683-688.

Bentler, P. M. (1990). Fit indexes, Lagrange multipliers, constraint changes and incomplete data in structural models. Multivariate Behavioral Research, 25(2), 163–172.

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Berg, A., Idvall, E., Katajisto, J., & Suhonen, R. (2012). A comparison between orthopaedic nurses’ and patients’ perception of individualised care. International Journal of Orthopaedic and Trauma Nursing, 16(3), 136–146.

Bruyneel, L., Li, B., Squires, A., Spotbeen, S., Meuleman, B., Lesaffre, E., & Sermeus, W. (2017). Bayesian multilevel mimic modeling for studying measurement invariance in cross-group comparisons. Medical Care, 55(4), e25–e35.

Castro, E. M., Malfait, S., Van Regenmortel, S., Van Hecke, A., Sermeus, W., & Vanhaecht, K. (2018). Co-design for implementing patient participation in hospital services: a discussion paper. Patient Education and Counseling, 101(7), 1302-1305.

Craig, P., Dieppe, P., Macintyre, S., & Michie, S. (2008). Developing and evaluating complex interventions : the new Medical Research Council guidance. British Medical Journal, 1655(September), 1–6.

Dale Shaller. (2007). Patient-Centered care: What does it take? The Commonwealth Fund.

Groene, O. (2011). Patient centredness and quality improvement efforts in hospitals: Rationale, measurement, implementation. International Journal for Quality in Health Care, 23(5), 531–537.

Horn, J. L., & McArdl, J. J. (1992). A practical and theoretical guide to measurement invariance in aging research. Experimental Aging Research, 18(3–4), 117–144.

Institute of Medicine. (2001). Crossing the quality chasm: A new health care system for the 21st century. Washington, DC: National Academy Press.

Köberich, S., & Farin, E. (2015). A systematic review of instruments measuring patients perceptions of patient-centred nursing care. Nursing Inquiry, 22(2), 106–120.

Köberich, S., Suhonen, R., Feuchtinger, J., & Farin, E. (2015). The German version of the individualized care scale - Assessing validity and reliability. Patient Preference and Adherence, 9, 483–494.

Luxford, K., Safran, D. G., & Delbanco, T. (2011). Promoting patient- centered care: a qualitative study of facilitators and barriers

in healthcare organizations with a reputation for improving the patient experience. International Journal for Quality in Health Care, 23(5), 510–515.

McCance, T., Slater, P., & McCormack, B. (2009). Using the caring dimensions inventory as an indicator of person-centred nursing. Journal of Clinical Nursing, 18(3), 409–417.

Muthén, L. K., & Muthén, B. O. (2012). Mplus User’s Guide. Seventh Edition. Losa Angeles, CA: Muthén & Muthén.

Steenkamp, J. E. M., & Baumgartner, H. (1998). Assessing measurement invariance in cross-national consumer research. Journal of Consumer Research, 25(1), 78–107.

Steiger, J. H. (1990). Structural model evaluation and modification: an interval estimation approach. Multivariate Behavioral Research, 25(2), 173–180.

Suhonen, R., Efstathiou, G., Tsangari, H., Jarosova, D., Leino-Kilpi, H., Patiraki, E., … Papastavrou, E. (2012). Patients’ and nurses’ perceptions of individualised care: An international comparative study. Journal of Clinical Nursing, 21(7–8), 1155–1167.

Suhonen, R., Gustafsson, M.-L., Katajisto, J., Välimäki, M., & Leino-Kilpi, H. (2010). Individualized care scale - nurse version: a Finnish validation study. Journal of Evaluation in Clinical Practice, 16(1), 145–154.

Suhonen, R., Leino-Kilpi, H., & Välimäki, M. (2005). Development and psychometric properties of the Individualized Care Scale. Journal of Evaluation in Clinical Practice, 11(1), 7–20.

Suhonen, R., Schmidt, L. A., Katajisto, J., Berg, A., Idvall, E., Kalafati, M., … Leino-Kilpi, H. (2013). Cross-cultural validity of the Individualised Care Scale - A Rasch model analysis. Journal of Clinical Nursing, 22(5–6), 648–660.

Tucker, L. R., & Lewis, C. (1973). A reliability coefficient for maximum likelihood factor analysis. Psychometrika, 38(1), 1–10.

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9General discussion and conclusion

Chapter

As far as we know, this study is the first to explore how experts by experience can be systematically involved in hospitals in order to facilitate the empowerment of patients and the patient-centredness of care. Patient empowerment, patient participation, patient-centredness and experiential expertise are all concepts that have gained increasing importance in international literature and practices. However, in the domain of somatic health care their meaning and interrelatedness remains unclear. Therefore, in the first phase of this research, we started by clarifying the key concepts of our research. This allowed us to frame our research, to identify measurement scales and to facilitate communication. Besides a conceptual clarification, we interviewed key informants of the mental health, social and medical healthcare domain and surveyed patients collaborating, or willing to collaborate, with hospital services. As such, barriers and facilitators related to the involvement of experts by experience in hospital services were inventoried.

In the second phase, we co-designed interventions to involve experts by experience in three hospital services (dialysis unit, rehabilitation centre for amputation and spinal cord injury, ambulatory unit for atopic eczema). During three co-design trajectories, health care professionals, experts by experience and patients, with a recent experience in the aforementioned hospital services, were involved. In the third phase, these interventions were implemented and evaluated by healthcare professionals, experts by experience and patients. As the current literature demonstrates a lack of mixed methods research, we used both qualitative and quantitative research methods. Finally, the data was triangulated and conclusions were drawn. These main findings will be briefly described in this chapter. Next, reflections on the implementation and the methodological considerations are addressed. Then, recommendations regarding the individual, organizational and policy level as well as avenues for further research are described. This chapter ends with recommendations for the dissemination of this research and a general conclusion.

9.1 Mainfindings

9.1.1 Conceptualclarification

In order to answer the first research question (What are the essential dimensions of the concepts patient empowerment, patient participation,

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patient-centredness and expertise by experience, and how do these concepts relate?), concept analyses were conducted. As elaborated in the general introduction in Chapter 1, patient participation, patient-centeredness, patient empowerment and expertise by experience are increasingly prominent concepts in health care. Despite their importance, no widely accepted definition has yet been established, nor has their interrelationship been investigated (Anderson & Funnell, 2010; Chatzimakakis, 2010; Groene, Klazinga, Wagner, Arah, Thompson, Bruneau, Suñol, 2010; McLaughlin, 2009; Scourfield, 2010; Miaskiewicz & Kozar, 2011).

In response to this gap, the concept analyses in Chapter 3 and 4 demonstrated that expertise by experience, patient participation, patient-centredness and patient empowerment are all concepts with specific dimensions. Although they can be used independent of each other, they are closely related (see Figure 14). Participation is considered to be the driver which facilitates patient-centred care. In short, patient-centred care refers to care that includes both the medical and psychosocial needs of patients. Such care has the potential to facilitate patient empowerment. By providing appropriate support to patients and their environment, patients are likely to feel more in control of their disease and their life. This succession of processes ensures a better quality of care that will increase patients’ quality of life (Castro, Van Regenmortel, Vanhaecht, Sermeus, & Van Hecke, 2016). At the level of hospital services, experts by experience are able to drive the participation engine. By bringing their experiences, knowledge and other competencies into action, they are able to support patients with similar conditions in order to increase patient empowerment and help healthcare professionals to improve healthcare quality.

Figure 14: Process model for concepts of experiential expertise, patient empowerment, patient participation and patient-centeredness in health care:

These concept analyses allowed us to identify the different dimensions of which the concept consists, and revealed outcome variables and measurement scales to evaluate the involvement of experts by experience. Based on the findings from the concept analyses, we chose to measure patient participation culture, patient-centredness and patient empowerment. However, only the evaluation of patient-centredness is included in this dissertation.

9.1.2 Preconditions for patient participation in hospital wards

As described in the introduction, the framework of Tambuyzer, Pieters, & Van Audenhove (2011) provided a first insight into the determinants and essential elements of successful patient participation. However, this framework was established mainly based on a literature study and was limited to mental health care. In response to the second research question (What is the state of the art, from the perspective of experts by experience, regarding collaboration between hospitals and themselves?) a survey was conducted (see Chapter 5) to investigate the state of the art and the desired nature of patient participation in hospitals, from the patient’s point

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of view. The findings confirmed those of Tambuyzer et al. (2011), but also provided information specifically relevant to somatic health. The survey demonstrated the following key facilitators: the involvement of influential healthcare providers such as doctors; feasible participation activities adjusted to both the abilities of patients and hospitals; methods preferred by patients, involving direct interaction with healthcare professionals; important efforts to strengthen competencies; and indispensable support for both the hospitals and patients.

Thus, both the literature and our survey indicated that an appropriate and sound framework is essential, albeit with enough room for the authenticity of experts by experience. To establish such a framework, all stakeholders were included in the co-design process, which formed the basis of the development of the intervention (see Chapter 6).

9.1.3 Co-design to foster implementation in hospital services

Using co-design to implement complex patient participation interventions has been proven to be a helpful strategy thanks to its combination of several research methods and the systematic convergence of stakeholder perspectives (Castro, Malfait, Van Regenmortel, Van Hecke, Sermeus, & Vanhaecht, 2017). In response to the third research question (What are the lessons learned from using co-design in implementation studies?) we described nine points of action and recommendations, from a researcher’s perspective: sufficient preparation to ensure patients and staff feel comfortable with the method; purposeful recruitment of patients as well as staff; involvement of an additional person to assist with practical arrangements; facilitation of group cohesion by taking group dynamics into account; use of a combination of methods and tools to provide guidance, interaction, variety, and reliability; establishment of mutual respect so everyone’s point of view is taken seriously; efforts to search for common ground; pro-active avoidance of participant drop-out and convergence of healthcare professionals and their practical knowledge, patients and their experiential knowledge, and researchers and their theoretical knowledge.

However, as indicated in Chapter 6, when implementing and designing complex interventions, it is desirable to make a number of adjustments to the original experience-based co-design approach, based on the principles of responsive evaluation and empowerment research (Abma & Stake, 2001; Fetterman & Wandersman, 2007). The first recommended adjustment is to start the EBCD-trajectory with filmed interviews of both patients and hospital staff. This approach fosters a trajectory based on an equal and

trustful relationship in order to create a safe, open and participatory climate. The second adjustment is to involve a mix of patients (with recent and less recent hospital experiences) so that a mix of perspectives is included. The last adjustment is to converge three types of knowledge: experiential knowledge (knowledge of patients), practical knowledge (knowledge of hospital staff) and scientific-theoretical knowledge (knowledge of researchers). This is more likely to result in feasible and sustainable interventions.

9.1.4 Driversandbenefitsoftheintervention

In response to the fourth research question (What are the facilitators and effects of the involvement of experts by experience, according to experts by experience themselves, healthcare providers and patients?) a qualitative study was undertaken. In Chapter 7, seven key drivers that enhance a successful participation process are demonstrated: (1) a shared vision on care and patient involvement, (2) collaboration as partners, (3) unconstrained commitments from the experts by experience, (4) interaction between an informal atmosphere and a formal framework, (5) continuity and regularity, (6) recruitment, selection, support and training and (7) practical preconditions. The results highlighted multiple effects associated with the involvement of experts by experience, all including an improvement in aspects of quality of care (i.e. patient-centredness), empowerment and quality of life. Consequently, there is strong support that all three parties benefit from the process: patients, experts by experience themselves and professionals. Patients report positive effects such as improved coping, fewer worries, higher levels of satisfaction, identification and recognition, improved adherence to therapy and new insights into their possibilities in daily life. Experts by experience reported a sense of meaning, a sense of connection and a process of personal growth. Professionals reported feelings of happiness and higher job satisfaction, and they obtained new insights into their patients’ care. The effects of engaging experts by experience thus mainly target the level of direct care and the level of hospital service.

The data analyzed in response to the fifth research question (What is the impact of the involvement of experts by experience on the perceptions of patients and nurses regarding patient-centredness in hospital care?) showed that there is a significant gap between the perceptions of nurses and patients regarding the support and provision of individual care. Nurses perceived the individuality of care more positively than patients, which confirms previous research (Berg, Idvall, Katajisto, & Suhonen, 2012; Suhonen, Efstathiou, Tsangari, Jarosova, Leino-Kilpi, Patiraki, …

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Papastavrou, 2012). This gap remained after the implementation of the intervention. In contrast to the qualitative study, the quantitative study in Chapter 8 states that there was only limited influence of the systematic involvement of experts by experience. All mean scores increased over time, but for patients they were only statistically significant regarding three out of six subscales. The results of the difference in difference analysis showed that pre-post changes in nurses’ and patients’ scores were not statistically significant. Thus, the intervention was not able to close the gap in nurses’ and patients’ perceptions of patient-centredness. Overall, the findings suggest that the intervention had an impact on patients but not on nurses.

9.2 Implementation-related considerations

Figure 15 presents an overview of the drivers and outcomes of the systematic involvement of experts by experience in hospital services and its implementation, both at the individual and team level. These drivers and outcomes are discussed below.

Figure 15: Framework for the involvement of experts by experience in hospital services

The overall introduction to this thesis presented four lessons learned from the mental health and social care domain (see Section 1.5.6.). The first lesson was the importance of embedding the involvement of experts by experience in a shared and broad vision on service delivery and

participation, more concretely by using the empowerment framework to guide this process. Furthermore, in the domain of somatic health care it seemed to be important to work towards a shared vision (see Chaper 7). These findings confirm previous research in these domains (Rise, Solbjor, Lara, Westermund, Grimstad & Steinsbekk 2011; Rise, Grimstad, Solbjor, & Steinsbekk, 2011; Repper & Carter, 2011), but also add to them by explicitly suggesting that the empowerment framework can be used. When applying this vision to health care, it supposes that the experiential knowledge and expertise of experts by experience is considered complementary and equal to professionals’ theoretical and technical knowledge and expertise (see Figure 15). This leads to a partnership or a collaboration as partners, whereby each partner has its own specific tasks and roles, based on different sources of knowledge. As a previous literature review on mental health care (Repper & Carter, 2011) pointed out, a shared vision whereby professionals valorize the role of expertise by experience and a clear distinction in tasks and roles avoids the risks that experts by experience follow professional role models in a bid for respect and recognition. In this way, the true potential of experts by experience could be undermined and the effects of their involvement would be mitigated. In Chapter 1, different types of organizations are described: auxiliary groups, oppositional groups and partner associations (Rabeharisoa & Callon, 2002). As the latter type of groups their members are characterized by having a specific type of knowledge that they combine with biomedical expertise, the experts by experience of the described project can be associated with this type of group. Furthermore, similar to many other implementation projects, here too it was clear that the full support of the hospital’s management is a facilitator when developing, implementing and continuing an intervention (Kaplan, Froehle, Cassedy, Provost, Margolis, 2012; Greenhalgh, Robert, Macfarlane, Bate, Kyriakidou, 2004; Grol & Wensing, 2011).

Similar to the findings of Nickel, Trojan and Kofahl (2016), our research showed that formal agreements, guidelines and procedures were necessary to guarantee structural patient involvement. It might be contradictory, but within this formal structure there was room for an informal atmosphere where more natural conversations between experts by experience and patients took place. These conversations often led to more in-depth dialogue (see Chapter 7). Other authors have called these first interactions ‘a pro-active approach’ and considered these essential to increase responsiveness when implementing peer support in real-world settings (Fisher et al., 2015).

The careful selection of experts by experience, training and ongoing support facilitated a successful implementation. The importance of these steps was already established by several researchers (Groene et al.,

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2011; Repper & Carter, 2011; Fisher et al., 2015; Tambuyzer et al., 2011). However, in contrast to our research (see Appendix D), they were not reported in detail (Lloyd-Evans et al., 2014). Our selection process was guided by the following criteria: having a positive and open attitude, being motivated, being able to put things in perspective, being able to transcend individual experiences and adopt a broad perspective, having experiential knowledge and being able to bring this knowledge into action. Although some authors are skeptical regarding the training of experts by experience (van de Bovenkamp, & Zuiderent-Jerak, 2013; Embuldenya,Veinot, Bell, Nyhof-Young, Sale, & Britten, 2013), all participants involved were strong proponents of such a training course. There is, however, a difference between the training to which most literature refers (Crisanti, Murray-Krezin, Karlin, Sutherland-Bruaw, & Najavits, 2016) and the training in this research project. The former is often extensive (Simpson, Quigley, Henry, & Hall, 2014; Pitt, Lowe, Hill, Prictor, Hetrick, Ryan, & Berends, 2013) and is considered to ‘overprofessionalize’ experts by experience by, for example, teaching them medical jargon in order to involve them as auxiliaries of healthcare professionals, mainly to extend the medical frames. This is in contrast to our training, which aimed to increase self-confidence and credibility. The continued support of the experts by experience included individual coaching, inter- and supervision, and was organized by Trefpunt Zelfhulp vzw, the Self Help Support Centre in Flanders. This support aimed to facilitate reflection by the experts by experience and to further develop their experiential knowledge and expertise. The fact that the training and support was offered by an independent institution was perceived as an added value, as it helped the experts by experience to maintain their authenticity. This confirms recent research from the Netherlands (de Graaf, 2018).

Our literature research did not reveal anything concerning the frequency of involving experts by experience, nor the required practical conditions. However, our findings do suggest that continuity and regularity as well as the availability of necessary resources are essential prerequisites for long-term patient involvement. This long-term approach may also facilitate the embedding of the intervention, because experts by experience will become more easily acquainted with the healthcare professionals and vice versa. A precondition to guarantee continuity and regularity is the involvement of a team of experts by experience, so that there is back-up when someone drops out. For example, during the pilot study, two (adolescent) experts by experience in the ambulatory centre for dermatology dropped out after one month. The combination of volunteering with their full-time studies turned out to be quite difficult. Fortunately, there were still two other experts by experience in the team to guarantee support for patients.

Overall, when taking into account the drivers for the involvement of experts by experience, our findings point out that their involvement is feasible (i.e. the extent to which an activity is practical and practicable) (Carroll, Patterson, Wood, Booth, Rick, & Balain, 2007). This is in contrast to some other participation methods described in literature, where several obstacles were reported, impeding a successful implementation. These include, amongst others, resistance of health care professionals and difficulties with implementations because patients do not easily fit into a hospital’s (decision-making) structure (Adams, van de Bovenkamp, & Robben, 2015; van de Bovenkamp & Zuiderent-Jerak, 2013). In order to avoid such barriers for implementation, we conducted an extensive co-design trajectory in which all aspects of the intervention and its implementation were discussed (e.g. goals of the intervention, tasks and roles, practical organization, dissemination of the project). These open discussions led to well-considered actions, which increased the quality of the service delivered (Carroll et al., 2007). This can be illustrated with the following example. During the co-design trajectory an important point of discussion was whether we should match patients to more experienced peers with a similar profile (Dennis, 2003). This would be done at the request of a particular patient. Alternatively, experts by experience, with their collective knowledge, would be involved on a systematic and regular basis. After various meetings and discussions, the participants opted for the latter option. While evaluating the feasibility of the intervention, participants reported that the collective experiential knowledge of experts by experience allowed an extensive search for a match between a patient and a peer supporter to be avoided. In the literature it is described that nurses perceive this as very time-consuming (Dale, Williams, & Bowyer , 2012). Although the co-design process was a costly and time-consuming activity, participants considered it a prerequisite for the implementation of the experts by experience intervention. In particular, the use of video clips and the direct confrontation between healthcare providers, patients and experts by experience were perceived as success factors (Reynkens, 2018).

9.3 Outcome-related considerations

The effects on healthcare professionals and hospital unit management were examined in a qualitative way. Nurses’ perceptions regarding patient-centredness were also surveyed as part of this qualitative approach. Our qualitative analysis showed increased insights into psychosocial health factors, more competencies acquired from experts by experience and higher levels of job satisfaction (see Chapter 7). These findings add to previous research which reports that working together with experts by experience stimulates growth and self-reflection among professionals

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(Van Regenmortel, 2002). Increased job satisfaction has also been reported through qualitative research (Luxford, Gelb Safran, Delbanco, 2011), which also indicated that there was a link between patient satisfaction and employee satisfaction.

The results of the Individualized Care Scale (Suhonen, Gustafsson, Katajisto, Välimäki, & Leino-Kilpi, 2010; Suhonen, Leino-Kilpi, & Välimäki, 2005) in Chapter 8 revealed that all mean scores of patients’ and nurses’ perception regarding patient-centredness increased over time, but for nurses this was not statistically significant. Although the qualitative analysis showed that health care professionals’ insights into the psychosocial factors of health increased, the intervention was not able to reduce the gap between the perceptions of patients and nurses regarding patient-centredness. We assume that the intervention dose, or the number of interventions experienced (Carroll et al., 2007), was not high enough for nurses. In one department, for example, it was reported that more interaction and feedback from the experts by experience had been expected, which would have enabled these nurses to deliver therapies more aligned with their patients’ needs. Although experts by experience were expected to close the gap between patients and nurses as part of their intermediary function, they focused more on their supporting than on their advisory role. This might be explained by the fact that patients, who are still being treated by a doctor from the relevant hospital service, are in a dependent position (Tobiano, Bucknall, Marshall, Guinane, & Chaboyer, 2016). As such, participation can be restricted. After all, patients do not want to be seen as ‘difficult patients’ (Solbjør et al., 2011). A second possible reason is that there was no appropriate approach to integrate patients’ knowledge with the knowledge of the healthcare workers, who were aiming to improve care organization (Caron-Flinterman, Broerse, & Bunders, 2005). Research and practical experiences from mental health care and social care also show that this advisory role is often difficult (van Vugt, Kroon, Delespaul, & Mulder, 2012, which is why, in mental health care as well, experts by experience tend to spend most of their time supporting peers (Jacobson, Trojanowski, & Dewa, 2012).

The effect of the intervention on experts by experience was only evaluated in a qualitative way. Similar to research findings in mental health care (Solomon, 2004; Repper & Carter, 2011) and social care (Van Regenmortel, 2002), experts by experience reported a sense of significance, a sense of fulfilment and a process of growth. This is explained by Riessman’s (1965) well-known Helper Therapy Principle, which refers to the phenomenon that the experts by experience (the helper) themselves may benefit from giving support to another person. The review article of Repper & Carter (2011), in the mental health domain, even claimed that better results regarding

empowerment are achieved by giving rather than receiving support.

The qualitative evaluation of the effects on patients revealed an increase in several aspects of patient empowerment, such as a sense of ‘humanized care’, a stimulating care environment, identification and recognition, awareness of preventive actions, easy access to mental, social and practical support, thereby confirming previous research (Lloyd-Evans et al., 2014; Repper & Carter, 2011; Casman et al. 2010; Korevaar and Droës 2011). However, other authors also suggest positive effects on social integration and participation, lower levels of care needs, reduced risk of institutional residence (Boevink, 2016; Burda et al. 2012,2016) and increased health (Fisher et al; 2017). Unfortunately, the measurement of these effects fell outside the scope of our research. Our contribution to the literature is the observation that experts by experience also lead to increased patient-centredness in health care. The quantitative findings revealed that patients scored patient-centredness higher after the intervention than before, although this was only statistically significant regarding the following subscales: support of individuality regarding the clinical situation, provision of overall individuality, provision of individuality regarding one’s personal life situation and provision of individuality regarding decisional control.

9.4 Methodological considerations

First, to guarantee the reliability of the research project, the criteria for qualitative research were strictly adhered to (Lincoln & Guba, 1985). These apply to the qualitative methods used during the co-design trajectory as well as the group interviews and semi-structured interviews to identify facilitators and effects of the intervention.

To ensure the credibility of our collaborative research project, several techniques were applied: prolonged engagement, persistent observations, triangulation and member checking. Prolonged engagement refers to the choice for a long-term research project, which allowed the researcher to build trust with different stakeholders (e.g. through formal and informal interactions). Persistent observation refers to long-term and frequent observations to build trust among the stakeholders involved and to enhance the credibility of the research findings. Triangulation refers to the use of multiple data sources, such as individual interviews, group meetings and observations. This combination of methods provided a rich data set and a breath of different perspectives. Finally, member checking was also applied in this research, for example by sending transcribed interviews back to respondents or by discussing preliminary analyses

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from homogeneous group meetings in heterogeneous meetings. As these interpretations were discussed, fleshed out and corrected, the reliability of the research findings was enhanced.

To ensure dependability, meaning that the findings would not be dominated by the researcher’s views and prejudices, a logbook was kept in which the main steps and decisions were note. After a while, however, the logbook was no longer updated because it was replaced by research meetings with supervisors and co-researchers in which interviews were discussed. Furthermore, the interpretations of the researcher were challenged through discussion of the preliminary analysis in group meetings with patients, experts by experience and healthcare workers involved in the co-design trajectory. Next, confirmability was ensured by following the QUAGOL guide to analyze our data (Dierckx De Casterle, Gastmans, Bryon, & Denier, 2012). QAUGOL is a theoretical and practice-based guide that supports and facilitates the analysis of qualitative interview data. By using Nvivo, a data analysis software program, our analysis was well-documented and transparent. To enhance transferability of our findings, we invested in a detailed reporting of these findings, for example by using a framework template for intervention description and replication (TIDieR) and by reporting quotes (Hoffmann, Glasziou, Perera, Moher, Altman, Barbour, … Michie, 2014).

Furthermore, to safeguard the rigor of the quantitative part of the study, we carefully selected the questionnaires, evaluated the measurement invariance of the Individualized Care Scale (see Chapter 8) and excluded the control group. The results showed that the Individualized Care Scale allows cross-group comparisons between patients and nurses. Thus, the ICS allowed us to evaluate the intervention and its ability to close the gap between nurses’ and patients’ perceptions of patient-centredness. The control groups were excluded because two hospital services underwent a reorganization and shift in staff, which would have threatened methodological rigor. Furthermore, it was difficult to find measurement instruments which were generic and applicable to all three hospital services as we strived for maximal variation.

Second, we suggest being careful when generalizing the findings of this study. The reasons for this are threefold. A first reason is that the intervention was only tested in three hospital wards, so the sample size is small. A second reason is that the departments were selected purposefully. Through an open call by the quality department, multidisciplinary teams were asked to write a motivational letter if they were willing to be involved in the project. Then, a team of two researchers selected the departments on the basis of their population and location. This means that the selected

department heads and their teams showed a willingness to collaborate with experts by experience. It is known from the literature that such higher organizational readiness may result in more effective implementation (Shea, Jacobs, Esserman, Bruce and Weiner, 2014). Nevertheless, the involvement of experts by experience in departments where there is no participatory culture is not recommended as this would be unethical. A third reason is that the pre-test took place before the co-design process and the post-test after the intervention. Therefore, this study is affected by ‘co-intervention bias’ and the results of the pre-test and post-test cannot be attributed solely to the intervention. However, as this study was designed as a pilot/feasibility study, the goal was to obtain initial data in order to plan and implement a larger scale study. As such, results from this preliminary pilot study were not meant to be generalized.

Third, there is a discrepancy between the qualitative and quantitative findings. This might be due to four reasons. First, the qualitative data overestimates the effects of the involvement of experts by experience. Because of the prolonged engagement, a close relationship was fostered with the experts by experience and healthcare providers. Whilst the literature suggests this has a positive effect on the validity of the research, some respondents might have given socially desirable responses to satisfy the researcher. As such, the prolonged engagement might have biased the qualitative data. Second, the quantitative data underestimates the effects of the intervention. Another possible reason is the lack of validated generic instruments available in Dutch which are specifically developed to measure patient-centeredness or patient empowerment in health care. The ICS, for example, measures individuality of care provided by nurses. This can be seen as an indirect effect, because it would suppose that experts by experience mainly focused on the nurses. Our qualitative data, however, suggests that the intervention dose for nurses was actually less high than the intervention dose for patients. At the start of this research project, however, all validated Dutch measurement scales were inventoried, but we noticed that generic validated Dutch tools to measure patient-centeredness and empowerment were scarce. Based on extensive discussions with supervisors and both national and international experts, we still tried to make the best possible selection, bearing in mind that the contributions of experts by experience are difficult to capture by quantitative measurement instruments. Third, when looking at the qualitative outcomes and comparing them to the measured effects, we might conclude that other outcomes may have been more appropriate to measure. Additionally, we might assume that the duration of the intervention was not sufficiently long and the intervention dose not sufficiently high . This is also confirmed by previous research, which suggests that introducing patient experience in healthcare settings takes more than one project (Luxford et al., 2011). Research by Boevink

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et al. (2016) even states that a two-year period might be too short when measuring the effects of involving experts by experience.

9.5 Recommendations

9.5.1 Further research

This study was a pre-study aimed at proving the intervention would be feasible and sufficiently promising to warrant the costs of performing a large-scale study. The following aspects should be taken into account when conducting such a large-scale study. First, we suggest some adaptations to the study design. The study we conducted was a mono-centric study, although we recommend a multi-centered and longitudinal study design for future research, including a pre-test post-test control design with intermediate measurement opportunities. Variables at the individual level (e.g. gender, age, educational level, socio-economic status, supporting networks, origin), team level (e.g. type of department) and organizational level (e.g. type of hospital) must be included.

Second, when preparing the study, we recommend using a co-design approach. Our research was conducted in three hospital services, and each of them required a slightly different way of involving experts by experience. Therefore, we assume that the intervention is sensitive to context and we suggest that hospital services implement a tailored version of the expert by experience intervention, adapted to their specific context and target group. Bearing in mind that our study was positively evaluated at the individual and team level, but that there was no continuation at the organizational level, we suggest that members of management are included from the beginning to enhance the sustainability of the project (Ovreit, 2017). Next, we suggest that an intervention is developed which gives experts by experience a role towards patients as well as healthcare professionals.

Third, we suggest evaluating patient centredness with the Individualized Care Scale (ICS) and measuring additional outcomes as done in this study. Our qualitative study revealed a number of specific outcomes, which further research must evaluate using appropriate questionnaires. Some suggested patient outcomes to be measured are hope, social participation and quality of life, while a suggested outcome for healthcare professionals is job satisfaction. Furthermore, a generic measurement scale to measure patient empowerment is still lacking and must be developed. We propose the development of a scale with a generic as well as a context-specific component. In addition, matching professionals in pre- and post-

measurement is also recommended, as this allows for a paired t-test to be used, resulting in a more detailed comparison between pre-test and post-test. The sample size of the follow-up study can be based on Burns and Grove’s (2005) sampling estimate. They propose a sample size of 10 respondents per item of the measurement scale (e.g. the ICS). The ICS, for example, which has a conceptual basis of 17 items, therefore requires at least 170 completed questionnaires. Based on a typical response rate of 70% in a hospital setting (e.g. Badger & Werrett, 2005; Suhonen et al., 2010b), 240 respondents should be recruited at each time of measurement, per target group. Drawing on the data of our study, a more specific sample size calculation may also be considered.

Fourth, the intervention could be expanded to other target groups and sectors. Drawing on the findings of this research project, we assume that the involvement of experts by experience is most effective in hospital services where management and hospital services demonstrate an openness towards the involvement of experts by experience; a willingness to engage in an ongoing and open dialogue; a structure which facilitates informal, spontaneous ways of interacting; a structure that offers facilities for the experts by experience (e.g. a room, public space); a structure which facilitates visibility of the experts by experience; and a setting which lends itself to frequent interactions between experts by experience and patients (e.g. to build trust). Furthermore, the nature of their condition influences the extent and ways in which patients are involved (Mazanderani, Locock, & Powell, 2012). We carefully suggest that the patient groups that will benefit most from contact with experts by experience might be those that have several affected dimensions of health (Huber, Knottnerus, Green, van der Horst, Jadad, Kromhout…Smid, 2011). We can assume that the more dimensions of health are affected, the more patients will benefit from the contact with experts by experience. Another recommendation is not to forget vulnerable groups in society. Patients with cognitive impairments (e.g. patients with non-congenital brain injuries and patients with dementia) were excluded from this study, but we suggest that further research also takes into account their knowledge and experiences, as well as that of their family members or other caretakers. Migrants form another vulnerable group, whose needs might differ from those of non-migrants, as their perception of health care might also be different. To take potential cross-cultural differences into account, we suggest that their knowledge and experiences be considered too.

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9.5.2 Microlevel

Our research leads to two recommendations at the microlevel (i.e. the individual level and its preconditions). The first regards professionalization procedures, while the second relates to the selection process.

The ‘professionalization’ of the experts by experience was supported by three staff members of the Flemish Self-Help Support Centre. In this context, professionalization refers to a process whereby competencies are improved and expertise is developed. In this research project, experts by experience were recruited, selected, trained and coached. During bimonthly intervision meetings bottlenecks and solutions were discussed. According to Boevink (2017) and Weerman (2017), such extensive preparation and professionalization is a precondition for the successful involvement of experts by experience. Furthermore, professionalization of experts by experience may facilitate the inclusion of more vulnerable people. Employing people because they have a specific experience with a particular problem is conducive to an inclusive society. On the other hand, professionalization procedures are also seen as a threat to the authenticity of the experts by experience. A potential risk is that the experts by experience become part of the systemic world of professionals and that they are put in a difficult position to make critical reflections regarding care (organization). We therefore suggest that balanced professionalization procedures are adopted, which aim to strengthen the experiential expertise of patients and maintain their authenticity.

When focusing on the selection process, our recommendation is to select a mix of patients so that a variety of perspectives are included: e.g. patients being treated in the hospital and patients being treated elsewhere, organized patients (in patient associations) and non-organized patients. By including members of an association , the risk that patients lose their authenticity is partly addressed. Furthermore, the attitudes, beliefs and motivation of the persons involved are very important, which has also been pointed out by similar research projects (Kofahl, Trojan, von dem Knesebeck, & Nickel, 2014). We also believe that it is crucial to include an expert by experience in the jury when selecting other experts by experience. However, interviewing potential experts by experience should be just one step in this selection process. Our research experience indicates that a selection procedure in different stages (writing a motivational letter, completing an interview with a jury, participating in a co-design trajectory and following a training course) might facilitate self-selection among experts by experience, as these different steps are all thresholds that might challenge their engagement. Overall, the selection process prior to a patient participation initiative must be well-conceived and adapted to the aim of the project.

9.5.3 Meso level

At the meso level (i.e. organizational level and its preconditions), our recommendations involve the role of educational institutions, volunteering policies in hospitals, hospital management’s belief in participation and hospital accreditation.

A true partnership will only be achieved through a change in the role of healthcare professionals (Luxford et al., 2011; Debyser et al., 2018). For example, healthcare professionals have to consider the patient’s perspective as complementary to theirs. We believe that educational institutions have an important role to play in supporting healthcare professionals to adopt these new roles. Such new roles go hand in hand with new skills and a collaborative attitude. Recent research demonstrates that collaborative attitudes are not obvious, certainly not among younger generations of nurses (Malfait, Eeckloo, & Hecke, 2017). According to several authors, experts by experience are able to contribute to the education of healthcare professionals in this regard (Frisby, 2001; Muir & Laxton, 2012; Boylan, Loughrey, & Donaghy, 2011). By sharing their personal and professional experiences, healthcare workers are likely to gain more insight into the patient’s perspective (Luxford et al., 2011; Repper & Carter, 2011). Self-reflection and reflective practices are proposed as an effective teaching methodology within traditional nursing education (Frisby, 2001; Mol, 2006). In partnership with experts by experience, students’ awareness of patient-centredness and collaborative healthcare models can be raised. Their discussions should be wide-ranging and this multi-sourced approach should encourage reflective learning and effective professional development (Frisby, 2001; Muir & Laxton, 2012).

Experts by experience differentiate themselves from ‘regular’ volunteers because of the nature of their involvement as well as the selection, training and support to which they are exposed. Therefore, we suggest that their commitment must be rewarded in a respectful and motivational manner. Nevertheless, the views of experts by experience involved in this research project on remuneration differed. Some were in favor of having a paid position, mainly driven by a motivation to liberate themselves from certain restrictive experiences (e.g. job losses due to their condition) and strive for normalization. Others raised the concern that a paid position would restrict the flexible nature of their involvement. These findings are in line with the literature in the mental health domain (Vandewalle et al., 2018) and need to be further explored in the somatic health domain. Overall, however, the voluntary involvement of experts by experience cannot be perceived as self-evident (Van Regenmortel, 2017). Therefore, a fair remuneration for their expenses (e.g. mileage allowance), access to staff accommodations

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(e.g. parking) and catering should be the minimum.

Our research pointed out that the involvement of experts by experience in hospital services has the potential to contribute to healthcare quality improvements. Therefore, we suggest including this type of patient participation and other effective initiatives which entail a partnership between patients and healthcare professionals (e.g. Self-Help Friendly Hospital) in the hospital-wide accreditation (e.g. JCI, NIAZ). Currently, only patient participation at the micro level is considered, but to achieve a real cultural change, all levels should be included. Also, experts by experience could be invited to co-evaluate hospital care.

Although the project described in this thesis was evaluated in a positive way by all parties concerned, it was not continued by the hospital due to a lack of resources. Braes (2018) states that a hospital is characterized by a focus on risks, safety and quality, and is also assessed on the basis of these criteria. Reducing care to indicators, figures and budgets makes it controllable and verifiable. These indicators all contribute to the quality of health care (Institute of Medicine, 2001), but can also hinder innovation as it runs up against the limits of resources and possibilities. Therefore, we underline that this type of thinking, mainly based on professional benchmarks, might leave insufficient room for the expectations of regular citizens or patients. As Mol (2006) rightly questions, who can tell what good care is? She underlines that this is not easy to define in general, but has to be established closer to home for the patient, in their day-to-day healthcare practices and in their day-to-day-life. Experts by experience are able to provide such care that is very close to patients’ day-to-day-life.

9.5.4 Macro level

At the macro level (i.e. policy level and its preconditions), this research offers recommendations concerning ideas for policymakers to implement patient participation, as well as the role to be played by organizations promoting patient participation (in Belgium: Flemish Patient Platform and the Expertise Center for Self-Help).

When patient participation is not carefully established, it involves a number of risks (e.g. tokenism, disempowerment) (van de Bovenkamp et al., 2013; Ocloo & Matthews, 2016). In the Netherlands, for example, patients are involved in advisory councils or guideline developments, while the professionals involved, nor the patients themselves consider their input highly valuable, mainly because the themes discussed have too little bearing on the experiences patients have lived through (van de

Bovenkamp et al., 2013). We firmly believe that the involvement of experts by experience avoids certain risks of patient participation, mainly because we were able to demonstrate a common blind spot in health care (i.e. the ‘insider’s perspective’) and co-design solutions in order to meet the needs of patients as well as healthcare professionals. As van de Bovenkamp et al. (2013) suggested, we disentangled the ideological appeal of participation and sought alternative routes to engage patients in such a way that it would benefit all parties involved (health care professionals, patients and experts by experience). These alternative routes were found in other domains which already have more experience involving their users in the delivery and evaluation of their services. Similar to these other domains, the knowledge and expertise of experts by experience seemed to be complementary to the knowledge and expertise of healthcare professionals. Therefore, our suggested approach goes beyond the traditional patient participation initiatives where professionals decide when the knowledge of patients is desirable and what kind of input they have to deliver. Instead, we ensured all stakeholders were actively and equally engaged from the beginning. Building on Rabeharisoa & Callon, (2002), we succeeded in contributing to the emergence of a new and innovative model for the production of multi-sourced knowledge and expertise in hospital care. We demonstrated what the specific knowledge of patients consists of (Castro et al., 2016) and to what it leads in practice (see Chapter 7 and 8). We suggest that policymakers embrace this model of patient participation, as it is able to challenge the power asymmetry in health care and move away from approaches which are still rooted in the dominant professional world. Instead, the macro level should foster a culture which supports sustainable and ethical patient participation initiatives, only one of which is the involvement of experts by experience. We believe this PhD offers governments the opportunity to rethink currently used patient participation initiatives which are mainly based on indirect and reactive contact between patients and healthcare professionals (e.g. surveys) and to move towards methods based on direct and proactive interactions between both parties. Although this study mainly evaluated effects at the individual level and team level, these are also influenced by the organizational and policy level (see Figure 15) (Wagner, 1998; Kaplan et al.,, 2012). However, before the findings are extrapolated to the policy level, the research should be conducted in other hospitals. Although the choice to conduct this research project in a hospital setting was well-considered, other domains could also benefit. As community-based and integrated care is currently high on the policy agenda, citizens and patients will be expected to spend more of their recovery in their own environment, after diagnosis and treatment are determined in the hospital. The hospital will play a decreasingly central role in health care, whereas primary care will be increasingly relied on. As

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such, the involvement of experts by experience is likely to be desirable in primary care in order to build a bridge between professional care and patients’ daily life. Also, the involvement of experts by experience can be relevant for elderly care, as is already being explored in the Netherlands, where they were involved to evaluate the healthcare quality in the elderly care sector (de Graaf, 2018).

Other organizations which might play an important role in the future involvement of experts by experience in the Flemish part of Belgium are the Flemish Patient Platform (Vlaams Patiëntenplatform vzw) and the Flemish Self-Help Support Centre (Trefpunt Zelfhulp vzw). The Flemish Patient Platform aims to improve patients’ quality of life by resolving common needs and issues through advocacy at relevant policy levels and within the appropriate health facilities. We suggest they pave the way for a broad implementation of experts by experience in several hospitals and primary care institutions. It is important, however, to promote such participation activities within the right framework and context (i.e. the empowerment framework). If future research confirms our findings, the Flemish Patient Platform can further explore the possibilities of a specific statute, competence profile and remuneration scheme for experts by experience by building on this research (Van Regenmortel, 2017). Although these professionalization procedures can increase the ‘authority’ of experts by experience, we advise to be careful as one of the success factors (according to patients) in the involvement of experts by experience was the voluntary nature of their engagement. This seems to have contributed to an open and informal climate in which patients felt comfortable to talk with the experts by experience. Therefore, flexible systems regarding paid positions and voluntary activities should be promoted.

The Self-Help Support Centre will be another crucial actor to support experts by experience and safeguard their uniqueness. As this center already has 35 years of experience in aiding and strengthening patient associations and self-help groups, and in supporting their active volunteers, it holds the right expertise to take this task to heart. We suggest that they internalize the training and support program for experts by experience which they developed in the context of this study. To enrich the training course, they could include examples and cases from our project. Furthermore, we recommend that they facilitate the involvement of experts by experience by functioning as an intermediary between experts by experience (and their associations) and the hospitals (or other organizations). Organizations which might serve as examples are Markieza (mental health care, https://www.markieza.org/) and De Link (poverty and social exclusion, https://www.delinkarmoede.be/). They not only offer educational and training programs for (future) experts by experience, but they also provide a network

for the experts that stimulates growth, fosters continuity and safeguards common grounds and principles. Finally, the Self-Help Support Centre must ensure that patients, and their organizations, are not involved as auxiliaries to professionals (Rabeharisoa, 2003) but as equal partners. In their intermediary role, they must support professionals to fully understand the ‘partnership model’ and put it into practice.

In this study, a form of practice-oriented research was conducted (Billiet & Waege, 2003): participatory action research (Reason & Bradbury-Huang, 2001). We adopted the principles of empowerment research (Fetterman & Wandersman, 2007) and responsive evaluation (Abma & Widdershoven, 2014) and converged three forms of knowledge: professional or practical knowledge, experiential knowledge and scientific or theoretical knowledge. The continued exchange of knowledge among healthcare professionals, patients, experts by experience, researchers and organizations that support participation (the Flemish Patient Platform and the Self-Help Support Centre) allowed us to go beyond traditional one-way research processes. By adopting a multi-stakeholder perspective, we managed to ‘prove’ as well as ‘improve’ (Van Regenmortel, 2011). We encourage that this type of research is promoted, as it is able to bridge the gap between theory and practice.

9.5.1 Dissemination

The gap between policy guidelines, research and practice has been a long-standing challenge in several disciplines (e.g. nursing, social work) (Rubin, 2014). In order to bridge the gap between science and practice, a practice-oriented research was conducted and characteristics of the academic collaborative centre (see below) were adopted (Steens, Van Regenmortel, & Hermans, 2017). As a result, our study contributed to scientific knowledge as well as improvements in practice. To disseminate our findings beyond the three participating departments and the hospital in which these departments are located, traditional dissemination methods were pursued, such as publications, presentations and lectures for several target groups (researchers, health care practitioners, management, lay people and students). Experts by experience should also be involved in these efforts. In addition, contemporary methods such as employing social media should be considered. Another very innovative and highly recommended option to ensure further dissemination is the empowering academic collaborative centre, which refers to a partnership between a university and an institution where a researcher (‘a science practitioner’) is employed (Steens et al., 2017, Steens, 2018). It is defined as a structural and long-term collaborative venture between one or more practice-

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oriented institutions, one or more research institutions and actual users. Scientific theory and action-oriented research are designed and performed as a co-creation by professionals, users, researchers and management. The goal is to improve the quality of care and the process of empowering stakeholders, with a particular focus on the empowerment process of professionals and users (Van Regenmortel, Steenssens, & Steens, 2013). The research program of an academic collaborative centre is carried out on the basis of three principles: complete equivalence between the university and the institution where the research is conducted, personal interactions at several levels within the organisations involved and a ‘win-win’ for all parties involved. The most important added value of this partnership between research and practice is that the gap between research findings and day-to-day practice can pro-actively be avoided.

9.6 Conclusion

This research can be situated within a trend towards increased participation, both in society and in the healthcare sector, a demand that will only increase in the future. An innovative type of patient participation in hospitals is the involvement of experts by experience, which is a pro-active and intensive form of participation that entails a partnership between the healthcare professional and the patient (in this case an expert by experience). From a sociological perspective, the involvement of experts by experience has two main goals. It is seen as a way to challenge traditional relationships between healthcare professionals and the patient, and a way to contribute to the inclusion of people in a vulnerable position. From a biomedical perspective, two additional goals can be distinguished: the involvement of experts by experience is able to increase aspects of health care quality and quality of life.

Patient participation in general, and especially structural participation of experts by experience, is a very complex process. When not carefully developed, implemented and monitored, it might lead to adverse effects. In order to avoid negative consequences, the following aspects must be taken into account. First, not every patient has the appropriate competencies to at some point be involved as an expert by experience. Therefore, a well-considered selection procedure, with criteria relevant to the specific context, ensures that the right people are selected. Secondly, an effective involvement requires a broad support. A training course, in combination with inter- and supervision, ensures that experts by experience have confidence, build credibility and can further develop their expertise. Collaboration with independent organizations that promote patient participation (e.g. a self-help centre) can be an added value. It is also important not to neglect the

support of professionals involved in the implementation.

Thirdly, each participation initiative must be adapted to a specific context, which is why a co-design trajectory is indispensable. It allows all stakeholders to work together to develop a shared vision on healthcare and patient participation, and to discuss more concrete aspects of the involvement of experts by experience (e.g. the formal procedures, the necessary resources, their tasks and roles). The role of experts by experience towards health care professionals and the hospital service (health care quality improvement) is equally important as their role towards patients (mental, social and practical support). All relevant disciplines, members of management, experts by experience and patients with a recent hospital experience must be involved in this process to facilitate organizational and cultural changes, although the duration of the trajectory may depend on its objective. Fourthly, the possibility of continuous improvement must be included, and a combination of methods is to be used. Responsive evaluation designs as well as collaborations between research institutions and organizations are recommended in order to ensure that several perspectives are considered.

Overall, implementing this innovative, but complex type of patient participation requires time and cooperation between various actors and organisations. However, we recommend that hospitals and their management do take the step, especially nowadays. The trend towards increased participation and emancipation, and the increasing number of NCDs, has made people expect not only medical-clinical help, but also support to fit their NCD into their way of life. In order to meet the goals and wishes of those patients, and to offer them comprehensive care and a good quality of life, future health care (research) must consist of a combination of professional and experiential expertise. Policymakers are therefore recommended to encourage a cultural shift in health care, which experts by experience can facilitate.

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9.7 Literature

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Abma, T., & Widdershoven, G. (2014). Dialogical Ethics and Responsive Evaluation as a Framework for Patient Participation. The American Journal of Bioethics, 14(6), 27-29.

Adams, S. A., van de Bovenkamp, H., & Robben, P. (2015). Including citizens in institutional reviews: Expectations and experiences from the Dutch Healthcare Inspectorate. Health Expectations, 18(5), 1463– 1473.

Anderson, R. M., & Funnell, M. M. (2010). Patient empowerment: myths and misconceptions. Patient Education and Counseling,79(3), 277–282.

Badger, F., & Werrett, J. (2005). Room for improvement? Reporting response rates and recruitment in nursing research in the past decade. Journal of Advanced Nursing, 51 (5), 502–510.

Berg, A., Idvall, E., Katajisto, J., & Suhonen, R. (2012). A comparison between orthopaedic nurses’ and patients’ perception of individualised care. International Journal of Orthopaedic and Trauma Nursing, 16(3), 136–146.

Boylan, O., Loughrey, C., & Donaghy, F. (2011) Learning from the expert patient’s voice: implications for training, Education for Primary Care, 22(3), 140-143.

Braes, T. (2018). Burgerinitiatieven in de zorg: volwaardig en evenwaardig onderdeel van een zorg- en welzijnsecosysteem? Sociologos, 39(1), 60–64.

Burda, M.H.F., van der Horst, F., van den Akker, M., Stork, A.D.M.; Mesters, I., Bours, S.,Ploeg, M., Winkens, B., Knottnerus, J.A.(2012). Harvesting Experiential Expertise to Support Safe Driving for People with Diabetes Mellitus: A Qualitative Study Evaluated by Peers in a Survey. The Patient: patient-centered outcomes research, 5(4), 251–64.

Burda, M.H.F., Van Den Akker,M., Van Der Horst,F., Lemmens,P., & Knottnerus, J.A.(2016). Collecting and Validating Experiential Expertise Is Doable but Poses Methodological Challenges. Journal of Clinical Epidemiology, 72, 10–15.

Burns, N., Grove, S.K. (2005). The Practice of Nursing Research. Conduct, Critique and Utilisation, fifth ed. Philadelphia: W.B. Saunders Co.

Caron-Flinterman, J. F., Broerse, J. E. W., & Bunders, J. F. G. (2005). The experiential knowledge of patients: a new resource for biomedical research? Social Science & Medicine, 60(11), 2575–2584.

Casman, M.-T., Vrancken, J., Dierckx, D., Deflandre, D., & Campaert, G. (2010). Experts by experience in Poverty and in Social Exclusion. Antwerp-Apeldoorn: Garant.

Carroll, C., Patterson, M., Wood, S., Booth, A., Rick, J., & Balain, S. (2007). A conceptual framework for implementation fidelity. Implementation Science, 2(1), 1–9.

Castro, E. M., Malfait, S., Van Regenmortel, S., Van Hecke, A., Sermeus, W., & Vanhaecht, K. (2018). Co-design for implementing patient participation in hospital services: a discussion paper. Patient Education and Counseling, 101(7), 1302-1305.

Chatzimarkakis, J. (2010). Why Patients Should Be More Empowered: A European Perspective on Lessons Learned in the Management of Diabetes. Journal of Diabetes Science and Technology, 44(66), 1570–1573.

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Several social trends promote the importance of participation, a trend which is also growing in the healthcare sector, partly because the number of people with chronic conditions is rising and the emancipation of patients is increasing. Supranational organisations such as the World Health Organisation have been promoting patient participation and empowerment since the late 1980s. More than thirty years later, however, there is still a gap between policy recommendations and hospital practices. One of the reasons is the lack of effective participation methods and impact studies. This research has therefore developed and tested a specific and innovative form of patient participation: the involvement of experts by experience in hospital services. A participatory action research was set up, in which the principles of empowerment research and responsive evaluation were used as a guideline, and qualitative (individual and group interviews) as well as quantitative research techniques (pre- and post measurement) were combined.

A literature study was carried out in preparation for the first phase of the study. Its results were reviewed during interviews with key informants and through an online survey. The main purpose of the literature review was to define the core concepts of the research: experiential expertise, patient participation, patient-centredness and patient empowerment. After all, terminology determines to a large extent how a concept is translated into practice, and to date no clear definitions are available. The analyses showed that the key terms are clear concepts with different dimensions which are all related. Several key informants (experts by experience, researchers and healthcare professionals) from the mental health and social care domain, both in the Netherlands and in Belgium, were interviewed. The reason for this is that these sectors have more knowledge and experience regarding the involvement of experts by experience. In addition, an online survey was conducted to examine the current state of affairs and desirability of involving experts by experience in somatic health care according to patients.

The preparatory phase revealed that the involvement of experts by experience requires a complex and well-considered approach that takes everyone’s perspectives into account. To address this and other lessons learned from the first phase, an extensive co-design process was started during the second phase. During this process, in which a multi-stakeholder perspective was adopted, the specific nature of the involvement of experts by experience in the hospital services was worked out. In this co-design process, a common vision, preconditions, objectives, tasks and roles were

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extensively discussed. Although the precise involvement of the experts by experience varied across the hospital services, their core task was always the same: by listening, informing and motivating, they provided emotional, social and practical support to patients. They also advised the professional team on which aspects their quality of care could be improved. The different approaches in the three hospital services led to the conclusion that the involvement of experts by experience depends on the context and the target group. In a third phase, the methods of involvement were tested for nine months in three different departments (rehabilitation centre, kidney centre and atopic eczema consultations) of a university hospital. In total, 14 experts by experience were involved in a structural manner.During the fourth phase, the project was evaluated. The qualitative research techniques provided insight into the facilitating aspects prior to the implementation of the plans, both at the level of the team and the individual: a shared vision of care and participation, partnership, informal approach within a formal framework, continuity and regularity, recruitment, selection, training and support, and practical preconditions. They also revealed the actual results experienced by care providers (insight into psychosocial aspects of care, more competencies and higher job satisfaction), patients (‘human’ care, stimulating care environment, identification and recognition, awareness of preventive actions, access to mental, social and practical support) and experts by experience (sense of meaning, fulfilment, growth process). The quantitative evaluation showed a significant impact on the patient-centredness of care from the patients’ perspective. The same effect, however, was not found among the group of nurses. The results of this study led to six conclusions. A first conclusion is that implementing patient participation is a complex matter. There are various factors, at different levels, which can influence the intervention and its outcomes. Secondly, a well-considered selection, training and extensive support of the experts by experience is crucial. After all, not everyone is suitable to at some point be involved as an expert by experience. A positive attitude, social skills, an open mind and the ability to put things into perspective are important characteristics. The training and general support offered can further develop the competencies needed to expertly bring their knowledge into practice. For the selection, training and support, cooperation with intermediary organisations that promote participation is recommended. Thirdly, a preparatory co-design process is indispensable. It allows all stakeholders (including management) to have an equal say in the development and implementation of the plans. A fourth conclusion is that experts by experience have a specific role towards patients (a more supporting role) as well as professionals (a more advisory role). Although experts by experience seem to feel more comfortable in the first role,

their collective experiential knowledge can provide valuable insights to improve the quality of care. The fifth conclusion concerns the follow-up research. In order to assess the external validity, this research needs to be extended to a multi-centric setting. Finally, it can be concluded that experiential knowledge and expertise are complementary to professional knowledge and expertise. To provide patients with chronic conditions with sufficient quality of life, hospitals therefore need to give them access to both forms of knowledge. In order to improve the quality of care, the insights of professionals as well as experts by experience must be brought together at departmental and organisational level. Healthcare policies should promote the cultural shift that is necessary for this purpose, and the structural involvement of experts by experience can facilitate this change. Moreover, the involvement of experts by experience contributes to an inclusive society with equal opportunities for all to participate.

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Verschillende maatschappelijke tendensen (bv. verschuiving van verantwoordelijkheden naar de burger, budgettaire beperkingen) doen het belang van participatie toenemen. Die tendens zet zich ook door binnen de gezondheidszorg, onder meer omdat het aantal mensen met chronische aandoeningen stijgt en de emancipatie van de patiënt toeneemt. Supranationale organisaties zoals de Wereldgezondheidsorganisatie promoten sinds eind jaren tachtig patiëntenparticipatie en patient empowerment. Echter, meer dan dertig jaar later kan gesteld worden dat er nog een kloof is tussen de beleidsaanbevelingen en de praktijksituatie. Eén van de oorzaken daarvoor is het ontbreken van werkzame participatiemethodes en effectstudies. In dit onderzoek werd daarom een specifieke en innovatieve vorm van patiëntenparticipatie ontwikkeld en uitgetest in een welbepaalde context: de structurele inschakeling van ervaringsdeskundigen op ziekenhuisafdelingen. Er werd een participatief actie onderzoek opgezet, waarbij de principes van empowerment onderzoek en responsieve evaluatie werden gebruikt als leidraad, en kwalitatieve (individuele en groepsinterviews) en kwantitatieve onderzoekstechnieken (voor- en nameting) werden gecombineerd. Ter voorbereiding werd in een eerste fase van het onderzoek een literatuurstudie uitgevoerd. De resultaten daarvan werden afgetoetst tijdens interviews met bevoorrechte getuigen (ervaringsdeskundigen, onderzoekers en professionals) en via een online enquête. De literatuurstudie had als voornaamste doel de kernconcepten van het onderzoek te definiëren: ervaringsdeskundigheid, patiëntenparticipatie, patiëntgerichtheid en patient empowerment. Terminologie bepaalt immers in belangrijke mate hoe een concept wordt vertaald in de praktijk en éénduidige definities ontbraken tot nog toe. De analyses leerden dat de kernbegrippen duidelijke concepten zijn met verschillende dimensies en dat ze alle vier verband houden met elkaar: de inzet van ervaringsdeskundigheid is de motor van patiëntenparticipatie waardoor de patiëntgerichtheid kan worden verhoogd en het empowerment van de patiënt, de professional en de organisatie kan worden bevorderd. Belangrijk hierbij is dat, om schijnparticipatie te voorkomen, participatie niet kan worden losgekoppeld van empowerment. Er werden verschillende bevoorrechte getuigen uit de geestelijke gezondheidszorg en armoedesector uit Nederland en België geïnterviewd. In die sectoren bestaat er immers reeds langere tijd kennis en ervaring rond de inschakeling van ervaringsdeskundigen. Daarnaast werd een online enquête uitgevoerd bij patiënten om de stand van zaken en wenselijkheden rond de inzet van ervaringsdeskundigen in de somatische gezondheidszorg in kaart te brengen.

11 Nederlandstalige samenvatting

De voorbereidende fase leerde dat het inzetten van ervaringsdeskundigen een complexe en doordachte aanpak vraagt waarbij ieders perspectief in rekening dient gebracht te worden. In de tweede fase van dit doctoraatsonderzoek werd daarom gestart met een uitgebreid co-design traject. Tijdens dit traject, waarbij een multi-stakeholders perspectief werd gehanteerd, werd nagedacht over de manier waarop ervaringsdeskundigen ingeschakeld zouden worden op de desbetreffende ziekenhuisafdelingen. Een gemeenschappelijke visie, randvoorwaarden, doelstellingen, taken en rollen werden in het co-designtraject uitgebreid besproken. Hoewel de manier van inschakeling tussen de afdelingen verschilde, was de kerntaak van de ervaringsdeskundigen steeds dezelfde: door te luisteren, te informeren en te motiveren, boden ze emotionele, sociale en praktische ondersteuning voor patiënten. Daarnaast adviseerden ze waar nodig het professionele team om de zorgkwaliteit te verbeteren. De verschillende aanpak op de drie afdelingen leidde tot de vaststelling dat de inschakeling van ervaringsdeskundigen afhankelijk is van de context en doelgroep. In een derde fase werden de manieren van inschakeling gedurende negen maanden uitgetest op drie verschillende afdelingen (revalidatiecentrum, niercentrum en de raadpleging atopisch eczeem) van een universitair ziekenhuis. In totaal werden 14 ervaringsdeskundigen op een structurele manier ingeschakeld.

Tijdens de vierde fase werd het project geëvalueerd. De kwalitatieve onderzoekstechnieken leverden inzicht in de faciliterende aspecten op het niveau van het team en het individu (een gedeelde visie op zorg en participatie, partnerschap, ongedwongen engagement, informele aanpak binnen een formeel kader, continuïteit en regelmaat, rekrutering, selectie, training en ondersteuning, praktische randvoorwaarden) en op de uitkomsten voor zorgverleners (inzicht in psychosociale aspecten van de zorg, meer competenties en hogere jobtevredenheid), patiënten (‘menselijke’ zorg, stimulerende zorgomgeving, identificatie en herkenning, bewustzijn van preventieve acties, toegang tot mentale, sociale en praktische ondersteuning) en ervaringsdeskundigen (gevoel van betekenis, voldoening, groeiproces). Uit de kwantitatieve evaluatie blijkt dat er een significant effect is op de patiëntgerichtheid van de zorg vanuit het perspectief van de patiënten. Dit effect werd niet teruggevonden bij verpleegkundigen. De resultaten van deze studie hebben geleid tot zes conclusies. Een eerste conclusie is dat het implementeren van patiëntenparticipatie een complexe aangelegenheid is. Er zijn verschillende factoren, op verschillende niveaus, die een invloed kunnen hebben op de interventie en de uitkomsten daarvan. Ten tweede zijn een onderbouwde selectie, training en brede ondersteuning van de ervaringsdeskundigen (én professionals) cruciaal. Niet iedereen is immers geschikt om op een bepaald moment als

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ervaringsdeskundige te worden ingeschakeld. Een positieve grondhouding, sociale vaardigheden, een positieve ingesteldheid, een breed perspectief en relativeringsvermogen zijn belangrijke eigenschappen. De training en brede ondersteuning kunnen de kwaliteiten die de ervaringsdeskundigen nodig hebben om hun ervaringskennis op een deskundige manier in te zetten, verder aanscherpen. Voor de selectie, training en ondersteuning is samenwerking met intermediaire organisaties die participatie bevorderen aangewezen. Ten derde is een voorbereidend co-designtraject belangrijk. Het laat toe om alle stakeholders (inclusief het management) op een gelijkwaardige manier een stem te geven bij de uitwerking en implementatie. Een vierde conclusie is dat ervaringsdeskundigen zowel een rol hebben ten aanzien van patiënten (eerder ondersteunende rol) als ten aanzien van professionals (eerder adviserende rol). Hoewel ervaringsdeskundigen zich comfortabeler lijken te voelen met die eerste taak, kunnen ze met hun collectieve ervaringskennis waardevolle inzichten leveren om de kwaliteit van de zorg te verhogen. Een vijfde conclusie betreft het vervolgonderzoek. Om de externe validiteit te toetsen dient dit onderzoek te worden uitgebreid naar een multi-centrische setting. Tot slot kan er worden besloten dat ervaringskennis en -deskundigheid complementair zijn aan professionele kennis en deskundigheid. Om patiënten met chronische aandoeningen voldoende kwaliteit van leven te bieden, moeten ziekenhuizen hen toegang geven tot beide vormen van kennis. Om de kwaliteit van de zorg te verbeteren, dienen de inzichten van ervaringsdeskundigen en professionals worden samengebracht op afdelings- en organisatieniveau. Het gezondheidszorgbeleid dient de cultuurshift die hiertoe nodig is te promoten en het structureel inzetten van ervaringsdeskundigen kan die cultuurshift faciliteren. Bovendien draagt de inschakeling van ervaringsdeskundigen bij aan een inclusieve samenleving met gelijke participatiekansen voor iedereen.

DOCTORATEN IN DE SOCIALE WETENSCHAPPENEN

DOCTORATEN IN DE SOCIALE EN CULTURELE ANTROPOLOGIE

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18. BUNDERVOET, J., Het doorstromingsprobleem in de hedendaagse vakbeweging. Kritische literatuurstudie en verkennend onderzoek in de Belgische vakbonden, 1973, 420 blz. + bijlagen.

19. GEVERS, P., Ondernemingsraden, randverschijnselen in de Belgische industriële democratiseringsbeweging. Een sociologische studie, 1973, 314 blz.

20. MBELA, H., L’intégration de l’éducation permanente dans les objectifs socio-économiques de développe¬ment. Analyse de quelques politiques éducationnelles en vue du développement du milieu rural traditionnel en Afrique noire francophone, 1974, 250 blz.

21. CROLLEN, L., Small powers in international systems, 1974, 250 blz.

22. VAN HASSEL, H., Het ministrieel kabinet. Peilen naar een sociologische duiding, 1974, 460 blz. + bijlagen.

23. MARCK, P., Public relations voor de landbouw in de Europese Economische Gemeenschap, 1974, 384 blz.

24. LAMBRECHTS, E., Vrouwenarbeid in België. Een analyse van het tewerkstellingsbeleid inzake vrouwelijke arbeidskrachten sinds 1930, 1975, 260 blz.25. LEMMEN, M.H.W., Rationaliteit bij Max Weber. Een godsdienstsociologische studie, 1975, 2 delen, 354 blz.

26. BOON, G., Ontstaan, ontwikkeling en werking van de radio-omroep in Zaïre tijdens het Belgisch Koloniale Bewind (1937-1960), 1975, 2 delen, 617 blz.

27. WUYTS, H., De participatie van de burgers in de besluitvorming op het gebied van de gemeentelijke plannen van aanleg. Analyse toegespitst op het Nederlandstalige deel van België, 1975, 200 blz. + bijlage.

28. VERRIEST, F., Joris Helleputte en het corporatisme, 1975, 2 delen, 404 blz.

29. DELMARTINO, F., Schaalvergroting en bestuurskracht. Een beleidsanalystische benadering van de herstrukturering van de lokale besturen, 1975, 3 delen, 433 blz. + bijlagen.

30. BILLIET, J., Secularisering en verzuiling in het Belgisch onderwijs, 1975, 3 delen, 433 blz. + bijlagen.

31. DEVISCH, R., L’institution rituelle Khita chez les Yaka au Kwaango du Nord. Une analyse séméiologique, 1976, 3 volumes.

32. LAMMERTYN, F., Arbeidsbemiddeling en werkloosheid. Een sociologische verkenning van het optreden van de diensten voor openbare arbeidsbemiddeling van de R.V.A., 1976, 406 blz.

33. GOVAERTS, F., Zwitserland en de E.E.G. Een case-study inzake Europese integratie, 1976, 337 blz.

34. JACOBS, T., Het uit de echt scheiden. Een typologiserend onderzoek, aan de hand van de analyse van rechtsplegingsdossiers in echtscheiding. 1976, 333 blz. + bijlage.

35. KIM DAI WON, Au delà de l’institutionalisation des rapports professionnels. Analyse du mouvement spontané ouvrier belge. 1977, 282 blz.

36. COLSON, F., Sociale indicatoren van enkele aspecten van bevolkingsgroei. 1977, 341 blz. + bijlagen.37. BAECK, A., Het professionaliseringsproces van de Nederlandse huisarts. 1978, 721 blz. + bibliografie.

38. VLOEBERGHS, D., Feedback, communicatie en organisatie. Onderzoek

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naar de betekenis en de toepas¬sing van het begrip “feedback” in de communicatiewetenschap en de organisatietheorieën. 1978, 326 blz.

39. DIERICKX, G., De ideologische factor in de Belgische politieke besluitvorming. 1978, 609 blz. + bijvoegsels.

40. VAN DE KERCKHOVE, J., Sociologie. Maatschappelijke relevantie en arbeidersemancipatie. 1978, 551 blz.

41. DE MEYER A., De populaire muziekindustrie. Een terreinverkennende studie. 1979, 578 blz.

42. UDDIN, M., Some Social Factors influencing Age at Death in the situation of Bangladesh. 1979, 316 blz. + bijlagen.

43. MEULEMANS, E., De ethische problematiek van het lijden aan het leven en aan het samen-leven in het oeuvre van Albert Camus. De mogelijke levensstijlen van luciditeit, menselijkheid en solidariteit. 1979, 413 blz.

44. HUYPENS, J., De plaatselijke nieuwsfabriek. Regionaal nieuws. Analyse van inhoud en structuur in de krant. 494 blz.

45. CEULEMANS, M.J., Women and Mass Media: a feminist perpective. A review of the research to date the image and status of women in American mass media. 1980, 541 blz. + bijlagen.

46. VANDEKERCKHOVE, L., Gemaakt van asse. Een sociologische studie van de westerse somatische kultuur. 1980, 383 blz.47. MIN, J.K., Political Development in Korea, 1945-1972. 1980, 2 delen, 466 blz.48. MASUI, M., Ongehuwd moeder. Sociologische analyse van een wordingsproces. 1980, 257 blz.

49. LEDOUX, M., Op zoek naar de rest ...; Genealogische lezing van het psychiatrisch discours. 1981, 511 blz.

50. VEYS, D., De generatie-sterftetafels in België. 1981, 3 delen, 326 blz. + bijlagen.

51. TACQ, J., Kausaliteit in sociologisch onderzoek. Een beoordeling van de zgn. ‘causal modeling’-technieken in het licht van verschillende wijsgerige opvattingen over kausaliteit. 1981, 337 blz.

52. NKUNDABAGENZI, F., Le système politique et son environnement. Contribution à l’étude de leur inter¬action à partir du cas des pays est- africains : le Kenya et la Tanzanie. 1981, 348 blz.

53. GOOSSENS, L., Het sociaal huisvestingsbeleid in België. Een historisch- sociologische analyse van de maatschappelijke probleembehandeling op het gebied van het wonen. 1982, 3 delen.

54. SCHEPERS, R., De opkomst van het Belgisch medisch beroep. De evolutie van de wetgeving en de beroeps¬organisatie in de 19de eeuw. 1983, 553 blz.

55. VANSTEENKISTE, J., Bejaardzijn als maatschappelijk gebeuren. 1983, 166 blz.

56. MATTHIJS, K., Zelfmoord en zelfmoordpoging. 1983, 3 delen, 464 blz.

57. CHUNG-WON, Choue, Peaceful Unification of Korea. Towards Korean Integration. 1984, 338 blz.

58. PEETERS, R., Ziekte en gezondheid bij Marokkaanse immigranten. 1983, 349 blz.

59. HESLING, W., Retorica en film. Een onderzoek naar de structuur en functie van klassieke overtuigingsstrategieën in fictionele, audiovisuele teksten. 1985, 515 blz.

60. WELLEN, J., Van probleem tot hulpverlening. Een exploratie van de betrekkingen tussen huisartsen en am¬bulante geestelijke gezondheidszorg in Vlaanderen. 1984, 476 blz.

61. LOOSVELDT, G., De effecten van een interviewtraining op de kwaliteit van gegevens bekomen via het survey-interview. 1985, 311 blz. + bijlagen.

62. FOETS, M., Ziekte en gezondheidsgedrag : de ontwikkeling van de sociologische theorievorming en van het sociologisch onderzoek. 1985, 339 blz.

63. BRANCKAERTS, J., Zelfhulporganisaties. Literatuuranalyse en explorerend onderzoek in Vlaanderen. 1985.

64. DE GROOFF, D., De elektronische krant. Een onderzoek naar de mogelijkheden van nieuwsverspreiding via elektronische tekstmedia en naar de mogelijke gevolgen daarvan voor de krant als bedrijf en als massamedium. 1986, 568 blz.

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65. VERMEULEN, D., De maatschappelijke beheersingsprocessen inzake de sociaal-culturele sector in Vlaanderen. Een sociologische studie van de “verzuiling”, de professionalisering en het overheidsbeleid. 1983, 447 blz.

66. OTSHOMANPITA, Aloki, Administration locale et développement au Zaïre. Critiques et perspectives de l’organisation politico-administrative à partir du cas de la zone de Lodja. 1988, 507 blz.

67. SERVAES, J., Communicatie en ontwikkeling. Een verkennende literatuurstudie naar de mogelijkheden van een communicatiebeleid voor ontwikkelingslanden. 1987, 364 blz.

68. HELLEMANS, G., Verzuiling. Een historische en vergelijkende analyse. 1989, 302 blz.

II. NIEUWE REEKS VAN DOCTORATEN IN DE SOCIALE WETENSCHAPPEN EN IN DE SOCIALE EN CULTURELE ANTROPOLOGIE

1. LIU BOLONG, Western Europe - China. A comparative analysis of the foreign policies of the European Community, Great Britain and Belgium towards China (1970-1986). Leuven, Departement Politieke Wetenschappen, 1988, 335 blz.

2. EERDEKENS, J., Chronische ziekte en rolverandering. Een sociologisch onderzoek bij M.S.-patiënten. Leuven, Acco, 1989, 164 blz. + bijlagen.

3. HOUBEN, P., Formele beslissingsmodellen en speltheorie met toepassingen en onderzoek naar activiteiten en uitgaven van locale welzijnsinstellingen en coalities. Leuven, Departement Sociologie, 1988, 631 blz. (5 delen).

4. HOOGHE, L., Separatisme. Conflict tussen twee projecten voor natievorming. Een onderzoek op basis van drie succesvolle separatismen. Leuven, Departement Politieke Wetenschappen, 1989, 451 blz. + bijlagen.

5. SWYNGEDOUW, M., De keuze van de kiezer. Naar een verbetering van de schattingen van verschuivingen en partijvoorkeur bij opeenvolgende verkiezingen en peilingen. Leuven, Sociologisch Onderzoeksinstituut, 1989, 333 blz.

6. BOUCKAERT, G., Productiviteit in de overheid. Leuven, Vervolmakingscentrum voor Overheidsbeleid en Bestuur, 1990, 394 blz.

7. RUEBENS, M., Sociologie van het alledaagse leven. Leuven, Acco, 1990, 266 blz.

8. HONDEGHEM, A., De loopbaan van de ambtenaar. Tussen droom en werkelijkheid. Leuven, Vervolmakingscentrum voor Overheidsbeleid en Bestuur, 1990, 498 blz. + bijlage.

9. WINNUBST, M., Wetenschapspopularisering in Vlaanderen. Profiel, zelfbeeld en werkwijze van de Vlaamse wetenschapsjournalist. Leuven, Departement Communicatiewetenschap, 1990.

10. LAERMANS, R., In de greep van de “moderne tijd”. Modernisering en verzuiling, individualisering en het naoorlogse publieke discours van de ACW-vormingsorganisaties : een proeve tot cultuursociologische duiding. Leuven, Garant, 1992.

11. LUYTEN, D., OCMW en Armenzorg. Een sociologische studie van de sociale grenzen van het recht op bijstand. Leuven, S.O.I. Departement Sociologie, 1993, 487 blz.

12. VAN DONINCK, B., De landbouwcoöperatie in Zimbabwe. Bouwsteen van een nieuwe samenleving ? Grimbergen, vzw Belgium-Zimbabwe Friendship Association, 1993. 331 blz.

13. OPDEBEECK, S., Afhankelijkheid en het beëindigen van partnergeweld. Leuven, Garant, 1993. 299 blz. + bijlagen.

14. DELHAYE, C., Mode geleefd en gedragen. Leuven, Acco, 1993, 228 blz.

15. MADDENS, B., Kiesgedrag en partijstrategie. Leuven, Departement Politieke Wetenschappen, Afdeling Politologie, K.U.Leuven, 1994, 453 blz.

16. DE WIT, H., Cijfers en hun achterliggende realiteit. De MTMM- kwaliteitsparameters op hun kwaliteit onderzocht. Leuven, Departement Sociologie, K.U.Leuven, 1994, 241 blz.

17. DEVELTERE, P., Co-operation and development with special reference to the experience of the Commonwealth Carribean. Leuven, Acco, 1994, 241 blz.

18. WALGRAVE, S., Tussen loyauteit en selectiviteit. Een sociologisch onderzoek naar de ambivalente verhouding tussen nieuwe sociale bewegingen en groene partij in Vlaanderen. Leuven, Garant, 1994, 361 blz.19. CASIER, T., Over oude en nieuwe mythen. Ideologische achtergronden en repercussies van de politieke omwentelingen in Centraal- en Oost-Europa

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sinds 1985. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 1994, 365 blz.

20. DE RYNCK, F., Streekontwikkeling in Vlaanderen. Besturingsverhoudingen en beleidsnetwerken in bovenlokale ruimtes. Leuven, Departement Politieke Wetenschappen, Afdeling Bestuurswetenschap, K.U.Leuven, 1995, 432 blz.

21. DEVOS, G., De flexibilisering van het secundair onderwijs in Vlaanderen. Een organisatie-sociologische studie van macht en institutionalisering. Leuven, Acco, 1995, 447 blz.

22. VAN TRIER, W., Everyone A King? An investigation into the meaning and significance of the debate on basic incomes with special references to three episodes from the British inter-War experience. Leuven, Departement Sociologie, K.U.Leuven, 1995, vi+501 blz.

23. SELS, L., De overheid viert de teugels. De effecten op organisatie en personeelsbeleid in de autonome overheidsbedrijven. Leuven, Acco, 1995, 454 blz.

24. HONG, K.J., The C.S.C.E. Security Regime Formation: From Helsinky to Budapest. Leuven, Acco, 1996, 350 blz.

25. RAMEZANZADEH, A., Internal and international dynamics of ethnic conflict. The Case of Iran. Leuven, Acco, 1996, 273 blz.

26. HUYSMANS, J., Making/Unmaking European Disorder. Meta-Theoretical, Theoretical and Empirical Questions of Military Stability after the Cold War. Leuven, Acco, 1996, 250 blz.

27. VAN DEN BULCK J., Kijkbuiskennis. De rol van televisie in de sociale en cognitieve constructie van de realiteit. Leuven, Acco, 1996, 242 blz.

28. JEMADU Aleksius, Sustainable Forest Management in the Context of Multi-level and Multi-actor Policy Processes. Leuven, Departement Politieke Wetenschappen, Afdeling Bestuur en Overheidsmanagement, K.U.Leuven, 1996, 310 blz.

29. HENDRAWAN Sanerya, Reform and Modernization of State Enterprises. The Case of Indonesia. Leuven, Departement Politieke Wetenschappen, Afdeling Bestuur en Overheidsmanagement, K.U.Leuven, 1996, 372 blz.

30. MUIJS Roland Daniël, Self, School and Media: A Longitudinal Study of Media Use, Self-Concept, School Achievement and Peer Relations among

Primary School Children. Leuven, Departement Communicatiewetenschap, K.U.Leuven, 1997, 316 blz.

31. WAEGE Hans, Vertogen over de relatie tussen individu en gemeenschap. Leuven, Acco, 1997, 382 blz.

32. FIERS Stefaan, Partijvoorzitters in België of ‘Le parti, c’est moi’? Leuven, Acco, 1998, 419 blz.

33. SAMOY Erik, Ongeschikt of ongewenst? Een halve eeuw arbeidsmarktbeleid voor gehandicapten. Leuven, Departement Sociologie, K.U.Leuven, 1998, 640 blz.

34. KEUKELEIRE Stephan, Het Gemeenschappelijk Buitenlands en Veiligheidsbeleid (GBVB): het buitenlands beleid van de Europese Unie op een dwaalspoor. Leuven, Departement Politieke Wetenschappen, Afdeling Internationale Betrekkingen, K.U.Leuven, 1998, 452 blz.

35. VERLINDEN Ann, Het ongewone alledaagse: over zwarte katten, horoscopen, miraculeuze genezingen en andere geloofselementen en praktijken. Een sociologie van het zogenaamde bijgeloof. Leuven, Departement Sociologie, K.U.Leuven, 1999, 387 blz. + bijlagen.

36. CARTON Ann, Een interviewernetwerk: uitwerking van een evaluatieprocedure voor interviewers. Leuven, Departement Sociologie, 1999, 379 blz. + bijlagen.

37. WANG Wan-Li, Undestanding Taiwan-EU Relations: An Analysis of the Years from 1958 to 1998. Leuven, Departement Politieke Wetenschappen, Afdeling Internationale Betrekkingen, K.U.Leuven, 1999, 326 blz. + bijlagen.

38. WALRAVE Michel, Direct Marketing en Privacy. De verhouding tussen direct marketingscommunicatie en de bescherming van de informationele en de relationele privacy van consumenten. Leuven, Departement Communicatiewetenschap, K.U.Leuven, 1999, 480 blz. + bijlagen.

39. KOCHUYT Thierry, Over een ondercultuur. Een cultuursociologische studie naar de relatieve deprivatie van arme gezinnen. Leuven, Departement Sociologie, K.U.Leuven, 1999, 386 blz. + bijlagen.

40. WETS Johan, Waarom onderweg? Een analyse van de oorzaken van grootschalige migratie- en vluchtelingenstromen. Leuven, Departement Politieke Wetenschappen, Afdeling Internationale Betrekkingen, K.U.Leuven, 1999, 321 blz. + bijlagen.

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41. VAN HOOTEGEM Geert, De draaglijke traagheid van het management. Productie- en Personeelsbeleid in de industrie. Leuven, Departement Sociologie, K.U.Leuven, 1999, 471 blz. + bijlagen.

42. VANDEBOSCH Heidi, Een geboeid publiek? Het gebruik van massamedia door gedetineerden. Leuven, Departement Communicatiewetenschap, K.U.Leuven, 1999, 375 blz. + bijlagen.

43. VAN HOVE Hildegard, De weg naar binnen. Spiritualiteit en zelfontplooiing. Leuven, Departement Sociologie, K.U.Leuven, 2000, 369 blz. + bijlagen.

44. HUYS Rik, Uit de band? De structuur van arbeidsverdeling in de Belgische autoassemblagebedrijven. Leuven, Departement Sociologie, K.U.Leuven, 2000, 464 blz. + bijlagen.

45. VAN RUYSSEVELDT Joris, Het belang van overleg. Voorwaarden voor macroresponsieve CAO-onderhandelingen in de marktsector. Leuven, Departement Sociologie, K.U.Leuven, 2000, 349 blz. + bijlagen.

46. DEPAUW Sam, Cohesie in de parlementsfracties van de regeringsmeerderheid. Een vergelijkend onderzoek in België, Frankrijk en het Verenigd Koninkrijk (1987-97). Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2000, 510 blz. + bijlagen.

47. BEYERS Jan, Het maatschappelijk draagvlak van het Europees beleid en het einde van de permissieve consensus. Een empirisch onderzoek over politiek handelen in een meerlagig politiek stelsel. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2000, 269 blz. + bijlagen.

48. VAN DEN BULCK Hilde, De rol van de publieke omroep in het project van de moderniteit. Een analyse van de bijdrage van de Vlaamse publieke televisie tot de creatie van een nationale cultuur en identiteit (1953-1973). Leuven, Departement Communicatiewetenschap, K.U.Leuven, 2000, 329 blz. + bijlagen.

49. STEEN Trui, Krachtlijnen voor een nieuw personeelsbeleid in de Vlaamse gemeenten. Een studie naar de sturing en implementatie van veranderingsprocessen bij de overheid. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2000, 340 blz. + bijlagen.

50. PICKERY Jan, Applications of Multilevel Analysis in Survey Data Quality Research. Random Coefficient Models for Respondent and Interviewer Effects. Leuven, Departement Sociologie, K.U.Leuven, 2000, 200 blz. + bijlagen.

51. DECLERCQ Aniana (Anja), De complexe zoektocht tussen orde en chaos. Een sociologische studie naar de differentiatie in de institutionele zorgregimes voor dementerende ouderen. Leuven, Departement Sociologie, K.U.Leuven, 2000, 260 blz. + bijlagen.

52. VERSCHRAEGEN Gert, De maatschappij zonder eigenschappen. Systeemtheorie, sociale differentiatie en moraal. Leuven, Departement Sociologie, K.U.Leuven, 2000, 256 blz. + bijlagen.

53. DWIKARDANA Sapta, The Political Economy of Development and Industrial Relations in Indonesia under the New Order Government. Leuven, Departement Sociologie, K.U.Leuven, 2001, 315 blz. + bijlagen.

54. SAUER Tom, Nuclear Inertia. US Nuclear Weapons Policy after the Cold War (1990-2000). Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2001, 358 blz. + bijlagen.

55. HAJNAL Istvan, Classificatie in de sociale wetenschappen. Een evaluatie van de nauwkeurigheid van een aantal clusteranalysemethoden door middel van simulaties. Leuven, Departement Sociologie, K.U.Leuven, 2001, 340 blz. + bijlagen.

56. VAN MEERBEECK Anne, Het doopsel: een familieritueel. Een sociologische analyse van de betekenissen van dopen in Vlaanderen. Leuven, Departement Sociologie, K.U.Leuven, 2001, 338 blz. + bijlagen.

57. DE PRINS Peggy, Zorgen om zorg(arbeid). Een vergelijkend onderzoek naar oorzaken van stress en maatzorg in Vlaamse rusthuizen. Leuven, Departement Sociologie, K.U.Leuven, 2001, 363 blz. + bijlagen.

58. VAN BAVEL Jan, Demografische reproductie en sociale evolutie: geboortebeperking in Leuven 1840-1910. Leuven, Departement Sociologie, K.U.Leuven, 2001, 362 blz. + bijlagen.

59. PRINSLOO Riana, Subnationalism in a Cleavaged Society with Reference to the Flemish Movement since 1945. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2001, 265 blz. + bijlagen.

60. DE LA HAYE Jos, Missed Opportunities in Conflict Management. The Case of Bosnia-Herzegovina (1987-1996). Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2001, 283 blz. + bijlagen.

61. ROMMEL Ward, Heeft de sociologie nood aan Darwin? Op zoek naar de verhouding tussen evolutiepsychologie en sociologie. Leuven, Departement Sociologie, K.U.Leuven, 2002, 287 blz. + bijlagen.

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62. VERVLIET Chris, Vergelijking tussen Duits en Belgisch federalisme, ter toetsing van een neofunctionalistisch verklaringsmodel voor bevoegdheidsverschuivingen tussen nationale en subnationale overheden: een analyse in het economisch beleidsdomein. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2002, 265 blz. + bijlagen.

63. DHOEST Alexander, De verbeelde gemeenschap: Vlaamse tv- fictie en de constructie van een nationale identiteit. Leuven, Departement Communicatiewetenschap, K.U.Leuven, 2002, 384 blz. + bijlagen.

64. VAN REETH Wouter, The Bearable Lightness of Budgeting. The Uneven Implementation of Performance Oriented Budget Reform Across Agencies. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2002, 380 blz. + bijlagen.

65. CAMBRé Bart, De relatie tussen religiositeit en etnocentrisme. Een contextuele benadering met cross-culturele data. Leuven, Departement Sociologie, K.U.Leuven, 2002, 257 blz. + bijlagen.

66. SCHEERS Joris, Koffie en het aroma van de stad. Tropische (re-) productiestructuren in ruimtelijk perspectief. Casus centrale kustvlakte van Ecuador. Leuven, Departement Sociologie, K.U.Leuven, 2002, 294 blz. + bijlagen.

67. VAN ROMPAEY Veerle, Media on / Family off? An integrated quantitative and qualitative investigation into the implications of Information and Communication Technologies (ICT) for family life. Leuven, Departement Communicatiewetenschap, K.U.Leuven, 2002, 232 blz. + bijlagen.

68. VERMEERSCH Peter, Roma and the Politics of Ethnicity in Central Europe. A Comparative Study of Ethnic Minority Mobilisation in the Czech Republic, Hungary and Slovakia in the 1990s. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2002, 317 blz. + bijlagen.

69. GIELEN Pascal, Pleidooi voor een symmetrische kunstsociologie. Een sociologische analyse van artistieke selectieprocessen in de sectoren van de hedendaagse dans en de beeldende kunst in Vlaanderen. Leuven, Departement Sociologie, K.U.Leuven, 2002, 355 blz. + bijlagen.

70. VERHOEST Koen, Resultaatgericht verzelfstandigen. Een analyse vanuit een verruimd principaal-agent perspectief. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2002, 352 blz. + bijlagen.

71. LEFÈVRE Pascal, Willy Vandersteens Suske en Wiske in de krant (1945- 1971). Een theoretisch kader voor een vormelijke analyse van strips. Leuven, Departement Communicatiewetenschap, K.U.Leuven, 2003, 186 blz. (A3) + bijlagen.

72. WELKENHUYSEN-GYBELS Jerry, The Detection of Differential Item Functioning in Likert Score Items. Leuven, Departement Sociologie, K.U.Leuven, 2003, 222 blz. + bijlagen.

73. VAN DE PUTTE Bart, Het belang van de toegeschreven positie in een moderniserende wereld. Partnerkeuze in 19de-eeuwse Vlaamse steden (Leuven, Aalst en Gent). Leuven, Departement Sociologie, K.U.Leuven, 2003, 425 blz. + bijlagen.

74. HUSTINX Lesley, Reflexive modernity and styles of volunteering: The case of the Flemish Red Cross volunteers. Leuven, Departement Sociologie, K.U.Leuven, 2003, 363 blz. + bijlagen.

75. BEKE Wouter, De Christelijke Volkspartij tussen 1945 en 1968. Breuklijnen en pacificatiemechanismen in een catch-allpartij. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2004, 423 blz. + bijlagen.

76. WAYENBERG Ellen, Vernieuwingen in de Vlaamse centrale - lokale verhoudingen: op weg naar partnerschap? Een kwalitatieve studie van de totstandkoming en uitvoering van het sociale impulsbeleid. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2004, 449 blz. + bijlagen.

77. MAESSCHALCK Jeroen, Towards a Public Administration Theory on Public Servants’ Ethics. A Comparative Study. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2004, 374 blz. + bijlagen.

78. VAN HOYWEGHEN Ine, Making Risks. Travels in Life Insurance and Genetics. Leuven, Departement Sociologie, K.U.Leuven, 2004, 248 blz. + bijlagen.

79. VAN DE WALLE Steven, Perceptions of Administrative Performance: The Key to Trust in Government? Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2004, 261 blz. + bijlagen.

80. WAUTERS Bram, Verkiezingen in organisaties. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2004, 707 blz. + bijlagen.

81. VANDERLEYDEN Lieve, Het Belgische/Vlaamse ouderenbeleid in de periode 1970-1999 gewikt en gewogen. Leuven, Departement Sociologie, K.U.Leuven, 2004, 386 blz. + bijlagen.

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82. HERMANS Koen, De actieve welvaartsstaat in werking. Een sociologische studie naar de implementatie van het activeringsbeleid op de werkvloer van de Vlaamse OCMW’s. Leuven, Departement Sociologie, K.U.Leuven, 2005, 300 blz. + bijlagen.

83. BEVIGLIA ZAMPETTI Americo, The Notion of ‘Fairness’ in International Trade Relations: the US Perspective. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2005, 253 blz. + bijlagen.

84. ENGELEN Leen, De verbeelding van de Eerste Wereldoorlog in de Belgische speelfilm (1913-1939). Leuven, Departement Communicatiewetenschap, K.U.Leuven, 2005, 290 blz. + bijlagen.

85. VANDER WEYDEN Patrick, Effecten van kiessystemen op partijsystemen in nieuwe democratieën. Leuven, Departement Sociologie, K.U.Leuven/ K.U.Brussel, 2005, 320 blz. + bijlagen.

86. VAN HECKE Steven, Christen-democraten en conservatieven in de Europese Volkspartij. Ideologische verschillen, nationale tegenstellingen en transnationale conflicten. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2005, 306 blz. + bijlagen.

87. VAN DEN VONDER Kurt, “The Front Page” in Hollywood. Een geïntegreerde historisch-poëticale analyse. Leuven, Departement Communicatiewetenschap, K.U.Leuven, 2005, 517 blz. + bijlagen.

88. VAN DEN TROOST Ann, Marriage in Motion. A Study on the Social Context and Processes of Marital Satisfaction. Leuven, Departement Sociologie, K.U.Leuven/R.U.Nijmegen, Nederland, 2005, 319 blz. + bijlagen.

89. ERTUGAL Ebru, Prospects for regional governance in Turkey on the road to EU membership: Comparison of three regions. Leuven, Departement Politieke Wetenschappen, K.U.Leuven, 2005, 384 blz. + bijlagen.

90. BENIJTS Tim, De keuze van beleidsinstrumenten. Een vergelijkend onderzoek naar duurzaam sparen en beleggen in België en Nederland. Leuven, Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2005, 501 blz. + bijlagen

91. MOLLICA Marcello, The Management of Death and the Dynamics of an Ethnic Conflict: The Case of the 1980-81 Irish National Liberation Army (INLA) Hunger Strikes in Northern Ireland. Leuven, Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2005, 168 blz. + bijlagen

92. HEERWEGH Dirk, Web surveys. Explaining and reducing unit nonresponse, item nonresponse and partial nonresponse. Leuven, Onderzoekseenheid: Centrum voor Sociologie [CeSO], K.U.Leuven, 2005, 350 blz. + bijlagen

93. GELDERS David (Dave), Communicatie over nog niet aanvaard beleid: een uitdaging voor de overheid? Leuven, Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], K.U.Leuven, 2005, (Boekdeel 1 en 2) 502 blz. + bijlagenboek

94. PUT Vital, Normen in performance audits van rekenkamers. Een casestudie bij de Algemene Rekenkamer en het National Audit Office. Leuven, Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2005, 209 blz. + bijlagen

95. MINNEBO Jurgen, Trauma recovery in victims of crime: the role of television use. Leuven, Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], K.U.Leuven, 2006, 187 blz. + bijlagen

96. VAN DOOREN Wouter, Performance Measurement in the Flemish Public Sector: A Supply and Demand Approach. Leuven, Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2006, 245 blz. + bijlagen

97. GIJSELINCKX Caroline, Kritisch Realisme en Sociologisch Onderzoek. Een analyse aan de hand van studies naar socialisatie in multi-etnische samenlevingen. Leuven, Onderzoekseenheid: Centrum voor Sociologie [CeSO], K.U.Leuven, 2006, 305 blz. + bijlagen

98. ACKAERT Johan, De burgemeestersfunctie in België. Analyse van haar legitimering en van de bestaande rolpatronen en conflicten. Leuven, Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2006, 289 blz. + bijlagen

99. VLEMINCKX Koen, Towards a New Certainty: A Study into the Recalibration of the Northern-Tier Conservative Welfare States from an Active Citizens Perspective. Leuven, Onderzoekseenheid: Centrum voor Sociologie [CeSO], K.U.Leuven, 2006, 381 blz. + bijlagen

100. VIZI Balázs, Hungarian Minority Policy and European Union Membership. An Interpretation of Minority Protection Conditionality in EU Enlargement. Leuven, Onderzoekseenheid: Insituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2006, 227 blz. + bijlagen

101. GEERARDYN Aagje, Het goede doel als thema in de externe communicatie. Bedrijfscommunicatie met een sociaal gezicht? Leuven, Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], K.U.Leuven, 2006, 272 blz. + bijlagen

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102. VANCOPPENOLLE Diederik, De ambtelijke beleidsvormingsrol verkend en getoetst in meervoudig vergelijkend perspectief. Een two-level analyse van de rol van Vlaamse ambtenaren in de Vlaamse beleidsvorming. Leuven, Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2006, 331 blz. + bijlagenboek

103. DOM Leen, Ouders en scholen: partnerschap of (ongelijke) strijd? Een kwalitatief onderzoek naar de relatie tussen ouders en scholen in het lager onderwijs. Leuven, Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2006, 372 blz. + bijlagen

104. NOPPE Jo, Van kiesprogramma tot regeerakkoord. De beleidsonderhandelingen tussen de politieke partijen bij de vorming van de Belgische federale regering in 1991-1992 en in 2003. Leuven, Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2006, 364 blz. + bijlagen

105. YASUTOMI Atsushi, Alliance Enlargement: An Analysis of the NATO Experience. Leuven, Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2006, 294 blz. + bijlagen

106. VENTURINI Gian Lorenzo, Poor Children in Europe. An Analytical Approach to the Study of Poverty in the European Union 1994-2000. Dipartimento di Scienze Sociali, Università degli studi di Torino, Torino (Italië) / Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2006, 192 blz. + bijlagen

107. EGGERMONT Steven, The impact of television viewing on adolescents’ sexual socialization. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], K.U.Leuven, 2006, 244 blz. + bijlagen

108. STRUYVEN Ludovicus, Hervormingen tussen drang en dwang. Een sociologisch onderzoek naar de komst en de gevolgen van marktwerking op het terrein van arbeidsbemiddeling. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2006, 323 blz. + bijlagen

109. BROOS Agnetha, De digitale kloof in de computergeneratie: ICT-exclusie bij adolescenten. School voor Massa-communicatieresearch [SMC], K.U.Leuven, 2006, 215 blz. + bijlagen

110. PASPALANOVA Mila, Undocumented and Legal Eastern European Immigrants in Brussels. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven/K.U.Brussel, 2006, 383 blz. + bijlagen

111. CHUN Kwang Ho, Democratic Peace Building in East Asia in Post-Cold War

Era. A Comparative Study. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2006, 297 blz. + bijlagen

112. VERSCHUERE Bram, Autonomy & Control in Arm’s Length Public Agencies: Exploring the Determinants of Policy Autonomy. Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2006, 363 blz. + bijlagenboek

113. VAN MIERLO Jan, De rol van televisie in de cultivatie van percepties en attitudes in verband met geneeskunde en gezondheid. Onderzoekseenheid: School voor Massa-communicatieresearch [SMC], K.U.Leuven, 2007, 363 blz. + bijlagen

114. VENCATO Maria Francesca, The Development Policy of the CEECs: the EU Political Rationale between the Fight Against Poverty and the Near Abroad. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2007, 276 blz. + bijlagen

115. GUTSCHOVEN Klaas, Gezondheidsempowerment en de paradigmaverschuiving in de gezondheidszorg: de rol van het Internet. Onderzoekseenheid: School voor Massa-communicatieresearch [SMC], K.U.Leuven, 2007, 330 blz. + bijlagen

116. OKEMWA James, Political Leadership and Democratization in the Horn of Africa (1990-2000) Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2007, 268 blz. + bijlagen

117. DE COCK Rozane, Trieste Vedetten? Assisenverslaggeving in Vlaamse kranten. Onderzoekseenheid: School voor Massa-communicatieresearch [SMC], K.U.Leuven, 2007, 257 blz. + bijlagen

118. MALLIET Steven, The Challenge of Videogames to Media Effect Theory. Onderzoekseenheid: Centrum voor Mediacultuur en communicatietechnologie [CMC], K.U.Leuven, 2007, 187 blz. + bijlagen

119. VANDECASTEELE Leen, Dynamic Inequalities. The Impact of Social Stratification Determinants on Poverty Dynamics in Europe. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2007, 246 blz. + bijlagen

120. DONOSO Veronica, Adolescents and the Internet: Implications for Home, School and Social Life. Onderzoekseenheid: School voor Massa- communicatieresearch [SMC], K.U.Leuven, 2007, 264 blz. + bijlagen

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121. DOBRE Ana Maria, Europeanisation From A Neo-Institutionalist Perspective: Experiencing Territorial Politics in Spain and Romania. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2007, 455 blz. + bijlagen

122. DE WIT Kurt, Universiteiten in Europa in de 21e eeuw. Netwerken in een veranderende samenleving. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2007,362 blz. + bijlagen

123. CORTVRIENDT Dieter, The Becoming of a Global World: Technology / Networks / Power / Life. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2008, 346 blz. + bijlagen

124. VANDER STICHELE Alexander, De culturele alleseter? Een kwantitatief en kwalitatief onderzoek naar ‘culturele omnivoriteit’ in Vlaanderen. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2008, 414 blz. + bijlagen(boek)

125. LIU HUANG Li-chuan, A Biographical Study of Chinese Restaurant People in Belgium: Strategies for Localisation. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2008, 365 blz. + bijlagen

126. DEVILLé Aleidis, Schuilen in de schaduw. Een sociologisch onderzoek naar de sociale constructie van verblijfsillegaliteit. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2008, 469 blz. + bijlagen

127. FABRE Elodie, Party Organisation in a multi-level setting: Spain and the United Kingdom. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2008, 282 blz. + bijlagen

128. PELGRIMS Christophe, Politieke actoren en bestuurlijke hervormingen. Een stakeholder benadering van Beter Bestuurlijk Beleid en Copernicus. Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2008, 374 blz. + bijlagen

129. DEBELS Annelies, Flexibility and Insecurity. The Impact of European Variants of Labour Market Flexibility on Employment, Income and Poverty Dynamics. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2008, 366 blz. + bijlagen

130. VANDENABEELE Wouter, Towards a public administration theory of public service motivation. Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2008, 306 blz. + bijlagen

131. DELREUX Tom, The European union negotiates multilateral environmental agreements: an analysis of the internal decision-making process. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2008, 306 blz. + bijlagen

132. HERTOG Katrien, Religious Peacebuilding: Resources and Obstacles in the Russian Orthodox Church for Sustainable Peacebuilding in Chechnya. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2008, 515 blz. + bijlagen

133. PYPE Katrien, The Making of the Pentecostal Melodrama. Mimesis, Agency and Power in Kinshasa’s Media World (DR Congo). Onderzoekseenheid: Instituut voor Antropologie in Afrika [IARA], K.U.Leuven, 2008, 401 blz. + bijlagen + dvd

134. VERPOEST Lien, State Isomorphism in the Slavic Core of the Commonwealth of Independent States (CIS). A Comparative Study of Postcommunist Geopolitical Pluralism in Russia, Ukraine and Belarus. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2008, 412 blz. + bijlagen

135. VOETS Joris, Intergovernmental relations in multi-level arrangements: Collaborative public management in Flanders. Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2008, 260 blz. + bijlagen

136. LAENEN Ria, Russia’s ‘Near Abroad’ Policy and Its Compatriots (1991- 2001). A Former Empire In Search for a New Identity. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2008, 293 blz. + bijlagen

137. PEDZIWIATR Konrad Tomasz, The New Muslim Elites in European Cities: Religion and Active Social Citizenship Amongst Young Organized Muslims in Brussels and London. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2008, 483 blz. + bijlagen

138. DE WEERDT Yve, Jobkenmerken en collectieve deprivatie als verklaring voor de band tussen de sociale klasse en de economische attitudes van werknemers in Vlaanderen. Onderzoekseenheden: Centrum voor Sociologisch Onderzoek [CeSO] en Onderzoeksgroep Arbeids-, Organisatie- en Personeelspsychologie, K.U.Leuven, 2008, 155 blz. + bijlagen

139. FADIL Nadia, Submitting to God, submitting to the Self. Secular and religious trajectories of second generation Maghrebi in Belgium. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2008, 370 blz. + bijlagen

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140. BEUSELINCK Eva, Shifting public sector coordination and the underlying drivers of change: a neo-institutional perspective. Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2008, 283 blz. + bijlagen

141. MARIS Ulrike, Newspaper Representations of Food Safety in Flanders, The Netherlands and The United Kingdom. Conceptualizations of and Within a ‘Risk Society’. Onderzoekseenheid: School voor Massa- communicatieresearch [SMC], K.U.Leuven, 2008, 159 blz. + bijlagen

142. WEEKERS Karolien, Het systeem van partij- en campagnefinanciering in België: een analyse vanuit vergelijkend perspectief. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2008, 248 blz. + bijlagen

143. DRIESKENS Edith, National or European Agents? An Exploration into the Representation Behaviour of the EU Member States at the UN Security Council. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2008, 221 blz. + bijlagen

144. DELARUE Anne, Teamwerk: de stress getemd? Een multilevelonderzoek naar het effect van organisatieontwerp en teamwerk op het welbevinden bij werknemers in de metaalindustrie. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2009, 454 blz. + bijlagen

145. MROZOWICKI Adam, Coping with Social Change. Life strategies of workers in Poland after the end of state socialism. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2009, 383 blz. + bijlagen

146. LIBBRECHT Liselotte, The profile of state-wide parties in regional elections. A study of party manifestos: the case of Spain. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2009, 293 blz. + bijlagen

147. SOENEN Ruth, De connecties van korte contacten. Een etnografie en antropologische reflectie betreffende transacties, horizontale bewegingen, stedelijke relaties en kritische indicatoren. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], K.U.Leuven, 2009, 231 blz. + bijlagen

148. GEERTS David, Sociability Heuristics for Interactive TV. Supporting the Social Uses of Television. Onderzoekseenheid: Centrum voor Mediacultuur en Communicatietechnologie [CMC], K.U.Leuven, 2009, 201 blz. + bijlagen

149. NEEFS Hans, Between sin and disease. A historical-sociological study of the prevention of syphilis and AIDS in Belgium (1880-2000). Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2009, 398 blz. + bijlagen

150. BROUCKER Bruno, Externe opleidingen in overheidsmanangement en de transfer van verworven kennis. Casestudie van de federale overheid. Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2009, 278 blz. + bijlagen

151. KASZA Artur, Policy Networks and the Regional Development Strategies in Poland. Comparative case studies from three regions. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2009, 485 blz. + bijlagen

152. BEULLENS Kathleen, Stuurloos? Een onderzoek naar het verband tussen mediagebruik en risicogedrag in het verkeer bij jongeren. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], K.U.Leuven, 2009, 271 blz. + bijlagen

153. OPGENHAFFEN Michaël, Multimedia, Interactivity, and Hypertext in Online News: Effect on News Processing and Objective and Subjective Knowledge. Onderzoekseenheid: Centrum voor Mediacultuur en Communicatietechnologie [CMC], K.U.Leuven, 2009, 233 blz. + bijlagen

154. MEULEMAN Bart, The influence of macro-sociological factors on attitudes toward immigration in Europe. A cross-cultural and contextual approach. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2009, 276 blz. + bijlagen

155. TRAPPERS Ann, Relations, Reputations, Regulations: An Anthropological Study of the Integration of Romanian Immigrants in Brussels, Lisbon and Stockholm. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], K.U.Leuven, 2009, 228 blz. + bijlagen

156. QUINTELIER Ellen, Political participation in late adolescence. Political socialization patterns in the Belgian Political Panel Survey. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2009, 288 blz. + bijlagen

157. REESKENS Tim, Ethnic and Cultural Diversity, Integration Policies and Social Cohesion in Europe. A Comparative Analysis of the Relation between Cultural Diversity and Generalized Trust in Europe. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2009, 298 blz. + bijlagen

158. DOSSCHE Dorien, How the research method affects cultivation outcomes. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], K.U.Leuven, 2010, 254 blz. + bijlagen

159. DEJAEGHERE Yves, The Political Socialization of Adolescents. An

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Exploration of Citizenship among Sixteen to Eighteen Year Old Belgians. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2010, 240 blz. + bijlagen

160. GRYP Stijn, Flexibiliteit in bedrijf - Balanceren tussen contractuele en functionele flexibiliteit. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2010, 377 blz. + bijlagen

161. SONCK Nathalie, Opinion formation: the measurement of opinions and the impact of the media. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2010, 420 blz. + bijlagen

162. VISSERS Sara, Internet and Political Mobilization. The Effects of Internet on Political Participation and Political Equality. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2010, 374 blz. + bijlagen

163. PLANCKE Carine, « J’irai avec toi » : désirs et dynamiques du maternel dans les chants et les danses punu (Congo-Brazzaville). Onderzoekseenheden: Instituut voor Antropologie in Afrika [IARA], K.U.Leuven / Laboratoire d’Anthropologie Sociale [LAS, Parijs], EHESS, 2010, 398 blz. + bijlagenboek + DVD + CD

164. CLAES Ellen, Schools and Citizenship Education. A Comparative Investigation of Socialization Effects of Citizenship Education on Adolescents. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2010, 331 blz. + bijlagen

165. LEMAL Marijke, “It could happen to you.” Television and health risk perception. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], K.U.Leuven, 2010, 316 blz. + bijlagen

166. LAMLE Nankap Elias, Laughter and conflicts. An anthropological exploration into the role of joking relationships in conflict mediation in Nigeria: A case study of Funyallang in Tarokland. Onderzoekseenheid: Instituut voor Antropologie in Afrika [IARA], K.U.Leuven, 2010, 250 blz. + bijlagen

167. DOGRUEL Fulya, Social Transition Across Multiple Boundaries: The Case of Antakya on The Turkish-Syrian Border. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], K.U.Leuven, 2010, 270 blz. + bijlagen

168. JANSOVA Eva, Minimum Income Schemes in Central and Eastern Europe. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2010, 195 blz. + bijlagen

169. IYAKA Buntine (François-Xavier), Les Politiques des Réformes Administratives en République Démocratique du Congo (1990-2010). Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2010, 269 blz. + bijlagen

170. MAENEN Seth, Organizations in the Offshore Movement. A Comparative Study on Cross-Border Software Development and Maintenance Projects. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2010, 296 blz. + bijlagen

171. FERRARO Gianluca Domestic Implementation of International Regimes in Developing Countries. The Case of Marine Fisheries in P.R. China. Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2010, 252 blz. + bijlagen

172. van SCHAIK Louise, Is the Sum More than Its Parts? A Comparative Case Study on the Relationship between EU Unity and its Effectiveness in International Negotiations. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2010, 219 blz. + bijlagen

173. SCHUNZ Simon, European Union foreign policy and its effects - a longitudinal study of the EU’s influence on the United Nations climate change regime (1991-2009). Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2010, 415 blz. + bijlagen

174. KHEGAI Janna, Shaping the institutions of presidency in the post-Soviet states of Central Asia: a comparative study of three countries.. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2010, 193 blz. + bijlagen

175. HARTUNG Anne, Structural Integration of Immigrants and the Second Generation in Europe: A Study of Unemployment Durations and Job Destinations in Luxembourg, Belgium and Germany. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2010, 285 blz. + bijlagen

176. STERLING Sara, Becoming Chinese: Ethnic Chinese-Venezuelan Education Migrants and the Construction of Chineseness. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], K.U.Leuven, 2010, 225 blz. + bijlagen

177. CUVELIER Jeroen, Men, mines and masculinities in Katanga: the lives and practices of artisanal miners in Lwambo (Katanga province, DR Congo).

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Onderzoekseenheid: Instituut voor Antropologie in Afrika [IARA], K.U.Leuven, 2011, 302 blz. + bijlagen

178. DEWACHTER Sara, Civil Society Participation in the Honduran Poverty Reduction Strategy: Who takes a seat at the pro-poor table? Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2011, 360 blz. + bijlagen

179. ZAMAN Bieke, Laddering method with preschoolers. Understanding preschoolers’ user experience with digital media. Onderzoekseenheid: Centrum voor Mediacultuur en Communicatietechnologie [CMC], K.U.Leuven, 2011, 222 blz. + bijlagen

180. SULLE Andrew, Agencification of Public Service Management in Tanzania: The Causes and Control of Executive Agencies. Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2011, 473 blz. + bijlagen

181. KOEMAN Joyce, Tussen commercie en cultuur: Reclamepercepties van autochtone en allochtone jongeren in Vlaanderen. Onderzoekseenheid: Centrum voor Mediacultuur en Communicatietechnologie [CMC], K.U.Leuven, 2011, 231 blz. + bijlagen

182. GONZALEZ GARIBAY Montserrat, Turtles and teamsters at the GATT/WTO. An analysis of the developing countries’ trade-labor and trade-environment policies during the 1990s. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2011, 403 blz. + bijlagen

183. VANDEN ABEELE Veronika, Motives for Motion-based Play. Less flow, more fun. Onderzoekseenheid: Centrum voor Mediacultuur en Communicatietechnologie [CMC], K.U.Leuven, 2011, 227 blz. + bijlagen184. MARIEN Sofie, Political Trust. An Empirical Investigation of the Causes and Consequences of Trust in Political Institutions in Europe. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2011, 211 blz. + bijlagen

185. JANSSENS Kim, Living in a material world: The effect of advertising on materialism. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], K.U.Leuven, 2011, 197 blz. + bijlagen

186. DE SCHUTTER Bob, De betekenis van digitale spellen voor een ouder publiek. Onderzoekseenheid: Centrum voor Mediacultuur en Communicatietechnologie [CMC], K.U.Leuven, 2011, 339 blz. + bijlagen

187. MARX Axel, Global Governance and Certification. Assessing the Impact of Non-State Market Governance. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2011, 140 blz. + bijlagen

188. HESTERS Delphine, Identity, culture talk & culture. Bridging cultural sociology and integration research - a study on second generation Moroccan and native Belgian residents of Brussels and Antwerp. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven, 2011, 440 blz. + bijlagen

189. AL-FATTAL Rouba, Transatlantic Trends of Democracy Promotion in the Mediterranean: A Comparative Study of EU, US and Canada Electoral Assistance in the Palestinian Territories (1995-2010). Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2011, 369 blz. + bijlagen

190. MASUY Amandine, How does elderly family care evolve over time? An analysis of the care provided to the elderly by their spouse and children in the Panel Study of Belgian Households 1992-2002. Onderzoekseenheden: Centrum voor Sociologisch Onderzoek [CeSO], K.U.Leuven / Institute of Analysis of Change in Contemporary and Historical Societies [IACCHOS], Université Catholique de Louvain, 2011, 421 blz. + bijlagen

191. BOUTELIGIER Sofie, Global Cities and Networks for Global Environmental Governance. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2011, 263 blz. + bijlagen

192. GÖKSEL Asuman, Domestic Change in Turkey: An Analysis of the Extent and Direction of Turkish Social Policy Adaptation to the Pressures of European Integration in the 2000s. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2011, 429 blz. + bijlagen

193. HAPPAERTS Sander, Sustainable development between international and domestic forces. A comparative analysis of subnational policies. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], K.U.Leuven, 2011, 334 blz. + bijlagen

194. VANHOUTTE Bram, Social Capital and Well-Being in Belgium (Flanders). Identifying the Role of Networks and Context. Onderzoekseenheid: Centrum voor Politicologie [CePO], K.U.Leuven, 2011, 165 blz. + bijlagen

195. VANHEE Dieter, Bevoegdheidsoverdrachten in België: een analyse van de vijfde staatshervorming van 2001. Onderzoekseenheid: Instituut voor de Overheid [IO], K.U.Leuven, 2011, 269 blz. + bijlagen

196. DE VUYSERE Wilfried, Neither War nor Peace. Civil-Military Cooperation in Complex Peace Operations. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2012, 594 blz. + bijlagen

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197. TOUQUET Heleen, Escaping ethnopolis: postethnic mobilization in Bosnia- Herzegovina. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2012, 301 blz. + bijlagen

198. ABTS Koenraad, Maatschappelijk onbehagen en etnopopulisme. Burgers, ressentiment, vreemdelingen, politiek en extreem rechts. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2012, 1066 blz. + bijlagen

199. VAN DEN BRANDE Karoline, Multi-Level Interactions for Sustainable Development. The Involvement of Flanders in Global and European Decision-Making. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2012, 427 blz. + bijlagen

200. VANDELANOITTE Pascal, Het spectrum van het verleden. Een visie op de geschiedenis in vier Europese arthousefilms (1965-1975). Onderzoekseenheid: Centrum voor Mediacultuur en Communicatietechnologie [CMC], KU Leuven, 2012, 341 blz. + bijlagen

201. JUSTAERT Arnout, The European Union in the Congolese Police Reform: Governance, Coordination and Alignment?. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2012, 247 blz. + bijlagen

202. LECHKAR Iman, Striving and Stumbling in the Name of Allah. Neo-Sunnis and Neo-Shi‘ites in a Belgian Context. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2012, 233 blz. + bijlagen203. CHOI Priscilla, How do Muslims convert to Evangelical Christianity? Case studies of Moroccans and Iranians in multicultural Brussels. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2012, 224 blz. + bijlagen

204. BIRCAN Tuba, Community Structure and Ethnocentrism. A Multilevel Approach: A case Study of Flanders (Belgium). Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2012, 221 blz. + bijlagen

205. DESSERS Ezra, Spatial Data Infrastructures at work. A comparative case study on the spatial enablement of public sector processes. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2012, 314 blz. + bijlagen

206. PLASQUY Eddy, La Romería del Rocío: van een lokale celebratie naar een celebratie van lokaliteit. Transformaties en betekenisverschuivingen van een lokale collectieve bedevaart in Andalusië. Onderzoekseenheid:

Institute for Anthropological Research in Africa [IARA], KU Leuven, 2012, 305 blz. + bijlagen

207. BLECKMANN Laura E., Colonial Trajectories and Moving Memories: Performing Past and Identity in Southern Kaoko (Namibia). Onderzoekseenheid: Institute for Anthropological Research in Africa [IARA], KU Leuven, 2012, 394 blz. + bijlagen

208. VAN CRAEN Maarten, The impact of social-cultural integration on ethnic minority group members’ attitudes towards society. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2012, 248 blz. + bijlagen

209. CHANG Pei-Fei, The European Union in the Congolese Police Reform: Governance, Coordination and Alignment?. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2012, 403 blz. + bijlagen

210. VAN DAMME Jan, Interactief beleid. Een analyse van organisatie en resultaten van interactieve planning in twee Vlaamse ‘hot spots’. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2012, 256 blz. + bijlagen

211. KEUNEN Gert, Alternatieve mainstream: een cultuursociologisch onderzoek naar selectielogica’s in het Vlaamse popmuziekcircuit. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2012, 292 blz. + bijlagen

212. FUNK DECKARD Julianne, ‘Invisible’ Believers for Peace: Religion and Peacebuilding in Postwar Bosnia-Herzegovina. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2012, 210 blz. + bijlagen

213. YILDIRIM Esma, The Triple Challenge: Becoming a Citizen and a Female Pious Muslim. Turkish Muslims and Faith Based Organizations at Work in Belgium.. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2012, 322 blz. + bijlagen

214. ROMMEL Jan, Organisation and Management of Regulation. Autonomy and Coordination in a Multi-Actor Setting. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2012, 235 blz. + bijlagen

215. TROUPIN Steve, Professionalizing Public Administration(s)? The Cases of Performance Audit in Canada and the Netherlands. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2012, 528 blz. + bijlagen

216. GEENEN Kristien, The pursuit of pleasure in a war-weary city, Butembo,

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North Kivu, DRC. Onderzoekseenheid: Institute for Anthropological Research in Africa [IARA], KU Leuven, 2012, 262 blz. + bijlagen

217. DEMUZERE Sara, Verklarende factoren van de implementatie van kwaliteitsmanagementtechnieken. Een studie binnen de Vlaamse overheid. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2012, 222 blz. + bijlagen

218. EL SGHIAR Hatim, Identificatie, mediagebruik en televisienieuws. Exploratief onderzoek bij gezinnen met Marokkaanse en Turkse voorouders in Vlaanderen. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2012, 418 blz. + bijlagen

219. WEETS Katrien, Van decreet tot praktijk? Een onderzoek naar de invoering van elementen van prestatiebegroting in Vlaamse gemeenten. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2012, 343 blz. + bijlagenbundel

220. MAES Guido, Verborgen krachten in de organisatie: een politiek model van organisatieverandering. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2012, 304 blz. + bijlagen

221. VANDEN ABEELE Mariek (Maria), Me, Myself and my Mobile: Status, Identity and Belongingness in the Mobile Youth Culture. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2012, 242 blz. + bijlagen

222. RAMIOUL Monique, The map is not the territory: the role of knowledge in spatial restructuring processes. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2012, 210 blz. + bijlagen

223. CUSTERS Kathleen, Television and the cultivation of fear of crime: Unravelling the black box. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2012, 216 blz. + bijlagen

224. PEELS Rafael, Facing the paradigm of non-state actor involvement: the EU-Andean region negotiation process. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2012, 239 blz. + bijlagen

225. DIRIKX Astrid, Good Cop - Bad Cop, Fair Cop - Dirty Cop. Het verband tussen mediagebruik en de houding van jongeren ten aanzien van de politie. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2012, 408 blz. + bijlagen

226. VANLANGENAKKER Ine, Uitstroom in het regionale parlement en het leven na het mandaat. Een verkennend onderzoek in Catalonië, Saksen, Schotland, Vlaanderen en Wallonië. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2012, 255 blz. + bijlagen

227. ZHAO Li, New Co-operative Development in China: An Institutional Approach. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2012, 256 blz. + bijlagen

228. LAMOTE Frederik, Small City, Global Scopes: An Ethnography of Urban Change in Techiman, Ghana. Onderzoekseenheid: Institute for Anthropological Research in Africa [IARA], KU Leuven, 2012, 261 blz. + bijlagen

229. SEYREK Demir Murat, Role of the NGOs in the Integration of Turkey to the European Union. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2012, 313 blz. + bijlagen

230. VANDEZANDE Mattijs, Born to die. Death clustering and the intergenerational transmission of infant mortality, the Antwerp district, 1846-1905. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2012, 179 blz. + bijlagen

231. KUHK Annette, Means for Change in Urban Policies - Application of the Advocacy Coalition Framework (ACF) to analyse Policy Change and Learning in the field of Urban Policies in Brussels and particularly in the subset of the European Quarter. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2013, 282 blz. + bijlagen

232. VERLEDEN Frederik, De ‘vertegenwoordigers van de Natie’ in partijdienst. De verhouding tussen de Belgische politieke partijen en hun parlementsleden (1918-1970). Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2013, 377 blz. + bijlagen

233. DELBEKE Karlien, Analyzing ‘Organizational justice’. An explorative study on the specification and differentiation of concepts in the social sciences. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2013, 274 blz. + bijlagen

234. PLATTEAU Eva, Generations in organizations. Ageing workforce and personnel policy as context for intergenerational conflict in local government. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2013, 322 blz. + bijlagen

235. DE JONG Sijbren, The EU’s External Natural Gas Policy – Caught Between

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National Priorities and Supranationalism. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2013, 234 blz. + bijlagen

236. YANASMAYAN Zeynep, Turkey entangled with Europe? A qualitative exploration of mobility and citizenship accounts of highly educated migrants from Turkey. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2013, 346 blz. + bijlagen

237. GOURDIN Gregory, De evolutie van de verhouding tussen ziekenhuisartsen en ziekenhuismanagement in België sinds de Besluitwet van 28 december 1944. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2013, 271 blz. + bijlagen

238. VANNIEUWENHUYZE Jorre, Mixed-mode Data Collection: Basic Concepts and Analysis of Mode Effects. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2013, 214 blz. + bijlagen

239. RENDERS Frank, Ruimte maken voor het andere: Auto-etnografische verhalen en zelfreflecties over het leven in een Vlaamse instelling voor personen met een verstandelijke handicap. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2013, 248 blz. + bijlagen

240. VANCAUWENBERGHE Glenn, Coördinatie binnen de Geografische Data Infrastructuur: Een analyse van de uitwisseling en het gebruik van geografische informatie in Vlaanderen.. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2013, 236 blz. + bijlagen

241. HENDRIKS Thomas, Work in the Rainforest: Labour, Race and Desire in a Congolese Logging Camp. Onderzoekseenheid: Institute for Anthropological Research in Africa [IARA], KU Leuven, 2013, 351 blz. + bijlagen

242. BERGHMAN Michaël, Context with a capital C. On the symbolic contextualization of artistic artefacts. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2013, 313 blz. + bijlagen

243. IKIZER Ihsan, Social Inclusion and Local Authorities. Analysing the Implementation of EU Social Inclusion Principles by Local Authorities in Europe. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2013, 301 blz. + bijlagen

244. GILLEIR Christien, Combineren in je eentje. Arbeid en gezin bij werkende alleenstaande ouders in Vlaanderen. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2013, 250 blz. + bijlagen

245. BEULLENS Koen, The use of paradata to assess survey representativity. Cracks in the nonresponse paradigm. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2013, 216 blz. + bijlagen

246. VANDENBOSCH Laura, Self-objectification and sexual effects of the media: an exploratory study in adolescence. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2013, 238 blz. + bijlagen

247. RIBBENS Wannes, In search of the player. Perceived game realism and playing styles in digital game effects. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2013, 346 blz. + bijlagen

248. ROOS Hannelore, Ruimte maken voor het andere: Auto-etnografische verhalen en zelfreflecties over het leven in een Vlaamse instelling voor personen met een verstandelijke handicap. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2013, 349 blz. + bijlagen

249. VANASSCHE Sofie, Stepfamily configurations and trajectories following parental divorce: A quantitative study on stepfamily situations, stepfamily relationships and the wellbeing of children. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2013, 274 blz. + bijlagen

250. SODERMANS An Katrien, Parenting apart together. Studies on joint physical custody arrangements in Flanders. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2013, 224 blz. + bijlagen

251. LAPPIN Richard, Post-Conflict Democracy Assistance: An Exploration of the Capabilities-Expectations Gap in Liberia, 1996-2001 & 2003-2008. Onderzoekseenheid: Instituut voor Internationaal en Europees Beleid [IIEB], KU Leuven, 2013, 348 blz. + bijlagen

252. VAN LOO Sofie, Artistieke verbeelding en inpassing in de kunstwereld in het begin van de 21e eeuw. Taboe, neutralisatie en realisatie. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2013, 399 blz. + bijlagen

253. GEERAERT Arnout, A Principal-Agent perspective on good governance in international sports. The European Union as ex-post control mechanism. Onderzoekseenheid: Leuven International and European Studies [LINES], KU Leuven, 2013, 190 blz. + bijlagen

254. VANDEKERKHOF Renaat, Van discours tot counterdiscours: een

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thematisch-stilistische analyse van vier Britse working-class films (1995- 2000). Trainspotting (1996), Brassed Off (1996), The Full Monty (1997), Billy Elliot (2000). Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2014, 353 blz. + bijlagen

255. MARIANO Esmeralda, Understanding experiences of reproductive inability in various medical systems in Southern Mozambique. Onderzoekseenheid: Institute for Anthropological Research in Africa [IARA], KU Leuven, 2014, 247 blz. + bijlagen

256. PATTYN Valérie, Policy evaluation (in)activity unravelled. A configurational analysis of the incidence, number, locus and quality of policy evaluations in the Flemish public sector. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2014, 320 blz. + bijlagen

257. WYNEN Jan, Comparing and explaining the effects of organizational autonomy in the public sector. Onderzoekseenheden: Instituut voor de Overheid [IO], KU Leuven / Management & Bestuur, Universiteit Antwerpen, 2014, 272 blz. + bijlagen

258. COVRE SUSSAI SOARES Maira, Cohabitation in Latin America: a comparative perspective. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2014, 242 blz. + bijlagen

259. ADRIAENSEN Johan, Politics without Principals: National Trade Administrations and EU Trade Policy. Onderzoekseenheid: Leuven International and European Studies [LINES], KU Leuven, 2014, 185 blz. + bijlagen

260. BEKALU Mesfin A., Communication inequality, urbanity versus rurality and HIV/AIDS cognitive and affective outcomes: an exploratory study. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2014, 134 blz. + bijlagen

261. DE SPIEGELAERE Stan, The Employment Relationship and Innovative Work Behaviour. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2014, 186 blz. + bijlagen

262. VERCRUYSSE TOM, The Dark Ages Imaginary in European Films. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2014, 333 blz. + bijlagen

263. DOMECKA Markieta, Maneuvering between Opportunities and Constraints Polish Business People in the Time of Transformation. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2014, 305 blz. +

bijlagen264. OFEK Yuval, The Missing Linkage: Building Effective Governance for Joint and Network Evaluation. Onderzoekseenheden: Instituut voor de Overheid [IO], KU Leuven, 2014, 463 blz. + bijlagen

265. HEYLEN Kristof, Housing affordability and the effect of housing subsidies. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2014, 138 blz. + bijlagen

266. VANDEWIELE Wim, Contemplatieve abdijgemeenschappen in de 21ste eeuw. Een etnografische studie naar het hedendaagse contemplatieve gemeenschapsleven. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2014, 219 blz. + bijlagen

267. BOTTERMAN Sarah, An empirical multilevel study of the relation between community level social cohesion indicators and individual social capital in Flanders, Belgium. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2015, 190 blz. + bijlagen

268. BELIS David, The Socialization Potential of the Clean Development Mechanism in EU-China and EU-Vietnam Climate Relations. Onderzoekseenheid: Leuven International and European Studies [LINES], KU Leuven,, 2015, 119 blz. + bijlagen269. ROMMENS Thijs, Structuring opportunities for NGOs? The European Union’s promotion of democratic governance in Georgia. Onderzoekseenheid: Leuven International and European Studies [LINES], KU Leuven, 2015, 296 blz. + bijlagen

270. VAN DE PEER Aurélie, Geknipt voor het moderne: beoordelingscriteria, tijdspolitiek en materialiteit in geschreven modejournalistiek. Vakgroep Wijsbegeerte en Moraalwetenschap, Universiteit Gent / Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2015, 303 blz. + bijlagen271. DAN Sorin, Governed or self-governed? The challenge of coordination in European public hospital systems. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2015, 243 blz. + bijlagen

272. PEUMANS Wim, Unlocking the closet - Same-sex desire among Muslim men and women in Belgium. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2015, 225 blz. + bijlagen

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273. DASSONNEVILLE Ruth, Stability and Change in Voting Behaviour. Macro and Micro Determinants of Electoral Volatility. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2015, 307 blz. + bijlagen

274. VAN CAUWENBERGE Anna, The quest for young eyes. Aandacht voor nieuws bij jonge mensen in de Lage Landen. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven / Faculteit der Sociale Wetenschappen, Radboud Universiteit Nijmegen, NL, 2015, 167 blz. + bijlagen

275. O’DUBHGHAILL Sean, How are the Irish European? An anthropological examination of belonging among the Irish in Belgium. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2015, 290 blz. + bijlagen

276. VERPOORTEN Rika, The packaging puzzle. An Investigation into the Income and Care Packages of the Belgian Eldery Population. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2015, 320 blz. + bijlagen

277. DEKOCKER Vickie, The sub-national level and the transfer of employment policies and practices in multinationals: Case study evidence from Belgium. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2015, 222 blz. + bijlagen

278. GARIBA Joshua Awienagua, Land Struggle, Power and The Challenges of Belonging. The Evolution and Dynamics of the Nkonya-Alavanyo Land Dispute in Ghana. Onderzoekseenheid: Institute for Anthropological Research in Africa [IARA], KU Leuven, 2015, 227 blz. + bijlagen

279. DE FRANCESCHI Fabio, The flexibility and security nexus in Multinational Companies in the context of Global Value Chains. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2015, 251 blz. + bijlagen

280. VERHAEGEN Soetkin, The development of European identity. A study of the individual-level development processes. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2015, 217 blz. + bijlagen

281. HAMUNGOLE Moses, Television and the cultivation of personal values among Catholics in Zambia. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2015, 231 blz. + bijlagen

282. BEYENS Ine, Understanding young children’s television exposure: An investigation into the role of structural family circumstances. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2015, 204 blz. + bijlagen

283. ALANYA Ahu, Pervasive discrimination: Perspectives from the children of Muslim immigrants in Europe. A cross-national and cross-contextual analysis. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2015, 164 blz. + bijlagen

284. DINH THI Ngoc Bich, Public Private Partnership in Practice: Contributing to Social Conflict Resolution in Involuntary Resettlement in Vietnam. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2015, 325 blz. + bijlagen

285. PUT Gert-Jan, All politics is local: The geographical dimension of candidate selection. The case of Belgium (1987-2010). Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2015, 211 blz. + bijlagen

286. PUSCHMANN Paul, Social Inclusion and Exclusion of Urban In-Migrants in Northwestern European Port Cities; Antwerp, Rotterdam & Stockholm ca. 1850-1930. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2015, 282 blz. + bijlagen

287. COLOM BICKFORD Alejandra, Conversion to Conservation: Beliefs and practices of the conservation community in the Congo Basin (1960-present). Onderzoekseenheid: Instituut voor Antropologie in Afrika [IARA], KU Leuven, 2016, 229 blz. + bijlagen288. VAN CAUTER Lies, Government-to-government information system failure in Flanders: an in-depth study. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2016, 285 blz. + bijlagen

289. OOMSELS Peter, Administrational Trust: An empirical examination of interorganisational trust and distrust in the Flemish administration. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2016, 321 blz. + bijlagen

290. VANDONINCK Sofie, Dealing with online risks: how to develop adequate coping strategies and preventive measures with a focus on vulnerable children. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU , 2016, 201 blz. + bijlagen

291. SCHROOTEN Mieke, Crossing borders: The lived experiences of Brazilians on the move. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2016, 187 blz. + bijlagen

292. PEETERS Hans, The devil is in the detail. Delving into Belgian pension adequacy. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2015, 233 blz. + bijlagen

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293. BUTTIENS Dorien, Talentmanagement in de Vlaamse overheid, Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2016, 433 blz. + bijlagen

294. DÖRFLINGER Nadja, Different worlds of work? A study on labour market regulatory institutions and contingent work in Belgium and Germany. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2016, 179 blz. + bijlagen

295. MOLENVELD Astrid, Organizational adaptation to cross-cutting policy objectives. Onderzoekseenheden: Instituut voor de Overheid [IO], KU Leuven / Management & Bestuur, Universiteit Antwerpen, 2016, 190 blz. + bijlagen

296. OP DE BEECK Sophie, HRM responsibilities in the public sector: The role of line managers. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2016, 406 blz. + bijlagen

297. BOONEN Joris, Political learning in adolescence: the development of party preferences in a multiparty setting. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2016, 240 blz. + bijlagen

298. SCHEEPERS Sarah, Een kritische discoursanalyse van de concepten gelijkheid en diversiteit in de Vlaamse overheid. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2016, 277 blz. + bijlagen

299. VAN AKEN Silvia, The labyrinth of the mind. Een narratieve-stilistische analyse van Jaco Van Dormaels ‘mindfilms’: Toto le héros (1991), Le huitième jour (1996), Mr. Nobody (2009). Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2016, 254 blz. + bijlagen

300. KERSSCHOT Margaux, Lost in Aggregation: Domestic public and private economic actors in EU Trade Negotiations. Onderzoekseenheden: Instituut voor de Overheid [IO], KU Leuven / Management & Bestuur, Universiteit Antwerpen, 2016, 154 blz. + bijlagen

301. TRIMARCHI Alessandra, Individual and couple level perspectives on male education and fertility in Europe at the start of the 21st century. Onderzoekseenheden: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven / Dipartimento di Scienze Statistiche, Università di Roma “La Sapienza” (IT), 2016, 205 blz. + bijlagen

302. FRISON Eline, How Facebook makes teens (un)happy: Understanding the relationships between Facebook use and adolescents’ well-being. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2016, 211 blz. + bijlagen

303. NÚÑEZ-BORJA LUNA Carmen Alicia, Andean transnational migration in Belgium: decolonial attitudes at the heart of Europe. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2016, 274 blz. + bijlagen

304. BRAEYE Sarah, Family strategies for education: The Chinese in Flanders. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2016, 392 blz. + bijlagen

305. JORIS Willem, De Eurocrisis in het Nieuws. Een frameanalyse van de verslaggeving in Europese kranten en een effectenstudie van metaforische frames. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2016, 260 blz. + bijlagen

306. TAN Evrim, Understanding the relationship between capacity and decentralisation in local governance: A case study on local administrations in Turkey. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2016, 265 blz. + bijlagen

307. NILSSON Jessika, ‘What is new about what has always been’: Communication technologies and the meaning-making of Maasai mobilities in Ngorongoro. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2016, 307 blz. + bijlagen

308. VAN PARYS Liesbeth, On the street-level implementation of ambiguous activation policy. How caseworkers reconcile responsibility and autonomy and affect their clients’ motivation. Onderzoekseenheid: Arbeidsmarkt [HIVA] / Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2016, 366 blz. + bijlagen

309. BUMBA Guillaume Kamudiongo, Danser au rythme des jeunes en République Démocratique du Congo: les Bana Luna en tant qu’agents de transformation. Onderzoekseenheid: Instituut voor Antropologie in Afrika [IARA], KU Leuven, 2016, 299 blz. + bijlagen

310. VAN DEN BROECK Jan, Uncertainty and the future city: The impact of neoliberal urban planning on everyday life in the city of Nairobi. Onderzoekseenheid: Instituut voor Antropologie in Afrika [IARA], KU Leuven, 2016, 339 blz. + bijlagen

311. VANNOPPEN Geertrui, Fuelling the future with concrete, paper and discourse: competing claims in the making of an oil city, Sekondi-Takoradi, Ghana. Onderzoekseenheid: Instituut voor Antropologie in Afrika [IARA], KU Leuven, 2016, 276 blz. + bijlagen

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312. KERN Anna, Causes and Consequences of Political Participation in Times of Rapid Social Change in Europe: A re-assessment of classical theories on political participation. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2016, 213 blz. + bijlagen

313. ABADI David R., Negotiating Group Identities in a Multicultural Society. Case: The Role of Mainstream Media, Discourse Relations and Political Alliances in Germany. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2017, 336 blz. + bijlagen

314. BERBERS Anna, Outside in and inside out: Media portrayal, reception and identification of Moroccan minorities in the Low Countries. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2017, 205 blz. + bijlagen

315. DICKMEIS Anne, Evaluating Some Hypothesized Cultural and Evolutionary Functions of Music: A Study of Young Children. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2017, 159 blz. + bijlagen

316. MEEUSEN Cecil, The structure of (generalized) prejudice: The relation between contextual factors and different forms of prejudice. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2017, 253 blz. + bijlagen

317. ROZANSKA Julia, The Polish EU Officials in Brussels: Living on Europlanet? Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2017, 445 blz. + bijlagen

318. DERBOVEN Jan, Beyond Designers’ Intensions. A Semiotic Exploration of Technology Interpretation and Appropriation. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2017, 257 blz. + bijlagen

319. BOESMAN Jan, Making news when it has already been broken: A production perspective on the framing practices of newspaper journalists in the Low Countries. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2017, 252 blz. + bijlagen

320. vAN dER LINDEN Meta, Context, intergroup threats and contact as determinants of prejudice toward immigrants. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2017, 229 blz. + bijlagen

321. NGALA NTUMBA Peter, Décentralisation congolaise et participation citoyenne: étude portant sur un dispositif participatif de la société civile à la gouvernance territoriale. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2017, 261 blz. + bijlagen

322. JACOBS Laura, The role of immigration news as a contextual-level factor for anti-immigrant attitudes: The effects of tone and threat frames. Onderzoekseenheid: Centrum voor Politicologie [CePO], KU Leuven, 2017, 242 blz. + bijlagen

323. REYKERS Yf, Delegation without control? Institutional choice and autonomy in UNSC-authorised military interventions. Onderzoekseenheid: Leuven International and European Studies [LINES], KU Leuven, 2017, 203 blz. + bijlagen

324. VANGEEL Jolien, Explaining adolescents’ media use and differential susceptibility to the association between media use and risk behavior: a reinforcement sensitivity perspective. Onderzoekseenheid: School voor Massacommunicatieresearch [SMC], KU Leuven, 2017, 167 blz. + bijlagen

325. DE WITTE Jasper, Elektronische cliëntenregistratie in de jeugdhulp: tussen droom en werkelijkheid. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2017, 292 blz. + bijlagen

326. GROENINCK Mieke, ‘Reforming the Self, Unveiling the World. Islamic Religious Knowledge Transmission for Women in Brussels’ Mosques and Institutes from a Moroccan Background. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2017, 263 blz. + bijlagen

327. KEULEERS Floor, European Union and Chinese Strategic Narratives towards Africa: A Mixed Methods Study of Reception by African Audiences. Onderzoekseenheid: Leuven International and European Studies [LINES], KU Leuven, 2017, 160 blz. + bijlagen

328. DE COSTER Jori, Dis/ability as an Emerging Global Identity: Im/ material Entanglements of Congolese People in Kinshasa and the Diaspora. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2017, 301 blz. + bijlagen

329. COENEN Lennert, Questioning our Questions: A levels-of-analysis- perspective on meaning and measurement in cultivation research. Onderzoekseenheid: School voor Massacommunicatieresearch [SMCR], KU Leuven, 2017, 175 blz. + bijlagen

330. TIMMERMANS Elisabeth, Is Dating Dated in Times of Tinder? Exploring the Mediatization of Casual Sexual Intimacy. Onderzoekseenheid: School voor Massacommunicatieresearch [SMCR], KU Leuven, 2017, 188 blz. + bijlagen

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331. VAN ACKER Wouter, Sustainable Public Sector Innovations: How do feedback, accountability and learning matter? Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2017, 240 blz. + bijlagen

332. BELS Annebeth, Objecting to sex? Sexualisation, objectification and media in preteens’ identity work. Onderzoeks-eenheden: School voor Massacommunicatieresearch [SMCR], KU Leuven / Departement Communicatiewetenschappen, Universiteit Antwerpen, 2017, 181 blz. + bijlagen

333. DEBELA Bacha Kedebe, Managing Performance in Ethiopian Municipalities: A Benchlearning Approach of Urban Water Services in Oromia National Regional State. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2017, 253 blz. + bijlagen

334. RIBBERINK Egbert, “There is probably no God” A quantitative study of anti-religiosity in Western Europe. Onderzoekseenheid: Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2017, 104 blz. + bijlagen

335. CALLENS Marloes, The interorganisational trust process in the Flemish judicial youth care chain: Perceived trustworthiness, its inputs, and willingness to exchange information. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2017, 205 blz. + bijlagen

336. HAVERMANS Nele, Family Transitions, Family Configurations and the Educational Outcomes of Flemish children. Onderzoekseenheid: Arbeidsmarkt [HIVA] / Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2017, 192 blz. + bijlagen

337. DEMAREST Leila, European Scarcity and Social Disorder in Africa: A Critical Analysis. Onderzoekseenheid: Leuvense Internationale en Europese Studies / Centrum voor Vredesonderzoek en Ontwikkeling [LINES/CVO], KU Leuven, 2017, 188 blz. + bijlagen

338. METHO NKAYILU Eric, Réseaux sociaux des femmes vivant avec handicap à Kinshasa: espaces d’intégration sociale et d’éducation non formelle. Onderzoeksheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven / Université de Kinshasa [UNIKIN, DRC], 2017, 295 blz. + bijlagen

339. ROUSSEAU Ann, The role of media in preadolescents’ self- sexualization: A bioecological perspectivework. Onderzoeks-eenheden: School voor Massacommunicatieresearch [SMCR], KU Leuven / Departement Communicatiewetenschappen, Universiteit Antwerpen, 2017, 234 blz. + bijlagen

340. VERBRUGGE Hannelore, Scratching the surface. Exploring women’s roles in artisanal and small-scale gold mining towns in Tanzania. Onderzoekseenheid: Instituut voor Antropologie in Afrika [IARA], KU Leuven, 2017, 256 blz. + bijlagen

341. CONINX Ingrid, Hoe de implementatiekloof te dichten? Een analyse voor perspectieven in het overstromingsbeleid. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2017, 261 blz. + bijlagen

342. BACHUS Kris, The use of environmental taxation as a regulatory policy instrument. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2017, 155 blz. + bijlagen

343. VANDENBERGHE Hanne, Diversiteit in de Vlaamse nieuwsmedia: een longitudinale en mediavergelijkende kijk. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2017, 237 blz. + bijlagen

344. GOUGLAS Athanassios, Determinants of Parliamentary Turnover in Western Europe 1945-2015. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2017, 170 blz. + bijlagen

345. EBIEDE Tarila Marclint, Reintegrating Ex-Militants, Dividing Communities: The Post Amnesty Programme and Elusive Quest for Peace in Nigeria’s Niger Delta. Onderzoekseenheid: Leuvense Internationale en Europese Studies / Centrum voor Vredesonderzoek en Ontwikkeling [LINES/CVO], KU Leuven, 2018, 172 blz. + bijlagen

346. MITIKU Adare Assefa, The Ethiopian Public Sector Leadership Profile Unveiled: Determining the Leadership Profile of the Ethiopian Federal Civil Service Organizations. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2018, 286 blz. + bijlagen

347. VANSCHOENWINKEL Jolien, Vertrouwen in de Belgische strafrechtsketen - Een kwalitatief empirisch onderzoek naar de vertrouwensrelatie tussen de lokale recherche, de federale recherche, het parket en de onderzoeksrechters. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2018, 321 blz. + bijlagen

348. SMULDERS Jef, The spending levels and spending behavior of political parties: A comparative analysis of the annual financial statements of political parties in Europe. Onderzoekseenheid: Instituut voor de Overheid [IO], KU Leuven, 2018, 160 blz. + bijlagen

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349. BELET Margot, Education and sociocultural identification: Facilitating learning effects through congruence. Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven], KU Leuven, 2018, 118 blz. + bijlagen

350. BAUTE Sharon, Public attitudes towards Social Europe: at the crossroads of European integration and the welfare state. Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven], KU Leuven, 2018, 156 blz. + bijlagen

351. KAYIKCI Merve Reyhan, Committing to Society, Committing to God: The Relational Experience of Piety among the Muslim Female Volunteers in Belgium. Onderzoekseenheid: Interculturalism, Migration and Minorities Research Centre [IMMRC], KU Leuven, 2018, 243 blz. + bijlagen

352. STEENS Roos, Behind the frontstage. The development of an empowering academic collaborative centre. Onderzoekseenheid: Arbeidsmarkt [HIVA] / Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2018, 168 blz. + bijlagen

353. MAKUNDI Hezron, South-South cooperation between theory and practice: Assessing the role of China on building the technological capacity in Tanzania. Onderzoekseenheid: Arbeidsmarkt [HIVA] / Leuven International and European Studies [LINES], KU Leuven, 2018, 120 blz. + bijlagen

354. CALLENS Marie-Sophie, Attitudes toward integration and perceived ethnic threat; a case-study of Luxembourg and cross-cultural comparisons within and outside of Europe. Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven], KU Leuven, 2018, 245 blz. + bijlagen

355. PUT Bart, Niklas Luhmann over liefde en intimiteit: positionering, problemen en perspectieven. Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven], KU Leuven, 2018, 273 blz. + bijlagen

356. VERMEERBERGEN Lander, Mountains of care: Organisational redesign and quality of working life in nursing homes. Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven], KU Leuven, 2018, 216 blz. + bijlagen

357. IMANI GIGLOU Roya, Offline and Online Communication and Participation Among the European Turkish Diaspora during the Gezi Park Protests: A Multi-Method Approach. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2018, 195 blz + bijlagen

358. TREKELS Jolien, The ubiquity of beauty-is-good in media: Understanding the importance of appearance in adolescents’ lives. Onderzoekseenheid: School voor Massacommunicatieresearch [SMCR], KU Leuven, 2018, 193 blz + bijlagen

359. BOOGAERTS Andreas, Spring as a new beginning? An investigation into the European Union’s sanctions practice following the Arab spring. Onderzoekseenheid: Leuvense Internationale en Europese Studies [LINES], KU Leuven, 2018, 295 blz. + bijlagen

360. EXELMANS Liese, “Are you still watching?” Observing and Explaining the Relationship between Electronic Media Use and Sleep. Onderzoekseenheid: School voor Massacommunicatieresearch [SMCR], KU Leuven, 2018, 217 blz. + bijlagen

361. SMEETS Niels, The Green Challenge: Exploring Explanations of Russia’s Renewable Energy Policies. Onderzoekseenheid: Leuvense Internationale en Europese Studies [LINES], KU Leuven, 2018, 284 blz + bijlagen

362. NELISSEN Sara, The Child Effect in Media Use: Investigating Family Dynamics Concerning Media Behavior in Parent-Child Dyads. Onderzoekseenheid: School voor Massacommunicatieresearch [SMCR], KU Leuven, 2018, 191 blz + bijlagen

363. NWAIGWE Stanislaus, Cutting Sustenance from the Margins of Oil Extraction: Igbo’s Creative Engagement with Distribution and Privatization of Oil Wealth in the Niger Delta. Onderzoekseenheid: Instituut voor Antropologie in Afrika [IARA], KU Leuven, 2018, 192 blz + bijlagen

364. MEYERS Gert, Behaviour-based Personalisation in Health Insurance: a Sociology of a not-yet Market. Centrum voor Sociologisch Onderzoek [CeSO], KU Leuven, 2018, 214 blz. + bijlagen

365. DE WAELE Aurélie, The organizational voice: The role of vocal cues in times of crisis. Onderzoekseenheid: Instituut voor Mediastudies [IMS], KU Leuven, 2018, 206 blz + bijlagen

366. KUPPENS Line, The role of education in peace building: an analysis of teachers’ views and practices with regards to peace and conflict in Côte d’Ivoire and Kenya. Onderzoekseenheid: Leuvense Internationale en Europese Studies / Centrum voor Vredesonderzoek en Ontwikkeling [LINES/CVO], KU Leuven en Instituut voor Ontwikkelingsbeleid en –beheer, Universiteit Antwerpen, 2018, 244 blz. + bijlagen

367. GEUSENS Femke, #DrinksWithFriends - The Underlying Processes and Conditionality of Alcohol-Related Social Media Effects. Onderzoekseenheid: Onderzoekseenheid: School voor Massacommunicatieresearch [SMCR], KU Leuven, 2018, 223 blz + bijlagen

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