limitations of roma health in slovakia · andrej belák 3 foreword according to the who...

Health-system limitations of Roma health in Slovakia A qualitative study

ANDREJ BELÁK

Health-system limitations of Roma health in Slovakia: A qualitative study

Publication details

Author: Andrej Belák, MSc.

ISBN: 978-80-971475-2-5

Consultants: Chris Brown, PhD. Tereza Stöckelová, PhD.

Reviewers: Tomáš Hrustič, PhD. Doc. Andrea Madarasová Gecková, PhD. Language proof: David L. McLean

Design and Layout: René Říha

Photo: ©CandyBox-Images/Fotky&Foto, René Říha

Press: EQUILIBRIA, s.r.o., Košice

For circulation please contact PaedDr. Marek Kmeť – EDUCON [email protected]

Andrej Belák 1

AcknowledgmentsThis work was supported by the WHO Country Office in Slovakia; Charles University in Prague, Faculty of Humanities; the Slovak Research and Development Agency under the contract no. APVV-0032-11; and the Agency of the Slovak Ministry of Edu-cation for the Structural Funds of the EU under project ITMS: 26220120058 (30%).

The author would like to cordially thank all anonymous health-system employees, clients and owners who participated in the study. Should anything below help any-one in any way, it is mainly due to the study consultants’ brave willingness to share personal space and experiences with a complete stranger. Hopefully, they will be able to forgive eventual unfortunate misinterpretations, given that there were no intentional ones and given that this report might present the initial input for a bro-ader and welcoming discussion of their everyday issues. In addition, Dr. Darina Sed-láková from the WHO Country Office in Bratislava and Dr. Andrea Madarasová Gec-ková from P. J. Šafárik University in Košice need to be thanked in person for taking on board a socio-cultural anthropologist.

AcronymsACEC Association for Culture Education and Communication

CSDH WHO Commission on Social Determinants of Health

SES Socioeconomic Status

WHO World Health Organization

Health-system limitations of Roma health in Slovakia: A qualitative study2

Table of contentsAcknowledgments ............................................................................................. 1

Acronyms ........................................................................................................... 1

Foreword ........................................................................................................... 3

Summary ........................................................................................................... 5

Introduction ...................................................................................................... 7

Part 1. Design .................................................................................................... 13

Basic specifications ........................................................................................... 15

Limitations ........................................................................................................ 17

Advantages ....................................................................................................... 18

Part 2. Findings ................................................................................................. 19

Types of limitations experienced ...................................................................... 21

Sources of limitations experienced ................................................................... 32

Part 3. Recommendations ................................................................................. 41

General strategy proposed for application of the findings ............................... 43

Overreaching dilemmas for consideration with respect to Roma health ......... 44

References ........................................................................................................ 49

Zhrnutie ............................................................................................................ 53

Andrej Belák 3

Foreword According to the WHO Constitution, the enjoyment of the highest attainable stan-dard of health is one of the basic rights of every human being regardless of race, religion, political beliefs or economic and social condition. This does not mean the right to be healthy, nor does it mean that poor governments must put in place expensive health services for which they have no resources. It does require govern-ments and public authorities to put in place policies and action plans which will lead to available and accessible health care for all in the shortest possible time. The right to health in all its forms and at all levels contains five interrelated and essential elements: availability, accessibility, affordability, acceptability and quality. States are under the obligation to respect the right to health and they should refrain from limiting any of the five elements. And yet it seems that in many countries, including Slovakia, there are problems regarding the right to health as described above. This leads to health disparities and a health divide between countries but also has impli-cations on the in-country situation.

Slovakia has one of the largest Roma minorities in Europe, estimated to be nearly a half-million people. Despite the universal knowledge that the health condition of Roma is lagging behind in practically all parameters compared with the majority population, only scarce evidence-based work proving this was available in the past. And it was only recently that researchers started to be interested in the “causes of causes” of this situation. In this publication, the author and his colleagues assess and analyse the limitations in the Slovak health system to respond to needs and expectations for improving the health status of Roma – individuals, families and com-munities – how it defends them against health threats or provides access to people--centred care, with a specific focus on primary and specialised outpatient care. The interviewed health care professionals, mostly physicians, provided a lot of informa-tion, experience and attitudes towards their work and their “clients”; this informa-tion was then processed into a set of general problems (“limitations”) arising from the everyday work of health care professionals either in their offices or in the field, as well as into a set of Roma-specific problems. The fact that they were ready to iden-tify different problems when talking about health services for Roma indicated that they needed to approach them differently. Unfortunately, the health system has not always allowed this due to various limitations on various levels. Unfortunately, the health system has not always allowed this due to various limitations on various levels. These comprise not only the traditionally mentioned shortage or under-financing of the health workforce, but also a lack of understanding of the needs and expecta-tions of Roma, public health subordination to politico-economic regimes and esca-lated political connotations of Roma-related work.


The study calls for both professional and public consideration in reviewing the identi-fied principal dilemmas related to Roma health-status disparities and offers health--system owners and administrators a strategy for verification and application of the findings. These are in line with the conclusions and recommendations of the most important documents adopted by the member states in the WHO European Region, namely the Review of social determinants and the health divide – final report, and Health 2020 – European policy framework supporting action across government and society for health and well-being.

At the same time we have to point out that a health system alone cannot ensure good health unless there is a high-level political support to mobilize the involve-ment of other sectors and social and policy environment support for reducing inequities and changing individual behaviour. Health equity cannot be seen in iso-lation; rather, it must come to grips with the larger issue of fairness and justice in social arrangements, including economic allocations and paying appropriate attention to the role of health in human life and freedom. Without a whole-of--society and whole-of-government approach, success will never be complete.

Darina Sedláková Head of WHO Country Office in Slovakia

Andrej Belák 5

SummaryThe relatively poor health status of the Roma population in Slovakia ranks among the widest, steepest and most enduring intra-state health disparities in Central and Eas-tern Europe. The presented qualitative study examined how and why, paradoxically, this and analogous inequities might be systematically supported by the respective countries’ own health systems, too. Aimed primarily at researchers pursuing analogous questions, the first part of the publication reviews the basic specifications, limitations and advantages of the study design. In the second part, the main study findings are summarised, offering types, sources and differential negative effects of limitations in everyday health-system practice, as experienced from within by consulted Roma-ser-ving practitioners. The publication closes with recommendations for various groups the study has identified as being involved or being advisable for future involvement.

In particular, the Findings include descriptions, sources and possible negative differen-tial health effects of the following types of limitations (respecting consulted practitio-ners’ language):

General limitations in emergency-rescue and clinical practices

» Lack of appreciation

» Workload beyond the scope of the profession

» Insufficient capacities

» Lack of solidarity among practitioners

» Growing general public ignorance regarding health

» Crisis of confidence in own expertise

6 Health-system limitations of Roma health in Slovakia: A qualitative study

Roma-specific limitations in emergency-rescue and clinical practices

» Poor functionality of clinical standards

» Aggressive Roma behaviour

» Counselling and welfare workload beyond scope of the profession

» Low hygienic standards within segregated Roma settlements

» Truly racist practices

General limitations in population health research, surveillance and intervention

» Lack of experience in research

» State public health subordination to politico-economic regimes

Roma-specific limitations in population health research, surveillance and intervention

» Poor functionality of population standards

» Escalated political connotations of Roma-related work

The study Recommendations offer a 5-step strategy for verification and application of the above findings to owners of health-system operations and close with a review of 5 overreaching principal dilemmas identified with respect to health-status dispari-ties involving Roma for both professional and public consideration:

» A generalised or a varied understanding of health equity?

» Generalised or varied sets of standards for health-system practices?

» Adjusting emergency-rescue and clinical practices to professional education and training or vice versa?

» Fighting or healing racism?

» Expert or politico-economic control of public health issues?

7Andrej Belák

Introduction

“The fact that individuals have unique and incommensurable views of the world does not mean they cannot become friends, or lovers, or work on common projects.”

David Graeber (2004)


IntroductionDrawing from fragmentary historical indices (Crowe 2007; Fraser 1995; Horváthová 1964), intra-state health disparities involving Central and East European Roma are likely to pre-sent the steepest, widest and most enduring health gradients in the region ever. Reviews of the health status of contemporary Roma (EUC 2004; Hajioff and McKee 2000; Ringold, et al. 2005; Sepkowitz 2006; Zeman, et al. 2003) as well as lately amassing social epide-miological resumes (Cook, et al. 2013; FRAEU and UNDP 2012; FSG 2009; Kosa, et al. 2007; Masseria, et al. 2010) support such a proposition. Across countries, despite centuries of intense sporadic campaigns targeting various aspects of Roma otherness, the majority of Roma continue to live much shorter lives and to exhibit higher morbidity in comparison with non-Roma citizens. For approximately 400 000 Roma living in Slovakia today, the situ-ation appears to be identical (Cook, et al. 2013; Kolarcik, et al. 2009; Koupilova, et al. 2001; Popper, et al. 2009; Rosicova, et al. 2009). What do we know about what maintains these disparities? How might this knowledge be used to support authentic Roma health needs?

For answering such questions, the World Health Organization’s (WHO) multilevel framework on reducing health inequities, developed by the Commission on Social Determinants of Health (CSDH) (CSDH 2008) and endorsed by Member States in the World Health Resolution of 2009 (WHA62/2009/REC/1), provides an indispensable tool to start with. Summing up correlations accumulated by social epidemiologists over the last 50+ years, it lets us know what (levels of) health outcomes have so far typically occurred based on what (levels of) ‘social conditions’. It thus presents an unprecedented guideline for empirically based hypothesising and analysing of social inequities in further particular settings.

Yet, as routinely acknowledged by most prominent social epidemiologists (Berkman and Kawachi 2000; Kaplan 2004; Krieger 2011; Marmot and Wilkinson 2006; McMi-chael 1999; Susser and Stein 2009), including the CSDH framework’s very convenors themselves (Solar and Irwin 2007), from analogous reviews of common proxies there is still a long way to answering what these might mean for particular groups of peo-ple both practically and morally. Admitting with its many reverse causation pathways (Figure 1), the framework does not pretend to pose an unambiguous causal model – all of its suggestions of causality might not hold true everywhere. Moreover, where anti-cipated causal relations get confirmed through statistical observations, these alone do not indicate how which of them could (in terms of technical means) and should (accor-ding to the preferences of the people involved) be intervened upon.

Andrej Belák 9

These limits are nowhere as salient as when approaching exactly ‘ethnic’ health disparities. Here, even methodologically rigorous designs examining correlations thus far found almost universally – such as the relationship between socioeconomic status (SES) and health outcomes – do not provide answers in the above respects (Dressler, et al. 2005; Smith 2000). First of all, in the cases of many socially exclu-ded and/or marginalized ethnic groups, there might not be enough unassimilated members to compare with at the higher end of the SES spectrum. Second, where such comparisons are being made, SES usually proves unable to explain differences in all the measures of health outcomes employed (and sometimes none). Third, for the remaining proxies, where there seems to be a strong statistical relationship between SES and health outcomes, it still leaves us with clues neither regarding why the SES of the given ethnic group is systematically lower than that of majority compared with, nor how exactly does low SES in the case of the ethnic group exa-mined damage its members’ very bodies. Last but not least, interventions against the examined disparities usually evoked in the conclusions are not being outlined in practical terms and within the targeted people’s known preferences.

Figure 1 Location of the study’s object within the CSDH Framework

Considering the country’s whole health system rather than just health care (the cross--out), the study focused on its relations with all: Roma differential health status (typical object of analogous studies in the traditional quantitative approach; first red circle from the right), Roma themselves including with respect to their specifics (the second and the third circle), as well as with its own social determinants directly (the added arrow and the last circle) (CSDH 2008)


Recent Roma-related SES epidemiological research (accounting for the vast majo-rity of epidemiological research approaching Roma currently undertaken) mat-ches this picture, too. There are too few segregated Roma with an SES compa-rable to that of the respective majorities above the lowest segment of the SES spectrums. Standard SES hypotheses usually do not hold true for all proxies exa-mined as anticipated. The question of why many more Roma live at the lower end of the chosen SES spectrums is being missed, as is the question of how low SES specifically affects Roma health. Consequently, even the most rigorous SES studies contemplating Roma-involving health disparities typically conclude either with their results being ‘inconclusive’, or with claims that are both exaggerated (e.g. ethnicity effects are mediated by SES – as if the two proxies were separable in reality) and uninstructive (e.g. socioeconomic situation of Roma needs to be improved in order for their health status to increase). Or, at their best, vaguely quoting possible ‘cultural influences.’ Simultaneously, no Roma views regarding anything of the above are being taken into account at any stage (Kolarcik, et al. 2009; Voko, et al. 2009).

To move beyond the above illustrated limits of the traditional social epidemiolo-gical approach, empirical investigation is needed into additional questions such as: Are particular causal suggestions from the framework feasible considering the actual settings of the group of people in question? Are they present? If so, what and who makes the identified patterns of ‘underlying social determinants’ the way they are patterned (the causes of ‘distal causes’)? How do they actu-ally damage human bodies (the ‘mechanisms’ of ‘distal causes’ effects’)? Who holds the means for shaping and changing these causes and effects? What are the possibilities for improvement that are both practically possible and morally acceptable to all people involved?

As a strategy for addressing such questions, the CSDH itself suggests putting an additional accent on examining ‘context’. While the very notion of context has so far not been fully elaborated directly within CSDH materials (CSDH 2008; Solar and Irwin 2007; WHO 2013), its uses therein appear compatible with recent inter-disciplinary accounts of the same domain of problems (Dressler 2005; Frohlich, et al. 2001; Krieger 1999; Popay, et al. 1998). In these, ‘context’ is an acronym for all specific contingencies of local histories, including the shared circumstan-ces and understandings of involved actors (or what is commonly termed ‘cultural influence’ in the traditional biomedical literature). In other words, to account for questions critical for efficient and non-paternalistic assistance regarding health inequities, apart from examining whether and to what extent which CSDH fra-mework suggestions hold true statistically, for particular health disparities there is also a need to examine empirically what is such relations’ place in both local history and local understandings.

Andrej Belák 11

How can such a complex task be achieved in practice? One well established route is the generation of related empirically testable hypotheses via qualitative research. In the words of CSDH: “Understanding the impact that context has on health inequi-ties and the effectiveness of interventions requires a rich evidence base that includes both qualitative and quantitative data” (CSDH 2008). The basic idea behind quali-tative research strategies is simple: to surface feasible possibilities within particular settings by getting to know and talking to their inhabitants and stakeholders. Such was the approach of the study presented here. An amended version of the CSDH framework has been taken as a starting point (Figure 1) and a generation of com-plex and empirically testable hypotheses has been attempted on both the actual and possible roles of one of the framework’s particular agents – the health system – regar-ding Roma-involving health disparity in contemporary Slovakia. In-depth interviews were undertaken with Roma-serving health system professionals in their everyday settings after a period of the researcher’s personal familiarization with the selected operations’ routines. The professions included were: employees of state public health authorities, epidemiologists in research, hospital nurses and specialists, general prac-titioners and health-workers in various emergency-rescue positions.

The focus of the study was picked neither at random nor does it suggest that the health system is the most important agent contributing to the enduring Roma health disparity in the country. With reference to the CSDH framework, a wide range of other people and institutions are likely to be relevant: from politicians and business owners, through various local authorities, to Roma themselves. Rather, the choice presents but one particular step in the author’s broader qualitative appro-ach to the topic: a multi-sited research (Fassin 2013; Marcus 1995) beginning within the segregated Roma communities themselves (ethnographic research 2004-2010: Belák 2005; Belák 2013) and following outwards to visit, observe and interrogate regarding their contributions all other agents indicated as potentially involved.


In conclusion, it might be worth summing up this introduction by briefly com-paring the study approach described above (and in Part I in more detail) with another recent study examining similar topic in a more traditional way. Accor-ding to a general trend in quantitative social epidemiological research compa-tible with the CSDH framework (Solar and Irwin 2007), in their attempt to exa-mine the contribution of health-system operations to Roma involving health disparity in Slovakia, Jarcuska, et al. (2013) have chosen to concentrate on Roma health-care access. As a result, they have confirmed – importantly – a generally well established hypothesis that people with poorer access to health care tend to have poorer health status. All that their study has asked and answered thus is, whether and how strongly does one of the causal pathways set out in the CSDH framework also hold true for segregated Roma in Slovakia. In contrast, the research presented here has attempted to generate additional hypotheses about why (because of what and whom) and how (in terms of effect pathways) might this association be contributing to the disparity, as well as what could and should be done about it, how and by whom, according to the country’s involved health-system practitioners. The two studies are not in contradiction with each other rather they are complimentary pieces of a quest for a more complex pic-ture. Within CSDH’s framework itself, the comparison of the studies’ objects can be seen schematically in Figure 1.

Andrej Belák 13

Part 1. Design

“We may transform social science into an activity done in public for the public, sometimes to clarify, sometimes to intervene, sometimes to generate new perspectives, and always to serve as eyes and ears in our ongoing efforts at understanding the present and deliberating about the future.”

Bent Flyvbjerg (2001)

1


Part 1. DesignTHE PRESENTED STUDY WAS DESIGNED AND CARRIED OUT AS PART OF A BROADER MULTI-SITED QUALITATIVE RESEARCH FOLLOWING ALL CON-TRIBUTORS TO HEALTH DISPARITIES INVOLVING ROMA IN SLOVAKIA SUG-GESTED BY THE CSDH FRAMEWORK ON HEALTH INEQUITIES. AS SUCH, IT CAN BE UNDERSTOOD AS A RESPONSE TO THE CSDH’S CALL FOR BETTER CONTEXTUALISATION OF PUBLIC HEALTH AGENDAS TARGETING PARTICU-LAR HEALTH INEQUITIES VIA MORE SUBSTANTIAL INVOLVEMENT OF QUALI-TATIVE METHODS (CSDH 2008; see also Introduction).

METHODOLOGICALLY SPEAKING, THE RESEARCH AIMED AT GENERATING BOTH PRACTICALLY AND MORALLY SENSITIVE HYPOTHESES REGARDING THE EXISTING CONTRIBUTIONS OF AND AVAILABLE OPTIONS WITHIN HEALTH--SYSTEM PROCESSES AND PRACTICES WITH RESPECT TO THE TARGETED HEALTH DISPARITY. TO ACHIEVE THIS, IT EMPLOYED A STANDARD QUALITA-TIVE RESEARCH STRATEGY, COMBINING FEATURES OF QUALITATIVE SURVEYS AND OF THE ETHNOGRAPHIC GENRE. SYSTEMIC LIMITATIONS AS EXPERIEN-CED IN EVERYDAY PRACTICE WERE DISCUSSED WITH DIRECTLY INVOLVED HEALTH-SYSTEM PRACTITIONERS ACROSS PLACES AND PROFESSIONS IN THE COUNTRY.

IN LINE WITH THE CSDH’S RECENT EMPHASIS ON “RESPECT”, ESPECIALLY WHEN APPROACHING ”VULNERABLE GROUPS” (WHO 2013), IN ADDI-TION TO GENERATING NEW HYPOTHESES THE STUDY SIMULTANEOUSLY AIMED AT INSPIRING AND FACILITATING WELCOMING COOPERATION OF ALL ACTORS IDENTIFIED AS BEING INVOLVED OR AS BEING ADVISABLE FOR INVOLVEMENT. THIS WAS ATTEMPTED BY SUBORDINATION OF THE RESEARCH DESIGN AND OUTPUTS TO A SPECIFIC RELATIONAL AND PRAG-MATICALLY OPEN-ENDED SOCIAL RESEARCH APPROACH. TERMED “PHRO-NETIC” BY ITS CONVENOR AND PROPONENT, THE APPROACH SUBSCRIBES TO ”PRODUCING INPUT TO THE ONGOING SOCIAL DIALOGUE AND PRAXIS IN SOCIETY, RATHER THAN GENERATING ULTIMATE, UNEQUIVOCALLY VERI-FIED KNOWLEDGE” (Flyvbjerg 2001).

Andrej Belák 15

Basic specifications

Epistemology Following relational sociological assumptions, for purposes of the study the examined health-system processes and practices were understood as being patterned by historical accumulations susceptible to both contingencies and the involved actors’ interpretations, i.e. not as processes strictly following any deterministic laws. Therefore, the generation of hypotheses was intentionally conceived of so as not to be based on filling in any pre-conceived causal models (such as top-down critical, or bottom-up individualist rational action social theories). Instead, while imagining the involved actors as both contributing to and familiar with the existing patterns in their everyday lives primarily at an unconscious level (Bourdieu 2000), for the hypothetical reconstruction of their systemic on-the-job limitations and options (both ‘structural’ and ‘behavioural’) the design took as a point of departure the actors’ assumed ability to reflect on both in a practically and morally well--informed manner (Frohlich, et al. 2001; Popay, et al. 1998; Sen 1985; Williams 1995). Such epistemological openness, indiscriminate of the nature or logic of the consultants’ descriptions or reasoning, was at the same time expected to encourage authentic interest from the people involved in entering the eventual future composition and negotiation of related health-system organisational adjustments (Flyvbjerg 2001; Latour 2010).

MethodsThe traditional qualitative tool of in-depth interviews was used as a main method of data construction (Baker 1999), but in most cases these were only carried out following pre-vious personal familiarisation of the interviewing author with the everyday routines of the interviewees’ operations, consisting in job-shadowing and informal discussions with other staff (some owners did not allow for this to take place on their premises). Such mimicking of the ethnographic approach was supposed to enhance the level of practical detail and intimacy of the closing in-depth interviews (Hammersley and Atkinson 2007; Reeves, et al. 2008). While in-depth, the closing interviews revolved around a few generic questions suggested by the interviewer (here in their informal phrasing):

» Why do you work in the profession?

» Generally, what do you consider to be the main limitations of your everyday prac-tice on the job, i.e. limitations preventing the work in your operation from being done the way it could and should be done?

» How would you characterise the specifics of Roma clients, if there are any?

» What do you consider to be the main limitations of your everyday practice on the job with respect to Roma clients specifically?

» Do you know of any racist practices in your operations?

During the in-depth discussions pursuing these topics, the interviewing author con-centrated on reconstruction of the consultants’ practical reasoning through addi-tional questions, such as:

» Why don’t you like this? Why do you think this is inappropriate?

» Why do you think this is so? Who do you think is responsible for it?

» What do you think could and should be done about this? By whom? Why?


Seeking most pressing issues rather than representativeness, sampling was carried out on a fit-for-purpose basis: selected operations and professionals were invited to join the study based on their practice serving in or targeting geographic areas with the highest proportion of Roma residency and based on their specialisation areas being casually reported as experiencing the most practical difficulties (most of the consultants were approached randomly, some based on recommendations of their operations’ owners). Hoping to generate as many different hypotheses and insights as possible, the particular closing interviewees were selected following the highest possible variability in terms of their age, gender, length of practice and specialisation.

Recursive abstraction, consisting in the repeated reading and non-exclusive sum-marizing of field notes and closing interviews, was used for data analysis (LeCompte and Schensul 2013). Thus, types, sources and differential negative health-effects of limitations constraining particular health-system operations on a daily basis were constructed. These are presented in the report’s Findings. Based on these findings and on additional facts from related literature, tentative recommendations were proposed for the particular actors found involved or found advisable for future involvement (Recommendations). This inviting way of formulating and presenting findings was thought of as an encouragement for broader than usual scrutiny and cooperation with respect to eventual problems confirmed following Bent Flyvbjer-g’s concept of pragmatic relational social research: “In this scenario, the purpose of social science is not to develop theory, but to contribute to society’s practical rationality in elucidating where we are, where we want to go and what is desirable according to diverse sets of values and interests.” (Flyvbjerg 2001).

ExecutionFrom August to October 2013, the author spent 3 months visiting, observing and interviewing health-system practitioners in the two Slovak counties with the most Roma inhabitants (Prešov VÚC and Košice VÚC). After becoming familiar with the daily routines of approximately 40 professionals (ranging from spending night shifts accompanying emergency-rescue teams to interventions through spending days observing clinical encounters of a hospital paediatrician) and a great number of informal discussions, he recorded 20 closing in-depth interviews.

Recorded interviewees’ specifications:

» Emergency-rescue physicians (3) and an emergency-rescue assistant (1)

» Nurses (4) and specialist clinicians (8) in hospital wards (obstetrics, paediatric, internal medicine)

» General practitioners (2)

» Epidemiologist researcher (1)

» Public health officer (1)

» Counties of practice: Prešov VÚC (12), Košice VÚC (8)

» Gender: 7 men, 13 women

» Age span: 26 - 63 years

» Length of practice span: 1 – 38 years

» Supervising positions: 10 of 20 (2 directors of whole institutions)

Andrej Belák 17

Limitations

Some of the design’s limitations are inherent to the particular qualitative methods employed:

» The accuracy of the consultants’ assertions is questionable (perhaps especially regarding racist practices, given the high public contentiousness of the issue)

» The generalization potential of the findings is questionable as well (although this usualy is not a problem with case-studies of sufficient depth: Flyvbjerg 2006)

Additional limitations of the study were specific to this particular realisation:

» Due to time and budgetary constraints, the scope of the research was too narrow given the breadth of the topic (in particular, more direct observation and more discussions with the visited operations’ managements and owners would probably be of extra benefit; saturation in terms of types of limitations pertinent for particular specialisations remains questionable)

» While the response rate among the practicing employees was high (only 2 of 22 approached practitioners refused to be recorded, and none refused to discuss the proposed themes in full), most operation owners were hesitant to approve involvement in the study despite assurances that their institutions and participating individuals would remain anonymous (one large central hospital refused to cooperate whatsoever)


Advantages

Some of the design’s advantages are inherent to the particular qualitative methods employed:

» In most cases, the nature of the recorded in-depth interviews was informal (preventing excessive performativity in responses and allowing for greater depth based on greater intimacy) and the interviewer was previously fami-liarised with the operations’ routines (allowing for identification and easier resolution of numerous neglected or seeming contradictions in the consul-tants’ statements) – both thanks to the employment of ethnographic features (observant familiarisation and personal rapport building)

» Recorded consultants’ rationales were indiscriminate in terms of the nature of causal agents (sources of limitations ranged from political and historical through individual to material and technological) and complex – both thanks to the employment of relational sociological assumptions and of in-depth interviews

Additional advantages of the study were specific to this particular realisation:

» Most of the consultants were very open about all of the themes and expressed appreciation for being talked to about their experience in the performed man-ner, probably thanks to a combination of their long-term on-the-job frustra-tion and lack of feedback (many suggested spontaneously that there was no need to make their contribution anonymous, some considered the discussions therapeutic)

» The consultants’ interpretations of segregated Roma specifics could have been discussed in great detail (of revealing depth according to many) given the author’s previous personal familiarity with both the related social scientific literature as well as with particular instance of segregated Roma everyday settings and life

Andrej Belák 19

2Part 2. Findings

“One thus has to acknowledge that practice has a logic which is not that of logic, if one is to avoid asking of it more logic than it can give, thereby condemning oneself either to wring incoherencies out of it or to thrust upon it a forced coherence.”

Pierre Bourdieu (1977)


Part 2. Findings AS STUDY RESULTS, THE CONSULTED HEALTH-SYSTEM PRACTITIONERS’ EXPERIENCES OF SYSTEMIC LIMITATIONS TO THEIR EVERYDAY OPERATIONS ARE OFFERED FIRST, SUMMARISED INTO TYPES. ALL THESE TYPES PRESENT PARTICULAR TESTABLE HYPOTHESES ABOUT WHAT EXISTING ASPECTS OF HEALTH-SYSTEM OPERATIONS’ PROCESSES AND PRACTICES MIGHT BE CON-TRIBUTING TO THE EXISTING HEALTH DISPARITIES INVOLVING ROMA IN SLOVAKIA. UPON CONSTRUCTION OF THE TYPES, NO EXPERIENCES SHARED WERE LEFT OUT BASED ON THEIR SCARCITY (THEY REMAIN QUOTED SPECI-FICALLY). RECURRENT AND ANALOGOUS EXPERIENCES WERE MERGED INTO A COMMON TYPE WITH STRESSING AN ESTIMATE OF THEIR PARTICULAR FREQUENCIES WHERE POSSIBLE. THE TYPES OF LIMITATION EXPERIENCES WHICH THE PRACTITIONERS FOUND HAD NO RELATION TO THE FACT THAT MOST OF THEIR CLIENTS WERE ROMA ARE GROUPED UNDER “GENERAL LIMITATIONS”. LIMITATIONS CONSIDERED SPECIFIC TO A ROMA-INVOLVING PRACTICE FOLLOW BELOW, GROUPED AS ”ROMA-SPECIFIC”. FOR EACH OF THESE GROUPS OF LIMITATION TYPES, A LIST OF THE THEORETICALLY POSSIBLE (ACCORDING TO THE CSDH FRAMEWORK) OR ALREADY OBVIOUS (ACCORDING TO THE PRACTITIONERS) NEGATIVE INFLUENCES THEY HAVE SPECIFICALLY ON ROMA HEALTH STATUS ARE PROVIDED. THESE PRESENT TESTABLE HYPOTHESES REGARDING HOW EXACTLY THE ABOVE LIMITATIONS MIGHT BE AFFECTING THE HEALTH OF THE ROMA SPECIFICALLY.

NEXT, FOR ALL OF THE PARTICULAR EXPERIENCES OF THE LIMITATIONS DOCUMENTED, ALL OF THEIR POSSIBLE SOURCES ARE LISTED INDISCRIMI-NATELY (REGARDLESS OF THEIR MATERIAL, SOCIAL, POLITICAL, HISTORI-CAL OR OTHER NATURES). THESE PRESENT TESTABLE HYPOTHESES ABOUT WHY – AS A RESULT OF WHAT AND BECAUSE OF WHOM – THE LIMITATIONS MIGHT BE IN PLACE. THEY ARE RECURRENTLY SORTED ACCORDING TO EACH OF THE EXPERIENCE TYPES THEY WERE SUPPOSED TO MAINTAIN (MANY OF THE SOURCES QUOTED WERE CONSIDERED TO MAINTAIN MORE THAN ONE TYPE OF LIMITATION EXPERIENCE).

THE DESCRIPTIONS AND LANGUAGE OF BOTH THE EXPERIENCED LIMITATION TYPES AND THEIR ALLEGED SOURCES WERE CAREFULLY PICKED IN ORDER FOR THEM TO REMAIN CONSISTENT WITH THE ORIGINAL FIELD NOTES AND RECORDINGS. DUE TO THIS DEVOTION TO AUTHENTICITY, SOME OF THE PRESENTED DATA MIGHT DISTURB SOME READERS AS BEING TOO DISTANT FROM VARIOUS POLITICALLY OR SCIENTIFICALLY ENDORSED DISCOURSES. SHOULD THIS INDEED BE THE CASE, THOSE OFFENDED ARE ADVISED NOT TO JUDGE TOO HASTILY AND TO RECALL THAT THE PRACTITIONERS WERE KIND ENOUGH TO SHARE THEIR ACTUAL VIEWS IN ORDER TO HELP EVERY-BODY INVOLVED.

Andrej Belák 21

Types of limitations experienced


Lack of appreciationGenerally, appreciation of emergency-rescue and clinical practitioners’ work is too low and radically weakening. In the communication of patients and their families with practitioners, signs of sincere gratitude for received assistance are becoming rare, while overt arrogance is becoming ever more common (e.g. a rude stressing of the personnel’s public duties or threatening where the clinical itinerary differs from the receiver’s projections; see also Aggressive Roma behaviour). In contrast to some private and especially to most state-owned companies, treatment and appreciation of less qualified personnel by their superior colleagues and management is suppor-tive only in selected private ones (e.g. nurses in peripheral state-owned hospitals are commonly treated with blunt disrespect). Salaries of lower qualification profes-sions, such as nurses or emergency-rescue drivers, do not provide a decent living, pressuring the personnel into accepting unbearable amounts of overtime and/or into working additional jobs.

Workload beyond the scope of the professionA substantial and growing proportion of emergency-rescue and clinical practi-tioners’ work – majorities in the case of emergency-rescue teams and nurses in selected wards – deals with issues beyond the scope of the profession. Emergency--rescue teams carry out too much work beyond the treatment of urgencies, hospital nurses beyond assistance with patients’ needs related to clinical treatment, internal medicine wards beyond the treatment of undiagnosed conditions with unassigned therapies, etc. The character of inadequate workloads approximates psychological counselling or welfare services: taking care of anxieties, recurring psychosomatic states, crises of neglected chronic conditions (typically of non-Roma elderly people) and/or taking care of patients’ varied socioeconomic issues such as the unafforda-bility of medications, clothes or sanitary accessories, lack of transportation means, demands for medical documentation supporting welfare allowance claims (mostly on behalf of segregated Roma of productive age groups, see also Counselling and welfare workload beyond scope of profession).

Appreciation of clinical practitioners’ work is too low and radically weake-ning

A substantial and growing proportion of emergency--rescue and clinical prac-titioners’ work deals with issues beyond the scope of the profession


Insufficient capacitiesClinical practices are chronically and increasingly understaffed and underfinan-ced at all levels. Unless intrinsically lucrative, departments in peripheral hospitals lack physicians (especially experienced ones), while their assistants typically serve a great many patients and work hours far above the quotas permitted by law (e.g. nurses in obstetrics- and paediatric wards). The low and ever decreasing number of personnel is still usually combined with insufficient quality and capacities of clinical premises, ranging from physicians sharing worn out and barely functional surgery accessories to acute unavailability of patient beds in hospital wards. Older genera-tions of physicians are experiencing a steadily decreasing trend in amount of effort performed on the jobs per capita by their younger colleagues (see also Lack of soli-darity among practitioners).

Lack of solidarity among clinical practitioners With the exception of selected instances (e.g. smaller privately owned practices in lucrative locations and in specialised areas), the standards of interpersonal com-munication and cooperation among various clinical professions and departments typically continue to remain very low and keep worsening. Hostility (ignorance, pat-ronizing, verbal abuse, etc.) and lack of loyalty (from calumny to avoidance of col-leagues’ patients in need) continue to be typical for the working ambience in most clinical practices. In addition, older generations of practitioners consider the under-standing and attitudes of their younger colleagues regarding clinical occupations as increasingly opportunistic.

Growing general public ignorance regarding health While most patients’ confidence in and demand for particular clinical treatments continually grows, by biomedical standards their actual knowledge of health-rela-ted issues is becoming ever more fragmentary and confused. Emergency-rescue and clinical practitioners are being increasingly pushed (see also Lack of appre-ciation) toward procedures without clinical indications, such as the prescription of antibiotics for children or mood altering drugs. At the same time, their recom-mendations are not being followed where serious clinical indications exist. The lat-ter is especially the case with chronic diseases. Here, patients’ compliance ends with the intake of medicaments and the undergoing of surgical procedures, while preventative measures (e.g. dietary or physical activity recommendations) are only adhered to highly selectively or get ignored completely.

Clinical practices are chronically and increasingly

understaffed and underfi-nanced at all levels

Standards of interperso-nal communication and

cooperation among clinical practitioners remain very

low and are worsening

Patients’ confidence is growing, while their

knowledge of health-rela-ted issues becomes more

fragmentary and confused

Andrej Belák 23

Crisis of confidence in own expertiseMany clinical practitioners are experiencing growing doubts about the validity of their own expertise. Facing intensifying opposition from their patients (see also Growing general public ignorance), increasing direct pressures from marketing (e.g. incentives from pharmaceutical companies) and amassing expert opinion retrac-tions and clashes (e.g. in medical journals), general practitioners and paediatri-cians especially are finding it ever more difficult to decide about particular matters of clinical concern (e.g. regarding dietary recommendations in general practitioner practices), to weigh their own clinical experience adequately (e.g. where their own experience does not match general descriptions), and/or to not question the vali-dity of all of biomedical knowledge as such (e.g. when compared with the pragmatic common sense holism of various alternative or folk medicines).

Differential negative effects of general limitations in emergency-rescue and clinical practices on Roma health

» The low quality of emergency-rescue and clinical services – especially at the level of practitioners’ communication with patients – might be contributing to existing Roma prejudices about non-Roma, supporting and deepening existing Roma self-segregation practices (including aspects of existing Roma non-participation in the health system; see Roma-specific limitations).

» Due to their partial confounding with related Roma-specific limitations (e.g. Lack of appreciation, Workload beyond scopes of profession), the above limi-tations identified here as general are likely to be more serious and apply with more effect in areas with a higher proportion of segregated Roma patients.

Clinical practitioners experience growing doubts about the validity of their own expertise

The low quality of emer-gency-rescue and clinical services might be deepe-ning existing Roma self--segregation practices

General limitations are likely to be more serious in areas with a higher proportion of segregated Roma



Poor functionality of emergency-rescue and clinical standardsBoth written and implicit standard emergency-rescue and clinical procedures working for both non-Roma and non-segregated Roma patients consistently prove to be signi-ficantly less functional with respect to the majority of segregated Roma. Facing almost exclusively patients from this Roma subgroup (understood loosely as Roma living in variously segregated rural or urban enclaves), upon adhering but to such standard procedures (more frequently on the part of practitioners with short-term experience, high level of prejudices or those simply less willing to violate any official rules for other personal reasons), emergency-rescue and clinical practitioners often find themselves incapable of eliciting useful anamneses or securing even the most basic necessary patient cooperation in particular diagnostic, therapeutic and/or administrative tasks of their respective jobs. The clinical significance of such difficulties ranges from constant rather formal complications (e.g. the incapacity to understand and sign an informed con-sent) to frequent unnecessary chronic damage to health, including preliminary deaths (such as in cases of sudden patient withdrawals from life-saving therapeutic plans or of nameless new-borns being left behind in hospitals by their adolescent mothers and absent fathers). Emergency-rescue and clinical practitioners partially transcending such difficulties (most practitioners at least in some respects on a daily basis) are only able to do so based on a combination of long-term personal experience with this group of patients and the willingness to systematically assign extra time and make the extra effort on their behalf (such as undergoing an officially unacknowledged, unassisted and uncompensated extra trial and error learning process; switching between various modes of feeling, thinking and communication, including different moral priorities, for-mal rules, body and spoken languages, genres of humour; assisting patients with their basic hygienic, socioeconomic, administrative and time-management incapacities; etc.).

Aggressive Roma-specific behaviourA routine (daily in obstetrics and paediatric hospital wards) of Roma-specific aggressive behaviour, typically involving middle-aged and teen-aged segregated Roma of mid- to high socioeconomic milieus (as estimated by supposed Roma preferences), is steadily intensifying. Apart from hardly ever involving non-Roma, compared with the growing arrogance experienced from non-Roma patients (see Lack of appreciation), such beha-viour is both much more common and specific in its forms. The specific forms include: extreme verbal abuse (including allusions to sexual perversity and/or to relatives); pro-vocative allegations mimicking and mocking idealist evocations and practices regarding social justice (unfair allegations of racism, claiming misuse of peoples’ taxes, inappro-priate stressing of professional duties of the personnel, unjustified threatening with legal authorities or media, etc.); blackmailing via demonstrative self-harm (e.g. mothers banging their heads onto walls in order to achieve personnel violations of ward-rules), direct physical attacks (shouting, slaps, pushing, spitting, equipment damage); etc. Fol-lowing asymmetries in authority and physical involvement, most Roma-specific arro-gance is aimed at and dealt with by professionals of lower qualifications rather than physicians (i.e. clinical assistants, nurses, etc.). In the experience of emergency-rescue

Standard clinical procedu-res prove to be significantly less functional with respect to the majority of segrega-

ted Roma

A routine of Roma-specific aggressive behaviour

is steadily intensifying

Andrej Belák 25

personnel, most cases of such behaviour concentrate around regular peaks of Roma collective conflicts related to welfare payment dates and usually involve alcohol into-xication. In the experience of nursing staff in obstetrics and paediatric wards, such behaviour also escalates through collective hysteria, yet occurs constantly and does not involve intoxication as often.

Counselling and welfare workload beyond the scope of the profession In most emergency-rescue and some clinical operations (e.g. in paediatric and obstetrics hospital wards), a disproportionately large share of a substantial and growing workload beyond the scope of the concerned professions involves Roma (see Workload beyond scope of profession for primary explication). Work of this kind performed by emergency--rescue teams most often deals with social and economic issues of teenage and produc-tive-age segregated Roma, such as the resolution of escalating fights within settlements (usually assisted by police), the prestige deficits of individuals (increasing via recru-itment of non-Roma), the lack of affordability of medications, lack of transportation means, demand for medical documentation supporting welfare allowance claims, etc. Most emergency-rescue teams also pay ridiculously regular visits (e.g. hundreds per year) to elderly Roma individuals (here often not segregated) suffering from anxieties, recurring psychosomatic states, crises of neglected chronic conditions, etc. Within hos-pital wards, in addition to all of the above-mentioned issues, practitioners constantly deal with the consequences of recurrent child neglect (e.g. malnutrition, dehydration, bedsores, infant injuries, etc.); of recurrent neglect of personal hygiene (e.g. parasites, skin conditions); of the unaffordability of food, clothes and/or sanitary accessories; and similar (all usually on behalf of the poorest segregated Roma and/or their children). Apart from the high disproportion of Roma among the beneficiaries of such a workload, its specificity as experienced consists mainly in an inappropriately active and implied subscription to it by Roma patients: non-Roma patients in analogous situations typically exhibit much less related practical knowledge and self-confidence, better fitting the ”helping-the-victim” character of the situation.

Low hygienic standards within segregated Roma settlementsBoth personal and communal hygienic standards within segregated Roma settlements are too low. Compared with absolute majorities of non-Roma, non-segregated Roma and better-off segregated Roma patients, worse-off segregated Roma patients and their families approaching emergency-rescues and clinics often exhibit the consequen-ces of long-term neglect of personal hygiene too appalling for the personnel to deal with (parasites, filthy clothing and bodies, unbearable scents). Sanitary equipment in hospital wards often suffer on one hand from patients’ and patient family members’ ignorance regarding its proper use (e.g. frequent damage, unnecessary contamination, etc.) and on the other from excessive use of it by others (e.g. whole families often try to take the rare opportunity for taking shower upon visiting their relatives, frequent thefts of accessories, etc.). Missing and/or contaminated roads and shelters without any sani-tary infrastructure within the segregated settlements themselves increase the risk of contamination in clinical operations (e.g. emergency-rescue vehicles are contaminated with faeces, emergency-rescue clinical procedures often need to be carried out within filthy households).

A disproportionately large share of workload beyond the scope of the concerned professions involves Roma

Hygienic standards within segregated Roma settle-ments are too low


Truly racist practicesCases of intentional harm being done to patients by emergency-rescue and clinical per-sonnel based purely on the former being identified as Roma (i.e. without taking into account their actual behaviour) do occur. Such truly racist behaviour (e. g. the unwilling-ness to treat Roma patients of some general practitioners, the unwillingness of some clinical personnel to enter Roma households, derogatory communication with Roma patients, etc.), however, typically comes from psychologically troubled practitioners and is nowadays considered as unacceptable and opposed by both their colleagues and the Roma involved themselves. The exact range of these kinds of racist practices is thus hard to assess. Except for possible rare extremes (such as consistent harm being carried out covertly), it most likely amounts at most to particular clinical practitioners and ope-rations being consistently avoided by Roma. Much more common or constant (more frequent on the part of practitioners with short-term experience, a high level of preju-dices and/or paradoxically of those less willing to violate official rules for other perso-nal reasons) are cases of lowering the quality of service specifically towards segregated Roma patients based on previous frustrating experience with them or other Roma (not necessarily personal). The existing tendency to such lowering of quality is inappropriate, yet it is forced by constant failures in resolving clinical situations through standard fair means (see Poor functionality of clinical standards), typically restricted to the quality of the personnel’s communication (verbal abuse, shouting, threatening) and is not exclu-sive to only Roma patients under analogous circumstances. As such, it should be under-stood as a defensive (defensively racist at most) rather than a truly racist practice (e.g. as poor attempts at resolving situations by other means or a poor way of letting out one’s frustration for the moment).

Cases of intentional harm to patients based purely on them being identified

as Roma do occur

Andrej Belák 27

Differential negative effects of Roma-specific limitations in emergency-rescue and clinical practices on Roma health

» The lower quality and efficacy of emergency-rescue and clinical services spe-cifically toward particular Roma subgroups are disproportionately harming their health directly. Such direct negative effects range from imminent psy-chosomatic harm from the substandard quality of the communication from personnel to unnecessary chronic conditions, including preliminary deaths, resulting from particular non-functionalities of clinical standards; see Truly racist practices, Poor functionality of clinical standards.

» Likely Roma awareness of the lower quality of emergency-rescue and clinical services specifically against them might contribute to existing Roma preju-dices about non-Roma, supporting and deepening existing Roma self-segre-gation practices (including aspects of existing Roma non-participation in the health system).

» Non-Roma awareness of existing Roma incompatibility with emergency--rescue and clinical standards (e.g. non-Roma patients’ complaints about most of the above specifics of Roma patients are common; see also Aggressi-ve Roma behaviour, Low hygienic standards, Counselling and welfare worklo-ad) contributes to existing non-Roma prejudices about Roma, supporting and deepening existing non-Roma marginalisation of Roma (including aspects of existing non-inclusion of Roma within the health system).

» The presence of an officially unacknowledged and unresolved split of emergency-rescue and clinical practices (see Poor functionality of clinical standards), is the basis for additional unnecessary conflicts among emer-gency-rescue and clinical practitioners, further lowering the quality of their service (see Lack of solidarity among practitioners).

» Where present, Roma-specific limitations might be enhancing the serio-usness of particular general limitations and their effects (see Differential negative effects of general limitations in clinical practices).

The lower quality and effi-cacy of clinical services spe-cifically toward Roma are disproportionately harming their health directly

Roma awareness of the lower quality of clinical services specifically against them might be deepening existing Roma self-segrega-tion practices

Non-Roma awareness of Roma incompatibility with emergency-rescue and clinical standards supports the existing non-Roma mar-ginalisation of Roma

The presence of an unre-solved split in emergency--rescue and clinical practi-ces is the basis for conflicts among practitioners, further lowering the quality of their service

The presence of Roma--specific limitations might be enhancing some general limitations and their effects



Lack of experience in researchIn the country, too many population health researchers are too inexperienced and isolated to make beneficial use of available funds and talents. When compared with scientific production in the West – especially in areas concerning the social aspects of health – low ethical, efficacy, methodological, and utility standards prevent most local research networks from sensitively and efficiently producing reliable and usable outcomes (local studies still typically do not account for pitfalls long-known of abroad), from successfully competing for necessary international resources (given that domestic funding is continually diminishing), as well as from training new scientists with such abilities for the future (deficiencies keep being reproduced where young scientists do not enter international programmes).

State public health subordination to politico-economic regimesState public health practice is subordinated to alternating politico-economical regi-mes to such a substantial extent that both its organisational stability and its very expert content are compromised. Ever since the end of the Communist era, ope-rations of the Slovak public health authority have suffered from constant econo-mically, politically and ideologically reasoned organisational adjustments, including reductions in funding, capacities and competencies. As a result, state public health experts operate more and more as mere executive officers rather than as authori-ties responsible for proposals and protection of the setup of the state public health practice. They lose on one hand control over organisational security of their ope-rations (e.g. externally imposed headcounts, administration principles and budget cuts), and on the other the means for updating their practice with state-of-the-art expert knowledge (i.e. especially where recommendations are apparently incom-patible with the state politico-economical ideology of the day). For example, an absolute majority of related state resources and effort are focused on monitoring of and intervention in only the physically most proximate factors (such as the qua-lity of drinking water), while more distal determinants of health (such as structural inequalities) remain untouched and unapproachable – despite their being more recently pinpointed as being at least equally important by international public health experts. Continuing substitution of state public health authorities by sponta-neous private efforts (such as entrepreneur or NGO activities) has so far proven favourable only in relatively limited respects (e.g. overall improvement of sanitary conditions in hospitality industry or local trials of community health fieldwork within segregated Roma settlements). Spontaneous and more substantial involve-ment of private investors does not seem likely in public health areas where there are no profits to be made (i.e. especially where the final recipients are poor). The budgets, expertise and legal status of the involved NGOs do not provide for the necessary long-term management of such complex areas either.

Excessive subordination of state public health

to politico-economical regimes compromises its

organisational stability and expert content

Population health resear-chers are too inexperienced and isolated to make bene-ficial use of available funds

and talents

Andrej Belák 29

Differential negative effects of general limitations in population health research, surveillance and intervention on Roma health

» Underdeveloped population research on the social determinants of health makes it impossible to understand and appropriately address the makeup and sources of steep and enduring Roma health disparities (thus contributing further to the differential deterioration of Roma health).

» Through the absence of social determinants of health from its practice, the present organisational setup of state public health authorities makes it im-possible to monitor, intervene or supervise specifically on behalf of Roma groups as such – Roma health disparities are kept officially invisible and unapproachable as a public health issue. The lack of potential profits makes more substantial involvement of private investors unlikely.

» Inappropriate outcomes of poor research and the absence of appropriate monitoring, intervention and supervision regarding Roma population health might support existing Roma prejudices about non-Roma and existing non--Roma prejudices about Roma, as well as enlarge the existing political burden of similar and other Roma-related agendas (see Escalated political connota-tions of Roma-related work).

Underdeveloped popula-tion research on the social determinants of health makes it impossible to address Roma health disparity appropriately

The present organisational setup of state public health authorities maintains Roma health disparities as officially invisible and unapproachable as a public health issue

Poor Roma-related popula-tion research, monitoring, intervention and supervision outcomes might deepen both Roma self-segregation and non-Roma marginalisa-tion of Roma


Roma-specific limitations in population health research, surveillance and intervention

Poor functionality of population standardsWhen applied to segregated Central and East-European Roma, standard notions and methods used within population health research, surveillance and intervention – such as ”ethnic minority”, “nation” or “marginalisation”, and self-reported health surveys, life-statistics or monitoring via clinical databases – often prove significantly less functional. Attempts at addressing arbitrary Roma subpopulations anticipating homogeneity, accessibility, cooperativeness and historical orientations common for other sedentary populations in the region typically fail in all aspects: by underesti-mating their greater internal variability (e.g. underestimating the extent of isolation among Roma), endorsing naïve data-acquisition plans (e.g. underestimating local social desirability of bluffing), constructing invalid primary data (e.g. overestimating the local ability to understand questionnaires), reifying and relying on reified statis-tical artefacts (e.g. correlations confounding distinct specific causal pathways and preferences within places), etc.

Escalated political connotations of Roma-related workRegarding Roma in general, the country’s public is extremely polarised; this makes addressing any Roma-related issues – including health-status themes – exceptio-nally difficult. Turmoil and devoted opposition groups exist in and among various parts of the public, activist groups, political representation, the media, scientific communities, the Roma themselves, etc., and they are ready to pose and endorse an overwhelming array of arguments both for and against all: the use of public resources for affirmative action, approaching Roma as a cultural rather than a mere socio-economically marginalised group, designing activities with or without parti-cipation of Roma political representatives, the moral and political right to live off of Roma-related issues being or not being Roma, the intrinsic danger of ethnically classified data collection and publication, feasibility of any progress in Roma affairs given the long history of failures, etc.

Standard notions and methods of population

health research, surveil-lance and intervention

prove to be less functional with respect to segregated

Roma

Extreme public polarisation regarding Roma makes

addressing Roma-related issues exceptionally difficult

Andrej Belák 31

Differential negative effects of Roma-specific limitations in population health research, surveillance and intervention on Roma health

» The use of inappropriate notions and methods within population health research, surveillance and intervention designs might be harming the health specifically of Roma directly, e.g. by introducing systematic bias into estimates of clinical significance in their case.

» Inappropriate outcomes of poor research and the absence of appropriate monitoring, intervention and supervision regarding Roma population health might support existing Roma prejudices about non-Roma, existing non-Roma prejudices about Roma and further enlarge the existing political overload of similar and other Roma-related agendas

» The political overload of Roma-related issues might demotivate experts from entering or continuing efforts addressing Roma health disparities (thus contri-buting further to the differential deterioration of Roma health).

The use of inappropriate notions and methods might be harming the health of Roma directly

Poor Roma-related popula-tion research, monitoring, intervention and supervi-sion outcomes might be deepening both Roma self--segregation and non-Roma marginalisation of Roma

The political overload of Roma-related issues demotivates expert efforts addressing Roma health disparities


Sources of limitations experienced


Lack of appreciation » Historical patient emancipation and/or retaliation (During the Communist era, behaviour of clinical practitioners toward patients was traditionally rather arrogant and/because it used to be hard for patients to hold them accoun-table. With subsequent gain in their agency within clinical settings, many patients began actively to resist such treatment – or even retaliate for it – in an analogous style.)

» General loss of solidarity and an increase in competitiveness among people

» Formal education is generally over-valued; informal experience, manual labour and lower qualification efforts are devalued

» A tradition of arrogance among physicians (exercised toward less qualified personnel)

» Employees do not oppose inappropriate treatment by their superiors directly

» Employees do not report inappropriate treatment by their superiors to higher management

» Lack of interest of the state in peripheral hospitals

» The region is poor historically

» Health care as a whole is underfinanced by the government

» The financial crisis requires owners, employers and/or the government to save money

» Union strikes are not a viable pay negotiation option for nurses as mothers

» Confidentiality of salaries enhances speculation, envy, and discontent among personnel

» Commercial media focus on clinical failures and cover them superficially and unfairly (e.g. supposed victim-centred reporting and no recalls of false accusa-tions)

» High concentration of Roma in the area

Andrej Belák 33

Workload beyond the scope of the profession » The emergency-rescue network is too dense (since 2006, following implemen-tation of EU requirements)

» Emergency-rescue intervention is free

» No (applicable) charges or fines are in place for cases of emergency-rescue being used for non-urgent cases or intended misuses

» Emergency-rescue dispatchers’ options have been narrowed (There are fewer types of transportation available, more personal responsibility and missing guidelines for differential diagnostics, loss of direct knowledge of patients’ medical histories in the area due to centralization of dispatching, etc.)

» General public ignorance regarding urgent health issues has grown (also thanks to media campaigns following implementation of EU requirements in 2006)

» Increasing medicalization of life

» People are able to call an clinics from anywhere since the introduction of mo-bile phones

» No options available for clinic owners and management with respect to chronic overuse other than organising psychological counselling for their employees

» Insurance companies do not care about the absolute economic loss from chro-nic over-use of emergency-rescue services, because it is the cheapest option relatively (The only other available option of hospitalising the same patients is much more expensive and emergency-rescue operations have to be paid a flat-rate, except for negligible extra distance top-ups.)

» No legislature in place enabling insurance and/or emergency-rescue compa-nies to prevent chronic overuse of emergency-rescue services legally

» Statistics regarding inadequate use of clinical services are missing and not required by owners / the state (e.g. statistical evidence of efficacy of service is not required in state run public competitions for emergency-rescue licenses); supports corruption suspicions

» Too little time for communication with the patients in hospitals and general practitioner’s operations (e.g. radically shortened in-patient periods leave no room for educating the patients with respect to their conditions)

» Psychological counselling, social welfare and/or social medicine services are underdeveloped, redirecting too many people toward clinical practice

» The social and economic situation in the region has worsened

» The traditional family is disintegrating (e.g. ever more elderly people live alo-ne, abandoned by their descendants)

» The workload content (shift) is appropriate, but clinical practitioners are not being (re)educated and (re)trained appropriately for what their jobs actually require (e. g. in psychological counselling or about social welfare options)

» High concentration of (segregated) Roma in the area


Insufficient capacities » The region is poor historically

» The financial crisis requires owners, employers and/or the government to save money

» Union strikes are not a viable pay negotiation option for nurses as mothers

» Health care as a whole is underfinanced by the government

» Owners and managers lack interest in and/or under existing the clinical signifi-cance of their decisions; nowadays, most of them lack any clinical experience; supports suspicions of corruption

» Feedback regarding organisational issues from practitioners to management is not being taken seriously

» Owners and management place short-term profit above long-term stability and/or people’s health; supports suspicions of corruption

» Owners and their management are not being held accountable for long-term planning by the state; supports suspicions of corruption

» Specialisation is disappearing from nursing education

» Medical degrees and/or licenses are being granted to individuals incapable of-/unwilling to take up the vocational aspects of their respective professions

» General loss of solidarity and increase in competitiveness among people

» Incentive-based organisation of clinical practice supports inappropriate moti-vations

Andrej Belák 35

Lack of solidarity among practitioners » General loss of solidarity and increase in competitiveness among people

» A tradition of arrogance among physicians

» Practitioners do not oppose inappropriate behaviour directly

» Practitioners do not report inappropriate behaviour to management

» Management of state-owned operations lack the skills and/or interest in get-ting rid of unprofessional behaviour among their employees

» Management of state-owned operations lack the means for getting rid of un-professional behaviour among their employees, given the latter are under-paid

» Medical degrees and/or licenses are being granted to individuals incapable of-/unwilling to take up the vocational aspects of their respective professions

» Incentive-based organisation of clinical practice supports inappropriate moti-vations

Growing general public ignorance regarding health » Poor public health education

» Too little time for communication with the patients (e.g. radically shortened in--patient periods leave no room for educating the patients with respect to their conditions)

» Increasing self-confidence of patients regarding their knowledge of health issues as well as in communication with professionals

» Increasing medicalization of life

» Increasing commodification of health-status parameters

» Booming alternative approaches to health

» Increasing consumerism

» Growing pressures on public from food and pharmaceutical marketing

» Influence of the Internet

» Amassing of controversies regarding clinical expertise

Crisis of confidence in own expertise » Increasing opposition and pressures from patients and marketing (especially pharmaceutical companies and makers of medical devices)

» Lack of guidance and practical knowledge regarding evidence-based medicine (from medical training and/or respective professional associations)

» Lack of guidance and practical knowledge regarding proper evaluation of own clinical experience (from medical training and/or respective professional asso-ciations)

» Amassing of controversies regarding clinical expertise



Poor functionality of clinical standards » Hereditary / acquired (mostly conflated) Roma mental incapacities to achieve and maintain non-Roma standards (e.g. low intelligence, chronic impatience, hysterical tendencies, touchiness, etc.)

» Roma disinterest in achieving or contempt for the non-Roma way of life (valu-ing of rational order and security based on long-term planning including with respect to health)

» Opportunist Roma culture / Roma survival strategy

» Roma fear of non-Roma outside of Roma settlements

» Roma lack opportunities (infrastructural, educational, subsistence, etc.) to achieve non-Roma standards due to marginalisation by non-Roma and/or due to Roma self-exclusion and/or due to usury flourishing within segregated settlements

» Lack of fieldwork and edification being done in segregated Roma settlements

» Non-Roma lack knowledge regarding / under existing Roma life

» Missing / weak repression in place against Roma norms within segregated settlements

» Social welfare is too generous, supporting Roma passivity

» Roma lack purpose in life without the opportunity to work / to own land

» Clinical education, training and practice do not reflect the practical need for additional / more specific working standards

» Better functioning standards widely in use are not being officially acknowled-ged and appropriately compensated (Superiors tend to turn a blind eye, while colleagues who are themselves not involved tend rather to discourage on-go-ing extra efforts.)

» Testing and practicing of better functioning standards is not controlled legally and thus is risky (Superiors turn a blind eye and self-made behavioural models of Roma specifics are being tested and imposed wilfully outside any formal records.)

Andrej Belák 37

Aggressive Roma behaviour » Roma opportunist culture / Roma survival strategy

» Roma disinterest in achieving or contempt for the non-Roma way of life (valu-ing of rational order and security based on long-term planning)

» Roma fear of non-Roma outside Roma settlements

» Hereditary / acquired (mostly conflated) Roma mental incapacities (e.g. low intelligence, chronic impatience, hysterical tendencies, touchiness, etc.)

» Increasing isolation of younger Roma teenagers from non-Roma due to growing lack of opportunities; diminishing Roma knowledge of non-Roma means and manners

» Growing confidence of younger Roma (e.g. based on experiences from visiting Western countries or following role models such as emerging Roma rappers)

» Roma retaliation for a history of racism on the part of younger Roma (e.g. based on experiences from visiting Western countries or following role models such as emerging Roma rappers)

» Reaction to lower qualification personnel decreasing the quality of service

Counselling and welfare workload beyond scope of profession » In addition to sources for Workload beyond the scope of the profession:

» Hereditary / acquired (mostly conflated) Roma mental incapacities to achieve and maintain non-Roma standards (e.g. low intelligence, chronic impatience, hysterical tendencies, touchiness, etc.)

» Roma disinterest in achieving or contempt for the non-Roma way of life (valu-ing of rational order and security based on long-term planning including with respect to health)





» Social welfare is too generous, supporting Roma passivity

» Roma lack a purpose in life without the opportunity to work / to own land

» Cooperation with / work of social welfare authorities is unsatisfactory (e.g. social welfare officers refuse to remove constantly neglected children from families)


Low hygienic standards within segregated Roma settlements » Hereditary / acquired (mostly conflated) Roma mental incapacities to achieve and maintain non-Roma standards (e.g. low intelligence, chronic impatience, hysterical tendencies, touchiness, etc.)

» Roma disinterest in achieving- or contempt for the non-Roma way of life (valu-ing of rational order and security based on long-term planning including with respect to health)





» Lack of non-Roma fieldwork and edification in segregated Roma settlements

» State / municipal / public health / social welfare authorities’ neglect of Roma settlements

Truly racist practices » Employment / non-reporting of psychologically troubled individuals or collecti-ves by superiors / colleagues, respectively

» Poor functionality of clinical standards with respect to segregated Roma

» Salaries of lower qualification personnel approximate social welfare allowances

» Unavailability of psychological counselling for (lower qualification) personnel

» Unfair activist interpretations / media coverage of defensive racist practices increases practitioners’ loyalty with truly racist perpetrators

» Abundance of public prejudices regarding Roma

Andrej Belák 39


Lack of experience in research » Political history of Slovak science under Communist rule (Science incompatible with Marxist historical materialism used to be programmatically curbed by state authorities.)

» Inertial loyalty within low quality research networks

» Too few scientists with experience from abroad, yet

Public health’s subordination to politico-economical regimes » Lack of understanding, both among the public and among specific decision--makers, regarding the inherent incapability of public health to demonstrate short-term effects (presenting a preventative approach)

» Decreasing understanding, both among the public and among specific deci-sion-makers, regarding the key role public health has played in achieving and continues to play in maintaining the existing population health-status

» Lack of understanding, both among the public and among specific decision--makers, regarding the key role of social determinants of health for improving health status and health-status justice.

» Overestimation, both among the public and among specific decision-makers, of the abilities of the market and of spontaneous civic activities (such as NGOs) regarding public health

» Loyalty of many state public health experts regarding the diminishing of their roles within state public health practice

» Abundance of prejudices regarding Roma among state public health experts and practitioners


Roma specific limitations in population health research, surveillance and intervention

Poor functionality of population standards » In comparison to all other sedentary groups in the region, Roma populations have always been occupying and adapting to niches avoided by the former – hence, the tools made by the former for their own purposes are likely to lack both uses in and understanding of the history of the latter

» Systematic evaluation of failures missing from practice

» Biomedical population research has traditionally been conducted on behalf of non-Roma (considering Roma isolation a threat to public health) and/or on Roma (as an isolated population posing promising discoveries) rather than for Roma (incorporating target population needs)

» Biomedical research ignores social scientific accounts of Roma specifics

» Conclusions from social scientific accounts of Roma specifics are not being presented in a generally understandable language (e.g. excessive use of tech-nical terminology and references to social scientific theories) and/or in forms accessible from within the existing capacities of biomedical professions (e.g. no time to read lengthy, thick descriptions)

» Segregated Roma present an unattractive population for private health-system services and investors (given their poverty)

Escalated political connotations of Roma-related work » There has been a long history of failing attempts to level average segregated Roma standards with those of non-Roma populations

» With Roma typically remaining mostly external to both such levelling attempts as well as to discussions about their failures, the latter present arenas where any positions (including those most extreme) are easily maintained by parti-cipants without suffering any of the real consequences such positions might imply (e.g. various repressive or assimilative measures)

» Abundance of prejudices regarding Roma

» The involved parties ignore existing social scientific accounts of Roma specifics

» Conclusions from social scientific accounts of Roma specifics are not being presented in generally understandable language (e.g. excessive use of tech-nical terminology and references to social scientific theories) and/or in forms accessible from within most professions (e.g. no time to read lengthy, thick descriptions)

Andrej Belák 41

Part 3. Recommendations

“Our notions of ‘culture’, of ‘ethnic group’ or ‘people’ are so utterly rooted in the schemas derived from practices of nation states (which are, or at least strive to be, homogenous, neatly bounded entities) that Romany communities appear as an anomaly.”

Michael Stewart (2011)

3


Part 3. RecommendationsHOW MIGHT WHO MAKE USE OF THIS PUBLICATION WITHIN THEIR ACTUAL ASSIGNED COMPETENCIES?

FIRST, THE INACCURATE NATURE OF BOTH THE STUDY METHODS AND THE EXPERIENCES IT HAS ATTEMPTED TO RECONSTRUCT NEED TO BE ACCOUN-TED FOR. THE FOLLOWING RECOMMENDATIONS THUS BEGIN BY ADDRES-SING ALL OWNERS OF HEALTH-SYSTEM OPERATIONS, PROPOSING TO THEM A GENERAL STRATEGY FOR LOCAL VERIFICATION AND IMPLEMENTATION OF WHAT THE STUDY CONSULTANTS WERE WILLING TO SHARE AND WHAT THIS STUDY MADE FROM IT.

THEN, FOR BOTH PROFESSIONAL CONSIDERATION AND PUBLIC DISCUS-SION, A NUMBER OF PRINCIPAL DILEMMAS ARE DESCRIBED THAT APPEAR TO BE HINDERING PARTICULAR HEALTH-SYSTEM ACTORS FROM RESOLVING SEVERAL OF THE IDENTIFIED LIMITATIONS THROUGH JOINT EFFORT BOTH WITHIN AND ACROSS THEIR OPERATIONS AND AREAS OF PRACTICE. REFE-RENCES TO RELATED SCIENTIFIC LITERATURE ARE INCLUDED WHERE PARTI-CULAR INTERPRETATIVE ASSERTIONS MIGHT NOT BE GENERALLY KNOWN OR ACCEPTED. WHERE ILLUSTRATIONS MIGHT HELP, SOME ADDITIONAL DETAILS ARE SHARED FROM THE STUDY FIELD DATA WHICH DID NOT MAKE IT INTO THE REPORT’S Findings.

THESE RECOMMENDATIONS SHOULD CERTAINLY NOT BE FOLLOWED BLIN-DLY. THEY ARE INTENDED RATHER AS AN INSPIRATION FOR CONSTRUCTION OF RESOLUTIONS THAT MIGHT BETTER FIT PARTICULAR SETTINGS.

Andrej Belák 43

General strategy proposed for application of the findings

1) Assess the presence of the limitation experiences Owners of all health-system institutions are encouraged to review the types of limita-tions experienced listed in the study Findings. Then, the range to which particular types of limitation experiences occur within their particular operations should be assessed.

Do your employees really think they are facing such or similar limitations? What pro-portions of which employees think they face which limitations and to what negative effects?

2) Assess the presence of the limitations The presence of the actual particular limitations confirmed as experienced within particular operations needs to be assessed next.

Do your employees really face the limitations they think they face? What propor-tions of which employees do face which limitations and to what negative effects?

3) Explain aspects of the limitations not confirmed Should some of the listed types of experienced limitations or some of their aspects not be found significant within particular operations, such findings – including their possible explanations – should be shared with both the general public and professional colleagues.

Which of your employees only think they face which (aspects of) limitations that do not really exist and why? Which of the limitations do not exist within your operations and why?

4) Discuss options regarding remaining limitations with involved practitionersAvailable options regarding remaining limitations confirmed as real within parti-cular operations need to be reviewed and discussed with involved practitioners. At this stage, the overreaching dilemmas identified by this study are advised for review and inclusion into the discussions (Overreaching dilemmas for considera-tion).

Who can do what to help remove, shift or compensate for which of the limitations employees face within your operations?

5) Decide upon, implement and evaluate options against existing limitationsOptions identified in the discussions should be decided upon, implemented and evaluated. Outcomes of the evaluations carried out need to be shared with both the general public and professional colleagues.

Who is going to make sure which remedial steps will be taken, including an evalua-tion of their effects?

For the attention of: Owners and managements of all health-system opera-tions


Overreaching dilemmas for consideration with respect to Roma health

A generalised or varied understanding of health equity?Health-status related circumstances in both urban and rural segregated Roma settle-ments in Slovakia are radically distant from those typical for other Roma and non-Roma inhabitants. According to fragmentary authentic indices (Belák 2005; Belák 2013), people living in such circumstances are likely to agree that the existing expert understandings of health are generally reasonable and worth following in both their broad formal and more constricted practiced versions (Beaglehole and Bonita 2004). They too, seem to value their own ”complete well-being”, and they, too, seem to consider increased bodily capacities to be a meaningful goal for everyone. Along with obvious deliberate Roma utilisations of health care, such and similar findings thus conform to the common impression (e.g. among NGO activists) that these people would also do everything just as everybody else to incre-ase their health status – if they only had equal opportunities. Yet, drawing from identical ethnographic data, the very same segregated Roma simultaneously seem to consider and to refuse many such exactly equal opportunities as being principally too conflicting with their own understanding of a life worth living (Belák 2005; Belák 2013). This even-tuality is congruent not only with most other methodologically analogous accounts of non-assimilated Roma from across Europe (Dion 2008; Gay Y Blasco 1999; Gmelch 1986; Okely 2011; Stewart 1997; Stewart 2004; Stewart 2011; Tesăr 2012; Van Cleemput, et al. 2007; Vivian and Dundes 2004; Williams 2003), but now – thanks to the presented study – it also seems to be reflected in the understanding of many health-system practitioners.

For the attention of: Owners and management

of all health-system opera-tions, the general public, state ministries, political

representatives, health insurance companies,

universities, NGOs, donors, patients’ advocate groups,

and the media

Andrej Belák 45

In their experience, despite a full understanding of the consequences and the direct ava-ilability of equal options, segregated Roma often choose preservation of their everyday life circumstances over improvements in their health. In other words, equal opportu-nities might not be understood and availed of equally by segregated Roma based on radical differences in their identities (Dressler, et al. 2005; Frohlich, et al. 2001; Popay, et al. 1998; Whyte 2009). If this were indeed the case for substantial proportions of segregated Roma, the project of curbing Roma health-status disparities might eventu-ally start facing the same seeming paradox faced by the interviewed practitioners. How should particular professionals in the health-system position themselves regarding such an eventuality? Should the endorsement of health-status improvements also continue via pressure on segregated Roma’s very understanding of the place of diseases within their lives (e.g. through ”nudging” them toward education, as most consultants within this research were prone to suggest)? In what respects? Based on what rights? Or should the project limit itself to searching for ways of helping all Roma improve their health status solely under the specific conditions some of them might prefer (as the latest WHO and CSDH recommendations suggest in stressing ”respect” toward vulnerable groups) (CSDH 2008; WHO 2013)? Even if the latter might mean a long-term or total acceptance of a more heterogeneous health-status reality (depending solely on availability of accep-table means)? If so, what tools are there for detection and reconstruction of eventual authentic Roma conditions (in contrast, e.g., to conditions imposed on them by previous marginalisation or other forms of violence)(Bourdieu 2000)? Should such tools become part of public health expertise (if so, then how?), or should individual consultation of existing social science research remain the way to go (even though this does not seem to be a practical enough option according to most consulted health-system practitioners)?

Generalised or varied sets of standards for health-system practices?Regardless of exactly what health-equity projects will ultimately decide to aim at, it seems obvious that health-related circumstances in both rural and urban segregated Roma settlements will remain radically distant from what the existing health system is capable of efficiently supporting for at least another great number of years (e.g. guesses of the consulted practitioners ranged from decades to forever). Given the documented difficulties of the officially acknowledged, trained and valued generalised standards, and the documented lack of expert, legal and economic support for better functioning unofficial standards already in wide use, the question of whether the health system should not systematically acknowledge and incorporate the latter, too, might become legitimate. Should institutions comprising the health system start looking into ways of equipping its personnel and processes with additional tools, ones better capable of dea-ling with present specifics of segregated Roma? If so, what tools for what specifics? Plus, what about the possibility of such varied standards themselves preserving differences that are opposed in the long-term? What measures might prevent such inadvertent fixation of health inequities (Betancourt, et al. 2005; Kleinman and Benson 2006)? Should these issues become part of the public health agenda (if so, then how?), or should individual consultation of existing social science research remain the way to go (even though this does not seem to be a practical enough option according to most consulted health-system practitioners)?


A project titled “Healthy communities” involving community health fieldworkers assigned specifically to segregated Roma settlements might present a great live example for the above-described dilemma (ACEC; http://www.acec.sk/). As part of the project, lay individuals directly from within segregated Roma settlements are being trained and financially compensated variously to assist the health system (including its underdeveloped health-equity agendas) directly in such places. Within this study, to a direct question regarding variegation of available services on behalf of segregated Roma (sometimes asked at the very end of the interviews), every one of all consulted health-system practitioners across professions offered a positive reply. When additionally asked about what kind of specific variegation of services might be appropriate, the majority of interviewees either recalled an analogous community health fieldwork service once operating during the Communist era or came up with an identical idea themselves. Most of the visited practitioners expres-sed spontaneous interest in obtaining contacts for community health fieldworkers being trained in the area of their service. As the project, now operating under gover-nance of Platform for support of disadvantaged groups (http://www.ppzzs.sk/), has lately gained official support and funding directly from the Slovak government, per-haps a well-suited opportunity opens up to evaluate within its operations all of the above and further similar questions.

Andrej Belák 47

Adjusting emergency-rescue and clinical practices to professional education and training or vice versa?According to most consulted emergency-rescue and clinical practitioners, the high con-centration of segregated Roma in the area of their service seems radically to increase the proportion of the workload they consider inappropriate for their professions (e.g. involving too much psychological counselling and social welfare assistance). There was, however, principal disagreement among the consultants regarding the sources of and solutions to this problematic situation. Most viewed it as an unacceptable consequence of underdeve-loped social medicine and/or social welfare services – i.e. as a problem lying principally out-side their competencies. But others contemplated their own inappropriate expectations, insufficient education and training instead – i.e. implying or explicitly asserting that it is the content of their own clinical professions which should adjust to the specific needs arising in their geographical and specialisation areas. Thus, it seems timely to ask: should particular existing conflicts between the realities and the practitioners’ understandings of their jobs be resolved via adjusting clinical employment, education and training processes, or rather through adjusting Roma venues to clinical practices (e.g. through development of better functioning social medicine and social welfare)? By whom, how and in which respects?

Fighting or healing racism?In the accounts of most consulted practitioners, common substandard treatment speci-fically of segregated Roma (mostly in the sense of substandard communication or avo-idance) has been almost unanimously interpreted as morally unacceptable, but at the same time constantly forced upon staff by steadily worsening on-the-job circumstances (poor functionality of standards, capacity issues, aggressive behaviour of too many Roma patients, etc.). When approached from an inattentive, one-sidedly critical perspective (frequent mainly within activist- or media discourses approaching clinicians), such prac-tices are allegedly too often confused with ”true racism” – a much less common form of substandard treatment based solely on the supposed Roma-affiliation of the victims and personal psychological trouble of the perpetrators. An analogous distinction and rela-ted confusion might be extrapolated to the level of practitioners’ spoken practice (e.g. instances of common superficial statements, such as the consistent use of ”Roma” when referring to unpopular specifics of solely small proportions of segregated Roma, might easily be pinpointed as evidence of practicing racist generalisations). Critiques conflated in this way were considered by the consulted practitioners as mere arrogant accusations. As such, these do not seem to be doing anyone much good: thanks to them, commu-nication platforms necessary for addressing any kinds of racism appear to have been completely lost with many practitioners (e.g. one large central hospital declined partici-pation in this study explicitly quoting a bad experience of this kind, and most of the other consultants were apparently expecting the same). Far from underestimating the inhe-rent dangerousness of systematically substandard communication or inaccurate casual labelling, as well as from doubting historical achievements of radically critical discourses in the domain of so called “Roma affairs” (ERRC 2006; Zoon 2003), another dilemma might thus be formulated. Regarding racism, the present situation in the Slovak health system might perhaps be better suited for a more classic, cooperative and therapeutic approach (implying among other things literally psychotherapy for authentically racist individuals) rather than for a continuation of a zero-tolerance, uninstructive and overtly critical scrutiny (Allport 1979; Lévi-Strauss 1952; Phillips 2011).


Again, the ACEC “Healthy Communities” project offers a good illustrative example. Although now after newly becoming part of a temporary contract with the state, it runs independently from both the country’s Ministry of Health and the Slovak public health authority – the state expert health system at present simply does not operate in such directions (the contract was signed with Ministry of the Interior).

Expert or politico-economic control of public health issues?Strong relations between the poor health status of most Roma and the specific niches they occupy suggest that more systematic research, monitoring and inter-ventions regarding social determinants are necessary, should any alterations become agreed upon as favourable by all parties involved (see Introduction). Yet, as poor people supposedly do not present good clients for most private entrepre-neurs, most NGOs do not seem to possess sufficient capacities and legal status for appropriate long-term management of such complex issues, and state-employed public health experts seem to be continually losing their planning competencies to other politico-economic agents of the state, in Slovakia such a scenario seems rather unlikely. Another question worth public and professional discussions arises: should state expert health-system agencies, such as the Slovak public health autho-rity, not be returned some of their programming competencies and capacities? Will there be any specific long-term assistance available to address Roma health dispa-rity without such moves? Where will it come from?

Andrej Belák 49

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52 Health-system limitations of Roma health in Slovakia: A qualitative study

ZhrnutiePomerne zlý zdravotný stav rómskej populácie na Slovensku sa radí medzi najväč-šie, najstrmšie a najtrvalejšie vnútroštátne rozdiely v zdraví v Strednej a Východ-nej Európe. Predkladaná kvalitatívna štúdia skúmala ako a prečo by k takýmto a podobným nepomerom mohli v jednotlivých krajinách systematicky prispievať paradoxne aj samotné zdravotné systémy. Určená predovšetkým pre výskumníčky a výskumníkov zaoberajúcich sa obdobnými otázkami, prvá časť publikácie posky-tuje prehľad základných údajov, obmedzení a výhod dizajnu samotnej štúdie. Druhú časť tvorí zhrnutie jej hlavných zistení, pozostávajúcich z typov, zdrojov a možných špecifických negatívnych dopadov každodenných obmedzení v pra-xiach zdravotného systému, zostavených na základe skúseností praktičiek a prak-tikov slúžiacich Rómom na dennej báze. Publikáciu uzatvárajú odporúčania rôznym skupinám, ktoré štúdia identifikovala ako zainteresované alebo vhodné na zaintere-sovanie do budúcnosti.

Zistenia zahŕňajú popisy, zdroje a možné negatívne dopady na zdravotný stav špeci-ficky Rómov konkrétne nasledovných typov obmedzení (vo formuláciách rešpektu-júcich jazyk konzultovaných praktikov a praktičiek):

Všeobecné obmedzenia ambulantných a klinických praxí

» Nedostatočné ocenenie

» Pracovná záťaž za hranicami náplne profesie

» Nedostatočné kapacity

» Nedostatok solidarity medzi praktikmi a praktičkami

» Stúpajúca ignorancia verejnosti ohľadom zdravia

» Kríza dôvery vo vlastnú expertízu

Obmedzenia ambulantných a klinických praxí špecificky vo vzťahu k Rómom

» Chabá funkčnosť klinických štandardov

» Agresívne správanie Rómov

» Poskytovanie poradenstva a sociálnej podpory za hranicami náplne profesie

» Nízke hygienické štandardy v segregovaných rómskych osadách

» Skutočne rasistické praktiky

Všeobecné obmedzenia praxí v zdravotne-populačnom výskume, dozore a inter-vencii

» Nedostatok skúseností vo výskume

» Podriadenosť štátnych agend verejného zdravia politicko-ekonomickým reži-mom

Andrej Belák

Obmedzenia praxí v zdravotne-populačnom výskume, dozore a intervencii špeci-ficky vo vzťahu k Rómom

» Chabá funkčnosť populačných štandardov

» Politická preexponovanosť tém zahŕňajúcich Rómov

Odporúčania ponúkajú majiteľom a správcom prevádzok zdravotného systému 5-krokovú stratégiu pre overenie a použitie uvedených zistení a správu uzatvárajú 5 presahujúcimi dilemami ohľadom zdravotných nepomerov zahŕňajúcich Rómov určenými pre posúdenie profesionálmi i verejnosťou:

» Všeobecné alebo rôznorodé chápanie rovnosti v zdraví?

» Všeobecné alebo rôznorodé štandardy pre praxe zdravotného systému?

» Prispôsobovať klinické praxe vzdelaniu a tréningu profesionálov alebo naopak?

» Boj s rasizmom alebo jeho liečba?

» Expertná alebo politicko-ekonomická kontrola verejného zdravia?

Andrej Belák, MSc, left his undergraduate studies in philosophy (University of Vienna & Charles University in Prague) for natural science, eventually earning a degree in biology (Department of Anthropology and Human Genetics, Charles University in Prague). Having along the way performed extensive ethnographic research focusing on the local understanding of health within a segregated Roma settlement in Slovakia, he has, however, remained interdisciplinary. Cur-rently, he is a PhD candidate at the Department of General Anthropology at Charles University in Prague. Hoping to pay back some of his personal dues to both Roma and non-Roma consultants, his follow-up multi-sited fieldwork contemplates and tests additional possibilities for standard cooperation among medical anthropologists, epidemiologists and public health-practitioners in the region. In his view, bringing these disciplines together might facilitate a much needed more sensitive, more inclusive and (consequently) more effective expert practice targeting health-status disparities involving Roma.

“Health systems are important determinants of population health. Ensuring the voice of the most marginalised are heard in their design, implementation and review is a crucial success factor but

seldom achieved. This study can be added to growing list of others which shine a light on how to move forward with strong possibility of success and for realising global commitments to uni-

versal coverage and equity of outcomes.”

Chris Brown WHO European Office for Investment for Health and Development, Venice, Italy

“Roma have been shown to be one of the major deprived groups within the European Union. Sound evidence on their health status, and on the best ways to improve this, is still very scarce

albeit increasing. This study disentangles some of the difficulties in improving Roma health, by analysing both Roma and health system related determinants of a poor Roma access to care. I think the study calls for implementation and evaluation of the proposed solutions. Large health

gains can be reached here.“

Prof. S. A. Reijneveld University Medical Centre Groningen & University of Groningen, The Netherlands

Ing. Lucia Bosáková, PhD.Ing. Lucia Bosáková, PhD.Ing. Lucia Bosáková, PhD.Andrej Belak, MSc.Mgr. Mária Sarková, PhD.

ISBN 978-80-971475-2-5

limitations of roma health in slovakia · andrej belák 3 foreword according to the who...

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