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THE EXPERIENCES OF MALE CAREGIVERS 1

The Experiences of Men Providing Informal Care to a Relative with a Long-Term Physical Health

Condition

Miss Amit Jagdev

Submitted for the degree of

Doctor of Psychology (Clinical Psychology)

School of PsychologyFaculty of Health and Medical Sciences

University of SurreyGuildford, SurreyUnited KingdomSeptember 2018


Abstract

Background and Objectives: In recent years there has been a growing interest in

understanding caregiver experiences within a positive psychology framework, however

several issues have impacted on the development of literature in this area. These include a

lack of theory from which to understand positive aspects of caregiving, and a difficulty in

operationalising positive aspects of caregiving. Furthermore, despite acknowledgement that

subgroups of caregivers experience positive aspects of caregiving in different ways, there has

been very little research into the experiences of male caregivers. The aim of this study was

therefore to investigate how male caregivers describe their experiences of caregiving using

qualitative methods to help corroborate or develop existing literature around positive aspects

of caregiving. Research Design and Methods: 6 male caregivers from the south-east of

England were interviewed about their caregiving experiences using qualitative research

methods. Data was transcribed and analysed by the researcher using interpretative

phenomenological analysis. Results: The analysis revealed 3 themes around the caregiver

experience: experiencing losses and frustrations from caring for a loved one, finding ways to

hold on to a sense of self, and experiencing caregiving as bringing one closer to one’s values.

The concepts of value and identity were identified within each of these themes. Discussion

and Implications: Results are discussed in the context of Breakwell’s identity process theory.

In particular, it is noted that caregiver experiences relate to how much caregiving allows one

to be true to one’s identity. Homogeneity of the sample is discussed as a limitation. Further

research is suggested to explore how values and identity relate to caregiver well-being.

Keywords: caregiver, identity, positive, theory


Acknowledgements

First and foremost, I would like to give my sincerest thanks to my two research

supervisors, Dr Kate Gleeson and Dr Cécile Muller, for the support and encouragement they

gave me during this research project. I am so grateful for their unwavering guidance and

enthusiasm over the last three years, and for how their positivity always filled me with

confidence. I always left our meetings with a smile. Thank you also to Dr Jason Spendelow,

who supervised me at the beginning of this research project and gave me the initial

inspiration to conduct this research.

I would also like to thank the clinical psychology course team at the University of

Surrey, for giving me the opportunity to be a trainee clinical psychologist and undertake this

research project with them. Thank you also to all the clinical placement supervisors who

provided me with support and guidance throughout my training.

I would like to express my gratitude to the participants who volunteered to take part in

my research project. Without you this research would not have been possible.

I would also like to thank the wonderful Cohort 44 for their continued support and

friendship during clinical training. The past three years have been truly memorable, and I feel

so lucky to have shared it with you.

I would like to give a special thanks to my friends and family for the unconditional

love, patience, and faith they gave me over the past three years. Thank you all for helping me

to stay grounded, maintain perspective and keep smiling. I am deeply grateful to Hannah

Droscher and Matt Howard for proofreading my thesis completely of their own volition.

Finally, I would like to say thank you to Matt, not only for the countless cups of tea he


brought me, but for giving me the encouragement to keep going, and for always believing in

me.

Contents

Abstract.......................................................................................................................2

Acknowledgements.....................................................................................................3

Part 1 - MRP Empirical Paper..................................................................................5

Abstract...................................................................................................................................6

Background and Objectives....................................................................................................7

Research Design and Methods.............................................................................................12

Results..................................................................................................................................18

Discussion and Implications.................................................................................................33

References............................................................................................................................40

Appendices...........................................................................................................................46

Appendix A..........................................................................................................................47

Appendix B...........................................................................................................................48

Appendix C...........................................................................................................................49

Appendix D..........................................................................................................................50

Appendix E...........................................................................................................................51

Appendix F...........................................................................................................................52

Appendix G..........................................................................................................................56

Appendix H..........................................................................................................................58

Appendix I............................................................................................................................59

Appendix J............................................................................................................................62

Part 2 - Literature Review.......................................................................................63

Abstract.................................................................................................................................64

Background and Objectives..................................................................................................65

Research Design and Methods.............................................................................................69

Results..................................................................................................................................75

Discussion and Implications.................................................................................................92

References..........................................................................................................................100

Part 3 - Summary of Clinical Experience.............................................................107

Part 4 - Table of Assessments Completed During Training...............................110


Part 1 - MRP Empirical Paper

The Experiences of Men Providing Informal Care to a Relative with a Long-Term Physical

Health Condition


Abstract

Background and Objectives: In recent years there has been a growing interest in

understanding caregiver experiences within a positive psychology framework, however

several issues have impacted on the development of literature in this area. These include a

lack of theory from which to understand positive aspects of caregiving, and a difficulty in

operationalising positive aspects of caregiving. Furthermore, despite acknowledgement that

subgroups of caregivers experience positive aspects of caregiving in different ways, there has

been very little research into the experiences of male caregivers. The aim of this study was

therefore to investigate how male caregivers describe their experiences of caregiving using

qualitative methods to help corroborate or develop existing literature around positive aspects

of caregiving. Research Design and Methods: 6 male caregivers from the south-east of

England were interviewed about their caregiving experiences using qualitative research

methods. Data was transcribed and analysed by the researcher using interpretative

phenomenological analysis. Results: The analysis revealed 3 themes around the caregiver

experience: experiencing losses and frustrations from caring for a loved one, finding ways to

hold on to a sense of self, and experiencing caregiving as bringing one closer to one’s values.

The concepts of value and identity were identified within each of these themes. Discussion

and Implications: Results are discussed in the context of Breakwell’s identity process theory.

In particular, it is noted that caregiver experiences relate to how much caregiving allows one

to be true to one’s identity. Homogeneity of the sample is discussed as a limitation. Further

research is suggested to explore how values and identity relate to caregiver well-being.

Keywords: caregiver, identity, positive, theory


Background and Objectives

In 2011, there were thought to be 6.5 million informal, unpaid caregivers in the UK–

around 10% of the population–and this figure is estimated to rise to 9 million by the year

2037 (Carers UK, 2015a; Office of National Statistics, 2013). Taking on the role of an

informal caregiver, which might include providing practical, physical, financial and

emotional support, can have a negative effect on one’s physical and mental health, personal

relationships, capacity to work and finances (Carers UK, 2015a, 2015b). For example, in a

survey of over 4500 caregivers, 55% reported experiencing depression as a result of being a

caregiver (Carers UK, 2015b). Given the impact that caring can have on caregivers, there has

been increasing attention on how to identify and support caregivers through the development

of tailored interventions (Etters, Goodall & Harrison, 2008; Pinquart & Sorensen, 2006).

Many of these interventions (e.g. Chen, Huang, Yeh, Huang and Chen, 2015) have been

based on coping theories and the idea that improving one’s coping strategies can help to

alleviate feelings of burden and distress (Lazarus & Folkman, 1984; Pearlin, Mullan, Semple

& Skaff, 1990). As such, the absence of burden or distress has often been used as an indicator

of well-being (Kramer, 1997). However, this perspective is limited as it does not

acknowledge what caregivers might gain from their role.

Positive aspects of caregiving (PACs), e.g. what one perceives to gain from the

caregiver role on an emotional, psychological or social level, are important to consider for at

least two main reasons. Firstly, gains, such as feeling closer to the care-recipient and

experiencing personal growth (e.g. Lloyd, Patterson & Muers, 2016) have repeatedly been

reported by caregivers and therefore warrant being understood as part of the caregiver

experience. Secondly, PACs are thought to be associated with subjective well-being e.g.

increased life satisfaction (Cohen, Colantonio & Vernich, 2002; Pinquart & Sorensen, 2004;

Rapp & Chao, 2000), which is an important consideration given the many challenges that


caregivers face, such as having to make adjustments in their daily life, giving up their

vocation and experiencing greater financial stressors (Carers UK, 2015a, 2015b). In light of

this, researchers have recently turned their interests to thinking about what, if anything,

caregivers might perceive to gain from their role and how PACs might be bolstered (as

opposed, or in addition to how one might cope better with negative experiences of

caregiving). However, research into PACs has occurred much more slowly than it has for

research into caregiver coping. It is argued that the reason for the slow development in this

area is a lack of a shared language amongst researchers, e.g. common definitions of a positive

aspect of caregiving (PAC), and the lack of an underlying theory of caregiver adaptation from

which to understand PACs.

The concept of PACs began to emerge in the late-1980s, with the introduction of

terms such as uplifts (Kinney & Stephens, 1989), gain (Pearlin et al., 1990) and satisfaction

(Lawton, Kleban, Moss, Rovine & Glicksman, 1989) to the caregiver literature; however,

there is often confusion over what these terms mean or represent. Generally speaking, a PAC

is a perception of gain or a positive outcome of a caregiving role (Lawton, Moss, Kleban,

Glicksman & Rovine, 1991; Kramer, 1997). Specific examples of PACs may include

experiencing personal growth, experiencing a sense of accomplishment, or feeling closer to

the care-recipient through caregiving (Jagdev, 2018; Lloyd et al., 2016). However, what each

of these terms mean, i.e. how they are defined and operationalised, is often unclear (Farran,

1997; Kramer, 1997). For example, in a recent literature review about what dementia

caregivers perceive to be PACs, personal growth was identified as being a PAC by five

different research groups (Jagdev, 2018). However, personal growth is a relatively abstract

concept and definitions varied across researchers; some described it as becoming more

patient and understanding through caregiving (e.g. Netto, Goh & Yap., 2009), others spoke

about developing an increased self-awareness through caregiving (e.g. Sanders, 2005), and


others provided little to no definition of personal growth at all (e.g. Farran, Keane-Hagerty,

Salloway, Kupferer & Wilken, 1991; Peacock et al., 2010). Developing an acceptance of

difficulties associated with caregiving, is another example of a possible PAC (e.g. Cheng,

Mak, Lau, Ng & Lam, 2016), however some researchers have recently suggested that this is a

process that leads one to experience PACs (Lloyd et al., 2016). Such conceptual confusion

about what constitutes a PAC and the processes that lead to a PAC being experienced can be

seen across the caregiver literature, and arguably stems from the lack of a comprehensive

positive psychology theory from which PACs can be understood (Carbonneau, Caron &

Desrosiers, 2010; Kramer, 1997).

Since the introduction of PACs into the caregiver literature, several theories and

models have been used to explain what might count as and lead to a PAC. A lot of the

literature into PACs has stemmed from coping theories, for example, the stress-coping theory

(Pearlin et al., 1990). Models that stem from this theory (e.g. Noonan & Tennstedt, 1997;

Pearlin et al., 1990) conceptualise PACs in relation to experiences of stress or burden but not

to positive well-being indicators. Even the Interactional Model for Finding Meaning Through

Caregiving developed by Farran and colleagues relies on the assumption that individuals find

meaning through suffering (Farran & Keane-Hagerty, 1991; Farran et al., 1991), despite

being born from the existentialism literature. For this reason, Kramer (1997) suggested

drawing on literature around positive psychological well-being to understand PACs (Ryff

1989a, 1989b). Ryff (1989a) emphasised the importance of using self-acceptance, mastery,

autonomy, personal growth and positive relations with others as indicators of well-being.

Ryff also acknowledged how well-being indicators are likely to vary depending on factors

such as one’s age or culture (Ryff 1989a, 1989b). This is an important consideration to make

in relation to caregivers, as how one responds to caregiving is likely to differ depending on


factors such as one’s age, relationship to the care-recipient, personal resilience and the

diagnosis or health condition of the care-recipient.

Nolan, Grant and Keady (1996) proposed a model of PACs, which could be

applicable across caregiver contexts. They developed a conceptual matrix in which the type

of satisfaction experienced depends upon the source of satisfaction and the main perceived

beneficiary of a social interaction. For example, one might experience a sense of achievement

if the caregiver is the main beneficiary and satisfaction is derived from intrapsychic sources.

While several PACs have been shown to map on this model and it can be utilised with a

range of different caregivers (Lloyd et al., 2016), it has not been consistently utilised within

the PACs literature (Jagdev, 2018). In fact, despite there being a number of different theories

and models available to draw from, many researchers have been found to present their results

in the absence of any theory at all (Jagdev, 2018). It could be proposed that none of the

theories and models currently available within the PACs literature adequately account for all

PACs or the processes that lead to PACs, and are therefore not being consistently utilised.

The lack of a prominent theory within literature is problematic as without this it is hard to

know which concepts to investigate (Barker, Pistrang & Elliot, 2002), which in turn creates

several methodological issues.

The lack of a prominent theory from which to understand PACs is said to have

impacted on the quality of quantitative literature and the development of robust quantitative

measures relating to PACs (Kramer, 1997; Stansfeld et al., 2017). For example, in one early

quantitative study about the experiences of caregiving, PACs (specifically feelings of

gratification in relation to caregiving) were assessed by asking caregivers to say whether they

experienced feelings of warmth, comfort or pleasure most of the time, sometimes, a little or

never (Motenko, 1989). In this example, warmth, comfort and pleasure are subjective terms


that reflect the researcher’s understanding or assumptions of PACs, but may not reflect a

caregiver’s experiences of PACs. Furthermore, the terms are not theory-driven. This is

problematic as PACs are multi-faceted and subjective, and measuring PACs through a single

closed question that is not grounded in theory constrains the respondent, and may cause the

researcher to miss valuable information about the nuances of a caregiver’s experience. In

turn, researchers risk developing conclusions that may not accurately reflect or represent an

individual’s experience (Sheatsley, 1983). While in more recent years positive psychology

measures of caregiving have been developed, psychometric properties of measures are not

always reported, meaning that the quality of such measures has been hard to assess (Stansfeld

et al., 2017). Stansfeld and colleagues suggested that one reason for the small number of

high-quality measures into PACs, is that many scales align themselves with stress-coping

theories and that there is “still scope for the development of new measures that draw on

models which are more closely aligned to the discipline of positive psychology (Clarke and

Wolverson, 2016)” (Stansfeld et al., 2017, p. 14).

In the absence of both theory and high-quality quantitative measures, utilising

qualitative research methods either prior to or in conjunction with quantitative methods, e.g.

by consulting with caregivers about their understanding of PACs, can help researchers to

develop their understanding of caregiver experiences (Sheatsley, 1983). While several

qualitative studies have been conducted into PACs, these have been found to vary

considerably in quality, and in some cases to lack credibility (Jagdev, 2018). As such, there is

a need for more high quality qualitative literature to help corroborate existing findings and

ensure that caregivers’ experiences are being accurately reflected in the literature (Jagdev,

2018; Lloyd et al., 2016). By developing a greater understanding about both the positive as

well as the negative aspects of caregiving, researchers may be better able to develop

interventions that are specifically designed to meet caregiver’s needs. Furthermore, in order


to build on the understanding of how experiences of PACs vary across caregivers, it is

important that new qualitative research focuses on specific subgroups. This is because

different subgroups, e.g. male and female caregivers, have been shown to experience

caregiving differently, and may therefore conceptualise PACs differently (Lloyd et al., 2016;

Sanders, 2005). Despite this however, male caregivers are widely under-researched (Kramer,

1997). It has therefore been suggested that researching male caregivers’ experiences may

help to develop the understanding of the caregiver experiences both in relation to PACs

(Kramer, 1997), and more widely (Houde, 2002).

In summary, despite the growing interest in PACs, there are several issues that have

limited the development of the PACs literature. Issues include an unclear definition of PACs,

a lack of a prominent theory around PACs, and a lack of high quality quantitative measures

into PACs. This suggests a need for high-quality qualitative research into PACs to help to

operationalise the terms and understand the mechanisms and to build theory behind PACs.

More specifically, it is argued that there is a need to directly and openly ask male caregivers

about their experiences, to help develop an understanding of how specific subgroups of

caregivers’ experience and conceptualise PACs. The aim of this study was therefore to

investigate how male caregivers describe their experiences of caregiving.

Research Design and Methods

Sample

Sampling strategy and eligibility criteria. A total of six male caregivers were

recruited for this project using purposive sampling. A sample of six was thought to be a

suitable number to allow a sufficiently in-depth analysis given the time constraints of the

project (Smith & Osborn, 2008). These participants all met the following inclusion criteria;

were male, over the age of 18, self-identified as being an informal caregiver, provided care


for a loved one with a long term physical health problem such as cancer or dementia, and

lived in the UK. A caregiver was defined as someone who provides informal, unpaid care for

a loved one.

Participants were excluded if they provided care for someone with mental health

condition such as depression or schizophrenia. This was in aid of increasing homogeneity

across the sample. No exclusions were made based on the caregiver’s relationship to the care-

recipient, or the physical health condition of the recipient.

Sample characteristics. Participants ranged in age from 32 to 84 years old (M=65

years old). Four participants were husbands who cared for their wives and two were sons who

cared for their mothers. Of these, two of the husbands lived with their wives, and one of the

sons lived with his mother. The other three caregivers did not live with the care-recipient. All

but one of the caregivers provided daily care for the care-recipient.

All care-recipients were described as having mobility issues/difficulty walking. Three

care-recipients had some form of dementia, one had osteoporosis of the spine and nerve

damage, and two had severe or chronic pain.

Design

Data was collected and analysed using qualitative methods. Participants took part in

semi-structured face-to-face interviews, and data were analysed using interpretative

phenomenological analysis (IPA). IPA was primarily chosen as it allows for a detailed

investigation of an individual’s nuanced experiences (Smith & Osborn, 2008). Given the

interpretative nature of IPA, the impact that a researcher might have on an interview and

analysis needs to be considered (Smith & Osborn, 2008). It is therefore important for the

researcher to engage in reflexivity throughout the study, particularly given the lack of

theoretical base from which to understand PACs and how pre-existing conceptions might


influence the analysis of the data (see Appendix B for more detailed rationale for choosing

IPA).

Interview Design

An interview schedule (Appendix C) was developed in collaboration with the

project’s research supervisors at the University of Surrey. Unfortunately, it was not possible

to recruit a caregiver to aid in the development of this schedule, although several attempts to

do so were made. The aim of the schedule was to help shape and guide the interview, and to

be used as a tool to facilitate a detailed account of a participant’s experience (Smith, Flowers

& Larkins, 2009). As such, the interview was led in-part by the participant, and the researcher

used active listening skills to follow up on issues raised by participants.

While the nature of the study was explained to participants before they agreed to take

part in the interviews, attempts were made to keep the questions as neutral as possible and not

lead the participants too much into thinking about PACs, particularly at the start of the

interview. This was intended to gain a balanced picture of the experiences of caregiving, and

to avoid participants feeling pressured into identifying PACs that were not particularly

meaningful to them. PACs were asked about more directly towards the end of the interview if

they had not already been touched on.

Procedure

Recruitment strategy. Prior to recruitment an ethics application was submitted to

and approved by the Faculty of Health and Medical Sciences Ethics Committee at the

University of Surrey. Ethical approval was received in November 2016 (see Appendix D for

approval letter). Recruitment commenced in December 2016.


All participants were recruited through charities for caregivers in the south-east of

England. Information flyers attached to an email (Appendix E) were sent to either the

administrator or the manager of each charity, and circulated to its members on behalf of the

researcher. Individuals who were interested in participating in the study were invited to

contact the researcher, and were selected on a first-come basis providing they met the

eligibility criteria. This was checked at first contact by phone or email. If they were deemed

to meet the criteria, volunteers were invited to a face-to-face interview with the researcher.

Data collection. Interviews either took place at the participant’s home or in a neutral

and confidential location, such as the conference room of a library. The risks of lone working

were discussed with the study supervisors. While risks were deemed to be low, a buddy

system was agreed where: (a) a buddy, i.e. designated supervisor or family member, was

informed of the interview location; (b) the researcher would contact their buddy before and

after meeting a participant; and (c) the buddy would contact the police in the event of the

researcher going missing. This was in line with the lone working policy at Surrey and

Borders Partnership Trust.

Prior to meeting, participants were sent a copy of the participant information sheet

(Appendix F) by email. On the day of the interview, participants were guided through the

participant information sheet before signing a consent form (Appendix G). All interviewees

consented to having the interviews voice recorded, and recordings were taken on two

recording devices to safeguard from any technological issues. Interviews ranged from 1 hour

to 1 hour and 45 minutes, and lasted 1.5 hours on average.

As is often customary within IPA, each interview was guided in part by the interview

schedule, and in part by the participant. The interviewer approached each interview with

curiosity, so as to be able to identify and explore topics pertinent to participants. The tone of


each interview varied and seemed to depend upon each participant’s particular context and

experiences. There was a sense that each participant had experienced a number of challenges

as a result of being a caregiver, however there were also varying levels of humour within the

interviews.

Data analysis. Interviews were transcribed by the researcher with the aid of Express

Scribe Pro V 6.00 transcription software (NCH Software, 2017). Following transcription,

data were analysed by the researcher using Interpretative Phenomenological Analysis (IPA)

as outlined by Smith et al. (2009). To start, each transcript was read through and annotated by

the researcher for any points of interest. Each transcript was read and re-read to verify any

initial themes that had been identified from the data. Once preliminary themes were

identified, they were compared, contrasted and in some cases, amalgamated into one super-

ordinate theme. These were discussed with supervisors who also read through participant

transcripts. During the process of identifying themes, careful attention was paid to how much

evidence was available in each transcript to support the theme, and theme titles were created

that attempted to capture the essence of what the participant was communicating. This

process was repeated for each participant before all the themes were compared and analysed

for commonalities and differences. Final themes were discussed and reviewed with the study

supervisors, with careful thought to issues of reflexivity (see Appendix H for more detailed

account of coding process). Particular attention was paid to how the researcher’s perspective

might have shaped the themes that were identified, e.g. expectations of PACs emerging, and

how much the evidence supported each theme (see Appendix I for example extract of

transcript and analysis).

Pseudonyms have been used in place of participants’ names to retain anonymity.

Parentheses were used to clarify ambiguous words and replace potential identifiers within


quotes, such as names of care-recipients or charities, with a broader reference e.g. (a charity).

Any non-verbal communication such as sighs have been presented in brackets, e.g. [sighs].

Reflexivity

Willig (2001) described IPA as “both phenomenological (that is, it aims to represent

the participant’s view of the world) and interpretative (that is, it is dependent upon the

researcher’s own conceptions and standpoint)” (p. 67). Given this nature of IPA, the

researcher endeavoured to engage in reflexivity throughout this project by keeping a

reflective journal and attending regular supervision meetings. This enabled the researcher to

be mindful of the perspectives that they were bringing to the data collection and analysis.

Issues of reflexivity will be discussed in more detail later in this paper.

Ethical Considerations

Prior to commencing the interviews, participants were made aware of the ethical

considerations of the study. Each participant was fully informed about the nature of the study,

informed about their right to withdraw at any time without the need to provide a reason, and

informed that they could choose to terminate the interview or ask for a break if the interview

became in any way distressing or emotionally charged. Participants were also permitted to

keep their phones on and advised they could terminate or reschedule the interview if they had

to attend to their care-recipient.

Participants were informed that data would be treated with confidentiality,

anonymised, and stored in accordance with the Data Protection Act 1998. However, they

were advised that confidentiality may need to be broken in the event of them disclosing a risk

of harm to themselves or someone else. They were informed that any personal identifiers

would be removed from this report, and told that they could ask to withdraw their data at any

time until analysis of their transcribed interview had commenced.


Results

From the analysis of the data three main themes were identified that described some

of the subjective experiences of male caregivers. As further described in Appendices B and J,

the double hermeneutic of IPA allowed the researcher to be curious about her own experience

as well as the participants during the analysis. Through a process of reflexivity and

supervision, the initial themes evolved over time, as can be seen in Appendix I. A list of final

themes and sub-themes can be seen in Table 1. Verbatim extracts from participants’

transcripts are used to illustrate each theme and sub-theme.

Table 1

Summary Table of Themes and Sub-Themes

Master theme Sub-theme

1. Experiencing losses and frustrations from caring for a loved one

1.1. Losing part of yourself1.2. Losing your life-long partner1.3. Feelings of anger and frustration

2. Finding ways to hold on to a sense of self

2.1. The importance of psychological space

2.2. Finding an outlet for anger, frustration, doubts or worries

2.3. Finding new sources of satisfaction or enjoyment in one’s life.

2.4. Connecting with other caregivers

3. Experiencing caregiving as bringing one closer to one’s values

Experiencing Losses and Frustrations from Caring for a Loved One

Caregiving was described as a difficult experience in one way or another by all

participants. Participants spoke about how they felt a sense of loss, either in relation to

themselves or their partner. In essence, participants described losing a part of a life they once


valued, and how this loss seemed closely related to feelings of anger, frustration and

disappointment.

Losing part of yourself. Amongst all the respondents there seemed to be a sense of

self-sacrifice, either in the way they lived their day-to-day lives or in terms of their life

ambitions (both past and future). Some caregivers described how the life they once hoped for

or imagined had been either taken away from them or denied, leaving them with a feeling of

disappointment:

Andrew: I mean nobody’s thing is, when you’re or whatever you retire, and

you have this vague thing of, alright, now we can travel, and some people

of our age group do, and all that is sort of taken away. This is not what we

planned, we didn’t volunteer for this.

Kevin, a caregiver in his 40s, spoke strongly about the things in his life that he never

got a chance to do because he had been a caregiver for his mother his whole life:

Kevin: I look at other people and I think to myself “you’re so lucky. You

have the freedom to do this, you have the freedom to do that”, but I know

they don’t because people my age now already have families and kids and

mortgages and all the responsibilities that go with it. But I didn’t have a 20s

like other people had their 20s. And, so, um, I think I would have liked to

of had a sort of, a normal 20s where I didn’t grow up too quickly.

For Kevin, the experience of being a caregiver his whole life appears to have shaped

his identity and how this has developed over the years. He spoke about sacrificing his identity

and autonomy, and not really having a sense of who he was as a person. Brian described

caregiving as something that often “dominates” one’s life, and makes it hard for one to think


about their own needs, as though one’s needs become scarified. For Harold, thinking about

himself and the needs he had to sacrifice was something that could make him “easily get

more depressed”.

Nick, also a son who cared for his mother, spoke about how he felt like he was always

on-call and therefore like he had to put restrictions on his life in case he was ever called to an

emergency. In this sense, caregiving led to him having to sacrifice his personal freedom. He

limited where he went, how much alcohol he drank when socialising, and preferred to only

go to places where he could take his car, in case he was called out to an emergency:

Interviewer: So, you still manage to get some time to do the things that you

want to as well?

Nick: Yes, but under restrictions. They’re self-imposed restrictions where I

want to be in a certain radius of mum, should I get the emergency phone

call.

Being a caregiver also meant that some individuals had to learn to inhibit their

instincts or natural responses to a situation, which could be thought of as sacrificing one’s

principles, values or identity. This was particularly evident for Brian, a participant caring for

his wife, who found it very important to stand his ground and would ordinarily not be afraid

to enter a confrontation if needed. However, he spoke about having to now avoid potential

conflict or confrontations when out in public as he could not afford to make himself

vulnerable anymore; something that would not have ordinarily been a concern for him. This

was against his principles and seemed to lead to an inner conflict about what he wanted to do

and what he felt like he could do:


Brian: I'm a free agent I'm married of course, but y'know I have to think

twice-. And also, my actions everywhere I go, I can't get involved in things,

because I've got to be back for (my wife). But normally I'd have challenged

it, but I couldn't. I couldn't get involved 'cos- I can't, I have to avoid

confrontation if you like. If anything happens to me when I'm out, 'cos I

would normally- I don't like walking away from things. But I have to think

oop, can't do that.

Losing your life-long partner. All three of the men who cared for a wife with

dementia spoke about how saddened they were about effectively losing their wife as they

once knew her. This experience seemed to be specific to the context of caring for a partner

with a condition like dementia where the self and identity of the person diminishes over time,

and highlights how one’s personal or individual circumstances might influence one’s

experience:

Eddie: My wife and I have lost any intimacy or, I mean the last 18 years,

with my wife having dementia, we just don’t have a relationship. And that I

find sad. If my wife were able to have a relationship with me well that

would be [pause] the one thing I would want, you know.

Such a loss was described as both sad and difficult to accept by Andrew, “the person

you knew, fell in love with and had children with is gradually being removed from you, and

because you get that symbiotic thing it’s hard, it’s hard to accept”. Harold described how this

loss had impacted on his relationship with his wife and the feelings he had towards her:

Harold: …I suppose because she’s mentally not with me, she’s a different

woman to what I married. I suppose my love has gone down a bit. Um, I’m


now looking at it from a caring point of view rather than a loving point of

view, if you get my point, and that’s how it’s changed, yeah.

Interviewer: How does that impact on you?

Harold: Um, upsetting. ‘Cos, we were very much a team and very much

together. Um, we could discuss things. What we’re going to do, what we’re

not going to do. Or if we tried to discuss it now she’d have forgotten the

discussion 5 minutes later. So, you can’t plan anything with her. And that’s

it really. She’s just not the woman I married.

The fact that this experience was described only by caregivers of wives with dementia

is important in highlighting how caregivers of people with different conditions will have

different demands, stressors and losses that they will have to cope with along the way.

Specifically, it may be that only caregivers of individuals with conditions that impact one’s

identity and self will feel as though they are losing their partner. Furthermore, how someone

experiences such a loss is likely to be affected by factors such as the kind of relationship

someone had with their partner before the onset of the illness (Motenko, 1989), and one’s

values, e.g. what one values in a relationship.

Feelings of anger and frustration. All but one of the participants expressed feeling

anger or frustration at some point as a caregiver. However, each of these participants directed

their anger in a different direction. Brian directed feelings of anger towards services, “well I

don't mind doing the caring, but if a professional’s doing the caring wrong I get frustrated”.

Andrew directed his anger towards the Government:

Andrew: Yeah well it makes me frustrated because I know the system

should work, and I paid I think I worked out about a quarter of a million


pounds in the last 20 years in taxes. So, I thought really, it's about time that

we got something back…there is basically no state care. So, you're on own.

It's jokingly called self-funding, which means that everything you spend is

going to be out of your pocket…I realised it was difficult and it was

because of funding, and I get angry about that politically. Because I think

there are better ways of organising it.

Some participants also experienced frustration in relation to the care-recipient; Nick

described feeling frustrated towards his mother, particularly when she was perceived to be

doing something that made his task more challenging:

Nick: I can find myself frustrated at her a bit more than maybe I would

have done in the past because um, I’m trying to help and she’s trying to do

something she can no longer do and, unfortunately, she’s just getting in the

way. And I don’t like to tell her that but I do sometimes. I have to say

“look, I need the space to do this you can’t do it anymore I need the space

to do it”.

He spoke about teaching himself to try and adapt the way he responded to his mother

in stressful situations, as he could appreciate how difficult it must be for her to not be able do

things she used to be able to so easily anymore. In this way he demonstrated empathy and

compassion towards his mother despite feelings of frustration. Eddie also conveyed being

able to hold on to compassion despite sometimes feeling anger and frustration:

Eddie: I’ve gone through every emotion you can think of. I’ve gone

through fear, I’ve gone through worry, I’ve gone through stress, I’ve gone

through wishing she were dead but I’ve never wanted to kill her because I


love her, and therefore I’ve never felt hatred because I love my wife very

much.

On the other hand, Eddie suggested that he had at some point in the past felt anger and

doubt towards God. He spoke about how he had questioned God’s competence having

reflected on all the suffering in the world:

Eddie: …so you’ve blood disorders and brain disorders as a result of brain

cells and so on. And I was saying has God created us like this? And so on.

‘Cos I was a Christian obviously going to church, so I was interested in this

incompetence of God.

However, he later went on to say, “I’ve come to the conclusion that God is competent

and that there are reasons for everything including disease and such”, perhaps indicating that

he had somehow resolved his feelings of anger or doubt towards God. Kevin also spoke about

how feelings of anger had changed over time:

Kevin: I know that I probably wouldn’t be alive if it wasn’t for mum, so

I’m not angry at mum, I’m angry at- to be honest, I no longer have the

anger you know, it’s burned out a long time ago. A few years ago, the

anger burned through. ‘Cos you just become tired and then it just

dissipates. You know, you no longer got the energy inside you to be angry

at anything.

Finding Ways to Hold on to a Sense of Self

Caregivers spoke about things they did that helped them to be true to themselves

when they felt like their needs were not being met, e.g. if they were feeling unheard or

disconnected from people. They spoke about the importance of psychological space, finding


an outlet for anger, frustration, doubts or worries, finding new sources of satisfaction or

enjoyment in one’s life, and connecting with other caregivers. These could all be

conceptualised as ways of holding on to a sense of self or nurturing one’s values and identity

alongside the demands and challenges of the caregiver role.

The importance of psychological space. Four participants, all of whom were

husbands who cared for their wives, spoke about how important it was to have some time

away from the role, or to get some respite from time to time. This appeared to allow

caregivers to take their mind off caring and possibly get some psychological recuperation.

Many of the participants got this space by engaging in hobbies, as illustrated by Brian and

Andrew who enjoyed metal detecting and walking, respectively:

Brian: I still carried on my metal detecting [pause] and I still very much

enjoy that and I think it keeps me fit and it gives me a chance to get out,

forget about all the care business and let your mind wander and do

something keeping you fit-ish.

Andrew: So, what I do is go for a walk with my hearing with my earphones

on, and I put it on shuffle. So, I've got music like Bach then a bit of Blondie

and then some Beetles stuff and then Vivaldi, and because it's on shuffle I

don't know what's coming next…but that is, I find that enjoyable, and that

does sound selfish, but it is a bit of remission or um, you know a break

from the day to day grind.

The way Brian and Andrew felt about needing space was slightly different, despite

both being husbands caring for their wives. Brian owned how important it was for him to

have space, to the extent that he carved out time to himself each week, “I, I've designed in

with the caring so I can be away for little periods of time, which releases any pent-up stuff


inside me, for any frustrations, even anger sometimes”. Whereas for Andrew, needing time to

himself made him worry about being perceived as selfish, “it sounds very selfish, but the only

thing I really enjoy is being on my own”. This highlights how individuals will experience

feelings of guilt around the need to look after themselves or having time away from their role

differently depending on their own values and identity.

Andrew also spoke about having developed a new interest in twitter. This seemed to

have several functions, one of which was to provide a sort of psychological escape from

caring “this is not really to do with caring but it explains what I do to perhaps take my mind

off- It may be that this is sort of escapism”. However, having space to oneself was not only

achieved by engaging in hobbies. For Harold, this occurred when his wife went to bed, “I

think the only part of the day I enjoy is when she goes to bed about 10 o’clock, and I can sit

down quietly for an hour and a half, two hours before I go to bed”, and for Eddie, this

occurred when his wife went into a care home:

Eddie: And then, in January, as I say she fell over and went to hospital for 6

weeks. And then they put her in a home again. A nursing home this time

and they look after (her) all the time. And I feel a sense of relief to be

honest. Once she went into the home I felt [sighs] responsibility had gone.

And it was, I felt relief you know.

In a sense what comes through from these four participants, is the idea that having

space or distance from the role allows them to just be themselves and to nurture their own

needs and identity. This theme was only present for caregivers who were husbands, not

caregivers who were sons. As described earlier, sons seemed to speak about their role as

though they were constantly on call and as though having time to oneself was not even an


option. In fact, for one participant, psychological space from the care-recipient was so limited

that he felt like his identity had been moulded by the care-recipient:

Kevin: Probably [pause] what stands out in my life [pause] mum is very

possessive and clingy, and emotionally controlling, so mum uses- I’m not

susceptible to it so much these days but when I was on medication I was,

and all throughout my 20s, mum’s emotional, I don’t want to say blackmail

but mum’s emotional manipulation has made it so that I don’t know how to

not be me. I can no more be me than you cannot not be you, you see what I

mean? You can’t break out of being you, you’re always going to be you

and I’m always going to be me. And I, don’t know how to, to be anything

other than mum’s go-fetch person. But I always wanted to know what was

on the outside of that, you know. In part of my mind there’s another person

who manages to have a completely different life, and you know, what’s he

up to?

This theme highlights how one may experience one’s identity as being compromised

if they are unable to get psychological space from their role. Whether or not, or the extent to

which a caregiver experiences their identity as compromised depends on factors such as their

values, personality and relationship with the care-recipient.

Finding an outlet for anger, frustration, doubts or worries. Two caregivers spoke

about finding active ways to vent their frustrations, doubts or worries, in a way that was

helpful or cathartic. For Andrew, twitter provided an outlet for some of the feelings of anger,

frustration and disappointment he felt towards the Government both about caring and other

areas of politics. Twitter enabled him not only to express his feelings and grievances, but to

also feel heard, “I’ll tell you what does help, hugely, you’ll probably smile, is twitter.


Because it doesn’t matter what you say, to an extent, and suddenly you find there are

hundreds of people out there who actually agree with you”.

Having reflected on all the first and second-hand pain and suffering he had

experienced in life, Eddie appeared to go through a period of questioning his faith in God. He

drew on his interest in religion to write a book, which gave him an outlet for the doubts and

suffering he seemed to be experiencing at the time; he expressed that he found it “very

cathartic” to write this book.

It could be suggested that one participant tried to avoid feelings of anger and

frustration by trying to maintain control and order in his life:

Brian: It gives me self-satisfaction that we, I can still have the ability to

organise things, and get things done. And when I see things going wrong I

can get things done to get it better next time around sort of thing. Y'know,

so from that point of view I think caring- If I wasn't a carer where I'd be, I

don't think I'd be that same y'know...sort. Sometimes me missus calls me

controlling. But then you have to be, y'know, if you’re gonna get things

done things have to be set up and done in a particular way otherwise you

get chaos. We don't really want chaos.

While this is not directly an outlet for anger, it helps to illustrate how one’s

personality or way of being might impact on feelings and beliefs about caregiving and how

one might cope with these.

Finding new sources of satisfaction or enjoyment in one’s life. Two participants

spoke clearly about finding new interests that gave them a new sense of being or belonging.

In some sense this was like the development, discovery or re-discovery of one’s personality

and identity. This was very much the case for Kevin who felt like he had been unable to


develop his own identity because of the demands that caregiving had placed upon him from

an early age. Having been through periods of severe depression he started to volunteer,

developed new interests, and was on a journey of discovering who he was:

Kevin: I’m a volunteer at the local bike project so I work on bikes a couple

of times a week. That keeps me from going completely mad because it

gives me some other place where I can meet people and talk and I’m trying

to get back to some form of identity because I really don’t know who I am.

You know, I really haven’t got a clue. And that’s probably why I like

talking so much, I think I’m finding out something about me, because I

haven’t got a clue who I am.

He was also part of a charity that supported him along his journey of discovery by

teaching him new skills, introducing him to new activities and connecting him with new

friends. This gave him a sense of hope about the future that he had not felt before. He

described them as “building me up, turning me into somebody new”, as having saved him,

and as having provided him a hope for the future where before there was none:

Kevin: Being at (the charity) gives me a feeling that some- That there might

be some kind of future possibly. You never know, ok. You know nothing’s

certain but at least there’s better than what I had before and, before there

was nothing, it was just me and mum and no future.

Another participant, Harold, found new enjoyment from life from developing a new

romantic relationship with someone. He spoke about meeting a woman with whom he is able

to share his hobbies and interests, who he is able to go on holiday with, who shares values

with him, and with whom he can be intimate with, “It’s changed my life, made me very

happy. I speak to my lady friend every single day on the telephone”. The accounts from both


Kevin and Harold evoke a sense of trying to re-negotiate the balance in their lives, having

devoted a substantial number of years to caring for their respective care-recipients, and now

choosing to engage in things that give them a sense of purpose or happiness. Perhaps this is a

process that occurs, where after having learnt to cope with adversity and negative feelings,

one can do things that align with one’s identity and find things that evoke feelings of joy in

their lives.

Connecting with other caregivers. While all the participants were involved with

local charities, three participants spoke about the benefits of attending charity run groups and

meeting other caregivers. This allowed people to see that they are not alone in their situation,

see how their own situation could potentially be worse and share their knowledge and

experience with other caregivers:

Harold: And when you’re at these meetings you can realise though your life

is hard, it is not as hard as a lot of others. But they’re all going through the

same thing. And you can talk about your experiences, how can I get help in

this, how can I get help in that?

Brian spoke about how he volunteered to help run the local group, which he appeared

to be quite passionate about. It appeared to give him a chance to share his knowledge, use his

leadership skills, and give him something to be proud of:

Brian: So, I volunteered, and two other ladies volunteered to run the group,

and we run it all last year very successfully. And we get speakers in tell us

about things, and as carers we share our experiences and y'know, like a

carer's assessments, people didn't know hadn't even heard of that, y'know in

a way, and so um, we'd pass on details and so, we've, we're now running


our own group and I'm one of the leaders for that, and we're actually- (the

charity) say we're the flagship group now.

Andrew also spoke about how using twitter allowed him to feel connected to like-

minded people as “suddenly you find there are hundreds of people out there who actually

agree with you”. Finally, Kevin spoke about what a profound impact being part of a group

was having on his life, “I’m meeting new people, making new friends, and um, maybe I’ll

have a new life, yeah”. Kevin’s world had become very narrow, having lived with and been a

caregiver for his mother his whole life: being part of a group was helping Kevin to build up

his self-esteem, develop his sense of identity, and explore hopes for the future in a way he

had not been able to do before.

Experiencing Caregiving as Bringing One Closer to One’s Values

The final theme is one where caregivers experience their role as bringing them

somewhat closer to their values or things they value in life. In this way it is the closest

relation to a PAC, but rather than having a positive experience as a result of caregiving, they

have a positive experience because they are acting in line with their values or needs.

Nick, a son caring for his mother affected with chronic pain and mobility issues

described how “on the whole it (caregiving) can be quite fun”. He described how caregiving

was fun because he and his mother could “go out together a lot more than we used to, and we

sort of get time to chat, enjoy coffee a lot more than we used to”. He spoke about how “it’s

nice sort of to get back to the countryside” with his mother and of how spending time with his

mother brought back “the memory of the sort of the holidays we used to have” when he was a

child. The things that Nick spoke about enjoying could be conceptualised as things that

brought him closer to his values, e.g. spending time with family, being outdoors/with nature.


Nick and Kevin, both caregivers for their mothers, spoke about how they valued being

able to help someone else. Nick described:

Nick: …you’re doing it for someone who you can see appreciates it as

opposed to maybe in a corporate environment where they appreciate it but

they sort of don’t- they hide it, it’s like “oh you did your job well done”.

Whereas in this sort of environment it’s definitely far more gratifying work

because you see the effect you’re having on the people you’re helping.

And, I think that’s one of the nicest things about it.

Nick perhaps feels a sense of pride or satisfaction from receiving acknowledgement

from his mother for the care that he provides. Kevin spoke about feeling like there would be

something wrong with him if he did not care for his mother. Caregiving appeared strongly

tied to his values:

Kevin: I think, some people would say I’m a- probably don’t understand

why I’m a carer, you know, “why are you a carer? Why are you with- why

are you looking after you mum? …”. And part of me would feel something

was wrong with me if I had left mum. That, if I had done that I would be

doing something bad, really bad if I had- I don’t know what it is but I’ve

had this feeling all my life. There’s some sort of responsibility I have

because I’ve seen my mum be really unwell and I’ve been unwell myself,

so I’ve just got this feeling inside me that if I left her I’d be doing

something really really wrong.

Although this theme is about how much caregiving aligns with participants’ values,

the extent to which this happens could be influenced by one’s context. Both caregivers in this

theme were sons who had cared for their mothers for most of their lives, and certainly for


their whole adult life. This is a stark contrast to the men who unexpectedly became caregivers

later in their lives for wives who they had always known when in good health, and as such

factors including age, relationship to the care-recipient or how long one has been a caregiver

might influence how much one’s values are consistent with caregiving.

Discussion and Implications

Given the need to address the conceptual confusion around what constitutes and leads

to a PAC, the purpose of this study was to investigate how male caregivers describe their

experiences of caregiving. IPA was chosen to do this in an exploratory way. Three themes

were identified that reflect caregivers’ experiences: experiencing losses and frustrations from

caring for a loved one, finding ways to hold on to a sense of self, and experiencing caregiving

as bringing one closer to one’s values. As will be discussed, PACs did not directly emerge

from the data set as one may have expected at the onset of this study, but rather what was

identified was the importance of identity within the caregiver experience. . As such, the

themes identified in this study will be discussed in relation to the overlapping concepts of

identity and values (Hitlin, 2003; Spini & Jopp, 2014).

During the interviews, participants seemed more readily able to identify difficult

emotions and experiences related to caregiver then PACs. It therefore felt important to

acknowledge the challenges and loss associated with a caregiver role within the findings,

particularly given how male caregivers are commonly reported to express less burden and

distress than female caregivers (e.g. Fitting, Rabins, Lucas & Eastham, 1986). The theme

experiencing losses and frustrations from caring for a loved one describes some of the

challenges that individuals experience when they take on a caregiving role, including feeling

as though one is losing a part of oneself and/or a life-long partner. Essentially, this theme is

about feeling as though one is losing the things that one values in life, such as one’s freedom


or relationship, which may then lead to feelings of anger and frustration. The way one

experiences losses and frustrations seemed likely to depend on one’s values or identity. For

instance, each participant directed feelings of anger and frustration towards a different service

or person suggesting that how one experiences anger is dependent on things that one

personally values and feels aggrieved by (Harter, 1990; Kuppens, Van Mechelen, Smits, De

Boeck & Ceulemans, 2007; Lönnqvist, 2009). The way caregivers experience loss and

frustration is also likely to depend on one’s specific caregiver circumstances or context, such

as the health condition of care-recipient or one’s relationship to the care-recipient. This was

seen in the sub-theme losing a life-long partner, which was only described by men who cared

for a loved one with dementia.

All participants spoke about things they did in order to look after their own needs

while still taking on the multiple demands associated with caregiving. The theme finding

ways to hold on to a sense of self is therefore about finding ways to look after and nurture

one’s identity and values in the face of adversity, or when one feels like their identity and

needs are being neglected. This is not necessarily a way of coping with stress as previous

literature may have suggested (e.g. Pearlin et al., 1990), but a way of bringing one closer to

one’s values when one’s sense of self is at risk of being diminished as a result of caregiving

(Breakwell, 1986). This is an important distinction to make given the confusion that

sometimes arises in the PACs literature. For example, being reassured by spiritual beliefs

during difficult moments could be conceptualised a coping strategy (Farran et al., 1991),

whereas taking time to pray could be a way to get psychological space and hold on to a sense

of self. It is therefore important to decipher what is driving a behaviour. On the other hand,

the theme experiencing caregiving as bringing one closer to one’s values reflected

experiences of caregiving aligning with one’s sense of self. This theme is the most closely

related to PACs, and could allow PACs to be reconceptualised as experiences that allow one


to be true to one’s values and needs. For example, when caregivers report experiencing

greater compassion and spirituality from caregiving (Netto et al., 2009; Sanders, 2005), it

may be that caregiving brings a person closer to their value of spirituality. This

reconceptualisation of caregiver experiences may warrant results from this study to be

considered in the context of identity-orientated theories, particularly given the absence of

identity and values from most existing theories of coping and PACs (e.g. Pearlin et al., 1990).

Results of this study could be considered in terms of Breakwell’s identity process

theory (IPT; Breakwell, 1986). One of the many tenets of IPT is that identity is regulated by

processes of assimilation/accommodation and evaluation (Breakwell, 1986, 2014). Breakwell

(2014) posits that:

Assimilation and accommodation are two components of one process.

Assimilation refers to the absorption of new components into the identity

structure; accommodation refers to the adjustment that occurs in the

existing structure in order to find a place for new elements. The process of

evaluation entails the allocation of meaning and value/affect to identity

contents, new and old. (pp. 29-30)

A second tenet of IPT is that when identity is threatened one engages in coping

strategies to try and remove or modify the threat to identity. In terms of the results of this

study, losses and frustrations could be conceptualised as a threat to identity, ways to hold on

to a sense of self could be conceptualised as Breakwell’s coping strategies, and experiencing

caregiving as bringing one closer to one’s values could be conceptualised as the successful

engagement in processes of assimilation/ accommodation and evaluation (Breakwell, 2014).

Breakwell’s theory also allows identity to be seen as a fluid construct that changes over time

(Spini & Jopp, 2014; Whitbourne, 1999). If the way in which a caregiver experiences their


role is indeed underpinned by a need to express and be true to their identity, then how much a

caregiver is able to live in line with their values could be one way of conceptualising and

measuring well-being. Particularly given that all participants spoke about losses and

challenges and found it difficult to easily identify PACs, exploring caregiver experiences in

relation to values and identity may be more helpful than thinking about experiences as either

positive or negative.

Reflexivity

As PACs were at the core of the project, questions were initially designed to find out

which–if any–PACs caregivers could identify. However, with the support of supervision it

was decided to investigate caregivers’ experiences more broadly, so as not to miss valuable

information. As such, PACs were only asked about directly at the end of the interview if

participants had not already mentioned them. The motivation to investigate PACs therefore

had an influence on the way the interview schedule was initially developed. However, one of

the first observations that the author made when conducting the interviews was how difficult

it was for caregivers to naturally talk about PACs. The author remained open and curious

during the interviews using skills obtained through the Clinical Psychology Doctorate, and

explored experiences which the participants felt were important while being careful not to

influence participants to describe PACs. While there was an initial temptation to look for

PACs in the data, regular supervision and reflections on each interview helped the researcher

to remain open and curious during the analysis, hear what participants were saying, and

capture this within the findings. (see Appendix J for extended self-reflexivity).

Limitations

A main limitation of this research is that the sample was lacking in homogeneity and–

in hindsight–would have benefited from being limited to caregivers who had a particular


relationship, e.g. spousal relationship, with a care-recipient of a particular difficulty, e.g.

dementia (Smith et al., 2009). However, at the time of deciding on a sampling strategy there

was little high-quality research to indicate which factors to consider for homogeneity. What

has become apparent through the use of IPA in this study, is how experiences of caregiving

may differ based on–but not limited to–one’s relationship to the care-recipient, the health

condition and needs of the care-recipient, the living status of the caregiver and care-recipient,

and the life experiences of the caregiver. For example, in this study only husbands spoke

about the importance of having psychological space, only caregivers of someone with

dementia spoke about the difficulty of losing your life-long partner, and only sons spoke

about experiencing caregiving as bringing them closer to their values. The purpose of this

study was not to make generalisations about specific subgroups of caregivers, but to enhance

one’s understanding of positive caregiving experiences. IPA helped to facilitate an

exploration of nuanced caregiver experiences and helped to highlight differences between

caregivers that may warrant further research.

Implications for Future Research and Clinical Practice

In 1997, Kramer suggested that there is a need to move away from using the absence

of pathology as an indicator of caregiver well-being to identifying PACs. However, so far

research into PACs has been sparse, hindered by a difficulty in operationalising the term

PACs, and the lack of a comprehensive theory from which to understand how PACs relate to

well-being. Results from this study suggest that both positive and negative caregiver

experiences could be thought of in the context of identity, and how much one’s caregiving

role aligns with one’s identity. Values and identity, while still multi-faceted and complex

constructs, could be easier to operationalise and measure than “PACs” (e.g. Ryff 1989a,

1989b). For example, the extent to which one values positive relations with others, mastery,


having a purpose in life, personal growth, or even self-actualisation, and is living in line with

these values could be a positive indicator of well-being (Maslow, 1943; Ryff 1989a, 1989b).

Therefore, in line with Kramer’s (1997) original ideas, it is proposed that there needs to be a

shift towards using positive psychology indicators, such as the extent to which one is living a

life in line with their values, as an indicator of caregiver well-being. In order to facilitate this

novel shift, the concepts of identity and positive well-being indicators require further

exploration with caregivers of different sub-groups, such as female caregivers, carers of

different age groups and carers of care-recipients with different health conditions. Exploring

caregiver experiences in this new light may ultimately lead to rethinking the way caregiver

interventions and support packages are designed and implemented.

Conclusion

To date there has been a distinct conceptual confusion over what constitutes a PAC

and how to investigate it in a meaningful way. It is argued that this confusion stems from

both an absence of a shared language around PACs and an absence of a positive psychology

theory from which to understand the caregiver experience. Furthermore, research

developments are hindered by a lack of research into specific subgroups of caregivers, such

as male caregivers. The aim of this study was therefore to use qualitative research methods to

investigate how male caregivers describe their experiences of caregiving. Three themes were

identified which highlighted how caregivers can experience caregiving as potentially

encroaching on their personal identity and/or as aligning closely with their values. When the

former is experienced, caregivers appear to engage in attempts to bring one closer to their

values and personal identity. It is therefore recommended that there is a shift away from

thinking about positive and negative aspects of caregiving, towards thinking about how much


caregiving aligns with one’s values, and how identity could be used as a positive psychology

indicator of caregiver well-being.


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Appendices


Appendix A Journal guidelines for authors (abridged version)

Appendix B Detailed rationale for choosing IPA

Appendix C Interview schedule

Appendix D Letter confirming ethical approval for the study

Appendix E Information flyer emailed during recruitment phase

Appendix F Participant information sheet

Appendix G Participant consent form

Appendix H Detailed account of coding process

Appendix I Example of transcript and analysis

Appendix J Extended self-reflexivity


Appendix A

Journal guidelines for authors (abridged version)

[Removed]


Appendix B

Detailed rationale for choosing IPA

Interpretative phenomenological analysis (IPA) was deemed an appropriate qualitative method of analysis to use in this research project for several reasons. IPA is concerned with how individual’s experience and make sense of the world around them (Smith et al., 2009; Smith & Osborn, 2008), which was at the essence of the research question. The analysis involves a double hermeneutic where “the participants are trying to make sense of their world; the researcher is trying to make sense of the participants trying to make sense of their world” (Smith & Osborn, 2008, p. 53). As such, the phenomenological aspect of IPA concerns the participants experience or perception, and the interpretative aspect concerns the researcher’s relationship to the participant and data. This double hermeneutic is important, as it appreciates that an individual may not always be able or willing to verbally share their experience with a researcher in its entirety, and as such a researcher needs to engage in some level of interpretation in order to understand the experience of the individual. This method of analysis complemented the research question, as the aim was to explore individual’s idiographic experiences of caregiving.

IPA was chosen over other qualitative methods such as thematic analysis because of the way in which the researcher can engage with data. The interpretative nature of IPA allows the researcher to go beyond categorising the data into descriptive themes, and engage in an in-depth exploration of each individual’s experiences (Howitt, 2010). Therefore, while a researcher may generate themes that can be found across the data, the nuances of an individual’s experience can be captured within a theme. Given that the research question was concerned with experience rather than language, IPA was chosen over discursive methods of analysis.


Appendix C

Interview Schedule

1) How would you describe your experience of being a caregiver? What has the experience been like for you?

2) Has your life changed at all since becoming a caregiver? In what ways?3) Can you tell me about how being a caregiver has impacted on your life?

Possible prompts: relationships/hobbies/values/skills/outlook on life/views of yourself/personality?

4) Can you tell me about if you have ever felt a sense of reward, joy or satisfaction from your role?

5) Is there anything you feel like you might gain from the role? 6) Are there any other things that you feel are important for me to know?


Appendix D

Letter confirming ethical approval for the study


Appendix E

Information flyer emailed during recruitment phase

Are you a man who provides informal/unpaid care for a loved one with a physical health difficulty?

I am interested in hearing about any positive experiences of caregiving you might have had, or what you perceive to be the positive aspects of caregiving. You must be 18 years old or

over, live in the UK, and identify as being a male caregiver of an individual with a physical health difficulty in order to participate.

If you are interested in taking part in an interview about your experiences of being a caregiver, then please contact the researcher, Miss Amit Jagdev, at [email address

removed].


Appendix F

Participant information sheet

Participant Information Sheet [version 1, 08/10/2016]

What are the perceived positive coping strategies, gains and positive outcomes that male caregivers experience: A qualitative study

IntroductionI am a Trainee Clinical Psychologist at the University of Surrey and I would like to invite you to take part in a research project. Before you decide you need to understand why the research is being done and what it will involve for you. Please take the time to read the following information carefully and ask questions about anything you do not understand. You may talk to others about the study if you wish.

What is the purpose of the study?The aim of this study is to find out some of the positive ways that people cope with their caregiving role, what people might gain from or enjoy about being a caregiver, and what other positive experiences people who provide care might have. We have found that much of the research so far has focused on how burdensome the caregiver role is, and what people get out of caregiving is often overlooked, which is the reason we have chosen to look specifically at the positive aspects of caregiving. This is not to underestimate the challenges that caregivers experience, but this research hopes to provide a more balanced understanding of caregiver’s experiences. We are also specifically looking at the experiences of males who identify as being a carer for an individual with a physical health difficulty, such as cancer or dementia. The reason for this is that men are often underrepresented in research, and the ways that men experience being a caregiver might be very different to the way that women experience being a caregiver. We hope that by asking men about their positive experiences of caregiving, we might learn new information that could be incorporated into interventions that are designed to improve caregiver outcomes.

Why have I been invited to take part in the study?You have been invited to take part in this study because you have expressed an interest in taking part in an interview about the positive experiences of being a male caregiver. A carer is anyone who provides unpaid care for a friend or family member who struggles with an illness, disability, mental health problem or addiction, who cannot cope without their support.

To be eligible to take part in the study, you must meet the following criteria:- Be male- Be aged 18 or over- Be an informal/unpaid caregiver for an individual with a physical health difficulty


- Live in the UK

About 15-30 participants in will take part in this study, all of whom will be from the UK.

Do I have to take part?No, you do not have to participate. If at any point before and/or during the interview you change your mind, you can withdraw your participation from the study. You can also request for your data to be withdrawn from the study after the interview has been conducted, until the data has begun to be transcribed, without giving a reason and without prejudice.

What will my involvement require?If you do decide to take part in this study, you will be given this information sheet to keep and asked to sign a consent form. Interviews can take place either in person at the University of Surrey, at another agreed location closer to you, or over Skype. Should you choose to participate over Skype, this information sheet and a consent form will be posted out to you. The consent form must be signed and returned in the envelope provided, before the interview can commence. Should you choose to attend the interview in person, the consent form will be signed on the day of the interview itself.

The research will last up to 2 years overall, but your involvement will only be required for up to 1 hour, for the interview to take place. Interviews will be recorded using either an audio or video recorder, so that they can be transcribed at a later date.

Should you choose to come to the University of Surrey for the interview, your travel expenses will be reimbursed, provided that you can show a valid travel ticket for the day of the interview. Expenses will be paid up to the value of £20. If you anticipate your travel to be higher than this, we can conduct the interview over skype or in a location that is mutually agreed.

What will I have to do?If you would like to take part then please email me at [email address removed]. We will then arrange a time that we can either meet in person or speak over Skype.

What will happen to data that I provide?Any data you provide will be treated confidentially. This includes personal data such as email addresses that you may wish to provide us, and research data from the interview itself. Research data are stored securely for at least 10 years following their last access and project data (related to the administration of the project, e.g. your consent form) for at least 6 years in line with the University of Surrey policies.

What are the possible disadvantages or risks of taking part?Due to the nature of some of the conversations we might have during the interview, you might find that the interview becomes distressing or emotionally charged at times.


Remember, your participation is completely voluntary, and you may ask for a break at any time during the interview, or ask for the interview to be terminated if you wish to.

What are the possible benefits of taking part?This interview might give you an opportunity to speak about things that might ordinarily not discuss with others or think about. For some people, this might be quite an enjoyable experience in which they are able to feel heard. For many people there may be no direct benefit of taking part; while this study might not have a direct impact on you, our work hopes to improve the experiences that caregivers have overall. More specifically, this study hopes to improve our understanding of caregiver’s experiences, so that effective psychological interventions might be developed that can help to support caregivers who are struggling in their roles.

What happens when the research study stops?At the end of the study, a summary of the findings can be sent to you, either via post or by email. Please ensure you let me know if, and how you want to receive these results.

What if there is a problem?Any complaint or concern about any aspect of the way you have been dealt with during the course of the study will be addressed; please contact Miss Amit Jagdev, Principal Investigator at [email address removed] in the first instance, or my Supervisor, Dr Kate Gleeson, at [email address removed]. You may also contact the Head of Department and Programme Director, Dr Mary John at [email address removed].

Will my taking part in the study be kept confidential?Yes. All of the information you give will be anonymised so that those reading reports from the research will not know who has contributed to it. Data will be stored securely in accordance with the Data Protection Act 1998 that unauthorised individuals will not have access to them. However, should you disclose that you or someone else is at risk then the researcher may need to report this to an appropriate authority. This would usually be discussed with you first.

Examples of those exceptional circumstances when confidential information may have to be disclosed are:- The researcher believes you are at serious risk of harm, either from yourself or others- The researcher suspects a child may be at risk of harm- You pose a serious risk of harm to, or threaten or abuse others- As a statutory requirement e.g. reporting certain infectious diseases- Under a court order requiring the University to divulge information- We are passed information relating to an act of terrorism

Full contact details of researcher and supervisorResearcher: Miss Amit Jagdev - [email address removed]Research Supervisor: Dr Kate Gleeson - [email address removed]

Who is organising and funding the research?


This research is organised and funded by the University of Surrey. Who has reviewed the project?This research has been looked at by an independent group of people, called an Ethics Committee, to protect your interests. This study has been reviewed by and received a favourable ethical opinion from the Faculty of Health and Medical Sciences Ethics Committee, at the University of Surrey.

Thank you for taking the time to read this Information Sheet.


Appendix G

Participant consent form

Consent Form [Version 1, 08/10/2016]

What are the perceived positive coping strategies, gains and positive outcomes that male caregivers experience: A qualitative study

Please initial each box

I have read and understood the Information Sheet provided (version 1, date 08/10/2016). I have been given a full explanation by the investigators of the nature, purpose, location and likely duration of the study, and of what I will be expected to do.

I have been advised about any disadvantages on my health and well-being which may result. I have been given the opportunity to ask questions on all aspects of the study and have understood the advice and information given as a result.

I agree to comply with the requirements of the study as outlined to me to the best of my abilities.

I agree for my anonymised data to be used for this study.

I give consent to the interview to be audio and/or video recorded.

I give consent to anonymous verbatim quotation to be used in reports.

I understand that all project data will be held for at least 6 years and all research data for at least 10 years in accordance with University policy and that my personal data is held and processed in the strictest confidence, and in accordance with the Data Protection Act (1998).

I agree for the researchers to contact me to provide me with a study results summary.

I agree for the researchers to contact me about future studies.

I understand that I am free to withdraw from the study at any time without needing to justify my decision, without prejudice.

I understand that I can request for my data to be withdrawn until the data has begun to be transcribed and that following my request all data already collected from me


will be destroyed.

I confirm that I have read and understood the above and freely consent to participating in this study. I have been given adequate time to consider my participation.

Name of participant (BLOCK CAPITALS) ......................................................

Signed ......................................................

Date ......................................................

Name of researcher taking consent ......................................................(BLOCK CAPITALS)

Signed ......................................................

Date ......................................................


Appendix H

Detailed account of coding process

For the purposes of the empirical paper, transcripts of individual interviews were analysed on a case-by-case basis using interpretative phenological analysis, prior to themes across transcripts being assessed for convergence and divergence. The process of this analysis was guided by both Smith and Osborn (2008) and Willig (2001).

To begin the analysis, the researcher read through one transcript and made annotations in the left-hand margin. Annotations related to initial observations, including significant things the participant had said, the participants choice of language, thoughts and feelings evoked in the researcher, and attempts to summarise key passages. Comments were also made on words or topics that appeared to be repeated throughout the transcript. The transcript was read in this way twice to help the researcher familiarise herself with the data.

The researcher then returned to the beginning of the transcript, and began to take note of emergent themes in the right-hand margin. At this point the researcher paid careful attention to both the initial annotations and what was being said by participants, to try and capture what was being conveyed in the interview. The transcript was read and re-read to ensure any interpretations made reflected participants experiences. Initial themes were then printed out and themes were compared and contrasted, and similar themes were clustered. During this clustering process, the researcher referred back to the original transcript to check that themes encapsulated the words of the participant. Some themes relating to similar topics were clustered, becoming sub-themes of a super-ordinate theme. Themes and sub-themes were organised into a summary table with reference to examples in the transcript (see Appendix I). At this stage, themes that lacked evidence were dropped from the analysis. This process was continued for each transcript so that each transcript was analysed independently of the previous ones. The researcher was careful to immerse herself in each transcript, to help reduce previous analyses influencing subsequent analyses. In order to enhance credibility, the researcher attended several workshops in which peers verified whether themes reflected the data. Furthermore, the researcher engaged in a process of reflexivity throughout the analysis in order to enhance credibility (see Appendix J). Themes were also checked and discussed in depth with the project supervisors who both specialised in using qualitative methods. These supervisors helped to ensure that themes closely reflected the data rather than reflecting the researcher’s own assumptions or biases.

Themes from each participant were then compared for convergence and divergence, before an overarching set of themes was identified. This was done by printing out all super-ordinate themes and sub-themes and comparing similarities and differences. As before, while some themes were amalgamated, themes that lacked evidence were dropped. A final list of themes was arranged into a table with reference to examples in the transcripts. Titles of each theme were discussed with the supervisors of the research project, to help ensure they reflected the data collected.


Appendix I

Example of transcript and analysis

Tables I1 and I2 show extracts of transcripts with initial notes and emergent themes. Tables I3 and I4 show a list of themes and sub-themes that were identified from the interviews with Kevin and Harold. Finally, following my initial analysis of themes across the data set, discussions from supervision and engaging in reflexivity changed my perspective on the themes slightly (see Appendix J). Table I5 shows a list of initial master-themes and sub-themes, before they were reworked.

Table I1

Extract from interview with Kevin

Notes Transcript Emerging themes

Feeling controlled by mum

Manipulated. Emotional abuse?

Unable to be anybody else (identity)Break out = stuck, confined

Don’t know how to be anybody else – feeling trapped in identity

Wondering who else he could have beenManages = escape, break free

Minimal social lifeMissed out on having a social lifeSacrificed?

P: Probably…what stands out in my life…mum is very possessive and clingy, and emotionally controlling, so mum uses- I’m not susceptible to it so much these days but when I was on medication I was, and all throughout my 20s, mum’s emotional, I don’t want to say blackmail but mum’s emotional manipulation has made it so that I don’t know how to not be me. I can no more be me than you cannot not be you, you see what I mean? You can’t break out of being you, you’re always going to be you and I’m always going to be me. And I, don’t know how to, to be anything other than mum’s go-fetch person. But I always wanted to know what was on the outside of that, you know. In part of my mind there’s another person who manages to have a completely different life, and you know, what’s he up to? And, you know, so, because I don’t have much of a social life- that’s getting better now that I’m with (the charity), that’s something that I really missed out on.

Feels controlled by care-recipient

Stuck in identity

Caregiving is his identity

Under-developed social life


Table I2

Extract from interview with Harold

Notes Transcript Emerging themes

She’s not the same woman I marriedLove has dwindledLooking at it from caring view not love

Upsetting.Used to be a team - lost teamUsed to discuss things - change

Memory impacts relationship

She’s not the woman I married – lost partner

P: Changed a bit…yes it has. Whereas um, I suppose because she’s mentally not with me, she’s a different woman to what I married. I suppose my love has gone down a bit. Um, I’m now looking at it from a caring point of view rather than a loving point of view, if you get my point, and that’s how it’s changed, yeah.I: How does that impact on you?P: Um, upsetting. ‘Cos, we were very much a team and very much together. Um, we could discuss things. What we’re going to do, what we’re not going to do. Or if we tried to discuss it now she’d have forgotten the discussion 5 minutes later. So, you can’t plan anything with her. And that’s it really. She’s just not the woman I married.

Not the woman I marriedLove has faded

Sadness

Loss of wife/partner

Table I3

Table of super-ordinate themes and themes from interview with Kevin

Themes Line Key wordsNew opportunities for future

New friendsNew skillsHope, positivity, reason to live

24881417

New people, friends, lifeCommunication, bikesFuture, sense of purpose

Negative impact of caregivingRestricted social lifeLoss of identityLow self-esteemGrieving life he didn’t have

66500393157

World shrank, isolatedDon’t know who I amThick-o, communicationNot normal, missed out on


Process of identity developmentUnsure of current identityLearning about selfDeveloping new interests

500502496

Don’t knowFinding out about meBuilding me up, someone new

Table I4

Table of super-ordinate themes and themes from interview with Harold

Themes Line Key wordsCaregiving interrupts your life

Lose friendsLose hobbies/free timeCaring is 24/7

10278111

LossExpensive can’t leave wife24 hours, continuous

You lose your wifeLove has fadedCan’t do things we used to enjoySadness

182269180

Not the sameUsed to, can’t plan aheadLoss, upsetting

Feelings of depressionThinking about self makes me depressedSupport groups help you see you’re not aloneNeed for respite

398123148

Don’t think of myself at allOthers going through sameFamily, no time, alone

Table I5

Table of initial master themes and sub-themes from across the data set

Master theme Sub-theme1.0 The impact of caring for someone with a long a long-term condition

1.1 Self-sacrifice

1.2 Losing your life-long partner1.3 Feelings of anger and frustration

2.0 Coping with the impact of caring 2.1 The importance of psychological space2.2 Finding an outlet for anger, frustration, doubts or worries2.3 Finding new sources of satisfaction or enjoyment in one’s life2.4 Connecting with other carers

3.0 Positive aspects of caregiving 3.1 Going out and doing fun things together4.2 A sense of gratification from being appreciated by someone

4.0 Reasons that one provides care 4.1 Keeping her at home, not in a home4.2 Sense of duty and responsibility


Appendix J

Extended self-reflexivity

[Removed]


Part 2 - Literature Review

The Perceived Gains and Positive Aspects of Caregiving: A Review of the Literature


Abstract

Background and Objectives: While the concept of positive aspects of caregiving was

introduced to the caregiver literature over 20 years ago, what constitutes and leads to a

positive experience of caregiving in relation to dementia is still unclear. Therefore, the aim of

this literature review was to integrate a quality analysis into the synthesis of qualitative

literature on how dementia caregivers describe positive aspects of caregiving, in order to help

clarify some of the conceptual confusion in the area. Research Design and Methods:

PsycINFO, Medline and Web of Science were searched for the following key concepts:

caregiver (caregiver OR carer), dementia (dementia OR Alzheimer’s) and positive aspects of

caregiving (satisfaction OR uplifts OR rewards OR gratifications OR growth OR enjoyment

OR positive aspects of caregiving OR benefit OR gain). Results: 10 articles were identified

and subjected to a quality analysis. 5 themes were identified: a positive mindset, personal

growth, a sense of mastery or achievement, feeling closer to the care-recipient and spiritual

growth. Discussion and Implications: While there appeared to be some common themes

amongst the research articles, there was also a large variation in the quality of the articles

included in this review. Further research is needed to clarify conceptualisations relating to

positive aspects of caregiving.

Keywords: dementia, qualitative, quality analysis


Background and Objectives

The term caregiver is often used to describe people who provide informal or unpaid

care to a loved one with a long-term mental or physical health difficulty. While providing

care in any capacity can be difficult, providing care to an individual with dementia is thought

to be particularly stressful due to the specific problems associated with dementia, e.g.

behavioural difficulties or progressive deterioration of the care-recipient (Pinquart &

Sörensen, 2003). More specifically, dementia caregivers are thought to be more negatively

impacted than non-dementia caregivers in terms of employment, leisure and family

relationships (Ory, Hoffman, Yee, Tennstedt & Schulz, 1999). Furthermore, dementia

caregivers are also likely to experience a range of negative physical and mental health

problems, such as fatigue and depression, which may have a negative impact on their quality

of life (Carers UK, 2015; World Health Organisation, 2012). In the UK, at least 700,000

people (around 1% of the UK population) are currently believed to provide informal care for

a loved one with dementia alone, a figure that is estimated to rise to 1.7 million people by the

year 2050 (Lewis, Karlsberg Schaffer, Sussex, O'Neill & Cockcroft, 2014). The increasing

prevalence of dementia and dementia caregivers has led to a wealth of research being

conducted to try and improve outcomes for both caregivers and care-recipients (Etters,

Goodall & Harrison, 2008).

Although there has been a lot of research into the experiences of dementia caregivers,

much of the research into caregiver well-being thus far has stemmed from models of stress

and coping, i.e. how to cope with the adversity or distress associated with caregiving

(Lazarus & Folkman, 1984; Pearlin, Mullan, Semple & Skaff, 1990). For example, it has

been suggested that interventions that help dementia caregivers to develop adaptive coping

strategies, such as problem-focused coping, might lead to reduced levels of perceived burden


(e.g. Chen, Huang, Yeh, Huang & Chen, 2015; Kneebone & Martin, 2003). While there is a

lot of utility in thinking about coping strategies, it has been argued that the current

understanding of dementia caregiver well-being has been skewed by literature focusing on

the absence of pathology as an indicator of well-being, i.e. that lower levels of perceived

burden indicate improved well-being (Kramer, 1997).

Given that coping theories focus on how to improve well-being through the

alleviation of stress or burden, they do not adequately account for how positive experiences

of caregiving might improve well-being for dementia caregivers. Such a problem-focused

perspective does not account for positive aspects of caregiving (PACs). PACs is a term that

has been in the literature for at least 20 years. However, because of its broad and subjective

nature, it is a term that has proven to be very difficult to define or conceptualise; some

researchers have conceptualised PACs as the experience of gain (Pearlin et al., 1990),

satisfaction (Lawton, Kleban, Moss, Rovine & Glicksman, 1989), and uplift (Kinney &

Stephens, 1989) as a result of caregiving. Nevertheless, PACs are important to consider not

only because they round out our understanding of the caregiver experience, but because they

are also associated with increased levels of subjective well-being (Cohen, Colantonio &

Vernich, 2002; Pinquart & Sorensen, 2004; Rapp & Chao, 2000). Thinking about PACs is

particularly salient to dementia caregivers, as they are thought to spend more time providing

care than non-dementia caregivers and are thought to experience a range of physical and

mental health difficulties that impact on their vocation, hobbies, relationships and general

quality of life (Ory et al., 1999). Kramer (1997) argued that by failing to look at PACs,

valuable information that could be used in the development of interventions to support

dementia caregivers and improve their quality of life might be missed. It might be that the

lack of operationalisation, or the potential subjective and complex nature of the term PACs

has resulted in a paucity of studies into PACs.


Another reason that research into PACs for dementia caregivers is still in its infancy

may be that at present, there does not appear to be a dominant positive psychology theory

from which to understand PACs more widely (Kramer, 1997; Stansfeld et al., 2017). Without

such a theory it is difficult to know how to define and conceptualise PACs. In a recent review

of positive psychology outcome measures developed for dementia caregivers, a total of 12

different measures of PACs were retrieved and evaluated by the authors (Stansfeld et al.,

2017). Across these 12 measures, five different constructs relating to PACs were identified:

self-efficacy (e.g. Vernooij-Dassen, 1993), spirituality (e.g. Hodge, 2003), rewards (e.g. Yap

et al., 2010), meaning (Farran, Miller, Kaufman, Donner & Fogg, 1999) and resilience

(Wilks, 2008). Stansfeld et al. (2017) noticed that in developing these constructs, many

researchers in their review drew on stress-coping models rather than positive psychology

models to develop their ideas. As such, some of the constructs proposed to relate to PACs

appear to align more with coping strategiesthan instrinsically positive experiences that result

from caregiving. Similarly, some constucts proposed to relate to PACs appear to be more

closely related to a motivation to provide care than a positive experience from caregiving. For

example, several researchers have suggested that reciprocity of care and duty are PACs, e.g.

that caregivers experience an “intrinsic reward in upholding their marital vows” (Lloyd,

Patterson & Muers, 2016, p. 1551). However, for some caregivers, reciprocity and duty might

be a motivation to provide care rather than something one feels like they have gained from

caregiving (Murray, Schneider, Banerjee & Mann, 1999). It could be argued that such

conceptual confusion around what constitutes a positive aspect of caregiving (PAC) and how

a PAC differs from a motivation or coping strategy, is related to a lack of a positive

psychology theory from which to understand PACs. Stansfeld et al. (2017) argued that a

positive psychology theory of PACs would help in understanding how PACs relate to well-


being, developing more robust measures of PACs, and developing positive psychology

interventions to support dementia caregivers.

Given the numerous conceptualisations of PACs, and the lack of a comprehensive and

coherent theory from which to understand PACs, there might be some value in trying to

synthesise existing qualitative literature into PACs in order to observe how caregivers

themselves describe positive caregiving experiences. This exploration would be particularly

valuable with dementia caregivers given the increasing prevalence of dementia and additional

stressors associated with dementia caregiving. Furthermore, exploring the way in which

dementia caregivers describe and relate to PACs using qualitative methods may help to

develop an operationalised definition of PACs and a theoretical understanding of how PACs

are experienced more widely (Kramer, 1997; Sheatsley, 1983). Lloyd et al. (2016) recently

conducted such a review of qualitative studies with dementia caregivers, in an attempt to shed

light on some of the confusion and inconsistencies that exist within the PACs literature. They

found that while there was some variation in the quality of the 14 articles they evaluated,

there were some similarities in the findings between the studies, e.g. six papers identified role

satisfaction as a PAC. They also separated their findings into conceptualisations of PACs

(e.g. role satisfaction) and perceptions of the process of positive caregiving (e.g. choosing a

positive attitude). While thinking about processes relating to PACs is helpful, the processes

identified by Lloyd et al. (2016) related to being able to cope with the caregiver experience.

Furthermore, while the authors completed a quality analysis of each of the articles they

reviewed, they stated that “each paper was read to identify the main concepts of the study…

starting with those studies that scored most highly on the quality rating checklist” (Lloyd et

al., 2016, p. 1549). However, it was unclear how–if at all–the quality analysis was integrated

into the synthesis of the findings from different papers. Given that there is a relatively small

amount of research into PACs at present, it is important to consider how credible the findings


of different papers are in relation to the quality of the paper. To fill the gap in the evidence-

base, this review aimed to integrate a quality analysis into a synthesis of findings from

qualitative literature on positive aspects of caregiving perceived by dementia caregivers.

Research Design and Methods

Search Strategy

Three databases were searched for relevant literature during May 2017; PsycInfo,

Medline and Web of Science. These were chosen as they were three of the databases searched

by Kramer (1997) and Lloyd et al. (2016). The last comprehensive search of these three

databases was conducted on 22 May 2017. Reference lists and cited by lists were also

searched manually to identify additional articles relevant to this review.

Searches of the three databases were conducted around three main concept terms;

caregiver (caregiver OR carer), dementia (dementia OR Alzheimer’s) and positive aspects of

caregiving (satisfaction OR uplifts OR rewards OR gratifications OR growth OR enjoyment

OR positive aspects of caregiving OR benefit OR gain). The search terms relating to PACs in

this review are based on the findings from a literature review conducted by Kramer (1997):

Each of the search terms relating to PACs were different ways that Kramer found researchers

using to define caregiver gain.

While only qualitative papers were included in this review, it was chosen not to

include qualitative methods as a search term. This decision was taken to ensure that relevant

articles were not omitted from the review. As such, methodologies of articles deemed to be

relevant were checked manually before being included in or excluded from the review.

Given that Kramer conducted a similar review in 1997 and found only a limited

number of high quality articles, the literature search for this review was limited to articles


published between 1997 and 2017. If any articles were identified as relevant from searching

through reference/cited by lists that were dated pre-1997, they were included with careful

consideration of the quality of the paper and its contribution to the knowledge base.

Inclusion Criteria

Articles were included if they met the following inclusion criteria:

Used qualitative methods

Investigated the positive aspects of caregiving

Participants were over the age of 18

Participants provided practical, physical or emotional care for a loved one

with dementia

Exclusion Criteria

Articles were excluded from this review if:

They were not written in English

Were book chapters and articles that were not from peer-reviewed journals

(e.g. theses/dissertations)

They did not specify the condition of the care-recipient

Articles solely stated whether caregivers do or do not identify PACs

Articles investigated PACs as an outcome of an intervention

Articles investigated how caregivers cope with being a caregiver or with

feelings of burden or distress

Articles did not include perspectives of dementia caregivers

It was not possible to separate data for dementia caregivers from caregivers of

other disorders, e.g. Cahill (2000), who stated the sample consisted of 26


dementia caregivers, but was shown to include one care-recipient with

Parkinson’s and one care-recipient with encephalitis; and Ribeiro and Paúl

(2008) who did not state how many of the 32 caregivers found to report PACs

were dementia caregivers or caregivers of someone with a physical

impairment.

Articles were deemed to lack credibility, e.g. Ivey et al. (2013) where there

was only one sentence relating to PACs and no indication of how common the

theme was

The process for identifying relevant papers can be seen in Figure 1.

Data Extraction Procedure

Following the initial search, all articles retrieved were exported to the reference

management software, RefWorks ProQuest so that they could be systematically organised as

they were gradually excluded. Here, the title of each article was screened for relevance as per

the inclusion/exclusion criteria stated above. All remaining articles, including those with

ambiguous titles, were screened by their abstract using the same inclusion/exclusion criteria.

Any remaining articles thought to be potentially relevant were read all the way through for a

full-text screen.

Following the identification of a core set of relevant articles, the reference list of each

of these articles was searched for any additional potentially relevant articles. Searches were

also conducted for articles that may have cited the given paper, to further identify any

relevant literature.


Figure 1. Flowchart detailing the process of screening and exclusion

Records screened by title(n = 679)

Studies included in synthesis(n = 10)

13 full-text articles excluded:

Book chapter (n = 1)

Lacked credibility (n = 4)

Mixed sample of caregivers (n = 2)

Findings not relevant to PACs (n = 3)

Quantitative methods (n = 3)

Full-text articles assessed for eligibility

(n = 23)

Records excluded: did not meet

inclusion/exclusion criteria (n = 326)

Records after duplicates removed(n = 679)

Additional records identified through reference and cited by lists

(n = 8)

Records identified through database searching(n = 1034)

Records screened by abstract

(n = 353)

Records excluded: did not meet

inclusion/exclusion criteria (n = 330)


Quality Analysis

Each article retrieved from this review was subject to an unstructured evaluation of

quality (Dixon-Woods et al., 2007). In order to do this, the author used the quality criteria

outlined by Spencer et al. (2003) and Howitt’s (2010) discussion on quality within qualitative

literature to help identify aspects of quality that warranted consideration. This highlighted a

need to assess the credibility of the results in terms of transparent and appropriate

methodology (including sample, data collection, transcription, data analyses and how well the

methods fit the aims of the study), evidence of reflexivity, discussion of limitations, and

meaningfulness of results (e.g. whether results were grounded in previous literature or a

model and whether differences between results were explored). Based on these ideas, a rating

scale was developed that was tailored to the aims of the literature review and the design of

the studies included. This was then used to assess the quality and credibility of articles

retrieved from the literature search. Articles were given a rating on a scale of 1 to 4, where 1

was the highest quality score and 4 was the lowest quality score as follows:

A score of 1 indicates that an article had a strong method and had plausible and well-

evidenced findings and made some attempt at making sense of results within a model

or theoretical framework.

A score of 2 indicates that an article had a relatively good methodology although

lacked in detail, and had comprehensive and plausible findings but did not state how

common a theme was, and made some attempt at making sense of results within a

model or theoretical framework.

A score of 3 indicates that an article had either unclear clear or inappropriate methods

for the study, or findings were not well-evidenced or described, or little or no attempt

was made to think of results within a model or theoretical framework.


A score of 4 indicates that an article had unclear clear or inappropriate methods for

the study, and findings were not well-evidenced or described, and little or no attempt

was made to think of results within a model or theoretical framework.

Data Synthesis

Once the articles relevant to this review were assessed for quality, their findings were

synthesised to identify common themes as follows. Following the quality analysis relevant

themes (i.e. themes relating to PACs) from each article were noted (see Table 1). At this

stage, consideration was given to whether a theme could truly be conceptualised as a positive

aspect of caregiving. For example, while two papers spoke about reciprocity and the

opportunity to give back to the care-recipient, the benefits of this were not detailed, and these

concepts were spoken more in the context of being a motivation or reason to care (Murray et

al., 1999; Peacock et al., 2010). Similarly, having a sense of duty was considered to be a

motivation to care, and not something that necessarily led to feelings of satisfaction or reward

(Murray et al., 1999). Themes deemed to lack credibility or relevance to the research question

were dropped from the analysis. Finally, the quality analysis of each article was integrated

into the discussion of each of the remaining themes. At this stage, the credibility of reported

findings was considered in relation to the credibility of each theme.


Table 1.

Initial identification of themes across retrieved articles

A positive mindset

Personal growth

Mastery/ accomp-lishment

from skills

Apprec-iating and

feeling closer to

care recipient

Recipro-city

Sense of duty being

fulfilled

Spiritual growth

Accept-ance of

the situation

Sense of pride

Butcher et al. (2001)

x

Cheng et al. (2016)

x x x x x x

Donovan & Corcoran (2010)

x x

Farran et al. (1991)

x x x x x

Harris (1993) x x

Murray et al. (1999)

x x x x

Netto et al. (2009)

x x x x

Peacock et al. (2010)

x x x x

Sanders (2005)

x x x

Shim et al. (2012)

x x

Results

A total of 10 articles were identified that met the criteria for this review, all of which

were subject to a quality analysis prior to findings being synthesised. Pertinent strengths and

weaknesses of each article identified through the quality analysis, and the quality rating score

attributed to each article can be seen in Table 2.


Table 2

Summary of Quality Evaluation Including Quality Rating

Authors & quality

rating (QR)

Comments on quality

Butcher et al. (2001)QR4

Clear inclusion and exclusion criteria, although some discrepancies in sample e.g. not all family caregivers

Secondary data with little to no information about the content of interviews Confusion over method - some transcripts only 2 pages long despite interviews

averaging 45-60 minutes No discussion of diversity or differences between accounts of participants Clear indication of how common finding meaning and joy was however parameters

of theme were not clear Sub-themes were not differentiated and it was not clear which illustrative quote

belonged to which sub-theme No discussion of limitations No evidence of reflexivity Findings linked to previous research however not grounded in theory

Cheng et al. (2016)QR2

No inclusion or exclusion criteria mentioned; no description of how sample size was decided

Clear rationale and description of data collection and analysis Limited exploration of differences between participants No indication of how common themes were amongst the sample Themes were comprehensively described and supported through illustrations of the

data Limited discussion of limitations No evidence of reflexivity No reference to theory but researchers offered a hypothetical model of caregiver

gainsDonovan & Corcoran (2010)QR4

Secondary data with no information about the content of interviews or interviewers Ambiguity about sample, e.g. 27% of care-recipients had disorder “related” to

Alzheimer’s but this was not defined No information about how original sample was selected No exploration of differences between participants No record of how common themes were amongst the sample but variety of quotes

used to illustrate each category Only 2 themes described by the researchers; these fit with the aims of the study but

were very broad and did not clearly differentiate PACs Limited discussion of limitations No evidence of reflexivity Findings discussed in the context of an occupational therapy model

Farran et al.

No inclusion or exclusion criteria; no description of how sample size was decided Secondary data however no reference to what original study was, what the sample


Authors & quality

rating (QR)

Comments on quality

(1991)QR3

was originally recruited for, or how sample was recruited Interview schedule is explicitly stated Some ambiguity around coding process No exploration of differences between participants Clear indication of how common each theme and sub-theme was; however,

description of each theme is limited and a limited number of illustrations/extracts from the data are offered

Limited discussion of limitations No evidence of reflexivity Findings grounded in theory and authors offer model of the process of finding

meaning

Harris (1993)QR3

Clear inclusion and exclusion criteria, and clear recruitment strategy outlined Purposive sample used; brief description of how sample size was decided upon Clear description of data collection/interview process including interview schedule Ambiguity around coding process No exploration of differences between participants Themes were not clearly defined, there was no indication of how common themes

were amongst the sample and themes were not well supported by examples from the data

Limited discussion of limitations No evidence of reflexivity Findings linked to the previous literature, however author does not ground findings

in theory

Murray et al. (1999)QR4

No inclusion or exclusion criteria; details of sample and methodology in different articled

Limited description of coding process No exploration of differences between participants No indication of how common themes were amongst the sample Some confusion over whether a theme described a motivation to care or a positive

aspect of caregiving, and themes were not clearly illustrated with examples No discussion of limitations No evidence of reflexivity Findings not discussed in relation to theory


Authors & quality

rating (QR)

Comments on quality

Comprehensive discussion of limitations No evidence of reflexivity Findings discussed in context of model of caregiver satisfaction by Nolan et al.

(1996)

Peacock et al. (2010)QR4

Clear recruitment strategy and inclusion criteria outlined No information about how sample size was decided Secondary data with no information on interview schedule, length of interviews,

who conducted or who transcribed the interviews Limited description of coding process Differences between responses explored, e.g. differences between spousal and

adult child caregivers Themes lacked in-depth description and evidence for themes was poor There was no indication of how common the themes were amongst the respondents Limited discussion of limitations No evidence of reflexivity Findings linked to previous research, however not grounded in theory

Sanders (2005)QR3

No inclusion or exclusion criteria; no description of how sample size was decided Reference to larger sample suggests use of secondary data but this is ambiguous Discrepancies in demographics; percentages of spouses and children do not match

number of spouses and children reported Clear note on what the author’s contribution to the research was and of coding

process Some exploration between different responses, e.g. between people who did and

did not report gain Some indication of how common themes were amongst participants, however

presentation could be misleading Some ambiguity in the author’s interpretation of results Limited discussion of limitations No evidence of reflexivity Findings linked to previous research, however not grounded in theory

Shim et al. (2012)QR4

Comprehensive description of parent study however methods do not align with research aims and questions and there is limited information about interviewers

No inclusion or exclusion criteria; no description of how sample size was decided Limited account of coding process No exploration of differences between participants No themes were defined and as such there was no indication of the prevalence of

findings Authors over-interpret results without clear coding processes, e.g. discussing

empathy and compassion in the absence of any evidence of this Limited discussion of limitations No evidence of reflexivity Findings linked to previous research, however not grounded in theory


As shown in table 2, articles were found to vary considerably in terms of quality, and

several issues impacted on the credibility of some findings. Firstly, six articles were based on

secondary data, and–while this in itself is not problematic–the method of data collection did

not always fit the aims of the study. For example, Butcher, Holkup and Buckwalter (2001)

aimed to investigate the experiences of family caregivers of individuals with dementia,

however, the sample of caregivers from which data was analysed consisted of family and

friends. The authors state that in their sample, “66 caregivers were spouses, 6 were sons, 21

were daughters, 2 were brothers and 5 were sisters” (Butcher et al., 2001, p. 39); three

participants remain unaccounted for, which could suggest that three participants were friends

not family of the care-recipient. Furthermore, of the 103 transcripts analysed by Butcher et al.

(2001) some were as little as 2-pages long, despite interviews being said to average 45-60

minutes. However, this discrepancy was not addressed by the authors, making the quality of

data and credibility of findings difficult to assess. Secondly, limitations were found to be

given very little consideration across most of the articles; authors of three articles did not

reference limitations at all, while several others stated limitations without any discussion

about the implications of these on their study. Thirdly, there was also little to no evidence of

(a) reflexivity, (b) who conducted interviews or (c) who transcribed the data in most of the

articles. This is important in qualitative research as a researcher’s biases and assumptions are

likely to impact on how the data has been collected and analysed, and evidence of reflexivity

may help to enhance the credibility of the interpretation and analysis of data (Clancy, 2013).

Another common limitation was that themes/codes were sometimes not clearly

illustrated by appropriate examples or by frequency information. Of the articles identified six

failed to provide information or evidence about how common each theme was. This was

particularly concerning where the sample size was small, and PACs were not the main area of

interest for the authors. For example, Shim, Barroso and Davis (2012) only had six


participants in their positive group, and it is not clear how many of the six participants spoke

about cherishing their relationship with the care recipient, or of learning to accept the

situation. Other authors would state a theme without going into further description or

elaboration on it. For example, Peacock et al. (2010) spoke about concepts such as personal

growth, feeling competent in the role and feeling closer to the care recipient, but did not

address how or why caregivers experienced each of these themes. Table 3 provides a

summary of the articles included in this review, and includes details about the aims, methods

and findings for each article.


Table 3

Summary of Articles Retrieved from Literature Search

AuthorsCountry &

location

Sample size & sampling

strategySample

characteristics

Was primary aim to find

PACs?

Method of PACs data collection

Method of data

analysis Key findings (% of respondents per theme)Butcher, Holkup & Buckwalter

(2001) a

USA; Arizona, Iowa, Indiana & Minnesota

103; secondary data

M=66yoAge range 36-86

72% female

Relationship not specified

No; What is the lived experience of caregivers providing care for a loved one at home

Secondary data analysis of unstructured interview transcripts, where CGs about their experience of caregiving

Van Kaam’s (1966) pycho-phenomeno-logical method

A total of 8 structural elements were described, only 1 of which related to PACs. 78% of individuals identified finding meaning and joy in their CG experience through: Finding positives in caring (55%), e.g. cherishing the

relationship Fortifying commitment from the quality of the relationship at

earlier times (49%) Creating joyful times, e.g. moments together (36%)Finding meaning & joy was the third most common theme altogether.

Cheng, Mak, Lau, Ng & Lam

(2016) a

Hong Kong

57; purposive sampling

M=54yo SD=7.06

89% female

10 spouses46 adult- children/children in-law1 nephew

Yes; to discover positive gains as constructed by CGs

Voice recorded diary entries; participants were asked to record positive gains that occurred during an 8-week period. 669 diary recordings were returned

Thematic analysis

10 themes relating to positive gains were identified: Insights about dementia and acceptance of it Sense of purpose and role commitment (finding meaning in the

role) Feelings of gratification & gratitude A sense of mastery (from doing role well) Increased patience and tolerance (personal growth) Cultivating a positive mindset Learning to let go (of previous expectations) A closer bonding with the CR Finding people who care (for support) A sense of usefulness from helping other caregivers

(continued)


AuthorsCountry &

location


strategySample

characteristics


PACs?


Method of data

analysis Key findings (% of respondents per theme)Donovan & Corcoran (2010)

USA; Washing-ton DC

15; secondary data

M=67.8yoSD=11.86

60% female

All spouses

Yes; to develop an understanding of how ‘uplifted’ CGs think about and conduct care

Secondary data analysis of 3*90 min semi-structured interviews per CG. Data only included if CG scored above median on caregiver uplift scale. Interview schedule not provided

Constant comparative analysis and grouping statements into related categories by their properties.

2 primary themes were identified about how uplifted caregivers think about and conduct care. These contained 8 key sub-themes, which were described but not explicitly labelled. These were: Engaging in positive caregiver behaviours included: organising

daily routine/activities, looking after oneself, seeking support from friends/family/faith rituals/religious communities and support groups and continued communication with their spouse.

Making adjustments in attitudes included: focusing on the positives rather than the negatives, using humour, feeling a continued commitment to the marriage/vows, having an improved relationship with the CR

AuthorsCountry &

location


strategySample

characteristics


PACs?


Method of data

analysis Key findings (% of respondents per theme)Harris

(1993) aUSA 15;

purposive sampling


100% male

All spouses

Yes; to understand male CGs experiences including accomplish-ments &satisfactions

Semi-structured interviews covering a range of relevant topics, e.g. motivation, satisfaction. Specific questions not specified

Identifying common themes

At least 6 common themes were identified, however only 1 was related to PACs. This was a sense of accomplishment and included the following examples: Being surprised at accomplishments “who would have thought I

could do all this” Experiencing a personal growth process e.g. “…has made me a

better person. I've become more compassionate, more thoughtful”

(continued)


AuthorsCountry &

location


strategySample

characteristics


PACs?


Method of data

analysis Key findings (% of respondents per theme)

Murray et al. (1999)

Europe – 14 EU Countries

280 (20 per country); secondary data

M=71yo

58% female

All spouses

Yes; one of several aims was to explore rewards of caregiving for a spouse

Semi-structured interviews with at least 2 relevant open-ended questions about PACs

Content analysis according to grounded theory procedure

18% reported no satisfaction gained, 82% reported some level of reward from the caregiver role. Five motivations for positive attitudes were stated, however only 4 were described: reciprocity for both past care and mutual affection (12%) the desire for continued companionship (15%) job satisfaction (16%) a perceived unique ability to look after their partner (not

elaborated on) the fulfilment of a sense of duty (14%)The authors report that there were no differences in responses between individuals from different countries or between males and females.

AuthorsCountry &

location


strategySample

characteristics


PACs?


Method of data

analysis Key findings (% of respondents per theme)Netto et al.

(2009) aSingapore 12;

purposive & theoretical sampling

M=49.9yoAge range 32-72

83% female

1 spouse10 adult-

Yes; to explore the possible gains in the experience of family CGs

Semi-structured interviews centred around 5 open ended questions

Grounded theory approach

Each of the 12 participants identified at least one gain. Three main themes related to caregiver gains were found: personal growth included: being more patient (50%), being

stronger and more resilient (42%), having increased self-awareness (25%), being more knowledgeable about healthcare systems (17%), developing creative problem-solving skills (17%), becoming humbler (17%), a sense of mastery (17%) and developing a selflessness (1%)

(continued)


AuthorsCountry &

location


strategySample

characteristics


PACs?


Method of data

analysis Key findings (% of respondents per theme)children1 niece

gains in relationships included: developing a closer relationship with the CR (50%), feeling closer as a family (17%), improved interactions with older people (25%)

higher-level gains included: a positive change in philosophy, e.g. less emphasis on money (25%), growth of spiritual and religious beliefs (67%), and a sense of altruism (25%).

Peacock et

al. (2010) aCanada; Ontario, Manitoba & Saskatchewan

39; purposive sampling

Age not specified

82% female

26% spouses33% adult-children/children in-law11% other

Yes; What are the positive aspects of caregiving from the perspective of family caregivers of persons with dementia

Secondary data analysis. Focus groups x 6 (N=36) plus 3 individual interviews. At least 2 questions asking about PACs

Interpretive descriptivequalitative approach

Five themes emerged from the data from using strengths-based perspective as a guide to analysis: An opportunity to give back/reciprocity Personal growth along the journey Discovery of inner strengths by connecting with others A sense of competence in the role An opportunity for a closer relationship to CR and commitment

to the CR

AuthorsCountry &

location


strategySample

characteristics


PACs?


Method of data

analysis Key findings (% of respondents per theme)Sanders (2005)

USA 85; secondary

M=60yoSD=15

Yes; how are strain and gain

Secondary data analysis. Open-

Strategies based on

81% of respondents reported experiencing gain. This emerged from Spiritual growth and increased faith

(continued)


AuthorsCountry &

location


strategySample

characteristics


PACs?


Method of data

analysis Key findings (% of respondents per theme)data Age range 28-

89

69% female

35 spouses50 adult-children

characterised ended question within a survey “how do you feel that you have changed as you have taken on a caregiving role?”

grounded theory approach

Personal growth Accomplishments and mastery

Author appeared to state that husbands reported the highest percentages of gains, which is only true when comparing husbands to sons (rather than to the whole sample).

Shim, Barroso & Davis (2012)

USA 21; secondary data


76% female

All spouses

No; to explore how characteristics of CGs differed based on whether they described their experiences negatively or positively.

Secondary data analysis. Single question within structured interview “describe 3 aspects of caregiving that stand out as being positive or having gone well in the last month”

Manifest and latent content analysis

3 groups of caregivers were identified; a negative group CGs who reported no positives (n=3), an ambivalent group who reported mostly negatives and minimal positives (n=12), and a positive group who reported largely positive experiences and minimal negatives (n=6).

Positives reported by the caregivers in the positive group included: Cherishing what remained of their relationship Acceptance of the situation or fact that their partner could not

reciprocate

Note. PACS = positive aspects of caregiving; YO = years old; CG = caregiver; CR = care-recipient.

aIdentified from reference lists/cited by lists.

(continued)


Data synthesis

Findings from the 10 articles, as displayed in Table 3, were synthesised into five

themes. The synthesis of the themes was based on the quality evaluation, and findings are

presented with careful consideration to the quality of the articles retrieved. The following

themes are listed in order of prevalence.

A positive mindset. Having a positive mindset was described by six research groups

and seemed to encapsulate dementia caregivers developing positive appraisals and having a

more positive outlook on various situations (Donovan & Corcoran, 2010). Netto, Goh and

Yap (2009) framed this theme as the adoption of a more positive philosophy in life and

having a greater appreciation/value for various aspects of life, such as one’s relationships.

However, while cherishing one’s relationships was also identified in two other articles

(Butcher et al., 2001; Shim et al., 2012), what seemed to link most of the articles was an idea

that a positive mindset was something that could be actively cultivated or chosen (Butcher et

al., 2001; Cheng, Mak, Lau, Ng & Lam, 2016; Donovan & Corcoran, 2010; Farran, Keane-

Hagerty, Salloway, Kupferer & Wilken., 1991; Shim et al., 2012). For example, the article by

Cheng et al. (2016) which scored a quality score of 2, aligned cultivating a positive mindset

with cognitive restructuring, and actively reframing negatives into positives. It might

therefore be the case that developing a positive mindset is something that helps dementia

caregivers to cope with the adversities of caregiving–perhaps through a process of acceptance

that an individual with dementia will continue to deteriorate, as alluded to by Shim et al.

(2012)–and is thus not an intrinsically positive aspect of caregiving but rather a coping

strategy. Nevertheless, given that the article by Netto et al. (2009) scored the highest quality

rating in this review and was one of the few studies in this review designed specifically to

investigate PACs, developing a positive mindset warrants consideration as a PAC for

dementia caregivers. Further high-quality research into the experiences of dementia


caregivers might help to differentiate how a positive mindset might be conceptualised as a

PAC and how it might be coping strategy; partly what hinders the understanding of this so far

is the quality of the articles reporting a positive mindset.

Only two of the six articles were given a quality rating of two or higher (Cheng et al.,

2016; Netto et al., 2009). The means that the remaining four articles either lacked detail about

their methods, did not present strongly credible findings and/or did not link their results back

to an overarching theory or model. For example, both Shim et al. (2012) and Butcher et al.

(2001) spoke about the ideas of cultivating a positive mindset without discussing this as a

standalone theme. Furthermore, the researchers were not primarily aiming to identify PACs

and relied solely on the use of secondary data which did not allow for the exploration of

PACs in any detail. More specifically, findings from Shim et al. (2012) were based on

caregivers describing “three aspects of caregiving that stand out as being positive or having

gone well in the last month” (p. 224). The analysis of unstructured interview transcripts by

Butcher et al. (2001) was also particularly ambiguous and raised questions about how much

of the interview was actually relevant to the research question, given the use of secondary

data and the fact the researchers did not conduct the interviews themselves. Nonetheless, if

we combine their findings with some of the more robust research that have been identified,

this might be an area that warrants further enquiry. Perhaps in order to clarify whether

developing a positive mindset is a PAC or a coping strategy, it might help to directly ask

dementia caregivers about what leads them to develop a positive mindset (e.g. increased

gratitude, change in values/philosophy, a way of coping with adversity), and what specific

aspects of life they appraise more positively.

Personal growth. Dementia caregivers also spoke about the personal changes that

they experienced as a result of taking on a caregiver role within six articles. Changes included

becoming more patient, more tolerant (Cheng et al., 2016; Netto et al., 2009), more


compassionate (Harris, 1993) and stronger (Farran et al., 1991; Netto et al., 2009) both within

and outside of the caregiving role. This may be particularly salient for dementia caregivers

than other caregivers because of the continued decline of the care-recipient, and therefore the

continuous change and adaptation of the caregiver within the role.

Sanders (2005) also spoke about caregivers experiencing personal growth, but her

interpretation of the data did not clearly reflect the evidence she provided for the theme. For

example, participants becoming “more patient” or “more sensitive” was interpreted by the

author as individuals examining what was important to them in life; while becoming more

patient or sensitive could be conceptualised as personal growth, examining what is important

in one’s life does not clearly relate personal growth. Furthermore, this finding was based on

the secondary data of 85 participants who wrote statements that were an average of three

sentences long, suggesting that the information gathered was relatively limited. Nevertheless,

what Sanders (2005) suggestion that personal growth might occur naturally from the role

could be corroborated by similar findings in more robust studies, i.e. Cheng et al. (2016) and

Netto et al. (2009). On the other hand, findings by Farran et al. (1991), Harris (1993) and

Peacock et al. (2010) were less informative about experiences of personal growth.

Furthermore, the use of secondary data in Sander’s study was acknowledged as a limitation in

the article

Farran et al. (1991), Harris (1993) and Peacock et al. (2010) all made clear reference

to personal growth, however did not go on to detail how or in what way individuals

experienced growth. Farran et al. (1991) spoke about personal growth in the context of

finding provisional meaning; “provisional meaning refers to those short-term or transitory

experiences that give meaning to life…. Thus, caregivers may find provisional meaning

through the day-to-day tasks and experiences with their impaired family member” (p. 484).

However, while caregivers were described to grow and find meaning through their caregiving


experiences, there was no further elaboration and very little evidence provided for this theme.

Without evidence for the theme, it is unclear how much the data was made to fit the themes,

or how much themes were a true reflection of the data. Therefore, the theme could be seen to

lack credibility. Both Harris (1993) and Peacock et al. (2010) also provided very little

definition of personal growth, did not state how common the theme was amongst the sample

and provided very little evidence about how people experienced growth. The strongest

evidence for this theme came from Netto et al. (2009) who clearly outlined, described and

evidenced several aspects of personal growth including patience, resilience and self-

awareness. As per the first theme, the understanding of how caregivers experience personal

growth and what constitutes personal growth may be improved with further qualitative

exploration of personal growth with caregivers.

A sense of mastery or accomplishment. Five studies spoke about how caregivers

experienced a sense of mastery or accomplishment as a result of caregiving, which some

researchers related to feelings of pleasure (Murray et al., 1999) and satisfaction (Peacock et

al., 2010). More specifically, this theme was conceptualised as: developing a sense of

mastery or competence in the role (Cheng et al., 2016; Harris, 1993; Peacock et al., 2010;

Sanders, 2005) and developing new skills (Murray et al., 1999; Sanders, 2005). These two

conceptualisations are arguably different experiences, yet are often described interchangeably

within the PACs literature and therefore require clarification in future research. For example,

it could be suggested that developing new skills or developing competence in a role is not

enough to be a PAC, but that how someone appraises or values these experiences may lead to

a PAC. For example, while a dementia caregiver might learn new skills such as cooking or

organising the household finances, the values that a caregiver attributes to learning this new

skill may determine whether or not it is a PAC. It is also possible that feelings of mastery and

accomplishment arise from learning to cope with a complex, challenging or daunting role, as


alluded to by Cheng et al. (2016), Peacock et al. (2010) and Sanders (2005). As such, whether

or not experiencing mastery or accomplishment through caregiving is a PAC or a coping

strategy is unclear at this stage.

The quality of papers that reported this theme was relatively poor, with four of the

articles scoring quality ratings of three or below. For example, while Harris (1993) described

caregivers feeling accomplishment from developing a caregiving system that worked, the

parameters of this theme were unclear, little evidence was provided for the theme, and there

was no comment on how common this experience was amongst the sample. Peacock et al.

(2010) conceptualised accomplishment as a sense of competence and mastery in the role, and

Murray et al. (1999) discussed how caregivers felt pleased at their achievements and having

developed new skills. However again, stronger evidence could have been provided to support

these themes. Of the five studies, only one reported frequencies of this theme (Sanders,

2005). Furthermore, only one article was given a quality rating score of two or higher; Cheng

et al. (2016) identified a sense of mastery as a theme, where individuals not only developed

skills, but learnt to approach situations calmly in order to effectively implement such skills.

Given the different definitions of a sense of mastery, and the potential overlap with a coping

strategy, there may be a need to further explore and clarify this theme in future research.

Feeling closer to care recipient. Three of the 10 articles recognised how much closer

some caregivers felt to the care recipient from being their caregiver (Cheng et al., 2016; Netto

et al., 2009; Peacock et al., 2010). However, while Peacock et al. (2010) identified a theme

entitled “opportunity for closer relationship and commitment to the care recipient”, they did

not describe how or in what way caregivers felt closer to the care-recipient. Both Cheng et al.

(2016) and Netto et al. (2009) on the other hand, identified caregivers developing a sense of

companionship with the care-recipient and enjoying spending time together. This seemed to

have come in part from spending more time with the care-recipient and developing a better


understanding of their needs (Netto et al. 2009). Cheng et al. (2016) went on to suggest that

caregivers understood the care-recipient better on a personal level, received companionship

and social support from the care-recipient, and had a rekindled affection or intimacy with

them. The idea of improved companionship or understanding of the care-recipient may be a

particularly pertinent PAC for dementia caregivers, given the cognitive changes associated

with dementia. While further research in this area is needed, it could be that the cognitive and

emotional changes that both the care-recipient and caregiver go through when someone is

diagnosed with dementia impact on how close people feel to one another.

While Farran et al. (1991) and Murray et al. (1999) also discussed companionship,

this was discussed more in the context of maintaining a relationship than feeling like one’s

relationship had improved. As such, their findings were not included in this theme. One

limitation of this theme is that the relationship between the caregiver and care-recipient was

not explicit in any of the three papers, however this might be an important factor to consider

when thinking about what might lead one to feel closer to the care-recipient.

Spiritual growth. Farran et al. (1991), Netto et al. (2009), and Sanders (2005) all

discussed the occurrence of spiritual growth from caregiving. While Farran and colleagues

found this amongst 34% of respondents, they lacked evidence to support their claim, and

spiritual growth was formulated as an individual being reassured by their spiritual beliefs

(Farran et al., 1991). In some ways this sounds akin to individuals seeking comfort and

coping through their religion. On the other hand, while Sander’s did acknowledge religion as

something that helped people to cope with difficulties of caregiving, both her and Netto’s

research groups conceptualised spiritual growth more in the context of developing stronger

religious beliefs and associated qualities such as peace, joy and compassion. This latter

conceptualisation may be a more accurate way of capturing spiritual growth as a PAC than

the conceptualisation by Farran et al. (1991).


Sanders (2005) and Netto et al. (2009) identified reports of spiritual growth among

35% and 67% of their respondents, respectively. However, there seemed to be some

ambiguity in Sanders (2005) results. She stated that spiritual growth was one of the largest

gains observed amongst the sample, but spiritual growth appeared to be reported less than the

other themes in her study. Netto et al. (2009) on the other hand, once again detailed robust

methods and results, and provided the most compelling evidence that some individuals go

through a process of spiritual growth, become more compassionate and feel closer to God

after taking on a caregiving role.

Discussion and Implications

The aim of this review was to investigate and synthesise the qualitative research into

the positive aspects of caregiving, as perceived by dementia caregivers. 10 articles describing

10 independent studies met the inclusion criteria and were included in this review. Across the

findings, five themes were identified; a positive mindset, personal growth, a sense of mastery

or accomplishment, feeling closer to the care recipient, and spiritual growth. While this

review was not intended to replicate the findings by Lloyd et al. (2016), personal growth, a

sense of mastery or accomplishment, and feeling closer to the care recipient were all

identified as gains in both reviews. However, there were some differences in the way in

which themes were conceptualised in the two reviews. For example, Lloyd et al. (2016)

suggested that developing a positive mindset and spiritual growth (or drawing strength from

faith) were processes of positive caregiving; whereas findings from this review suggest that

developing a positive mindset and experiencing spiritual growth could be either ways of

coping with adversity or PACs, depending on how they are conceptualised or experienced by

dementia caregivers.

It has been suggested that how concepts such as spiritual growth are experienced

depend on one’s caregiving context, e.g. how much time one spends providing care or what


support is available to caregivers (Kramer, 1997). However, these contextual factors were not

readily discussed in the papers included in this review, and the mechanisms that lead to PACs

and how PACs differ from strategies used to alleviate distress is unclear. The reason that such

conceptual confusion around PACs exists within the literature may relate to the number of

low-quality research articles in the area, and the impact that low-quality articles have on the

credibility of findings.

While there was some robust evidence for each of the themes in this review, overall

research into PACs was found to be sparse and often lacking in quality. For example, one

particularly strong observation from this review was that there was a large amount of

secondary data being used for analyses, where identifying PACs were not the main aims and

methodologies did not allow for a detailed exploration of PACs. While the use of secondary

data in itself is not problematic, the credibility of findings may be brought into question when

detailed information on methodologies, researcher assumptions and analyses are not

available. For instance, none of the researchers using secondary data in this review stated

whether or not they checked the accuracy of transcriptions to the original interviews (Howitt,

2010). On the other hand, while the identification of PACs was not the primary aim of many

of the studies included in this review, PACs appeared prominent enough to prompt

researchers to investigate these further (Lloyd et al. 2016). Furthermore, findings from

studies that used secondary data were somewhat corroborated by findings from studies that

were designed to investigate PACs using qualitative methods (e.g. Cheng et al., 2016; Netto

et al., 2009).

Another observation from this review was that across the 10 studies, positive aspects

of caregiving were described of as a gain, an uplift, finding meaning, satisfaction and simply

as a positive aspect of caregiving. Perhaps it is the case that each of these are a unique

dimension within PACs, or that how a caregiver defines/describes PACs depends on factors


such as how much time they spend with the care-recipient, but it seems that these terms are

somewhat interchangeable descriptions of the same phenomena. Without an

operationalisation or an agreement on terminology, it is hard for researchers to build on the

work of each other and synthesise knowledge into a theoretical framework; and without a

theoretical framework it is difficult to differentiate processes that lead to PACs from coping

strategies.

Articles in this review were found to draw on a number of different models and

theories from which to understand PACs. However, such theories appear to be seldom and

inconsistently drawn upon. For example, in 1997, Kramer offered a preliminary model of

caregiver adaptation, which integrated several theories such as role theory and the two-factor

theory of happiness (Bradburn, 1969). However, not one of the 10 articles included in this

review discussed their results in relation to Kramer’s (1997) model. Kramer suggested that

both positive and negative outcomes, are influenced by one’s background and context (e.g.

values, motives, life circumstances) and internal and external resources (e.g. health, social

support and coping strategies); the suggestion that PACs are influenced by one’s coping

resources could be one reason why this model has not been widely adopted as a way of

explaining intrinsically positive caregiving experiences. In fact, of the 10 studies found in this

review, six were a-theoretical, meaning that they did not link their findings back to any model

(Butcher et al., 2001; Harris, 1993: Murray et al., 1999; Peacock et al., 2010; Sanders, 2005;

Shim et al., 2012), two developed their own model to help make sense of their results (Cheng

et al., 2016; Farran et al., 1991), and two referenced pre-existing models (Donovan &

Corcoran, 2010; Netto et al., 2009).

Donovan and Corcoran (2010) drew on the Person-Environment-Occupation model

(Law et al., 1996), in which outcomes are thought to relate to individual factors (e.g.

personality, culture and competence), environmental factors (e.g. socio-economic factors)


and occupational factors (e.g. the tasks and activities one engages in). This model benefits

from considering how individual and contextual factors impact on the caregiving experience.

However, the model is descriptive and does not highlight any specific processes or

relationships between variables.

Netto et al. (2009) took a different approach and mapped many of the themes they

found onto a model by Nolan, Grant and Keady (1996). This model is a conceptual matrix

made up of two axes, where caregiver rewards are determined by (a) the main beneficiary of

an exchange (i.e. care-recipient, care-recipient and caregiver, wider family) and (b) the source

of the reward (e.g. interpersonal dynamics between the caregiver and care-recipient). For

example, if both the caregiver and care-recipient are beneficiaries of an exchange, and

satisfaction is derived from interpersonal dynamics between the caregiver and care-recipient,

then the outcome may be the care-recipient and caregiver feeling closer to one another

(Grant, Ramcharan, McGrath, Nolan & Keady, 1998). While this model has the benefit of

focusing on positive aspects of care, it too lacks detail about processes and mechanisms that

result in PACs.

Rooted in the theoretical framework of existentialism, Farran and colleagues proposed

a model of finding meaning in caregiving (Farran & Keane-Hagerty, 1991; Farran et al.,

1991). This model suggests that “critical antecedents to caregiving, caregiving stages,

caregivers' responses, and phases of suffering assist caregivers to grow and find meaning

through caregiving” (Farran et al., 1991, pp. 488-489). However, in many ways this model

relies on the idea that meaning is derived through experiences of suffering, and as such it may

align more closely to copies theories than a theory to explain how one experiences

intrinsically positive experiences from caregiving.

The model by Cheng et al. (2016) is a multi-faceted model that encapsulates many of

the PACs identified in both this review and the review by Lloyd et al. (2016). However, more


research is needed to explore the relationships between the proposed variables in this model.

Furthermore, the model also incorporates aspects of coping, such as cultivating a positive

mindset as a way of regulating emotions (Cheng et al., 2016). What is evident from this

review is that more work needs to be done to develop a coherent and comprehensive

understanding of how PACs occur, and how PACs differ from coping strategies.

Another observation of the articles in this review concerns the nature of the samples

from which data was collected. Firstly, none of the studies identified were conducted in the

United Kingdom. Seven of the studies were conducted in the Americas, two were done in

South East Asia, and one was conducted in Europe. However, there are likely to be cross-

cultural differences that impact both experiences and perceived gains of being a caregiver,

e.g. financial systems available to support caregivers, cultural expectations of family support,

cultural beliefs about loss or illness (Janevic & Connell, 2001). Given the prevalence of

dementia in the UK, it would be important for future research to consider how caregivers in

the UK experience PACs. Secondly, many of the samples were predominantly female,

despite the fact that women are more likely to be diagnosed with dementia than men (Prince

et al., 2014) and the prevalence of male caregivers is rising (Hoff, 2015). The over-

representation of women in the literature has frequently been cited as a methodical flaw in the

research (Houde, 2002), and is something needs to be considered when trying to understand

PACs. Thirdly, none of the articles considered how the age of a caregiver might impact on

the way one experiences caregiving. Developing a comprehensive understanding of how

subgroups of caregiver’s experience PACs may allow for a more comprehensive

understanding of the caregiver experience overall.

A final point to note is that, while it is important to consider the experiences of

dementia caregivers given their increasing prevalence, it is also important to consider how

other caregivers experience PACs. There has been a lot of research into PACs experienced by


caregivers of differing care-recipient presentations, e.g. depression, Parkinson’s. This is an

important consideration to make, as other literature may be useful in helping to develop the

understanding and theory of caregiver experiences. For instance, Hinrichsen, Hernandez and

Pollack (1992) asked 150 caregivers of adults with depression about their experiences of

caregiving using open-ended interview questions, and found caregivers to report several

different rewards. Rewards identified included feeling as though one discovered new

strengths or capacities because of caregiving, feeling that one grew as a person and greater

appreciation or liking of the patient, which are very much aligned with some of the themes

identified in this review. Such individual and contextual factors are important to consider in

order to develop a comprehensive understanding of how different caregivers experience

PACs.

Limitations of the Review

One limitation of this review was that there was no consideration to how experiences

differed between subgroups of caregivers, e.g. gender, relationship to care-receiver, and age

of caregiver experiences (Kramer, 1997; Peacock et al., 2010). Without exploring these

differences, there is a risk of making assumptions about the way in which different

individuals respond to and feel about caregiving, that do not reflect everyone’s experiences.

For example, given that some men have been shown to experience enjoyment and satisfaction

from caregiving (Kaye & Applegate, 1990), male caregivers could be at risk of being

overlooked in the development of interventions. It is possible that research would be more

valuable, meaningful and valid if each of different subgroups of caregivers were researched

independently and in more depth before a greater synthesis of the data occurred.

Another limitation is that the search strategy used may have contributed to the paucity

of studies found to explore PACs using qualitative methods. Articles were excluded from the


search if they were not written in English and if they were not from a peer-reviewed journal.

Furthermore, the terms dementia and Alzheimer’s may have restricted the inclusion of articles

focusing on other forms of dementia such as Lewy-bodies. If these search limitations had not

been in place, it is possible that more studies relevant to PACs may have been identified.

More articles may also have been retrieved if more databases had been included in the search.

However, given that reference lists and cited by lists of articles were searched to include any

articles not retrieved in the initial search, it is argued that the search conducted was

comprehensive and that the small number of articles included in this review reflects the gap

in the research-base.

Finally, while findings were presented in relation to the quality of articles, findings

within this review need to be interpreted with caution given that the majority of papers

retrieved were of poor quality. The low number of high quality papers in this field creates a

risk of assumptions being drawn from findings that lack credibility, and is an indication that

further work is needed in the area.

Future Research

Given that the low-quality of some of the articles included in this review had an

impact on the credibility of some of the findings, there is a clear need for further high quality

qualitative studies that focus on asking caregivers what they perceive positive aspects of

caregiving to be, and the mechanisms or thought processes behind these experiences.

Furthermore, future research investigating PACs is needed to clarify terminology around

PACs, and allow for the development of a model or theory for researchers to utilise in future

research. What may be of further benefit, would be to narrow the focus of research to a

smaller subgroup of caregivers such as male caregivers, to ensure that no one group is being

under- or over- represented in the literature. This would not only allow for the potential


development of a theory around positive aspects of caregiving, but for a better understanding

of how to support caregivers through the development of targeted interventions.

Conclusion

This review critically evaluated and synthesised the existing qualitative literature on

what dementia caregivers perceive to be PACs. It also explored the psychological theories

that the evidence base has drawn on to date. Through a synthesis of findings five themes were

identified: a positive mindset, personal growth, a sense of mastery or achievement, feeling

closer to the care-recipient and spiritual growth. From this review it was found that there is

still a lack of consistency in the conceptualisations of PACs. Furthermore, there is a great

deal of variability in the quality of existing research, which brings the credibility of findings

into question and makes it difficult to synthesise findings. This review therefore highlights a

need for further high-quality studies that explore caregiver’s perceptions of PACs using

qualitative research methods. Such research might allow for the development of a

comprehensive and coherent theory and a model from which to understand PACs.


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Part 3 - Summary of Clinical Experience

Year 1

Early Intervention for Psychosis Service

On my first placement, I worked with adults aged 19-44 years old presenting with

experiences of psychosis, anxiety, low mood, bi-polar disorder, post-traumatic stress disorder

(PTSD) and suicidal ideation. I worked with people both individually, and in a Compassion-

Focussed Therapy (CFT) group. I used a range of models in my individual work, including

Cognitive Behavioural Therapy (CBT), Acceptance and Commitment Therapy (ACT) and

CFT. Alongside therapeutic work, I also completed several neuropsychological assessments

to help assess whether any memory, language and processing difficulties may have been

impacting on an individual’s presentation. In terms of teaching, I ran two different teaching

sessions; one was an informal session about CBT with parents/carers of clients in our service,

while the other was an introduction to mindfulness for staff and service users. I also

completed an audit of how much the service was adhering to the NICE referral-to-treatment

target for adults experiencing psychosis, which was later disseminated to the team.

Year 2

Child and Adolescent Mental Health Service (CAMHS) Tier three

During my core CAMHS placement, I worked with children and young people aged 6-17

years old and their families. Individuals presenting to the service experienced a range of

moderate to severe mental health difficulties including depression, self-harm, suicidal

ideation, panic, social anxiety, separation anxiety, obsessive compulsive disorder (OCD),

sleep difficulties, low self-esteem, attention deficit hyperactivity disorder (ADHD) and

Autism Spectrum Disorder (ASD). Individual work was predominantly informed by CBT,

although ACT, CFT and narrative approaches were also utilised. As well as working with

young people and families, I also provided consultation to schools. Furthermore, I completed


two neuropsychological assessments with children who were struggling with learning at

school and home. I then supervised an assistant psychologist completing a Weschler Adult

Intelligence Scale (WAIS), including scoring the assessment and feeding the results back to

the client. In terms of teaching, I delivered a session on ACT for colleagues within the team.

Community Team for People with Learning Disabilities

On this placement I worked with adults aged 25-70 years old diagnosed with a Learning

Disability (LD). As well as working with staff in care homes to help them to understand and

better respond to behaviours they perceived to be challenging, I worked with a number of

individuals who had a LD and a comorbid mental health difficulty, e.g. depression, anxiety,

anger, self-harm, suicidal ideation, relationship difficulties. Intervention models used

included positive behaviour support (PBS) and CBT, and also incorporated ideas from

systemic and attachment theories. I engaged in a number of consultations, both with care

home staff and with my psychiatry colleagues. Furthermore, I completed a dementia

assessment and an autism assessment. In terms of leadership and teaching, I delivered a

teaching session on using CFT within an LD population for staff within the service and

presented two case formulations to my team for discussion.

Year 3

Specialist Placement – Child and Adolescent In-patient Unit (Tier 4 CAMHS)

For my specialist placement, I worked in an acute inpatient unit for adolescents presenting

with moderate to severe mental health needs and high levels of risk. I worked with young

people aged 13-17 years old, with a range of difficulties including depression, self-harm,

suicidal ideation and suicide attempts, OCD, PTSD, body-dysmorphic disorder, hearing

voices, eating disorders and ASD. As well as working individually with young people on the

ward, I worked with families, liaised with schools and contributed to care planning meetings.


Intervention models adopted included CBT, ACT, CFT, DBT and systemic family therapy. In

addition, I provided consultations to the nursing and support staff on the ward, particularly in

relation to responding to aggression from young people. I delivered a 1-hour training session

on PBS to staff and redeveloped the staff guidelines for responding to aggression with an

emphasis on positive and proactive support strategies. I circulated these to the team and

supported staff to develop collaborative behavioural support plans with young people on the

ward. I also contributed to discussions about how to make the care planning process more

collaborative and effective. In terms of neuropsychological assessments, I completed one

WAIS with a young person, and an autism screening questionnaire with a parent of a young

person.

Older People’s Community Mental Health Team and Memory Assessment Service

On my final placement, I worked with older adults aged 70-90, most of whom had a

diagnosis of dementia and were resident in a care home. The team primarily used the

Newcastle Model, working with the nursing staff and carers within care homes to better

understand and respond to residents that staff were experiencing as challenging. This was a

bio-psycho-social model with formulation, consultation and care planning at its core.

Additionally, I helped to develop and co-facilitate a training session for care home staff on

how to identify triggers and de-escalate a situation to help reduce the likelihood of a resident

engaging in aggressive behaviours. This included information on conducting risk assessments

and raising safeguarding alerts. I also completed two neuropsychological assessments for

clients who had been referred to the memory assessment service. This included compiling

detailed neuropsychological reports and disseminating these to patients, GPs, psychiatrists

and care co-ordinators. I also spent some time with older adults outside of the therapeutic

relationship by attending a cooking group at a care home, and a session at a dementia café.


Part 4 - Table of Assessments Completed During Training PSYCHD CLINICAL PROGAMME

Year I Assessments

ASSESSMENT TITLE

WAIS WAIS Interpretation (online assessment)

Practice Report of Clinical Activity

Case report of a male client in their mid-20s presenting with low mood and trauma symptoms, with a compassionate formulation based on cognitive-behavioural principles

Audio Recording of Clinical Activity with Critical Appraisal

Audio recording of a female client in late-teens/early twenties presenting with psychosis and mood fluctuations

Report of Clinical Activity N=1

Case report of a female client in her 20s presenting with severe depression and anxiety, using a cognitive-behavioural formulation and intervention

Major Research Project Literature Survey

Positive aspects of caregiving as experienced by male caregivers of Alzheimer's sufferers: A literature survey

Major Research Project Proposal

What are the perceived positive coping strategies, gains, and positive outcomes that male caregivers experience: An MRP proposal

Service-Related Project Does the early intervention service meet quality statement 1 of NICE quality standard QS80 for psychosis and schizophrenia?

Year II Assessments

ASSESSMENT TITLE

Report of Clinical Activity – Formal Assessment

Neuro-cognitive assessment of a teenage boy with a diagnosis of ADHD to determine strengths and weaknesses in his cognitive functioning

PPD Process Account Reflective account of a personal and professional development group over the course of two years

Presentation of Clinical Activity

An oral presentation of a positive and proactive support plan for a woman displaying behaviours that challenge

Year III Assessments

ASSESSMENT TITLE

Major Research Project Literature Review

The perceived gains and positive aspects of caregiving: A review of the literature

Major Research Project Empirical Paper

The experiences of men providing informal care to a relative with a long-term physical health condition

Final Reflective Account On becoming a clinical psychologist: A retrospective, developmental, reflective account of the experience of training


Report of Clinical Activity

A family therapy intervention for a transgender male teenager, his mother and step-father, while the son was experiencing low mood and self-harm

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