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Conway, Aaron, Schadewaldt, Verena, Clark, Robyn, Ski, Chantal, Thomp-son, David, & Doering, Lynn(2013)The psychological experiences of adult heart transplant recipients: A sys-tematic review and meta-summary of qualitative findings.Heart and Lung: Journal of Acute and Critical Care, 42(6), pp. 449-455.

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https://doi.org/10.1016/j.hrtlng.2013.08.003

1

The psychological experiences of adult heart transplant recipients: A

systematic review and meta-summary of qualitative findings

Authors:

Aaron Conway BN (Hons) 1

Verena Schadewaldt DiplNursHlthSc 2

Robyn Clark PhD, FRCNA 1

Chantal Ski PhD, MAPS 3

David R Thompson PhD, MBA, FRCN, FAAN, FESC 3

Lynn Doering DNSc, FAAN 4

1 Institute of Health and Biomedical Innovation, Queensland University of Technology.

2 Faculty of Health Sciences, Australian Catholic University.

3 Cardiovascular Research Centre, Australian Catholic University.

4 School of Nursing, University of California Los Angeles.

Corresponding Author and contact details for request for reprints: Aaron Conway Research Fellow Level 7 60 Musk Ave Kelvin Grove QLD 4059 Tel. +61 7 3138 6124 Email: Aaron.conway@qut.edu.au Acknowledgements No funding was received

2

Abstract

Background

Psychosocial factors and physical health are associated with increased psychological

distress post-heart transplant. Integrating findings from qualitative studies could

highlight mechanisms for how these factors contribute to psychological well-being,

thus aiding the development of interventions.

Objective

To integrate qualitative findings regarding adult heart transplant recipients

experiences, such as their emotions, perceptions and attitudes.

Methods

A systematic review and meta-summary were conducted. Data from seven studies

were categorized into 16 abstracted findings.

Results

The most prominent finding across the studies related to recipients’ perceptions of

the importance of social support. Other prominent findings related to factors that

promoted psychological well-being, such as faith, optimism and sense of control.

Conclusions

Psychological well-being may be improved by enhancing perceived control over

health and daily life, promoting an optimistic outlook by facilitating access to social

support from other heart transplant recipients and ensuring post-transplant recipient-

caregiver partnerships adequately support the transition back to independence.

3

Keywords:

Heart transplant, cardiac transplant, anxiety, depression, qualitative, quality of life,

meta-synthesis, meta-summary.

4

Introduction

Heart transplant (HT) is associated with greater long-term survival than alternative

end-stage heart failure treatments, including ventricular assist devices and the total

artificial heart.1, 2 On average, HT also yields dramatic improvements in functional

status and overall quality of life.3 However, psychological disorders and high levels of

psychological distress are common after transplant.4-7 In a comprehensive review of

post-transplant psychological outcomes, investigators concluded that depressive

disorders, anxiety-related disorders and associated distress were the most common.4

Yet, there is a paucity of evidence regarding the effectiveness of interventions

designed to improve psychological outcomes for HT recipients.8 This lack of

evidence led the Psychosocial Outcomes Workgroup of the Nursing and Social

Sciences Council of the International Society for Heart and Lund Transplantation to

recommend that trials of interventions to maximize psychosocial outcomes must be

conducted.9 Of note, they also recommended that “novel interventions could be

designed based directly on the existing psychosocial outcomes literature in

cardiothoracic recipients” (p.721).9

Reviews of HT outcomes literature have already been conducted.4, 9 Both

psychosocial factors as well as physical health were found to be associated with

increased psychological distress. Psychosocial factors included hope, reliance on

passive coping strategies, lack of social support and low sense of control.4 Physical

health status indicators of increased risk for psychological distress include poor

functional status, medication side effects, physical symptom frequency, comorbidities

and sleep abnormalities.4

Numerous qualitative studies have investigated how recipients perceive their

transplant experiences. The qualitative nature of these studies facilitated in-depth

5

exploration of recipients’ perceptions of the factors that contributed to their past and

present emotions.10 Recipients were also presented with the opportunity to elaborate

on their perceptions of what and how particular aspects of the transplant impacted on

their sense of well-being.11, 12 Qualitative studies have also explored how recipients’

coped with the many challenges associated with transplantation, including

management of the side effects of the post-transplant treatment regimen.13 Data

regarding the experiences of HT recipients from these qualitative studies are rich in

detail. For this reason, they have the potential to inform the complexity of poor

psychological outcomes after HT in far more depth than has previously been

available in quantitative studies and reviews.14 However, to the authors’ knowledge,

the findings from these qualitative studies have not been considered in any previous

review of post-HT psychological outcomes.4, 9

Integrating findings from the numerous qualitative studies that have been published

might help to highlight potential mechanisms for how the complex interplay of

physical health and psychosocial factors, such as emotions, coping ability and social

support, ultimately contributes to psychological distress and the development of

psychological disorders. Thus, the aim was to integrate published qualitative

research findings regarding the experiences of adult HT recipients. We defined

qualitative findings, which included yet were not limited to emotions, perceptions and

attitudes, as ‘experiences’. The knowledge derived from an integration of the

findings from qualitative studies could ultimately aid practice by informing the

development of novel interventions focused on improving post-transplant

psychological outcomes.

6

Methods

A systematic review and meta-summary of qualitative findings guided by the

methods described by Sandelowski and Barroso were conducted.15 A meta-summary

is the integration of qualitative findings based on quantitative logic, in that the

frequency of findings is used as the indicator of validity.16

Meta-summary is one particular approach of many that can be used to integrate

qualitative findings from more than one research study. It can be performed either in

isolation or as preliminary work that is conducted prior to performing a meta-

synthesis. Meta-summary is most often performed in isolation when the qualitative

findings to be included in the research integration study are judged by the reviewers

to be in the form of what Sandelowski and Barroso described as, ‘summaries’ of

qualitative data as opposed to interpretive syntheses.17 Sandelowski and Barroso

posited that only qualitative findings of synthesized data should be subjected to

meta-synthesis.18 As such, in circumstances in which the majority of findings are

judged to be ‘summaries’ of qualitative data instead of ‘syntheses’, the meta-

summary method is appropriate.18

Literature search

Studies were identified by searching the Medline, CINAHL, EMBASE and PsycINFO

databases from 1995-end 2012. Keywords relevant to the population (heart

transplant recipients) and the type of study (qualitative) were used. The search

strategy used for the MEDLINE database is presented in a Supplementary File.

Reference lists of potentially relevant studies and the forward citation search capacity

of Google Scholar were also used to identify potentially relevant articles.

7

Study Selection

Titles and abstracts were screened to identify primary research studies, which

presented qualitative findings related to the experiences of HT recipients. This review

did not focus on a particular post-transplant time period because studies have

identified that psychological distress is present both early and long-term post-

transplant.19, 20 This review included studies that focused on the experiences of

adults, rather than paediatric and adolescent HT recipients because of differences in

the aetiology of heart failure between these two distinct subsets of the population.21

Furthermore, paediatric and adolescent HT recipients have unique experiences, such

as struggling with independence from parents.22 Studies that examined the

perspectives of caregivers or families of adult HT recipients were excluded.

Research designs that involved techniques for data collection, analysis and

interpretation that are commonly viewed as qualitative research methods, such as

open-ended interview questions, face-to-face or focus group interviews and thematic

or content analysis, were included. Studies that involved a mix of quantitative and

qualitative methods were also included. Only studies published in full text after 1995

were considered eligible for inclusion in this review. This decision was based on the

fact that there had been considerable improvement in outcomes as well as changes

in treatment for HT recipients in recent years, mostly related to the advances in

immunosuppression regimens. 4, 7, 23 Only studies published in English were

considered for inclusion. However, in order to determine the extent to which this

constraint might impact the results, we did not limit the search strategy to return only

articles published in the English language. The full text version of all articles

identified as being potentially relevant to the inclusion criteria outlined above was

retrieved and read by two reviewers for a final determination of study inclusion.

8

Difference of opinion regarding study inclusion between the two reviewers was

resolved through discussion and consultation with a content expert if required.

Data extraction

A standardized form was used to evaluate and extract data related to 14 different

aspects of each study judged to have met the inclusion criteria, such as the research

problem, methods, findings and discussion.24 This form was developed specifically

for reports of qualitative studies included in research integration studies.24

Statements of findings, which were relevant to the experiences of HT recipients,

were extracted into one section of the reading form. A finding was defined as a

statement, which was intended by the authors of the study to represent a recurring

event or element across either an entire sample or specified portion of the sample.15

Where studies used mixed methods we extracted only the qualitative findings. No

studies were excluded based on poor quality, as research has shown that appraisal

of qualitative studies is highly idiosyncratic.15, 25 As such, the omission of findings

from a qualitative research integration study based on a reviewer’s judgement of

inadequate reporting or methodological mistakes could lead to the exclusion of

findings with important implications for practice.18 Instead, similar to previously

conducted meta-summaries, and also in accordance with guidance from

Sandelowski and Barroso’s typology of what does and does not constitute a finding

in qualitative research, only selected findings from included studies for which there

was no evidence of how a set of qualitative data was transformed into a finding were

excluded.17

Integration of findings

Three important general characteristics of the studies included in the review were

identified during the data extraction process. First, it was evident that a number of

9

different qualitative methods, such as grounded theory and phenomenology, had

been used. Second, some studies did not state that a particular qualitative method

was used. Instead, the authors described that data were analysed using ‘content

analysis’. Third, many studies reported summaries of qualitative data organized into

general topics or ‘themes’ as opposed to interpretive syntheses.17 For these reasons,

and in accordance with the guidance for qualitative research integration from

Sandelowski and Barroso, we decided that the integration of findings from these

studies would be more suited to an aggregative rather than interpretive approach.18

As such, we did not proceed to perform meta-synthesis.

In this regard, a list of abstracted findings, which was intended to accurately capture

the content and meaning of all the extracted findings as well as to eliminate

redundancies, was produced.15 This was achieved by reading and re-reading the list

of extracted findings until each statement was listed beneath a corresponding

abstracted finding. The completed list was checked by a second reviewer to ensure

extracted findings were categorized into a representative abstracted finding.

Difference of opinion regarding abstraction of findings between the two reviewers

was resolved through discussion. Frequency effect sizes were then calculated in

order to quantify the strength of the abstracted findings, thus ensuring the importance

of these findings was not under or over-emphasized.15 The frequency effect size of

each abstracted finding was calculated by dividing the number of studies with a

selected abstracted finding by the total number of studies from which findings were

extracted to be included in the meta-summary.15

Results

Results of the search strategy are presented in Figure 1. From 17 potentially relevant

studies, eight were judged to have met the inclusion criteria. Table 1 presents a

10

summary of these studies. Two of the studies reported analyses undertaken using

the same dataset.12, 13 The research designs differed considerably across all the

studies. One study reported using mixed methods,11 two studies reported that

grounded theory was used,12, 26 two studies reported using phenomenology10, 27 and

three reported using exploratory or interpretive descriptive research designs.13, 28, 29

Sample sizes ranged from three to 42. In total, there were 154 HT recipients included

in our review. Apart from one study that enrolled exclusively female participants,11 in

all other included studies, more men than women participated. The setting of the

studies varied, with three studies each conducted in North America and the UK, while

one study was conducted in Brazil and a further study in Taiwan. All studies involved

face-to-face interviews.

Of note, due to the fact that it was reported that a ‘qualitative design’ and ‘in-depth

interviews’ were used, the study by Lin et al.28 met the inclusion criteria set for this

review. However, the report of findings in this study was not supported with data from

the participants. Instead, the findings presented were a list of the frequency with

which various topics were reported by the participants in the interviews that were

conducted. For this reason, this study’s findings were judged to be consistent with

what Sandelowski and Barroso described in their typology as a ‘topical survey’,

which is not defined by these authors as qualitative research.17 As such, no findings

were extracted from this study to be included in our meta-summary.17

A total of 131 findings regarding the psychological impact of HT were extracted from

the qualitative studies included in this review. These extracted findings were

summarized into 16 abstracted findings, which are presented according to their effect

size in Table 2.

11

A complex array of experiences were identified across the qualitative studies

included in this review. Some of the experiences (effect size 57%) were positive,

such as having a sense of gratitude and pride.11, 27 In addition, HT recipients

experienced a strong sense of altruism post-transplant.10, 11, 27 Others were negative

experiences (effect size 57%), though, such as feeling fearful, being depressed,

experiencing a sense of guilt and even feeling the need to grieve.10-13, 26 Even though

they were not known to the recipient, a sense of grief was expressed for the loss of

the donor’s life as well as for the recipient’s own heart that had needed to be

transplanted.10, 12

The most prominent finding across the studies related to the support that was

received by the HT recipients (effect size 71%). Having adequate support from a

variety of sources, including family, friends, previous HT recipients and the transplant

healthcare team, was considered to be essential throughout the HT experience.

However, too much support from family members at a time when the HT recipient

was trying to readjust back to normal life was noted as an impedance to recovery

and even a source of potential conflict within family dynamics.26 Receiving support

from others who had previously undergone HT was considered particularly beneficial

as HT was viewed by recipients as a unique experience (effect size 29%).10, 29

Other prominent findings related to factors that recipients considered helpful to their

recovery and psychological well-being. One such factor was having faith. This finding

was quite common across the studies (effect size 57%).10, 11, 13, 27 Accepting that life

post-transplant involves continued challenges, such as the threat of rejection, was

another common finding (effect size 29%).11, 13 Being optimistic was another method

by which HT recipients dealt with the challenges associated with life after transplant

(effect size 57%).11, 13, 26, 27 For example, recipients compared themselves with

someone whom they considered to be in situations that were worse than their own.13

12

Using active coping strategies was identified as a way to aid recovery (effect size

14%).27

Perceived control over health and daily living was noted to be an important driver of

HT recipients’ psychological well-being (effect size 29%).11, 26 However, many

experiences influenced HT recipients’ ability to maintain control. Examples include

sudden deteriorations in health that required hospitalisation, which required

recipients to cede control to others (i.e. caregivers and healthcare providers).26

Heart transplantation also gives recipients a sense of hope for their future (effect size

29%). As such, recipients are able to set new goals and priorities for their life post-

transplant (effect size 57%). They set about regaining a sense of normality in their

lives (effect size 43%) and gaining independence to care for their own health (effect

size 43%).

Findings regarding the phenomenon of denial post-HT, both as a psychological

experience that could be beneficial12 and detrimental13, were reported in the studies

(effect size 43%). Denial was used by HT recipients as a strategy to deal with

negative emotions about the donor.12 Others were in denial about the challenges that

they would necessarily face in the future, as evidenced by the avoidance of

interactions with other HT recipients.13

Discussion

The most prominent finding across the studies indicated that social support is

important for recipients’ psychological well-being.10, 13, 29 Moreover, it seems that the

importance of social support during recovery from HT may not be culturally-specific,

as the studies were conducted across a variety of regions including the US, Canada,

Brazil and the UK. This finding is consistent with results of many quantitative studies.

Self-perceived family support predicted quality of life in a study of 150 HT recipients

13

in Taiwan.30 Dew et al., found that HT recipients with lower social supports are at

increased cumulative risk for psychological disorders.31 Evidence also indicates

social support is an important contributor to long-term post-transplant health. At both

five and 10 years after HT, satisfaction with social support predicted HRQOL (r2 =

0.59, P < .0001; r2 = 0.66, P < .0001 respectively).32 Our meta-summary extends

these quantitative findings by providing insight into the role of healthcare provider

and family caregiver support as perceived by transplant recipients. Findings

highlighted the importance of support transitioning to an appropriate level that

permits the recipient to gradually take back responsibility for their care. Such an

approach may promote recipients’ sense of independence and instill a strong sense

of perceived control over health and daily life. Further research is required to

explicate how best to promote a post-transplant recipient-caregiver partnership to

healthcare decision-making that is different from the pre-transplant caregiver-

recipient relationship and supports the transplant recipient’s transition back to

independence.

On a related note, findings indicate that HT recipients experience the sense of losing

control over their health and daily lives during periods of sudden deterioration in

health that require hospitalisation, which was detrimental for their psychological well-

being.11 This finding is also consistent with other research, which found that

perceived control was associated with emotional adjustment after HT.33 A further

study reported a statistically significant (p<.05) positive correlation between personal

control and well-being (r=0.52).34 Therefore, during hospitalisations for investigation

and treatment of, for example, acute allograft rejection or infection, healthcare

providers should consider it a priority to provide the HT recipient with as many

opportunities to care for themselves as possible. Other interventions, which have

been shown to increase perceived control in cardiac populations, include reframing

14

techniques in which an acute event is view not as something that is uncontrollable,

but as an isolated exacerbation of a chronic condition that can be controlled with

adherence to prescribed medications and lifestyle modifications.35 Interventions to

improve perceived control have not been tested specifically in the HT population.

Thus, this is an area of research that should be considered for investigations in the

future.

The uniqueness of the HT experience was another prominent finding across the

qualitative studies. We also identified that HT recipients experience a strong sense of

altruism post-transplant. Together, these findings suggest that peer-support

programs for HT recipients may be a “win-win” strategy. They would give new

recipients access to others who share their unique experience, and they would

provide experienced recipients a means to act on their sense of altruism.11, 27

Because evidence of the impact of support group interventions on psychological

outcomes for HT recipients is equivocal, further study is needed.9, 36 One mechanism

by which support group interventions may promote post-transplant psychological

well-being is by helping their peers to maintain an optimistic outlook. Findings from

qualitative studies indicated that being optimistic aids coping with their illness and

recovery (effect size 57%).11, 13, 26, 27 A quantitative study has reported similar

positive associations between optimism and psychological well-being. At three

months post-transplant, positive expectations were significantly associated with good

mood (r=-0.64; p<0.05), and quality of life (r=0.66; p<0.01).37

The finding that HT recipients’ engagement in their faith was important to the

maintenance of their psychological well-being and overall health was noted in several

studies.10, 11, 13, 27 Evidence from a small quantitative study corroborates these

findings. It was found that heart transplant recipients with strong beliefs who

participated in religious activities had better physical and emotional well-being, fewer

15

health worries and greater medical compliance.38 Translation of this finding into

clinical practice will require further inquiry, but merits consideration because of its

prevalence across qualitative studies.

Deficiencies in the literature and corresponding implications for research

In this review, we have identified that only one qualitative study’s specific aim was to

investigate post-transplant psychological problems. However, this study recruited a

convenience sample of participants as opposed to purposefully selecting participants

who had displayed objective evidence of psychological problems or disorders.12

While the stated aim in the mixed methods study by Evangelista et al.11 was to

explore the experiences of HT recipients as opposed to psychological problems

specifically, it was reported that the mean value for psychological distress among the

33 female HT recipients was in the moderate to high category. Findings from the

group of participants who did exhibit high levels of distress could not be separated

out though. Therefore, no qualitative studies have investigated the experiences of HT

recipients who have been diagnosed with psychological disorders. This is an area

that will require further research, as increased understanding of how the symptoms

emerge and evolve over time in HT recipients who meet the criteria for diagnosable

psychological disorder could help to inform the development of targeted interventions

for prevention and treatment.17

Also of note, quantitative studies have reported gender differences in risk for

psychological distress. Female gender was identified as a factor that increased

cumulative risk for psychiatric disorder post-transplant.39 A recently identified

potentially contributing factor for this increased risk is that women perceived worse

distress associated with post-transplant physical symptoms than men.40 Interestingly

though, substantial differences in post-transplant experiences between genders were

16

not reported in the qualitative studies included in this review. This could be due to the

fact that most studies included a majority of male participants. Yet, effect sizes

presented in Table 2 clearly demonstrate that all the abstracted findings present in

the study which enrolled a sample that consisted entirely of women were also

present in at least one other study included in the review (Table 2).11 Further

qualitative research specifically investigating gender differences would be beneficial,

as this review of existent qualitative findings was unable to identify any gender-

specific issues that might explain differences in post-transplant psychological

outcomes between male and female HT recipients.

As noted throughout the discussion above, when the findings from the qualitative

studies are considered within the context of previous evidence derived from patient

outcome studies, there is support for the conduct of research into the effectiveness of

numerous interventions to improve psychological outcomes. These include

interventions which improve perceived control, support group interventions and

caregiver-focused interventions to promote a post-transplant recipient-caregiver

partnership that supports the transition back to independence.

Limitations

A limitation to be noted is that only studies published in English language were

included. However, only one potentially relevant study published in another language

was uncovered in our search of the literature. A further limitation was that only

published literature was included in our review. Also, while the study reported by

Sadala et al.10 met the inclusion criteria, because it did not focus specifically on

paediatric or adolescent HT, it should be noted that 4 of the 26 HT recipients were

less than 18 years of age at the time of transplant. However, none of the findings

presented by the authors were noted to be exclusive to these recipients.10 Therefore,

17

it is unlikely that including this study in the review impacted on the conclusions drawn

about adult HT recipients.

Conclusion

This review is the first integration of qualitative findings regarding the experiences of

adult HT recipients. Prominent findings were that: HT gives rise to a complex set of

both positive and negative experiences and HT recipients perceive that social

support, having faith, being optimistic and maintaining a sense of control over one’s

health and daily life promotes psychological well-being. Interestingly, findings related

to sense of control and social supports are consistent with results of quantitative

studies. Yet, the qualitative findings increased understanding of these phenomena by

providing insight into the particular circumstances in which HT recipients experience

the sense of losing control and the specific sources of social support they perceive to

be the most important. As such, these findings could ultimately aid practice by

informing the development of novel interventions focused on improving post-

transplant psychological outcomes. Specific recommendations for such

investigations were outlined. Other post-transplant experiences deemed by recipients

to promote psychological well-being were identified that had not been articulated in

the previous reviews of quantitative studies. In response to these findings, we

presented recommendations for further inquiry.

Acknowledgements

The authors have no conflicts of interest or sources of funding to disclose.

18

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Heart Transplantation. Journal of Cardiovascular Nursing. 2012. DOI:

10.1097/JCN.0b013e3182532672

33. Kugler J, Tenderich G, Stahlhut P, et al. Emotional adjustment and perceived

locus of control in heart transplant patients. Journal of Psychosomatic Research.

1994; 38: 403-8.

22

34. Bohachick P, Taylor MV, Sereika S, Reeder S and Anton BB. Social support,

personal control, and psychosocial recovery following heart transplantation. Clinical

Nursing Research. 2002; 11: 34-51.

35. Denollet J and Brutsaert DL. Reducing emotional distress improves prognosis

in coronary heart disease. Circulation. 2001; 104: 2018-23.

36. Wright L, Pennington JJ, Abbey S, Young E, Haines J and Ross H.

Evaluation of a mentorship program for heart transplant patients. The Journal of

Heart and Lung Transplantation. 2001; 20: 1030-3.

37. Leedham B, Meyerowitz BE, Muirhead J and Frist WH. Positive expectations

predict health after heart transplantation. Health Psychology. 1995; 14: 74.

38. Harris RC, Dew MA, Amaya M, Buches L, Reetz D and Greta Coleman MSW

L. The role of religion in heart-transplant recipients' long-term health and well-being.

Journal of religion and health. 1995; 34: 17-32.

39. Dew M, Kormos RL, DiMartini AF, et al. Prevalence and risk of depression

and anxiety-related disorders during the first three years after heart transplantation.

Psychosomatics. 2001; 42: 300-13.

40. Jalowiec A, Grady KL and White-Williams C. Gender and age differences in

symptom distress and functional disability one year after heart transplant surgery.

Heart & Lung. 2011; 40: 21-30.

Table 1 Summary of included studies

Author (Year) Country Stated Method Data collection Study focus Sample

Evangelista et al. (2003)11

USA Mixed method, content analysis used to analyse qualitative data

Semi-structured interviews

Women’s perceptions of their transplant experiences

33 women who had their heart transplant an average of 4.6 years prior to participation in the study (range 1-22 years). Sample had moderate to high levels of anxiety, depression and hostility as measured by the Multiple Affect Adjective Checklist.

Hallas et al. (2009)27 UK Grounded theory Semi-structured interviews

Compare experiences of patients with a VAD, those who had previously had a VAD, which was explanted, and those who had received VAD therapy before receiving a heart transplant

4 with a VAD, 4 explanted and 3 heart transplant recipients.

Kaba et al. (2000)13 UK Interpretive, descriptive research design

One-on-one unstructured interviews

Descriptive study of methods of coping

35 men and 7 women aged between 32 and 61. Participants were between 2 months and 2 years post-transplant.

Kaba et al. (2005)12 UK Grounded theory One-on-one unstructured interviews

Descriptive study of psychological problems after heart transplant

35 men and 7 women aged between 32 and 61. Participants were between 2 months and 2 years post-transplant.

Lin et al. (2010)26 Taiwan Exploratory descriptive qualitative design

Face to face in-depth interviews were performed with a semi-structured guide.

To identify the ‘dark recovery experiences’ that adult heart transplant recipients perceived as causing the most suffering

16 men and 4 women ranging in age between 32 and 70 years (mean 47). Participants were between 3 months and 2 years post-transplant.

Mauthner et al. (2012)30

Canada Qualitative, descriptive explorative

Semi-structured face to face interviews

Heart transplant recipients’ thoughts on their preparation and support through the transplant process

18 men and 7 women aged 18-71 years (mean 53 years). The mean time since transplant for the sample was 4.3 years (+/- 2.4 years).

Sadala et al. (2008)10 Brazil Phenomenology Unstructured interviews with first question, “What does the experience of living with a donor heart mean to you?”

To understand the heart transplantation experience from the recipients’ perspectives

26 heart transplant recipients aged between 15 and 71

O’Connor et al. (2009)29

Canada Phenomenological reduction

Interviews as per Phenomenological reduction approach developed by Giorgi (1985)

Improve knowledge concerning representations of illness

5 heart transplant recipients, without a previous psychiatric diagnosis, aged between 18 and 65 who were all within 3 months of their surgery.

Table 2 Frequency effect sizes of abstracted findings

Abstracted finding Effect size

1. Social support from family, friends, other transplant recipients

and the transplant healthcare team can promote heart

transplant recipients’ psychological well-being, but it can also

impede recovery if it prevents recipients’ from regaining a

sense of independence and control over health and lifestyle10,

11, 13, 27, 30

71%

2. Heart transplantation gives rise to negative psychological

experiences, including Fear,11 Depression,11, 13 Frustration,11

Regret,12 Guilt,12 Grief,10, 12 Discrimiated,10 Mood swings,27

57%

3. Heart transplantation gives rise to positive psychological

experiences, including Pride,11 Gratitude,10, 12, 29 Altruism10, 11, 29

57%

4. Faith is important for psychological well-being of heart

transplant recipients10, 11, 13, 29

57%

5. Recipients experience the heart transplantation as an

opportunity to set new goals and priorities for their life10, 11, 13, 29

57%

6. Maintaining an optimistic outlook helps heart transplant

recipients cope with their illness and recovery11, 13, 27, 29

57%

7. The period post-transplant is a time of uncertainty about the

future, quality of life, long-term health and personality change

due to HT 10, 12, 27

43%

8. The phenomenon of denial post heart-transplant can be

beneficial and detrimental to the psychological well-being of

heart transplant recipients10, 12, 13

43%

9. Heart transplant recipients strive for a sense of ‘normality’ 43%

post-transplant10, 27, 29

10. Heart transplant recipients strive for independence10, 27, 29 43%

11. Maintaining control over health and lifestyle is crucial to

psychological wellbeing11, 27

29%

12. Acceptance of the new challenges post-transplant is

important for psychological well-being11, 13

29%

13. Heart transplantation is a unique experience10, 30 29%

14. Heart transplantation produces a sense of hope10, 30 29%

15. Heart transplant recipients display both active and passive

coping styles29

14%

16. Psychological experiences have an impact on health27 14%

Records identified through database searching (duplicates removed)

n=124

Potentially relevant articles retrieved in

full-text n=17

Studies included in the review

n=8

Additional records identified through other

sources

Forward citation search using

Google Scholar n=2

Bibliography search n=1

Excluded, with reasons

Not published in English n=1

Focused on interview technique and did not

report qualitative findings

n=2Adolescent n=1

Caregiver’s perspective n=2

Could not distinguish heart transplant

participants’ data from whole sample n=3

Figure 1. Results of search strategy

Supplementary file - Medline search strategy

S10 (S1 OR S2 OR S3 OR S4) AND (S5 OR S6 OR S7 OR S8 OR S9)

S9 qualitative stud*

S8 focus group*

S7 phenomenology

S6 ethnograph*

S5 thematic

S4 heart transplant*

S3 cardi* allo*

S2 heart allo*

S1 cardi* transplant*