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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: [email protected] 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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Satisfaction With Social Support, Quality of Life, and Survival 5 to 10 Years After
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.
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22
34. Bohachick P, Taylor MV, Sereika S, Reeder S and Anton BB. Social support,
personal control, and psychosocial recovery following heart transplantation. Clinical
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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
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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*