Aim

The aim of this review was to assemble evidence about the meaning of heart, lung, or heart and lung transplantation to adult transplantation recipients.

Design

A systematic review was conducted in accordance with PRISMA guidelines [26] of papers reporting research that had used qualitative research methods to investigate recipients’ perspectives on heart, lung, or heart and lung transplantation. The review protocol was registered on PROSPERO (CRD42017067218). As a review of published work, ethical approval was not required.

Search methods

Papers were eligible for inclusion in the review if they reported original research using qualitative research methods to investigate adult recipients’ experiences of heart, lung, or heart and lung transplantation and were published in English in peer-reviewed journals. No date limits were set. Exclusion criteria were that others (such as parents or support persons) described patients’ experiences, that no participants had yet received a transplanted organ, and that the researchers reported transplant recipients’ views only on a specific intervention.

Seven databases (Ovid, Ebscohost, ProQuest, Web of Science, Family and Society Plus, Sociological Abstracts, and International Bibliography of the Social Sciences) were individually searched using the MESH terms [‘transplant*’] AND [‘heart’ OR ‘lung’ OR ‘heart-lung’ OR ‘heart and lung’ OR ‘cardiothoracic’] AND [‘qualitative’ OR ‘interviews’ OR ‘experience’]. To ensure that eligible papers not found on these databases were detected, we searched Google Scholar using the terms ‘heart transplant qualitative’ and ‘lung transplant qualitative’ and examined the reference lists of articles identified from the database search. The initial search was conducted in May 2017 with a second search for any subsequent publications on 22 July 2019.

Search outcome

The search and selection process is detailed in Fig 1.

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Fig 1. Flow chart: Articles yielded by the search, process of exclusion, & articles (+ studies) reviewed.

https://doi.org/10.1371/journal.pone.0241570.g001

The 24 eligible papers (reporting data from 20 studies) are summarised in Table 1.

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Table 1. Summary of reviewed papers.

https://doi.org/10.1371/journal.pone.0241570.t001

The research was conducted in 11 countries, all categorised as high or upper-middle income: Australia (1), Brazil (1), Canada (2 studies, 3 papers), Denmark (1), Iran (1), Scotland (1 study, 2 papers), Sweden (5 studies, 7 papers), Switzerland (1), Spain (1), UK (3), and USA (3). All used interviews (in-depth or semi-structured) to gather data. The majority (278/353: 79%) of recipients had received a heart; 68 had received a lung or lungs; and one had received a heart and lungs. Most participants were recruited from their post-transplantation clinics. There were 353 participants (aged 16–72 years) in the studies, with slightly more female participants than male participants. Few other participant characteristics (such as socio-economic status, sexual orientation, and ethnic identity) were presented. With the exception of a paper specifically reporting women’s experiences [27], no paper reported gendered aspects of the experience of transplantation.

Quality appraisal

The quality of selected articles was assessed using an established checklist [28] modified by the inclusion of an additional criterion that we consider to be essential: the presence of a statement of approval from an institutional human research ethics committee. This addition meant that scores (ranging from 0 to 1) were based on 11 items rather than 10. Authors scored independently and resolved any differences by discussion; final scores were reached by agreement.

Quality assessment scores ranged from 0.77 to the maximum of 1.0; details are in Table 2. Most papers (17) scored zero for reflexivity. There was no statement of approval from a human research ethics committee in two papers [29, 30]; authors’ responses to our written queries are noted in Table 2.

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Table 2. Quality assessment (after Kmet et al., 2004).

https://doi.org/10.1371/journal.pone.0241570.t002

Data abstraction

Both authors collaborated on data abstraction and synthesis, which benefited from the insights of Author 1 as a recipient (in 1996) of a donated heart and lungs. Some papers required detailed searching to identify the data of interest because they were not presented systematically or succinctly. Where eligible studies included ineligible participants (such as family members or recipients of other organs) we excluded their data.

Data abstracted were the country in which the research was conducted; the aim; the number of participants, the organ(s) received, their sex, age range, and time since transplant; the method of data collection; the method of analysis; and details of the Results or Results and Discussion sections.

Synthesis

Abstracted results were analysed thematically, using a standard, iterative, qualitative method [31]. As new themes were identified in each paper, all papers were searched to establish whether that theme could be found there. Whether or not the reviewed papers presented their data thematically, we generated our own themes from the results and took care not to privilege research that had been analysed thematically. In developing the thematic scheme that best synthesised the results from all studies, diagrams and flow charts were used to aid conceptual understanding. No software was used in the analysis. Any differences of opinion between the authors were resolved by discussion. All aspects of the analysis were undertaken and completed by collaboration and discussion between the authors, who reached agreement on every detail.

Pre-transplant

Participants were reported as reflecting on their pre-transplant lives, whether from the other side of organ transplantation or, in the case of three studies [37, 46, 49], from the perspective of those still awaiting an organ. We identified both the Dynamic psychosocial impact of contemplating organ transplantation and the mechanisms of Resources and support.

The psychosocial impact of being listed for a donated organ was profound and variable. We categorised research participants’ reported feelings as Threats to self and a Sense of inadequacy. It was evident that contemplating and accepting listing for transplantation entailed or amplified realisation of the illness’s existential threat. Participants in three studies described their shocked reactions to the prospect of transplantation and the anxiety provoked by eligibility tests [33, 37, 47]. Fear was presented as a common accompaniment to thoughts about transplantation and its implications, as well as to the chronic illness that necessitated a donated organ [27, 32–34, 38]. Potential recipients worried about the effects on their family; those who were parents expressed particular concern about when and how to discuss illness and transplantation with their children [27, 34, 35, 38, 50].

The clinic attended by those waiting for an organ was reported to be a central figure in some participants’ accounts; this figure could be both menacing and reassuring [34, 37, 44, 48]. Because phone calls from the clinic could mean that an organ was available, any clinic call created anxiety. If the call was simply a welfare check, it reassured some participants that the clinic had not forgotten them but it disappointed others. “False alarms,” where the patient had been called to hospital for a transplant that did not proceed, were reported by participants as provoking uncertainty, frustration, and disappointment [37, 47]. Clinic visits could incite the same feelings in those waiting [48].

Participants were reported as describing a sense of personal inadequacy engendered by the idea and process of transplantation [39, 47, 48, 51]. Guilt often underpinned this, whether from feeling responsible for the illness that necessitated transplantation or because of hoping for the death of a suitable organ donor [39, 47, 51]. It was found in one study that participants had been eager to prove that they deserved a place on the transplantation list [44]; this could be understood as revealing the absence of a sense of entitlement.

The limitations imposed by chronic illness and the need for a donated organ were reported in 10 papers from 8 studies to have left participants without a sense of agency; illness and waiting for “The Call” created an uncertain environment in which periodic crises replaced a familiar life [27, 32–35, 37, 47, 48, 50]. Participants in one study were reported as saying that a long wait for transplant allowed for “brooding and reflection” which led to “fear” [32]. Illness was also reported to have been experienced as isolating; at the same time, where life-saving equipment was needed, it made one inescapably dependent on others [34, 48]. Even when those on the waiting list consciously attempted to distance themselves from the severity of their illness, the demands of managing illness made this psychologically and physically difficult [48]. Researchers in two studies interpreted some of their participants’ actions as attempts to regain control [37, 50]. Actions included avoiding anxiety-provoking stimuli, such as news of war, and being meticulous about diet, one of the few ways in which participants felt they could contribute to optimal pre-transplantation health.

In their attempts to cope with the existential threat and practicalities of their circumstances, research participants reported drawing on various Resources and supports; they also described the support they wished had been available. Some resources were internal: optimism, positive thinking, faith, and hope [27, 43, 50]. Clinicians constituted an important external source of support [27, 34, 37, 44, 49], both psychological and practical [27]; practical support could be as simple as information [34]. There were reports that research participants had expected or needed pre-transplant support that had not been forthcoming [34, 49]. Peer support could be valuable to those awaiting transplantation, but it was not inevitably so. Peers could provide reassurance, first-hand information, explanations of the decision-making process, inspiration, a sense of trust in the future, and hope [34, 37, 49, 50]. The accessibility of peer support varied, with Swedish participants reporting that they had met with transplant recipients [34] whereas Canadian participants did not have that option [49]. Participants in another study were said to have avoided peers, preferring not to know what lay ahead [50].

Transplant

One study [33] focused on the transplantation operation and the post-operative period; other studies included these experiences. We identified The Call and the intensive care unit (ICU) as the major sub-themes of this relatively brief but intense time.

“The Call” is the telephone call summoning the candidate to hospital because an organ is available. When The Call does not result in surgery it is known as a false alarm. Research participants were reported as viewing The Call with a mixture of “fear”, “disbelief,” and “reverence”; it could be the culmination of waiting for salvation, “a very beautiful experience”, or the instigator of “shock,” “emptiness,” and, in the researchers’ words, “anxiety” and “uncertainty” [33, 34, 37, 38].

Being in the ICU after surgery generated powerful yet diverse memories. Some research participants reported experiencing physical well-being, euphoria, and relief in the ICU [32, 33, 38, 39]. A study designed to understand the phenomenon known as ICU delirium explored the vivid post-operative hallucinations often experienced by organ recipients, which can be extremely frightening [33]. Physical mobilisation while in the ICU could provoke anxiety, although once accomplished it boosted confidence [32]. Recipients were found to be grateful for information given before surgery about physical activity during their ICU stay and for support for such activities [32, 35].

Post-transplant

The main focus of most of the reviewed papers was recipients’ lives after transplantation, whether in general or with a specific focus: adherence to the medication and medical regimen [42], recovery [36], psychological problems [41], “coping” [50], fantasised donor-recipient relationships [30], and graft rejection [43]. The three sub-themes that best accommodated all results were Dynamic psychosocial impact, Management, and Rejection.

The whole experience of organ transplantation has a Dynamic psychosocial impact that continues after surgery. Recipients reported feeling Hope, comparing their Expectations and reality, reflecting on the Donor, experiencing changes to Identity, and continuing to feel a Sense of inadequacy.

Participants in eight studies are reported to have described the transplantation as the beginning of Hope, enabling them to avoid incipient death and experience a healthier life [27, 29, 32, 33, 36, 44, 45, 51]. They used phrases such as a “second chance”, “being born again”, “back to normal,” and a “resumption of life”. Researchers at times characterised these phrases as expressions of gratitude [29, 34, 35, 37, 39, 41, 44] and demonstrations that recipients were “different” people from their pre-transplantation selves [38, 47]. The hope reported in the post-transplant period appeared to be an important component of the dynamic psychosocial impact of the transplant rather than the resource it constituted in the pre-transplant period.

Research participants were reported as comparing their Expectations of transplantation with the Reality of their experience. Although most participants were satisfied with transplantation, it was found that many experienced a longer than anticipated recovery process and had not expected to encounter problems, including post-transplant illness, various stresses and strains, and the possibility of organ rejection [27, 29, 32, 33, 35, 37, 40, 45, 48, 49]. Participants in an Iranian study expressed regret that they had consented to transplantation because of the resulting suffering, although such feelings were balanced by satisfaction that their lives had been extended [45]; the authors did not report on the time since transplantation of those who were regretful. One paper reported that recipients felt better than expected [36].

The seven studies that included investigations of recipients’ reflections on their organ Donors found that most avoided or denied thinking about them [30, 35, 38, 39, 41, 45, 46, 48, 50]. Two studies revealed that the language used to convey thoughts about donors was often mechanistic, allowing recipients to separate themselves from the visceral realities of transplant [39, 52]. Those who did disclose such thoughts reported frequently shedding tears and wondering about the age and sex of their donor, whether the donor was a better person than the recipient, and what expectations the donor family had of them; they found it difficult to cope with the realisation that their donor left a grieving family [32, 35, 39, 48, 50, 52]. A few recipients were concerned that they had been complicit in the mutilation of a corpse [39].

Recipients could feel indebted to the donor and the donor’s family and regret that saving their own life necessitated another person’s death [38, 39, 41, 45]. Recipients were reported as speaking defensively about having been given a scarce resource, some pointing out that they alone were suitable candidates or eager to prove that they were worthy by strict adherence to medical advice [38, 44]. They might have chosen not to reveal their age to the donor’s family to avoid provoking regret that the organs were not donated to someone younger. One recipient’s account revealed a deep sense of obligation to the donor; recognition of the donated lungs was, at times, the only thing that kept the recipient from committing suicide [37]; the authors did not state how much time had passed since her transplant. Because it was implied in the paper from Iran that recipients had developed relationships with the donors’ families [45], we contacted the Organ Procurement Unit at the Shahid Beheshti University of Medical Sciences, Tehran. We learnt that donor anonymity is not mandated in Iran although it is usually practised [personal communication, 29 April 2017].

Identity that had previously been defined in relation to a congenitally diseased heart was reported to be uncertain for transplant recipients with some recipients mourning the loss of their original heart [38, 41, 47, 52]. A recipient’s relation to donated lungs (and associated sense of identity) could change over time, from perceiving the lungs to be completely external, through a transitional position in which the organs are shared by donor and recipient, to finally accepting the lungs as theirs [30, 38]. Some recipients were reported as musing on the changes in their relationship with the donated organ [52]. These psychological changes were identified as associated with physical recovery [30]. Some researchers found that their participants were either concerned that they would assume the donor’s identity or believed that the donated organ had changed their identity [39, 45].

A fluid identity contributed to a Sense of inadequacy; an initial release from dependence on others was followed, for some participants, by a realisation that they had not escaped being defined by illness or that they were now a “post-transplant person” [33, 38, 43, 48, 52]. Although some researchers reported that recipients (re)gained a sense of agency, it could be only temporary because they found themselves once again subject to impositions such as taking medication, avoiding certain foods, and exercising [33, 35, 37, 43, 44, 47, 48]. In contrast, other recipients found that mastering these routines gave them a feeling of control and that the process of transplantation revealed an inner strength they had not known they possessed [32, 33, 36, 47, 51]. The vigilance necessary to detect an episode of rejection could contribute to loss of agency, with recipients feeling “married” to the transplant team and restricted by protective measures imposed by families concerned about their health [29, 45]. Gratitude, expressed by recipients towards donors, donors’ families, medical staff, and supportive family and friends, could thus be complicated by resentment and guilt, particularly if the outcome were disappointing [27, 30, 33, 35, 37, 41, 44, 47, 51]. A sense of inadequacy could be exacerbated by feelings of disenfranchised grief, arising from recipients’ inability to reciprocate “the gift of life” and from unacknowledged or disallowed mourning on behalf of the donors and their families [46, 48].

Guilt was a powerful component of the sense of inadequacy. For example, there were indications of magical thinking in which recipients expressed the belief that they could control the biological process of graft rejection (beyond medication adherence) and would blame themselves for “causing” an episode of rejection [43]. Transplantation anniversaries were sensitive markers of both celebration and mourning, with some recipients feeling complicit in another’s death and those experiencing graft rejection burdened by a sense of having failed to honour an implicit contract to ensure transplant success [30, 33, 37, 41, 44, 46, 47]. Recipients were found to continue experiencing a tenuous grasp on life: organ transplantation does not necessarily resolve the existential tension between life and death [29, 32, 33, 36, 46–48].

Post-transplant Management (subdivided into Medical and Support) encompasses both self-management and external ideas and constraints of what should be managed.

Post-transplant Medical management was discussed in 13 papers; recipients spoke of their experiences of the transplant clinic and medical crises as well as the demands of the medical regimen [29, 32, 33, 35, 36, 40, 42–45, 47, 50, 51]. Medical management sometimes merged with self-management because, as is often the case in chronic illness, the patient became part of the management team. The clinic can be a source of fear and anxiety, an intrusive reminder that a trajectory of good, stable health can be interrupted by the results of testing ordered by clinicians [32, 33, 40, 43, 45, 51]. Some participants were concerned about clinics and clinicians: conflicting advice, dismissive attitudes, and inadequate follow-up [35, 40, 47, 51].

Recipients could find it hard to recognise what symptoms should be reported to clinicians, which sometimes made adherence difficult [29]. It was reported that clinicians emphasised the importance of adherence to a post-transplant regimen that included medication, diet modification, avoidance of public transportation, and physical exercise [33, 35, 44, 45, 47, 51]. Adherence to this regimen could be enhanced by interpersonal relationships, while adherence could be disrupted by unpleasant side-effects, conflicting medical advice, hard-to-follow instructions, “naivete”, time constraints, and a reluctance to relinquish favourite foods [29, 35, 40, 42, 44, 47, 51]. Emphasis on adherence could engender such a powerful sense of responsibility that recipients interpreted organ rejection as indicative of non-compliance even when they knew this not to be the case [33, 43, 51].

Recipients were found, in some cases, to have experienced post-procedural trauma, akin to post-traumatic stress disorder, in which events (such as clinic visits, medical procedures to test for rejection or infection, transplant anniversaries, constant vigilance to detect symptoms) aroused the anxiety associated with transplantation surgery, the preceding illness, or rejection [27, 32, 33, 43, 47, 51]. Recipients commonly described being fearful: that they would exhaust all treatment options when faced with graft rejection; of iatrogenic diabetes, weight gain, and hypertension; and the threat of illness and death [29, 33, 36, 40, 43–45, 47, 51]. Fear could be masked by an ostensible carelessness about the consequences of not heeding medical advice [27, 33, 43, 45].

Post-transplant Support was found to be both external and internal, including in the two studies that focused on the types and measures of support available to heart and lung transplantation candidates and recipients [35, 49]. Sources of External support were allied health professionals, transplantation nurses, workplaces, families, social groups [35, 36, 38, 42, 49, 51] and, occasionally, peers [32, 43]. Those who made use of peer support were reported as saying that it was the only source of experiential information about transplantation [43]. There were reports of inadequacies in support from healthcare organisations, workplaces, families, transportation systems, and in financial matters [35, 40–42, 45]. Complaints included frustrating failures of information transfer between healthcare organisations, inadequate information about organ transplantation, a lack of understanding about transplantation by employers and colleagues, and inadequate support from family and friends who had been expected to provide it [35, 36, 40, 49, 51].

Post-transplant peer support was commonly given rather than received [27, 33, 43, 44, 47, 51]. Recipients said (or the researchers posited) that they became peer supporters because it had been missing from their pre-transplant experience, to attempt to resolve a quest narrative, to confront death and help others to do the same, as displaced reciprocation for the “gift” of organs, to satisfy the social contract of gift-giving when direct reciprocity is impossible, and for empowerment [27, 33, 43, 44]. It was reported in one paper that, on the whole, heart recipients felt that successful recipients served as role models and that a comparison with fellow recipients could be constructive if the recipient were better off than their comparator [32]. Peer support was not always unambiguously beneficial; giving support could induce guilt in the supporters when those they were supporting became very ill or died, and these adverse outcomes could, in turn, cause anxiety in peer supporters because they emphasised the potential for complications [40, 51].

Recipients who reported on the benefits of returning to work found that external support interacted with personal capacity, yielding feelings of accomplishment, respect, and being a valued member of society [32, 33, 35, 47]. Similarly linking internal and external support, divine intervention was seen to arise from the Internal support associated with faith; God was credited with personal survival, the availability of suitable organs, and directing one’s life; faith was claimed as engendering a superior coping style [27, 45, 47, 50]. Internal support was evident in the setting and changing of goals, often reprioritising to accommodate better health (or, in some cases, to manage worsening post-transplant health) and in deference to new understanding about the recipient’s role in life; goals could also be used as a method of motivation [27, 50, 51]. Recipients could find that a positive attitude led to a perception of control and mastery of post-transplant life and that resilience was strengthened by believing in the potential to recover [32].

Investigating post-transplant Organ rejection was the primary aim of two studies [29, 43]; the topic was addressed in a further seven [27, 33, 35, 39, 40, 47, 51]. Recipients were reported to be fearful of rejection. The fear was compounded by the difficulty of identifying an episode of rejection because the symptoms were nebulous and variable, leaving some recipients feeling that the post-transplant body was not to be trusted [27, 29, 35, 40, 43, 51]. Diagnostic tests were reported to be emotionally threatening, as was taking immunosuppressant medication to prevent rejection. Some recipients speculated that one cause of rejection was the inherent inequity of the organ donation process, whereas others balanced the threat or experience of rejection against the benefits of a relatively normal life [39, 47], exemplifying the diverse meanings derived from the profound and complex phenomenon of organ donation.