The experiences of adult heart, lung, and heart-lung transplantation recipients: A systematic review of qualitative research evidence

Abstract

Aim To review evidence about the experience of being the recipient of a donated heart, lungs, or heart and lungs. Design A systematic review (registered with PROSPERO: CRD42017067218), in accordance with PRISMA guidelines. Data sources Seven databases and Google Scholar were searched in May 2017 and July 2019 for papers reporting English-language research that had used qualitative methods to investigate experiences of adult recipients. Review methods Quality was assessed and results were analysed thematically. Results 24 papers (reporting 20 studies) were eligible and included. Their results were organised into three chronological periods: pre-transplant (encompassing the themes of ‘dynamic psychosocial impact’, ‘resources and support’), transplant (‘The Call’, ‘intensive care unit’), and post-transplant (‘dynamic psychosocial impact’, ‘management’, ‘rejection’). Sub-themes were also identified. It was evident that contemplating and accepting listing for transplantation entailed or amplified realisation of the precipitating illness’s existential threat. The period surrounding transplantation surgery was marked by profound, often surreal, experiences. Thereafter, although life usually improved, it incorporated unforeseen challenges. The transplantation clinic remained important to the recipient. The meaning of the clinic and its staff could be both reassuring (providing care and support) and threatening (representing onerous medical requirements and potential organ rejection). Conclusion This review has implications for the psychosocial care of transplant recipients and indicates the need for further research to gain insight into the experience of receiving a donated heart and/or lung. Impact Medical consequences of heart and lung transplantation are well documented; this is the first systematic review of research using qualitative methods to investigate the experience of heart, lung, and heart-and-lung transplantation. The psychosocial impact of transplantation was found to be dynamic and complex, with notable features evident before, during, and after transplantation. Clinic staff remained significant to recipients. It is clear that recipients need continuing psychosocial as well as medical support.

Expectations of patients awaiting lung transplantation: A qualitative study

“…The participants clearly stated that they hope to live longer and enjoy a higher quality of life. These findings are consistent with the results of a qualitative systematic review of the experiences of heart, lung, and heart-lung transplant recipients, which found that patients regard transplantation as a chance to lead a life with a much better state of health (Stubber & Kirkman, 2020). The testimonies recorded in that study recall those indicated by our patients, with expressions such as "second chance", "back to normality" and "resumption of life".…”

“…Patients on the waiting list also experience fear, as reported by a recent qualitative systematic review (Stubber & Kirkman, 2020) of the experiences of recipients of heart, lung, and heart-lung transplants. Those authors noted that their patients frequently reported feeling afraid both of the transplant and its implications and also of the disease itself.…”

“…In other studies, this finding has been associated with a feeling of “existential” guilt (Skogeland et al, 2018 ) arising from the ethical issues inherent to organ donation (Fedson & Siegler, 2010 ). Transplant recipients may experience a sensation of inadequacy, feeling responsible for the disease that requires the transplant or for awaiting the death of a suitable organ donor (Stubber & Kirkman, 2020 ).…”

“…In parallel, in a study exploring patients' perceptions of care and their nursing care needs while waiting for a lung and/or heart transplant (Yorke & Cameron‐Traub, 2008 ), information was identified as one of the key topics, alongside regular contact and familiarity. The clinical staff are an invaluable external source of both psychological and practical support, highlighting the value of appropriate information at all times (Stubber & Kirkman, 2020 ). Previous studies suggest that in patients awaiting transplant it is essential to pay attention to psychosocial factors throughout the care process, highlighting the key role of support, information, help and comforting (Ågren et al, 2017 ).…”

Health‐related quality of life and psychological indicators of thriving 15–19 years after heart or lung transplantation

“…Perhaps we observed uniquely elevated PTG because, unlike our other assessments of positive outcomes, it pertained directly to the transplant and captures sentiments reported in qualitative studies regarding how profoundly the transplant experience can emotionally affect recipients. 95 Our sample's high PTG may also reflect the fact that we assessed it later post-transplant compared to other studies.…”