Abstract
To review evidence about the experience of being the recipient of a donated heart, lungs, or heart and lungs. A systematic review (registered with PROSPERO: CRD42017067218), in accordance with PRISMA guidelines. 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. Quality was assessed and results were analysed thematically. 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). 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. 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.
Highlights
Heart, lung, and heart-lung transplantation is standard clinical treatment for some intractable heart failure [1] and end-stage pulmonary diseases [2]
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 two most prominent registers are published by the International Society for Heart Lung Transplantation and the Global Observatory on Donation and Transplantation
Summary
Lung, and heart-lung transplantation is standard clinical treatment for some intractable heart failure [1] and end-stage pulmonary diseases [2]. There is no single register that records every incidence of heart, lung, or heart-lung transplantation. The two most prominent registers are published by the International Society for Heart Lung Transplantation and the Global Observatory on Donation and Transplantation. It is difficult to establish for any given year how many people worldwide are on waiting lists for a donor heart, lung, or heart and lung: Constant fluctuation is caused by people moving on and off lists because of death, transplantation, and variation in health status. A review of quantitative psychological studies found improvements in recipients’ mental health and health-related quality of life after lung transplantation [24]. A review of seven qualitative studies of recipients of donated hearts identified the importance of social support, especially in promoting a sense of agency [25]. There has not been a review of qualitative research on recipients of donated hearts and/or lungs; it is time to update the Conway et al [25] review and to extend it to recipients of donated lungs
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