The experiences of adults who are on dialysis and waiting for a renal transplant from a deceased donor: a systematic review

Abstract

Background Kidney transplantation has been recognized as the best renal replacement therapy option for people with end stage renal disease. With an estimated 170,000 people waiting for a kidney transplant around the world and a limited supply of donor organs, the waiting time is often prolonged for many years. Objectives The aim of this review was to examine the existing evidence of patients' experiences of living on dialysis and waiting for a renal transplant from a deceased donor. Search strategy The search strategy aimed to find both published and unpublished studies through electronic databases, reference list searches and the World Wide Web. Extensive searches were undertaken of the CINAHL, Embase, Medline and PsychInfo databases of published literature, the Cochrane Database of Systematic Reviews and the Virginia Henderson International Nursing Library, OpenGrey and the New York Academy of Medicine databases of unpublished literature. Methodological quality Each study was assessed for methodological quality by two independent reviewers using the Joanna Briggs Institute Qualitative Assessment and Review Instrument checklist. Disagreements between the reviewers were resolved through discussion or with a third reviewer. Results A total of 12 studies were included in the final review. Thirty-seven findings from the 12 studies were extracted and aggregated into 11 categories and then into three synthesized findings. The three synthesized findings were: People who are waiting for a kidney transplant from a deceased donor are affected by the experience of living on dialysis with end stage renal disease and its impact on their physical health and normal activities of living. The experience of waiting for a kidney transplant from a deceased donor impacts a person's psychological wellbeing People who are waiting for a kidney transplant from a deceased donor place value on relationships and being part of a community. The experience of waiting for a renal transplant from a deceased donor while living on dialysis with end stage renal disease changes a person's relationships. Conclusions Synthesized findings of the review conclude that people who are waiting for a kidney transplant from a deceased donor live with the physical effects of a life limiting chronic illness and dialysis therapy. Waiting for a kidney transplant is psychologically challenging. People waiting for a kidney transplant value knowledge, although the information they require to alleviate the uncertainty they feel is not available. The dynamics of relationships with family and friends are affected by the experience of waiting for a kidney transplant. People can feel isolated from others leading a 'normal' life, while new relationships are developed within the medical team and community of dialysis patients.

Employment 12 months after kidney transplantation: An in-depth bio-psycho-social analysis of the Swiss Transplant Cohort

“…The SPH values of the group working 12 months post-Tx (mean 80.4) are similar to those of 800 town employees in Switzerland aged 45–65 years (mean 79.1) [44]. Also others showed that those employed post-Tx have a better quality of life especially in the physical domain [11, 28, 38]. Additionally, a high SPH 6 month post-Tx predicted being employed 12 months post-Tx.…”

“…Receiving a living donor organ means a lot more than better organ functioning. It means searching actively for a donor and, in case the search is successful, it means actively and concretely planning the whole procedure instead of enduring an unknown waiting time with possible negative consequences for health [38]. Thus, the association of receiving a living donor organ with post-Tx employment might not be causal but might rather reflect, firstly, a general attitude of the organ receiver and, secondly, the benefits of a reduced and foreseeable waiting time for surgery.…”

The experience of waiting for a kidney transplant: A qualitative study

“…Time on dialysis has been described as ‘… the strongest modifiable risk factor for renal transplant outcomes’ in people waiting for a kidney transplant (Meier‐Kriesche et al ). Living on dialysis while waiting for a kidney transplant has been shown to impact physical health, psychological health and normal activities of life (Burns et al ). The physical limitations of living with a chronic disease means that people are not able to invest time in the activities that previously defined their sense of self, such as independent living, employment, education and social relationships (Bennett et al ; Pierce ).…”

Immunosuppressive therapy after solid-organ transplantation: does the INTERMED identify patients at risk of poor adherence?

“…Psychosocial problems, such as anxiety and depression1, emotional distress2,3, past alcohol and substance abuse4 as well as social isolation5 are common in transplant candidates and contribute to post-transplant management complexity 6,7. These factors impact health-related quality of life (HRQOL) and biomedical outcomes 7,8,9.…”