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

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. Inclusion criteria Types of participants This review considered studies that included adult patients aged 18 years and over who had been on dialysis (hemodialysis or peritoneal dialysis) for up to 15 years and who were waiting for a renal transplant from a deceased donor. Types of intervention(s)/phenomena of interest The phenomena of interest were the experiences of adults waiting for a renal transplant from a deceased donor and more specifically, the impact of waiting on their lifestyle and day to day living. Types of studies This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Types of outcomes This review considered studies that included the experiences of people who were waiting on dialysis for a kidney 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 Search strategy The search strategy aimed to find both published and unpublished studies through electronic databases, reference list searches and the World Wide Web.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and the Virginia Henderson International Nursing Library, OpenGrey and the New York Academy of Medicine databases of unpublished literature.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 (JBI‐QARI) checklist. Disagreements between the reviewers were resolved through discussion or with a third reviewer. Data collection Qualitative data was extracted from papers included in the review using the standardized data extraction tool from JBI‐QARI. Data synthesis Qualitative research findings were pooled to generate a set of statements that represented the aggregation and categorizing of these findings on the basis of similarity in meaning. These categories were then subjected to a meta‐synthesis in order to produce a comprehensive set of synthesized findings that can be used as a basis for evidence‐based practice. 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. Implications for practice There is limited evidence from the review to support the development of recommendations for clinical practice. Healthcare workers caring for people who are waiting for a kidney transplant from a deceased donor should be mindful of the physical and lifestyle effects of living on dialysis with end stage renal disease. Wherever possible, information should be provided to alleviate the stress and anxiety related to the uncertainty of waiting. The experience of waiting is stressful and people waiting for a kidney transplant may require support and reassurance. It is important to recognize that there are people within communities who may also benefit from receiving information and encouragement. Significant community members should be included in invitations to appointments and education sessions with the consent of the person being treated. Implications for research Future studies should be undertaken exclusively with people waiting for a kidney transplant from a deceased donor. Qualitative research designs such phenomenology and grounded theory could be used to investigate the psychological experience of waiting and the relationship between hope, uncertainty and knowledge. Quantitative studies using validated tools could also be conducted. By producing more evidence relating to this significant specific patient population, interventions to improve the experience of waiting could be developed and trialed.