Factors Impacting Conversations with Friends and Family about Living Kidney Donation

Abstract

Introduction  Living donor kidney transplantation is the optimal modality of renal replacement therapy for advanced kidney disease. It is associated with superior recipient and graft survival, a better quality of life and self-reported health status compared to dialysis. Living kidney donation occurs less frequently in members of Black, Asian and Minority Ethnic (BAME) communities in Western countries. This scoping review explores the factors affecting the ability of patients (and health professionals) to initiate conversations about living kidney donation with family and friends, with a focus on BAME population groups. Methods  208 published articles were identified from online databases using keywords: ‘barriers’, ‘decision making’, ‘living donor’, and ‘kidney transplantation. Studies limited to donors or involving paediatric recipients were excluded, Results There were 25 studies that met the inclusion criteria. Of these, 21 studies included BAME communities. Participants of South Asian ethnicity were underrepresented. Key themes were; 1) lack of knowledge 2) risk perception 3) fear of financial burden on donors 4) guilt 5) religious and cultural influences and 6) mistrust of the medical establishment. There were noticeable differences in ethnicity, in the level of knowledge, risk perception and fear of financial burden. Religious/cultural reservations and medical mistrust were only reported in people from BAME populations. Two studies explored health professionals’ views. Discussion This literature review has identified different barriers to the pursuit of living kidney donation, some of which are linked to ethnicity. This study informs the development of a patient decision aid to support people to have conversations with potential donors, with a particular focus on South Asian groups, the second largest ethnic group in the UK.