Understanding donation experiences of unspecified (altruistic) kidney donors

Abstract

Kidney donation from a living donor to an unknown recipient has been legal in the UK since 2006. Yet there is little research into the experiences of unspecified kidney donors (UKDs) in interaction with the health care systems. This article explores the experiences of 14 UKDs recruited through four regional transplant co-ordinating centres in England. At interview, they were invited to share their donation stories and discuss the antecedents, social, and psychological processes involved. Interviews were audio-taped and transcribed. Transcripts were analysed using a grounded theory approach employing a constant comparison methodology. Themes emerging from the data were named to form categories organized around the central focus of the research, forming an analytical story of UKDs' experiences. Two major categories emerged: 'connected to others' and 'uneasy negotiations with others'. 'Connected to others' encompasses the motivations and psychological and social consequences of UKD. 'Uneasy negotiations with others' refer to the concerns and conflicts that arose during the donation process. This study highlights the importance of social relationships on the process and outcomes of UKD. These UKDs report both intra- and interpersonal benefits from donation. The donation process, however, also created interpersonal stress, and conflicting messages about the acceptability of their donation were experienced in UKDs' personal lives and in their interactions with health care services. Findings are discussed with reference to the wider literature on UKD and altruism and in relation to implications for clinical practice. What is already known on this subject? Unspecified living kidney donation is an under-researched area with only three research papers published worldwide that report on the motivations and experiences of donors. These studies indicate that donors endorse pro-social values and receive positive interpersonal and intrapersonal benefits from donation. What does this study add? UKDs' experiences are made explicit and provide a framework for future research. Social connections (capital) are an important precursor to and outcome from donation. Assumptions of pathological motivations were encountered by donors in their personal life and within the NHS.