New Zealanders’ Experiences of Organ Donation and Transplantation

1: IntroductionIn 2013, kidney transplantation accounted for 65% of all transplants in New Zealand (ODNZ, 2014). Kidney transplantation provides longer survival rates and better quality of life than dialysis for people with end stage renal failure. Suggestions for reducing the number of people on dialysis treatment have included the use of non-heart-beating donors, older donors, and living donation. Although the figures show an increase in the number of living kidney donations in New Zealand to approximately 50% of all donations, live donation raises a number of ethical issues. Many of these issues, like the matter of consent and coercion relating to donative intent, have been debated within biomedical and philosophical ethics. Unlike these debates, the present study examines these issues from a sociological perspective, to account for the experiences and viewpoints of those directly affected by living donation and transplantation procedures. The primary objective of the overall project is to contribute evidence-based research to health care and policy debates, specifically around kidney donation and transplantation in New Zealand.The project was designed to investigate two areas of kidney donation and transplantation from the perspective of kidney donors and recipients themselves, and consists of two parts. The first part of the study examines the ethics of financial compensation for living kidney donors. The second part of the study examines the impact of dialysis treatment on patients with end stage renal failure. Both studies investigate the phenomena of kidney health from a sociological perspective that incorporates bioethical insights. The aim of the overall project is to add viewpoints and perspectives of living organ donors, dialysis patients, and their families to the existing literature. The focus of the report is therefore on the experiences and moral reasoning of persons dealing with dialysis treatment and those who decide to donate a kidney to a family member or stranger.Recruitment, interviews, and data analysisThe Kidney Health study included formal and informal interviews with living kidney donors, dialysis patients and their families, transplant recipients, healthcare professionals and spokespersons for stakeholder groups, in addition to an examination of information leaflets, public relations material, institutional documents and media reports. The research recruitment process entailed placing advertisements in national magazines and relevant websites. Recruitment also relied on established contacts, and allowed for a snowball sampling technique. The interviews for the study were in-depth and semi-structured. General demographic information was incorporated into the qualitative analysis of the data. Interviews were 1 to 2.5 hours in duration, with the timing of interviews largely dependent on the availability of research participants. Where possible, interviews with living donors and dialysis patients were undertaken in participants’ homes. Each interview was recorded with the consent of the participants and then transcribed. Transcripts were sent to study participants for checking. Several study participants made minor amendments to their interview transcripts.A thematic analysis was adopted to organise and analyse the interview data. As this approach is designed to focus attention on how people make sense of their participation in a given event, the interviews consisted of topics and open-ended questions. The general research topics explored in the interviews covered familial relationships and social networks, work and leisure, personal care, issues around health and the body, attitudes towards technology and self-other relations, reasons and motivations for donation and transplantation, and practical understandings of ethics and morality in relation to kidney health issues. Data were coded manually by the principal investigator and a research assistant, according to initial themes that were designed to reflect the research goals.