Experiences of completed and withdrawn unspecified kidney donor candidates in the UK : an inductive thematic analysis from the BOUnD study

Objectives: This study sheds light on some controversial aspects of unspecified kidney donation (UKD) as well as the ways in which potential donors are screened and prepared for the donation experience and its aftermath. The aim of this study was to qualitatively investigate the experiences of individuals involved in the United Kingdom (UK) UKD scheme, including those who complete the donation, are eventually medically withdrawn, or self-withdraw. Better insight into the different experiences of these groups will provide useful guidance to clinical teams on how to better address the differing psychological needs of completed donors as well as those who do not proceed to donation. Methods: A purposive sample was recruited through the Barriers and Outcomes in Unspecified Donation (BOUnD) study covering twenty-three transplant centres in the UK. Semi-structured interviews were audio-recorded and transcribed verbatim and subjected to inductive thematic analysis. Results: Participants consisted of 15 individuals who had donated, 11 who had been withdrawn by the transplant team and 9 who had self-withdrawn. The analysis resulted in 6 themes and 14 subthemes. The major themes were maximising and sharing benefits; risk-to-motivation analysis; support; self-actualisation / finding meaning; the donor as patient; and relationship with the transplant team. Conclusions: The data demonstrates that, although all donors enter the process with a similar level of commitment, those who did not proceed to donation expressed dissatisfaction and lingering emotional consequences linked to lack of follow-up from transplant teams. The implication for the UKD programme is that from the beginning there needs to be a strategic and consistent approach to managing expectations in order to prepare those who embark on the donation process for all possible outcomes and their associated emotional consequences