Twenty Years of Unspecified Kidney Donation: Unspecified Donors Looking Back on Their Donation Experiences

Abstract

The Netherlands was the first European country to implement unspecified kidney donation in 2000. This qualitative study aimed to evaluate the experiences of unspecified kidney donors (UKDs) in our transplant institute to improve the care for this valuable group of donors. We conducted semi-structured interviews with 106 UKDs who donated between 2000–2016 (response rate 84%). Interviews were audio-recorded, transcribed verbatim and independently coded by 2 researchers in NVivo using thematic analysis. The following 14 themes reflecting donor experiences were found: Satisfaction with donation; Support from social network; Interpersonal stress; Complaints about hospital care; Uncertainty about donor approval; Life on hold between approval and actual donation; Donation requires perseverance and commitment; Recovery took longer than expected; Normalization of the donation; Becoming an advocate for living kidney donation; Satisfaction with anonymity; Ongoing curiosity about outcome or recipient; Importance of anonymous communication; Anonymity is not watertight. The data reinforced that unspecified kidney donation is a positive experience for donors and that they were generally satisfied with the procedures. Most important complaints about the procedure concerned the length of the assessment procedure and the lack of acknowledgment for UKDs from both their recipients and health professionals. Suggestions are made to address the needs of UKDs.

Exploring Staff Attitudes Towards Unspecified Kidney Donors in the United Kingdom: Results From the BOUnD Study

“…This is in line with the current study, which found that some staff acknowledged that some UKDrs struggled with the requirement for anonymity, principally due to a strong psychological need for connection with the recipient. This correlates with a paper by Pronk et al which identified that some UKDrs remained troubled by and curious about the lack of contact with their recipient many years after their donation [ 42 ]. Future studies need to probe this issue both from the perspective of the recipient as well as the donor to determine if there is a mutual reciprocal benefit that challenges the current rules around anonymity.…”

Post-Donation Evaluation: Emotional Needs for Social Connection and Social Support among Living Kidney Donors—A Systematic Review

“…The selected studies originated from various countries, including the United States [ 42 , 43 , 44 , 45 , 46 , 47 ], the UK [ 3 , 48 ], Denmark [ 49 , 50 ], the Netherlands [ 51 ], Japan [ 52 ], Canada [ 53 ], Australia [ 4 ], and across Canada and Australia [ 54 , 55 ]. Thus, most of the research comes from Western countries.…”

“…Additionally, another donor reported the following: "I shared a story about my kidney donation of Facebook, to spread the word about living kidney donation". [51] For certain donors, donations appear to have facilitated the deepening of existing relationships:…”

“…How on earth it is possible that someone receives a kidney and does not even send a postcard or a soap bar or just something, a gesture, I do not understand it". [51] Another donor stated:…”

Psychological Impact of Living Kidney Donation: A Systematic Review by the EAU—YAU Kidney Transplant Working Group

“…Living donation is at a crossroads in medicine with a greater need for organs for patients waiting for transplants. Current studies therefore deal with the psychological repercussions of such a procedure on the donor and on the psychological evaluation of him or her in the living donor process [4]. At present, recommendations do not require living donors to have a psychological evaluation before donation but it is nevertheless "strongly recommended" [5].…”