The Lived Experience of ‘Being Evaluated’ for Organ Donation: Focus Groups with Living Kidney Donors

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Abstract

Background and objectives

Comprehensive medical and psychosocial evaluations are required to safeguard voluntarism and minimize harm to living kidney donors. This process is lengthy, complex, and emotionally challenging, with up to one-fifth of potential donors opting out1. We aimed to describe donors’ experiences of the evaluation process.

Design, setting and participants

We conducted 14 focus groups involving 123 kidney donors from three transplant centers (Australia and Canada). Transcripts were analyzed thematically.

Results

We identified six themes reflecting donors’ experiences of evaluation. The themes that related to perseverance included emotional investment (prioritizing the recipient, desperation for normality, protecting eligibility, shame of disappointing others, overcoming opposition); undeterred by low risks (medical confidence and protection, worthwhile gamble, inherent invincibility, normalizing risks); and mental preparation (avoiding regret, resolving decisional ambivalence, managing expectations of recovery). The challenges included underlying fears for health (processing alarming information, unsettling uncertainty, pre-operative panic); system shortfalls (self-advocacy in driving the process, stressful urgency, inconsistent framing of safety, unnerving scrutiny, questioning risk information, draining finances); and lifestyle interference (living in limbo, onerous lifestyle disruption, valuing flexibility).

Conclusions

During evaluation for living donation, potential donors’ emotional investment in donating intensifies and drives their perseverance and determination to protect their eligibility, despite some having concerns for their health, financial and lifestyle disruption, and opposition from their family or community. Addressing these tensions can help prepare donors for surgery and recovery, minimize the anxiety of testing and lifestyle interference, leading to improved satisfaction with the evaluation process and better preparation for post-donation outcomes.

Conclusions

References:

Conclusions

1. Thiessen C et al. A call for research on individuals who opt out of living kidney donation: challenges and opportunities. Transplantation. 2016;100:2527-2532.

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