THE LIVED EXPERIENCE OF ‘BEING EVALUATED’ FOR ORGAN DONATION: FOCUS GROUPS WITH LIVING KIDNEY DONORS

CS HANSON1,2, AF RALPH1,2, KE MANERA1,2, JS GILL3, J KANELLIS4, G WONG1,2,5, JC CRAIG1,2,  JR CHAPMAN5, A TONG1,2

1Sydney School of Public Health, The University of Sydney, Sydney, NSW; 2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, NSW; 3Division of Nephrology, University of British Columbia, Vancouver, BC, Canada; 4Department of Nephrology, Monash Health and Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, VIC; 5Centre for Transplant and Renal Research, The Westmead Institute for Medical Research, Westmead, NSW, Australia

Aim: We aimed to describe donors’ experiences of the evaluation process.

Background: Comprehensive medical and psychosocial evaluations are required to safeguard voluntarism and minimise harm to living kidney donors. This process is lengthy, complex, and emotionally challenging, with up to one-fifth of potential donors opting out.

Methods: 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 (prioritising 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, normalising 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, minimise the anxiety of testing and lifestyle interference, leading to improved satisfaction with the evaluation process and better preparation for post-donation outcomes.

About ANZSN

The ASM is hosted by Australian and New Zealand Society of Nephrology.

The aims of the Society are to promote and support the study of the kidney and urinary tract in health and disease, and to ensure the highest professional standards for the practice of nephrology in Australia and New Zealand.

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