Expectations and experiences of follow up and self-care after living kidney donation: a focus group study

BACKGROUND: Ensuring donor wellbeing warrants ongoing monitoring following living kidney donation. However, there is considerable variability in donor follow up processes, including information provided to donors regarding self-care. Loss to follow up is common, suggesting that the aims and benefits of monitoring and follow up may not be apparent. We aimed to describe the experiences and expectations of living kidney donors regarding follow up and self-care after donation. METHODS: Participants from 3 transplant centers in Australia and Canada participated in 14 focus groups (n=123). Transcripts were analyzed thematically. RESULTS: We identified 4 four themes: lacking identification as a patient (invincibility and confidence in health, immediate return to normality, avoid burdening specialty services, redundancy of specialist attention, unnecessary travel); empowerment for health (self-preservation for devastating consequences, self-advocacy and education, needing lifestyle advice, tracking own results); safety net and reassurance (availability of psychosocial support, confidence in kidney-focused care, continuity and rapport, and access to waitlist priority); and neglect and inattention (unrecognized ongoing debilitations, primary focus on recipient, hospital abandonment, overlooking individual priorities, disconnected from system, coping with dual roles, and lacking support for financial consequences). CONCLUSIONS: Living kidney donors who felt well and confident about their health regarded specialist follow up as largely unnecessary. However, some felt they did not receive adequate medical attention, were prematurely detached from the health system, or held unresolved anxieties about the consequences of their decision to donate. Ongoing access to healthcare, psychosocial support, and education may reassure donors that any risks to their health are minimized.