Expectations and Experiences of Follow-Up and Self-Care After Living Kidney Donation: A Focus Group Study.

K. Manera,^1,2 C. Hanson,^1,2 J. Chapman,³ J. Kanellis,^4,5 J. Gill,⁶ J. Craig,^1,2 S. Chadban,^7,8 G. Wong,^1,2,3 A. Ralph,^1,2 A. Tong.^1,2

¹Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia
²Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
³Centre for Transplant and Renal Research, Westmead Hospital, Westmead, NSW, Australia
⁴Department of Nephrology, Monash Medical Centre, Clayton, VIC, Australia
⁵Department of Medicine, Monash University, Clayton, VIC, Australia
⁶Division of Nephrology, University of British Columbia, Vancouver, BC, Canada
⁷Charles Perkins Centre, The University of Sydney, Camperdown, NSW, Australia

Meeting: 2017 American Transplant Congress

Abstract number: D248

Keywords: Donation, Donors, Psychosocial, unrelated

Session Information

Session Name: Poster Session D: Living Donor Kidney Transplant II

Session Type: Poster Session

Date: Tuesday, May 2, 2017

Session Time: 6:00pm-7:00pm

Presentation Time: 6:00pm-7:00pm

Location: Hall D1

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 three transplant centers in Australia and Canada participated in 14 focus groups (n=123). Transcripts were analyzed thematically.

Results: We identified 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, 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.

CITATION INFORMATION: Manera K, Hanson C, Chapman J, Kanellis J, Gill J, Craig J, Chadban S, Wong G, Ralph A, Tong A. Expectations and Experiences of Follow-Up and Self-Care After Living Kidney Donation: A Focus Group Study. Am J Transplant. 2017;17 (suppl 3).

To cite this abstract in AMA style:

Manera K, Hanson C, Chapman J, Kanellis J, Gill J, Craig J, Chadban S, Wong G, Ralph A, Tong A. Expectations and Experiences of Follow-Up and Self-Care After Living Kidney Donation: A Focus Group Study. [abstract]. Am J Transplant. 2017; 17 (suppl 3). https://atcmeetingabstracts.com/abstract/expectations-and-experiences-of-follow-up-and-self-care-after-living-kidney-donation-a-focus-group-study/. Accessed May 15, 2025.

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