Karine E Manera1, Camilla S Hanson, Jeremy R Chapman, John Kanellis, John Gill, Jonathan C Craig, Steve J Chadban, Germaine Wong, Angelique F Ralph, Allison Tong. 1. 1 Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia. 2 Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. 3 Centre for Transplant and Renal Research, Westmead Hospital, Westmead, NSW, Australia. 4 Department of Nephrology, Monash Medical Centre, Clayton, VIC, Australia. 5 Department of Medicine, Monash University, Clayton, VIC, Australia. 6 Division of Nephrology, University of British Columbia, Vancouver, BC, Canada. 7 Kidney Node, Charles Perkins Centre, The University of Sydney, Camperdown, NSW, Australia. 8 Renal Medicine, Royal Prince Alfred Hospital, Camperdown, NSW, Australia.
Abstract
BACKGROUND: Ensuring donor wellbeing warrants ongoing monitoring after 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 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.
BACKGROUND: Ensuring donor wellbeing warrants ongoing monitoring after 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 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.
Authors: Babak J Orandi; Rhiannon D Reed; Haiyan Qu; Grace Owens; Sydney Brooks; A Cozette Killian; Vineeta Kumar; Saulat S Sheikh; Robert M Cannon; Douglas J Anderson; Cora E Lewis; Jayme E Locke Journal: Clin Transplant Date: 2022-02-27 Impact factor: 3.456
Authors: Courtenay M Holscher; Sunjae Bae; Alvin G Thomas; Macey L Henderson; Christine E Haugen; Sandra R DiBrito; Abimereki D Muzaale; Jacqueline M Garonzik Wang; Allan B Massie; Krista L Lentine; Dorry L Segev Journal: Transplantation Date: 2019-06 Impact factor: 4.939
Authors: Ngan N Lam; Christine Dipchand; Marie-Chantal Fortin; Bethany J Foster; Anand Ghanekar; Isabelle Houde; Bryce Kiberd; Scott Klarenbach; Greg A Knoll; David Landsberg; Patrick P Luke; Rahul Mainra; Sunita K Singh; Leroy Storsley; Jagbir Gill Journal: Can J Kidney Health Dis Date: 2020-06-09
Authors: Shaifali Sandal; Kathleen Charlebois; Julio F Fiore; David Kenneth Wright; Marie-Chantal Fortin; Liane S Feldman; Ahsan Alam; Catherine Weber Journal: Can J Kidney Health Dis Date: 2019-02-13