Allison Tong1, Angelique Ralph, Jeremy R Chapman, John S Gill, Michelle A Josephson, Camilla S Hanson, Germaine Wong, Jonathan C Craig. 1. 1 Sydney School of Public Health, The University of Sydney, Sydney, Australia. 2 Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia. 3 Centre for Transplant and Renal Research, Westmead Hospital, Westmead, Australia. 4 Division of Nephrology, University of British Columbia, Vancouver, Canada. 5 Department of Medicine, The University of Chicago, Chicago, IL. 6 Address correspondence to: Allison Tong, Ph.D., Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW 2145, Sydney, Australia.
Abstract
BACKGROUND: With the rising prevalence of end-stage kidney disease worldwide, the proportion of the general community who might subsequently be called upon to consider living related kidney donation is also increasing. Knowledge about the attitudes and beliefs among the general public about living kidney donation is limited. We aimed to describe public perspectives on living kidney donation. METHODS: Participants were recruited from three states in Australia to participate in 12 focus groups (n=113). Transcripts were analyzed thematically. RESULTS: We identified six themes: expected benefits (saving and improving life, societal gain, donor satisfaction, reassurance and control), consciousness of donor risks (compromised health, lifestyle limitations, financial consequences, relationship tensions, devastation), social precariousness (fear of the unknown, exploitative connotation, recipient deservingness, protecting conscience, potential regret), upholding fairness (equal access to transplantation, reciprocity, prevent prejudice, donor safety net), decisional autonomy (body ownership, right to know, valid relationships), and assumed duty of care (facilitate informed decision-making, safeguard against coercion, ensure psychological safety, justifiable risk, objectivity, warranted disclosure). CONCLUSION: The expected benefits for recipients bolster public support for living kidney donor transplantation; however, ethical dilemmas and concerns for the donor instilled ambivalence about living donation. Protecting equity and autonomy, and an implicit trust in health professionals to protect donors and recipients mitigated some of these uncertainties. Developing interventions, practices, and policies that address community skepticism and values may promote awareness and trust in living kidney donation.
BACKGROUND: With the rising prevalence of end-stage kidney disease worldwide, the proportion of the general community who might subsequently be called upon to consider living related kidney donation is also increasing. Knowledge about the attitudes and beliefs among the general public about living kidney donation is limited. We aimed to describe public perspectives on living kidney donation. METHODS:Participants were recruited from three states in Australia to participate in 12 focus groups (n=113). Transcripts were analyzed thematically. RESULTS: We identified six themes: expected benefits (saving and improving life, societal gain, donor satisfaction, reassurance and control), consciousness of donor risks (compromised health, lifestyle limitations, financial consequences, relationship tensions, devastation), social precariousness (fear of the unknown, exploitative connotation, recipient deservingness, protecting conscience, potential regret), upholding fairness (equal access to transplantation, reciprocity, prevent prejudice, donor safety net), decisional autonomy (body ownership, right to know, valid relationships), and assumed duty of care (facilitate informed decision-making, safeguard against coercion, ensure psychological safety, justifiable risk, objectivity, warranted disclosure). CONCLUSION: The expected benefits for recipients bolster public support for living kidney donor transplantation; however, ethical dilemmas and concerns for the donor instilled ambivalence about living donation. Protecting equity and autonomy, and an implicit trust in health professionals to protect donors and recipients mitigated some of these uncertainties. Developing interventions, practices, and policies that address community skepticism and values may promote awareness and trust in living kidney donation.
Authors: Allison Tong; Angelique F Ralph; Jeremy R Chapman; Germaine Wong; John S Gill; Michelle A Josephson; Jonathan C Craig Journal: Clin J Am Soc Nephrol Date: 2015-04-23 Impact factor: 8.237
Authors: Krista L Lentine; Bertram L Kasiske; Andrew S Levey; Patricia L Adams; Josefina Alberú; Mohamed A Bakr; Lorenzo Gallon; Catherine A Garvey; Sandeep Guleria; Philip Kam-Tao Li; Dorry L Segev; Sandra J Taler; Kazunari Tanabe; Linda Wright; Martin G Zeier; Michael Cheung; Amit X Garg Journal: Transplantation Date: 2017-08 Impact factor: 4.939
Authors: Jessica M Ruck; Sarah E Van Pilsum Rasmussen; Macey L Henderson; Allan B Massie; Dorry L Segev Journal: BMC Nephrol Date: 2018-06-08 Impact factor: 2.388