The experiences of family members of deceased organ donors and suggestions to improve the donation process: a qualitative study.
Journal
CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne
ISSN: 1488-2329
Titre abrégé: CMAJ
Pays: Canada
ID NLM: 9711805
Informations de publication
Date de publication:
08 08 2022
08 08 2022
Historique:
accepted:
14
07
2022
entrez:
8
8
2022
pubmed:
9
8
2022
medline:
11
8
2022
Statut:
ppublish
Résumé
Decisions about organ donation are stressful for family members of potential organ donors. We sought to comprehensively explore the donation process from interviews conducted with family members of patients admitted to pediatric and adult intensive care units in Canada. We conducted a qualitative study using semistructured, in-depth interviews with 271 family members asked to make an organ donation decision. We recruited participants from all provinces with an organ donation organization ( We identified 3 main themes and 9 subthemes. Families need more comprehensive support around the time of donation, including having access to someone with shared experiences, support during specific moments as needed and better support during critical transitions (e.g., when the donor body goes to the operating room). The theme of better connection to recipient(s) included receiving information about the donation surgery (e.g., which organs were recovered), establishing connection with recipients (e.g., via social networks or letters) and planned encounters. Support after donation, such as updates on organ transplantation, early mental health checks and continued connection to donor organizations, could be improved. We derived 20 suggestions for improving the organ donation process, derived from interviews with family members of pediatric and adult organ donors. We found gaps in family support during end-of-life and donation care. Feelings of abandonment, lack of support and poor-to-little follow-up provide the empirical findings needed for hospitals and organ donor organizations to provide better support to donor families.
Sections du résumé
BACKGROUND
Decisions about organ donation are stressful for family members of potential organ donors. We sought to comprehensively explore the donation process from interviews conducted with family members of patients admitted to pediatric and adult intensive care units in Canada.
METHODS
We conducted a qualitative study using semistructured, in-depth interviews with 271 family members asked to make an organ donation decision. We recruited participants from all provinces with an organ donation organization (
RESULTS
We identified 3 main themes and 9 subthemes. Families need more comprehensive support around the time of donation, including having access to someone with shared experiences, support during specific moments as needed and better support during critical transitions (e.g., when the donor body goes to the operating room). The theme of better connection to recipient(s) included receiving information about the donation surgery (e.g., which organs were recovered), establishing connection with recipients (e.g., via social networks or letters) and planned encounters. Support after donation, such as updates on organ transplantation, early mental health checks and continued connection to donor organizations, could be improved. We derived 20 suggestions for improving the organ donation process, derived from interviews with family members of pediatric and adult organ donors.
INTERPRETATION
We found gaps in family support during end-of-life and donation care. Feelings of abandonment, lack of support and poor-to-little follow-up provide the empirical findings needed for hospitals and organ donor organizations to provide better support to donor families.
Identifiants
pubmed: 35940617
pii: 194/30/E1054
doi: 10.1503/cmaj.220508
pmc: PMC9365431
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
E1054-E1061Informations de copyright
© 2022 CMA Impact Inc. or its licensors.
Déclaration de conflit d'intérêts
Competing interests: Sam Shemie has received consultant fees from Canadian Blood Services. Sean Keenan is the Medical Director of Donation Services at BC Transplant. Andreas Kramer is the medical director for the Southern Alberta Organ and Tissue Donation Program and lead, Southern Alberta Specialist in End-of-Life Care, Neuroprognostication, and Donation Program. Sonny Dhanani is the chair of the Canadian Blood Services Deceased Donation Advisory Committee and associate director of the Canadian Donation and Transplantation Research Program. He has also received a stipend from Ontario Health as a Hospital Donation Physician, Trillium Gift of Life, and holds U.S. Patent No. 10, 172, 569. Ken Lotherington is an employee of Canadian Blood Services. No other competing interests were declared.
Références
Spinal Cord. 2013 Apr;51(4):295-9
pubmed: 23184023
Nurs Stand. 2019 Mar 22;34(4):69-75
pubmed: 30479102
J Cancer Surviv. 2017 Dec;11(6):658-669
pubmed: 28470506
Transplant Proc. 2008 Apr;40(3):663-4
pubmed: 18454981
Transplant Rev (Orlando). 2014 Oct;28(4):163-8
pubmed: 24973193
Crit Care Med. 2017 Jan;45(1):103-128
pubmed: 27984278
Transplant Proc. 1999 Sep;31(6):2604-5
pubmed: 10500738
Prog Brain Res. 2005;150:369-79
pubmed: 16186036
Intensive Care Med. 2017 Apr;43(4):473-484
pubmed: 28197680
Prog Transplant. 2010 Jun;20(2):112-3
pubmed: 20642166
Soc Sci Med. 2004 Dec;59(11):2325-34
pubmed: 15450707
BMJ Open. 2020 Jun 15;10(6):e037527
pubmed: 32540892
Transplantation. 2017 May;101(5S Suppl 1):S17-S26
pubmed: 28437368
J Oncol Pract. 2018 Oct 18;:JOP1800261
pubmed: 30335558
Prog Transplant. 2018 Dec;28(4):343-348
pubmed: 30222045
Prog Transplant. 2008 Jun;18(2):118-25; quiz 126
pubmed: 18615977
Surgery. 2018 Mar;163(3):565-570
pubmed: 29195735
BMJ. 2009 Apr 21;338:b991
pubmed: 19383730
Transplant Proc. 2010 Jun;42(5):1439-44
pubmed: 20620450
Crit Care Med. 2019 Apr;47(4):526-534
pubmed: 30608283
Clin Transplant. 2008 May-Jun;22(3):341-7
pubmed: 18312444
Disabil Rehabil. 2016;38(6):558-65
pubmed: 26017541
Health Psychol Open. 2017 Dec 05;4(2):2055102917742918
pubmed: 29379629
Prog Transplant. 2003 Sep;13(3):218-24
pubmed: 14558637
Prog Transplant. 2007 Mar;17(1):63-7
pubmed: 17484248
Nephrol Nurs J. 2010 May-Jun;37(3):229-36; quiz 237
pubmed: 20629462
Am J Transplant. 2014 Apr;14(4):923-35
pubmed: 24612855