Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol.


Journal

BMJ open
ISSN: 2044-6055
Titre abrégé: BMJ Open
Pays: England
ID NLM: 101552874

Informations de publication

Date de publication:
23 12 2019
Historique:
entrez: 26 12 2019
pubmed: 26 12 2019
medline: 1 12 2020
Statut: epublish

Résumé

In Canada, deceased organ donation provides over 80% of transplanted organs. At the time of death, families, friends or others assume responsibility as substitute decision-makers (SDMs) to consent to organ donation. Despite their central role in this process, little is known about what barriers, enablers and beliefs influence decision-making among SDMs. This study aims to explore the experiences and perspectives of SDMs involved in making decisions around the withdrawal of life-sustaining therapies, end-of-life care and deceased organ donation. SDMs of 60 patients admitted to intensive care units will be enrolled for this study. Ten hospitals across five provinces in Canada in a prospective multicentre qualitative cohort study. We will conduct semistructured telephone interviews in English or French with SDMs between 6 and 8 weeks after the patient's death. Our sampling frame will stratify SDMs into three groups: SDMs who were not approached for organ donation; SDMs who were approached and consented to donate and SDMs who were approached but did not consent to donate. We will use two complementary theoretical frameworks-the Common-Sense Self-Regulation Model and the Theoretical Domains Framework- to inform our interview guide. Interview data will be analysed using deductive directed content analysis and inductive thematic analysis. This study has been approved by the Centre Hospitalier de l'Université de Montréal Research Ethics Board. The findings from this study will help identify key factors affecting substitute decision-making in deceased organ donation, reasons for non-consent and barriers to achieve congruency between SDM and patient wishes. Ultimately, these data will contribute to the development and evaluation of tools and training for healthcare providers to support SDMs in making decisions about organ donation. NCT03850847.

Identifiants

pubmed: 31874899
pii: bmjopen-2019-034594
doi: 10.1136/bmjopen-2019-034594
pmc: PMC7008441
doi:

Banques de données

ClinicalTrials.gov
['NCT03850847']

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

e034594

Subventions

Organisme : CIHR
ID : PJT-155997
Pays : Canada

Informations de copyright

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Déclaration de conflit d'intérêts

Competing interests: None declared.

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Auteurs

Jacob Crawshaw (J)

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.

Justin Presseau (J)

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.

Zack van Allen (Z)

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.

Livia Pinheiro Carvalho (L)

Innovation Hub, Centre de Recherche du CHUM, Montréal, Québec, Canada.

Kim Jordison (K)

Canadian Donation and Transplant Research Program, Edmonton, Alberta, Canada.

Shane English (S)

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
Medicine (Critical Care), University of Ottawa, Ottawa, Ontario, Canada.

Dean A Fergusson (DA)

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.

Francois Lauzier (F)

Population Health and Optimal Health Practices Unit (Trauma-Emergency-Critical Care Medicine), CHU de Quebec-Universite Laval, Quebec City, Québec, Canada.
Department of Anesthesiology and Critical Care, Division of Critical Care Medicine, Université Laval, Quebec City, Québec, Canada.

Alexis F Turgeon (AF)

Population Health and Optimal Health Practices Unit (Trauma-Emergency-Critical Care Medicine), CHU de Quebec-Universite Laval, Quebec City, Québec, Canada.
Department of Anesthesiology and Critical Care, Division of Critical Care Medicine, Université Laval, Quebec City, Québec, Canada.

Aimee J Sarti (AJ)

Critical Care Medicine, Ottawa Hospital, Ottawa, Ontario, Canada.

Claudio Martin (C)

Medicine (Critical Care), Schulich School of Medicine and Dentistry, London, Ontario, Canada.

Frédérick D'Aragon (F)

Anesthesiology, Universite de Sherbrooke Faculte de medecine et des sciences de la sante, Sherbrooke, Quebec, Canada.
Centre de recherche du CHUS, Sherbrooke, Quebec, Canada.

Alvin Ho-Ting Li (AH)

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.

Greg Knoll (G)

University of Ottawa Faculty of Medicine, Ottawa, Ontario, Canada.

Ian Ball (I)

Medicine, London Health Sciences Centre, London, Ontario, Canada.

Jamie Brehaut (J)

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.

Karen E A Burns (KEA)

Critical Care, St Michael's Hospital, Toronto, Ontario, Canada.

Marie-Chantal Fortin (MC)

Medicine (Critical Care), Centre Hospitalier de L'Universite de Montreal, Montréal, Québec, Canada.
Medicine (Critical Care), Université de Montréal, Montreal, Québec, Canada.

Matthew Weiss (M)

Canadian Donation and Transplant Research Program, Edmonton, Alberta, Canada.
Trauma-Emergency-Critical Care Medicine, Université Laval Faculté de médecine, Quebec City, Quebec, Canada.

Maureen Meade (M)

Medicine (Critical Care), McMaster University, Hamilton, Ontario, Canada.

Pierre Marsolais (P)

Medicine, Hôpital du Sacré-Coeur de Montréal, Montreal, Québec, Canada.

Sam Shemie (S)

Critical Care, McGill University, Montreal, Québec, Canada.

Sanabelle Zaabat (S)

Medicine, Université de Montréal, Montréal, Québec, Canada.

Sonny Dhanani (S)

Critical Care, CHEO, Ottawa, Ontario, Canada.

Simon C Kitto (SC)

Innovation in Medical Education, University of Ottawa, Ottawa, Ontario, Canada.

Michaël Chassé (M)

Innovation Hub, Centre de Recherche du CHUM, Montréal, Québec, Canada michael.chasse@umontreal.ca.
Medicine (Critical Care), Centre Hospitalier de L'Universite de Montreal, Montréal, Québec, Canada.
Medicine (Critical Care), Université de Montréal, Montreal, Québec, Canada.

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