Patient-centred and family-centred care of critically ill patients who are potential organ donors: a qualitative study protocol of family member perspectives

Katina Zheng; Stephanie Sutherland; Pierre Cardinal; Maureen Meade; Angele Landriault; Brandi Vanderspank-Wright; Sabira Valiani; Sam Shemie; Amber Appleby; Sean Keenan; Matthew Weiss; Kim Werestiuk; Andreas H Kramer; Joann Kawchuk; Stephen Beed; Sonny Dhanani; Giuseppe Pagliarello; Michaël Chasse; Ken Lotherington; Mary Gatien; Kim Parsons; Jennifer Chandler; Peter Nickerson; Jim Kutsogiannis; Aimee J Sarti

doi:10.1136/bmjopen-2020-037527

Patient-centred and family-centred care of critically ill patients who are potential organ donors: a qualitative study protocol of family member perspectives

BMJ Open. 2020 Jun 15;10(6):e037527. doi: 10.1136/bmjopen-2020-037527.

Authors

Katina Zheng¹, Stephanie Sutherland², Pierre Cardinal², Maureen Meade³, Angele Landriault⁴, Brandi Vanderspank-Wright^{5

6}, Sabira Valiani⁷, Sam Shemie^{8

9}, Amber Appleby⁹, Sean Keenan^{10

11}, Matthew Weiss¹², Kim Werestiuk¹³, Andreas H Kramer¹⁴, Joann Kawchuk⁷, Stephen Beed¹⁵, Sonny Dhanani¹⁶, Giuseppe Pagliarello², Michaël Chasse¹⁷, Ken Lotherington⁹, Mary Gatien¹⁸, Kim Parsons¹⁹, Jennifer Chandler²⁰, Peter Nickerson²¹, Jim Kutsogiannis²², Aimee J Sarti^{23

6}

Affiliations

¹ University of Ottawa, Faculty of Medicine, Ottawa, Ontario, Canada.
² Department of Critical Care, Ottawa Hospital, Ottawa, Ontario, Canada.
³ Department of Critical Care, Hamilton Health Sciences, Hamilton, Ontario, Canada.
⁴ Practice, Performance and Innovation (PPI) Unit, Royal College of Physicians and Surgeons of Canada, Ottawa, Ontario, Canada.
⁵ School of Nursing, University of Ottawa Faculty of Health Sciences, Ottawa, Ontario, Canada.
⁶ Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
⁷ Department of Critical Care, Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada.
⁸ Pediatrics, McGill University, Montreal, Quebec, Canada.
⁹ Canadian Blood Services, Ottawa, Ontario, Canada.
¹⁰ BC Transplant, Vancouver, British Columbia, Canada.
¹¹ Division of Critical Care, UBC Department of Medicine, Vancouver, British Columbia, Canada.
¹² Population Health and Optimal Health Practices Research Unit, Trauma-Emergency-Critical Care Medicine, CHU de Quebec-Universite Laval, Quebec city, Quebec, Canada.
¹³ Transplant Manitoba, Winnipeg, Manitoba, Canada.
¹⁴ University of Calgary, Calgary, Alberta, Canada.
¹⁵ Department of Critical Care, Dalhousie University Faculty of Medicine, Halifax, Nova Scotia, Canada.
¹⁶ Critical Care, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
¹⁷ Department of Critical Care Medicine, Centre Hospitalier de L'Universite de Montreal, Montréal, Quebec, Canada.
¹⁸ Horizon Health Network, Miramichi, New Brunswick, Canada.
¹⁹ Organ Procurement and Exchange of Newfoundland and Labrador (OPEN), St. John's, Newfoundland and Labrador, Canada.
²⁰ University of Ottawa Faculty of Law Common Law Section, Ottawa, Ontario, Canada.
²¹ University of Manitoba Faculty of Health Sciences, Winnipeg, Manitoba, Canada.
²² Department of Critical Care Medicine, University of Alberta Faculty of Medicine and Dentistry, Edmonton, Alberta, Canada.
²³ Department of Critical Care, Ottawa Hospital, Ottawa, Ontario, Canada [email protected].

Abstract

Introduction: In a patient-centred and family-centred approach to organ donation, compassion is paramount. Recent guidelines have called for more research, interventions and approaches aimed at improving and supporting the families of critically ill patients. The objective of this study is to help translate patient-centred and family-centred care into practice in deceased organ donation.

Methods and analysis: This will be a national, qualitative study of family members of deceased organ donors in Canada. We will include family members who had been approached regarding an organ donation decision, including those who agreed and declined, at least 2 months and no later than 3 years after the patients' death. Data collection and analysis is ongoing and will continue until September 2020 to include approximately 250 participants. Family members will be identified and recruited from provincial organ donation organisation databases. Four experienced qualitative researchers will conduct telephone interviews in English or French with audio-recording for subsequent transcription. The research team will develop a codebook iteratively through this process using inductive methods, thus generating themes directly from the dataset.

Ethics and dissemination: Local research ethics boards (REB) at all participating sites across Canada have approved this protocol. The main REB involved is the Ottawa Health Science Network REB. Data collection began in August 2018. Publication of results is anticipated in 2021. Study findings will help improve healthcare provider competency in caring for potential organ donors and their families and improve organ donation consent rates. Findings will also help with the development of educational materials for a competency-based curriculum for critical care residents.

Keywords: brain death; cardiac death; critical care; deceased donation; family surrogate; qualitative research.

Publication types

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

MeSH terms

Canada
Critical Illness*
Decision Making*
Family / psychology*
Humans
Qualitative Research
Research Design
Tissue Donors*