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Patient-centred and family-centred care of critically ill patients who are potential organ donors: a qualitative study protocol of family member perspectives
  1. Katina Zheng1,
  2. Stephanie Sutherland2,
  3. Pierre Cardinal2,
  4. Maureen Meade3,
  5. Angele Landriault4,
  6. Brandi Vanderspank-Wright5,6,
  7. Sabira Valiani7,
  8. Sam Shemie8,9,
  9. Amber Appleby9,
  10. Sean Keenan10,11,
  11. Matthew Weiss12,
  12. Kim Werestiuk13,
  13. Andreas H Kramer14,
  14. Joann Kawchuk7,
  15. Stephen Beed15,
  16. Sonny Dhanani16,
  17. Giuseppe Pagliarello2,
  18. Michaël Chasse17,
  19. Ken Lotherington9,
  20. Mary Gatien18,
  21. Kim Parsons19,
  22. Jennifer Chandler20,
  23. Peter Nickerson21,
  24. Jim Kutsogiannis22,
  25. Aimee J Sarti2,6
  1. 1University of Ottawa, Faculty of Medicine, Ottawa, Ontario, Canada
  2. 2Department of Critical Care, Ottawa Hospital, Ottawa, Ontario, Canada
  3. 3Department of Critical Care, Hamilton Health Sciences, Hamilton, Ontario, Canada
  4. 4Practice, Performance and Innovation (PPI) Unit, Royal College of Physicians and Surgeons of Canada, Ottawa, Ontario, Canada
  5. 5School of Nursing, University of Ottawa Faculty of Health Sciences, Ottawa, Ontario, Canada
  6. 6Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
  7. 7Department of Critical Care, Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada
  8. 8Pediatrics, McGill University, Montreal, Quebec, Canada
  9. 9Canadian Blood Services, Ottawa, Ontario, Canada
  10. 10BC Transplant, Vancouver, British Columbia, Canada
  11. 11Division of Critical Care, UBC Department of Medicine, Vancouver, British Columbia, Canada
  12. 12Population Health and Optimal Health Practices Research Unit, Trauma-Emergency-Critical Care Medicine, CHU de Quebec-Universite Laval, Quebec city, Quebec, Canada
  13. 13Transplant Manitoba, Winnipeg, Manitoba, Canada
  14. 14University of Calgary, Calgary, Alberta, Canada
  15. 15Department of Critical Care, Dalhousie University Faculty of Medicine, Halifax, Nova Scotia, Canada
  16. 16Critical Care, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada
  17. 17Department of Critical Care Medicine, Centre Hospitalier de L'Universite de Montreal, Montréal, Quebec, Canada
  18. 18Horizon Health Network, Miramichi, New Brunswick, Canada
  19. 19Organ Procurement and Exchange of Newfoundland and Labrador (OPEN), St. John's, Newfoundland and Labrador, Canada
  20. 20University of Ottawa Faculty of Law Common Law Section, Ottawa, Ontario, Canada
  21. 21University of Manitoba Faculty of Health Sciences, Winnipeg, Manitoba, Canada
  22. 22Department of Critical Care Medicine, University of Alberta Faculty of Medicine and Dentistry, Edmonton, Alberta, Canada
  1. Correspondence to Dr Aimee J Sarti; asarti{at}


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.

  • critical care
  • deceased donation
  • qualitative research
  • family surrogate
  • brain death
  • cardiac death

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  • Contributors All authors have made substantial contributions to the conception of this work. AJS, SSu, PC, AA, SSh and KL conceived the research idea and study design. KZ wrote the initial draft of this manuscript. KZ, SSu, PC, MM, AL, BVW, SV, SSh, AA, SK, MW, KW, AHK, JKa, SB, SD, GP, MC, KL, MG, KP, JC, PN, JKu and AJS all edited and critically revised the research protocol and paper. All authors approved the final version of this manuscript.

  • Funding This study was supported by the Canadian Blood Services.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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