The SHARE Study - Canadian family members sharing their experiences with critical care and organ donation

Canadian family members sharing their experiences with critical care and organ donation - The SHARE Study

In Canada, little was known about why some families consent to donate their loved one’s organs and why others refuse. Providing support for the grieving family and loved ones is paramount for those about to be bereaved, regardless of whether organ donation occurs. The SHARE Study is a qualitative investigation of the experiences and perspectives of family surrogates of ICU patients who underwent organ donation decisions.

Project Updates

The experiences of family members of deceased organ donors and suggestions to improve the organ donation process: a qualitative study was published in the CMAJ on August 8, 2022.

Providing support for the grieving family and loved ones is paramount for those about to be bereaved, regardless of whether organ donation occurs. 

In this study, 271 Canadian family members, who were substitute decision makers (SDMs), from across Canada (British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Quebec, Nova Scotia, New Brunswick and Newfoundland) have been interviewed and have shared their experiences. This is the largest cohort of family members interviewed in Canada with representation from every province with an organ donation organization.

To better train, inform and equip professionals working along in the field of organ donation, this work aims to understand what’s working well, identify gaps and implement system improvements to provide solid and consistent support for donors and their families throughout the donation process. 

We know families of deceased donors need support at key moments during the donation process, such as when their family member’s body is taken to the operating room, when organs cannot be used and when decision-makers are leaving the hospital after donation takes place. Better understanding of where there may be a gaps in support will help us make system improvements to ensure the best possible experience for families.

We are grateful to the family members and the organ donation organizations who contributed to this study.     

Improving the organ donation system in Canada requires investment in programs and services to create high quality, patient and family-centered care. 

We are grateful to the study participants for sharing their experience and perspectives with our team. This insight is essential in understanding the required knowledge, skill and attitude that critical care physicians must have to best care for potential organ donors and their families.

Peer-reviewed publications

The experiences of family members of deceased organ donors and suggestions to improve the donation process: a qualitative study  Published in CMAJ, August 9, 2022. (This manuscript underwent an internal peer-review process with the Canadian Critical Care Trials Group.)
     - CMAJ Podcast: https://www.cmaj.ca/content/194/30/E1054/tab-related-content

Patient-centred and family-centred care of critically ill patients who are potential organ donors: a qualitative study protocol of family member perspectives. Zheng K, Sutherland S, Cardinal P, Meade M, Landriault A, Vanderspank-Wright B, Valiani S, Shemie S, Appleby A, Keenan S, Weiss M, Werestiuk K, Kramer AH, Kawchuk J, Beed S, Dhanani S, Pagliarello G, Chasse M, Lotherington K, Gatien M, Parsons K, Chandler J, Nickerson P, Kutsogiannis J, Sarti AJ.BMJ Open. 2020 Jun 15;10(6):e037527. doi: 10.1136/bmjopen-2020-037527.PMID: 32540892

Healthcare professionals’ understandings of the definition and determination of death: A scoping review. Transplantation Direct, 8(4). Zheng, K., Sutherland, S., Hornby, L., Wilson, L., Shemie, S. D., & Sarti, A. J. (2022).

The Project Team

Our project team is comprised of qualitative researchers with extensive research experience. Dr. Aimee Sarti is the principal investigator and an intensivist based at The Ottawa Hospital.

Contributors include 

• Study conception, design and acquisition of data: Aimee J. Sarti, Stephanie Sutherland, Sam Shemie, Sean Keenan, Matthew J. Weiss, Kim Werestiuk, Andreas H. Kramer, Joann Kawchuk, Stephen Beed, Sonny Dhanani, Ken Lotherington, Mary Gatien, Kim Parsons, Peter Nickerson and Pierre Cardinal.
• Study conception and design: Maureen Meade, Jennifer A. Chandler, Giuseppe Pagliarello and Michaël Chassé
• Data analysis. Aimee J. Sarti, Stephanie Sutherland, Angele Landriault, Brandi Vanderspank-Wright and Sabira Valiani

This study would not be possible without the participation of Organ Donation Organizations (ODOs). The SHARE study team is grateful for this incredible contribution in helping to organize this study, and most importantly for reaching out to family members inviting them to participate in an interview. Thanks to BC Transplant; Transplant Manitoba -, Gift of Life Program and Winnipeg Regional Health Authority (WRHA); New Brunswick Organ & Tissue Donation Program; Critical Care Organ Donation Program (Nova Scotia); The Organ Procurement Exchange of Newfoundland and Labrador (OPEN) and the Eastern Regional Health Authority (ERHA);  Ontario Health's Trillium Gift of Life Network (TGLN); Transplant Québec; Saskatchewan Transplant and Saskatchewan Health Authority (SHA); and the Southern Alberta Organ and Tissue Donation Program.

This study is endorsed by the Canadian Critical Care Trials Group.

This work was financially supported by Canadian Blood Services. Canadian Blood Services receives funding from the provincial and territorial Ministries of Health and the federal government, through Health Canada. The views expressed herein do not necessarily represent the views of the federal, provincial or territorial governments or of WRHA.  Canadian Blood Services is not responsible for the management or funding of any Canadian organ donation organization or transplant program.