Barriers to Familial Consent in Deceased Organ Donation among Racialized and Indigenous Communities in Canada: A Qualitative Study

Barriers to Familial Consent in Deceased Organ Donation among Racialized and Indigenous Communities in Canada: A Qualitative Study
Simran Sandhu, Jagbir Gill, Reetinder Kaur
Journal of the American Society of Nephrology, October 2024
Poster
Metrics
Background
In Canada, over 3700 people are on the organ transplant list, with deceased donor kidney transplants making the majority of transplants completed annually. Despite the increasing numbers of transplants, populations marginalized by race and ethnicity have lower rates of organ donation registration and are less likely to consent to donation. Gaining insight into barriers to providing consent is critical in developing strategies to address disparities. This study aimed to identify barriers to familial consent among members of racialized and Indigenous communities.
Methods
48 participants were recruited through community-based organizations in British Columbia (BC) and included BC residents, aged over 19, who spoke English. 31 participants completed interviews and 17 completed focus groups. Participants were oversampled for members of racialized and Indigenous communities. A case vignette was used to collect data with data analyzed using summative content analysis.
Results
Four overarching barriers were identified: 1) system-level; 2) community-based; 3) related to decision-making; and 4) informational. System-level barriers highlighted mistrust of Canadian healthcare institutions, perceived coercion, and the role of language in consent. Community-based barriers involved ideas around the deceased body, funeral, afterlife, and general perceptions of organ donation. Decision-making was affected by family dynamics and donor and recipient identity. Informational barriers such as age eligibility also influenced consent. Facilitators to address barriers include culturally diverse resources, increasing community knowledge, and providing language, cultural, and religious support to build trust and facilitate discussions.
Conclusion
This study highlights barriers and modifiable determinants to familial consent in deceased organ donation among members of racialized and Indigenous communities. Although it examines barriers to familial consent for all organ donation, findings are of significant relevance to kidney care, as patients waiting for kidney transplants constitute the majority of patients on transplant waitlists. Education and engagement initiatives must be targeted at the health system and community levels to fully address barriers to consent and reduce racial and ethnic disparities in organ transplantation.