Views of leaders in under-represented and equity-denied communities on organ and tissue donation in Nova Scotia, Canada, in light of the Human Organ and Tissue Donation Act: a qualitative descriptive study

Abstract

ObjectiveTo explore the views of underserved and equity-denied communities in Nova Scotia, Canada, regarding organ and tissue donation and deemed consent legislation.DesignA qualitative descriptive study was undertaken, employing both interviews and focus groups.SettingThe province of Nova Scotia, Canada—the first jurisdiction in North America to implement deemed consent legislation for organ and tissue donation.ParticipantsLeaders of African Nova Scotian, Lesbian, Gay, Bisexual, Trans, Queer, Two Spirit (LGBTQ2S+) and Faith-based communities (Islam and Judaism) were invited to participate (n=11). Leaders were defined as persons responsible for community organisations or in other leadership roles, and were purposively recruited by the research team.ResultsThrough thematic analysis, four main themes were identified: (1) alignment with personal values as well as religious beliefs and perspectives; (2) trust and relationships, which need to be acknowledged and addressed in the context of deemed consent legislation; (3) cultural competence, which is essential to the roll-out of the new legislation and (4) communication and information to combat misconceptions and misinformation, facilitate informed decision-making, and mitigate conflict within families.ConclusionsLeaders of African Nova Scotian, LGBTQ2S+ and Faith-based communities in Nova Scotia are highly supportive of deemed consent legislation. Despite this, many issues exemplify the need for cultural competence at all levels. These findings should inform ongoing implementation of the legislation and other jurisdictions considering a deemed consent approach to organ and tissue donation.

Development of a consortium to examine organ donation legislative and system reforms: A report from the LEADDR consortium

“…LEADDR currently has multiple articles in various stages of publication: eleven published, one accepted, three under peer review, and nine publications in progress. 10,15,[21][22][23][24][25][26][27][28][29] Included in those projects is an ongoing interrupted time series evaluating the quantitative impact of legislative change on donation and transplantation rates. Intentionally, this data has not been reported at this time, based on experiences from other jurisdictions that the full impact of such a change often does not occur until three to five years post implementation.…”