1 Urquhart R, et al. BMJ Open 2023;13:e068726. doi:10.1136/bmjopen-2022-068726 Open access 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 Robin Urquhart , 1 Cynthia Kendell, 2 Matthew Weiss , 3 Nelofar Kureshi, 4 Jade Dirk, 5 Wendy Cordoba, 6 Stephen Beed 7 To cite: Urquhart R, Kendell C, Weiss M, et al. 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. BMJ Open 2023;13:e068726. doi:10.1136/ bmjopen-2022-068726 ► Prepublication history for this paper is available online. To view these fles, please visit the journal online (http://dx.doi. org/10.1136/bmjopen-2022- 068726). Received 02 November 2022 Accepted 04 April 2023 For numbered affliations see end of article. Correspondence to Dr Robin Urquhart; robin.urquhart@nshealth.ca Original research © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. ABSTRACT Objective To explore the views of underserved and equity-denied communities in Nova Scotia, Canada, regarding organ and tissue donation and deemed consent legislation. Design A qualitative descriptive study was undertaken, employing both interviews and focus groups. Setting The province of Nova Scotia, Canada—the frst jurisdiction in North America to implement deemed consent legislation for organ and tissue donation. Participants Leaders 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 defned as persons responsible for community organisations or in other leadership roles, and were purposively recruited by the research team. Results Through thematic analysis, four main themes were identifed: (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 confict within families. Conclusions Leaders 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 fndings should inform ongoing implementation of the legislation and other jurisdictions considering a deemed consent approach to organ and tissue donation. INTRODUCTION Until recently, consent to donate organs and tissues in all Canadian provinces and terri- tories operated under an ‘opt-in’ or explicit consent model, meaning an individual must express their intention to become an organ or tissue donor. This changed on 18 January 2021, when Nova Scotia, Canada, became the first jurisdiction in North America to enact a deemed consent or ‘opt-out’ approach to donation, where every adult Nova Scotian is considered to have consented for deceased organ donation unless they explicitly regis- tered to the contrary. The change was prompted by the fact that Nova Scotia’s organ donation rate had remained stagnant while rates increased in other provinces that invested resources into supporting their organ donation programmes. 1 As a result, the provincial Human Organ and Tissue Dona- tion Act (HOTDA) was modified to incorpo- rate a deemed consent model (also referred to as a ‘presumed’ consent model in other jurisdictions), in an effort to increase organ and tissue donation. 2 3 Many international jurisdictions have adopted deemed consent approaches STRENGTHS AND LIMITATIONS OF THIS STUDY ⇒ This study investigated the views of several under- represented and equity-denied communities (African Nova Scotian, Lesbian, Gay, Bisexual, Trans, Queer, Two Spirit and Faith-based communities) who may be disproportionately impacted by the enactment of deemed consent legislation in Nova Scotia. ⇒ The views and experiences of additional under- represented communities were not captured, but represent an important area of future engagement and inquiry. ⇒ The small number of participants may limit general- isability of the fndings. on July 4, 2023 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2022-068726 on 18 April 2023. Downloaded from