Hidden From Sight—From the Closet to the Paywall: A Rapid Evaluation of Restricted and Monetized Access to LGBTQ+ Inclusive Palliative, End-of-Life, and Bereavement Care Research

Abstract

IntroductionLGBTQ+ people experience higher burdens of life-limiting illnesses, poorer health outcomes, and multilevel barriers to accessing palliative, end-of-life, and bereavement care. High quality evidence is needed to inform interventions to address these inequities, and inform inclusive practices and policies. Despite global initiatives to improve availability of peer-reviewed journal articles, the minority of research is open access (OA). We aimed to evaluate accessibility of literature related to LGBTQ+ inclusive palliative, end-of-life, and bereavement care. MethodsA rapid review of the evidence regarding LGBTQ+ inclusive palliative, end-of-life, and bereavement care was conducted; OA status of identified articles was assessed. Articles from three published systematic reviews were included (2012, 2016, and 2020). Review articles were updated using the original search and inclusion/exclusion strategies. Results66 articles related to LGBTQ+ inclusive palliative, end-of-life and bereavement care were identified between 1990-2022. Of these, only 21% (n=14) were OA. Of the OA articles, 79% were published between 2017 and 2022, and 50% were published between 2020-2022, reflecting more recent shifts towards OA publishing. DiscussionHealth and social care professionals and policy makers rely on access to high quality evidence to inform their work. Failing to make articles related to the needs of LGBTQ+ people and populations OA risks further marginalisation and worsened inequities. Innovative journal policies and funding are needed to enable access, particularly for research that foregrounds the needs of marginalised communities. Where articles are currently behind paywalls, there is a need for accessible summaries or policy briefs to inform inclusive policy and practice.