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 Journal Article


Authors: Rosa, W. E.; Wakefield, D.; Scott, H. M.; Braybrook, D.; Harding, R.; Bristowe, K.
Article Title: 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: Introduction: LGBTQ+ 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. Methods: A 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. Results: 66 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. Discussion: Health 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. © 2024 American Academy of Hospice and Palliative Medicine
Keywords: united states; palliative care; palliative therapy; health care quality; economics; death; systematic review; medical research; bereavement; terminal care; united kingdom; meta analysis; health care access; grief; end of life; health services accessibility; capacity building; social care; hospices; humans; human; article; health workforce; middle income country; bereavement support; lgbt; sexual and gender minorities; sgm; sexual and gender minority; lgbtq+; lgbtqia+ people; key populations
Journal Title: Journal of Pain and Symptom Management
Volume: 68
Issue: 3
ISSN: 0885-3924
Publisher: Elsevier Inc.  
Date Published: 2024-09-01
Start Page: e183
End Page: e189
Language: English
DOI: 10.1016/j.jpainsymman.2024.06.016
PUBMED: 38942095
PROVIDER: scopus
PMCID: PMC11656164
DOI/URL:
Notes: The MSK Cancer Center Support Grant (P30 CA008748) is acknowledge in the PDF -- Corresponding authors is MSK author: William E. Rosa -- Source: Scopus
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  1. William   Rosa
    199 Rosa