The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature

Abstract

Background: Socially excluded populations have poorer access to care; however, little attention has been paid to lesbian, gay, bisexual and/or trans* people. Lesbian, gay, bisexual and/or trans* people are at increased risk of certain life-limiting illnesses and may not receive the care and support they need at the end of life and into bereavement. Aim: To identify and appraise the evidence of the bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner and develop an explanatory model of lesbian, gay, bisexual and/or trans* partner bereavement. Design: Systematic review (in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines) and thematic synthesis with assessment of reporting and rigour. Quantitative or qualitative articles reporting bereavement experiences of lesbian, gay, bisexual and/or trans* partners were included, excluding articles reporting multiple losses in the context of HIV or AIDS. Data sources: PsycINFO, MEDLINE, Web of Science, Scopus, Cochrane Library. Inclusion dates: database inception – 30 April 2015. Results: A total of 23 articles reporting on 13 studies were identified. Studies described universal experiences of the pain of losing a partner; however, additional barriers and stressors were reported for lesbian, gay, bisexual and/or trans* people, including homophobia, failure to acknowledge the relationship, additional legal and financial issues and the ‘shadow’ of HIV or AIDS. A novel model was developed to explain how the experience for lesbian, gay, bisexual and/or trans* people is shaped by whether the relationship was disclosed and acknowledged in life and into bereavement and how this impacts upon needs and access to care. Conclusion: There is a need for healthcare providers to avoid hetero-normative assumptions; be mindful of additional stressors in bereavement for lesbian, gay, bisexual and/or trans* people; and consider additional sources of support to deliver individualised holistic care.