Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review

William E Rosa; Kailey E Roberts; Debbie Braybrook; Richard Harding; Kendra Godwin; Cassidy Mahoney; Shiyon Mathew; Thomas M Atkinson; Smita C Banerjee; Kelly Haviland; Tonda L Hughes; Chasity B Walters; Patricia A Parker

doi:10.1177/02692163221124426

Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review

William E Rosa, Kailey E Roberts, Debbie Braybrook, Richard Harding, Kendra Godwin, Cassidy Mahoney, Shiyon Mathew, Thomas M Atkinson, Smita C Banerjee, Kelly Haviland, Tonda L Hughes, Chasity B Walters, Patricia A Parker

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

Memorial Sloan-Kettering Cancer Center (MSKCC): Clinical Genetics Service, Memorial Sloan-Kettering Cancer Center, New York, New York, United States of America (TK, MG, KO); Department of Environmental Medicine, New York University Cancer Institute, New York University, New York, New York, United States of America (TK), American Cancer Society, Atlanta, Georgia, United States of America (MG).
King's College Hospital
Pace Academy for Applied Environmental Studies, Pace University
Columbia University School of Nursing

Research output: Contribution to journal › Review article › peer-review

21 Citations (Scopus)

Abstract

BACKGROUND: Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons.

AIM: To identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness.

DESIGN: Data-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

DATA SOURCES: PubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020.

RESULTS: Of 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs (n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences (n = 12) were driven by fear and worry associated with discrimination/stigma,providers' hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences (n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy.

CONCLUSIONS: The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.

Original language	English
Pages (from-to)	2692163221124426
Journal	Palliative Medicine
DOIs	https://doi.org/10.1177/02692163221124426
Publication status	E-pub ahead of print - 7 Dec 2022

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Rosa, W. E., Roberts, K. E., Braybrook, D., Harding, R., Godwin, K., Mahoney, C., Mathew, S., Atkinson, T. M., Banerjee, S. C., Haviland, K., Hughes, T. L., Walters, C. B., & Parker, P. A. (2022). Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review. Palliative Medicine, 2692163221124426. Advance online publication. https://doi.org/10.1177/02692163221124426

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title = "Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review",

abstract = "BACKGROUND: Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons.AIM: To identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness.DESIGN: Data-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.DATA SOURCES: PubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020.RESULTS: Of 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs (n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences (n = 12) were driven by fear and worry associated with discrimination/stigma,providers' hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences (n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy.CONCLUSIONS: The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.",

author = "Rosa, {William E} and Roberts, {Kailey E} and Debbie Braybrook and Richard Harding and Kendra Godwin and Cassidy Mahoney and Shiyon Mathew and Atkinson, {Thomas M} and Banerjee, {Smita C} and Kelly Haviland and Hughes, {Tonda L} and Walters, {Chasity B} and Parker, {Patricia A}",

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Rosa, WE, Roberts, KE, Braybrook, D , Harding, R, Godwin, K, Mahoney, C, Mathew, S, Atkinson, TM, Banerjee, SC, Haviland, K, Hughes, TL, Walters, CB & Parker, PA 2022, 'Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review', Palliative Medicine, pp. 2692163221124426. https://doi.org/10.1177/02692163221124426

TY - JOUR

T1 - Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness

T2 - A systematic mixed-methods review

AU - Rosa, William E

AU - Roberts, Kailey E

AU - Braybrook, Debbie

AU - Harding, Richard

AU - Godwin, Kendra

AU - Mahoney, Cassidy

AU - Mathew, Shiyon

AU - Atkinson, Thomas M

AU - Banerjee, Smita C

AU - Haviland, Kelly

AU - Hughes, Tonda L

AU - Walters, Chasity B

AU - Parker, Patricia A

PY - 2022/12/7

Y1 - 2022/12/7

N2 - BACKGROUND: Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons.AIM: To identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness.DESIGN: Data-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.DATA SOURCES: PubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020.RESULTS: Of 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs (n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences (n = 12) were driven by fear and worry associated with discrimination/stigma,providers' hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences (n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy.CONCLUSIONS: The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.

AB - BACKGROUND: Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons.AIM: To identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness.DESIGN: Data-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.DATA SOURCES: PubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020.RESULTS: Of 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs (n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences (n = 12) were driven by fear and worry associated with discrimination/stigma,providers' hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences (n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy.CONCLUSIONS: The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.

U2 - 10.1177/02692163221124426

DO - 10.1177/02692163221124426

M3 - Review article

C2 - 36475950

SN - 0269-2163

SP - 2692163221124426

JO - Palliative Medicine

JF - Palliative Medicine

ER -

Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review

Abstract

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