Table 2.

Summary of studies.

Study	Methods	Population	Study aims	Measures	Main findings	Implications
Alexander et al.45	Quant itative-quasi experimental, longitudinal	N = 197 (n = 112 intervention, n = 85 control); HIV positive y MSM attending HIV outpatient clinics in Maryland and HIV outpatient health workers); age: M = 29 years, SD = 3.9 years; 78% Black, 6% White, 9% Hispanic, 2% Other, 5% Multiracial	Assess the impact, acceptability and applicability of training staff on ePA to optimize patient outcomes in behavioral health and QoL	Life Events Scale, CES-D-SF, Global and Summary QoL	• 45% of participants had experienced 3 or more serious adverse events • Significant association between the number of life events encountered and probable depression and alcohol problems • QoL increased in patients who received ePA	ePA may be used in HIV outpatient settings to promote patient engagement and quality care
Beringer et al.38	Qualitative	N = 43 (n = 15 gay and bisexual men, n = 12 lesbian and bisexual women, n = 9 transgender persons, n = 7 service providers); patient participants had at least one chronic health condition; Canadian; age: M = 67.6 years, SD = not reported; race/ethnicity not reported	Obtain feedback on the development of a web-based platform for older LGBT individuals to receive support and information on EOL topics	Focus group interviews about the website	• In the first 16 months of the website launch 1684 “authentic users” (user visiting the site for 11–1801+ seconds) • Focus group participants reported a need for a moderated and safe web environment • Focus group feedback on website was generally positive	LGBT-friendly resources may improve EOL planning and health care
Bristowe et al.50	Qualitative	N = 40 LGBT individuals across the UK (n = 19 gay, n = 1 homosexual, n = 1 gay and intersex, n = 14 lesbian, n = 2 bisexual, n = 2 lesbian and trans, n = 1 friend of trans woman) with advanced illness (n = 21 cancer, n = 16 non-cancer, and n = 3 both a cancer and a noncancer condition); age: Med = 59, range = 27–94; n = 34 White British, n = 4 White Other, n = 1 Black British, n = 1 African-Caribbean	To explore health-care experiences of LGBT individuals with advanced illness	Semi-structured interviews	Five main themes: • Person-centered care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns) • Service level or interactional barriers/stressors (heteronormative assumptions and homophobic/transphobic behaviors) • Invisible barriers/stressors (historical context of pathology/criminalization, fears and experiences of discrimination) • Service level or interactional facilitators (acknowledging and including partners in critical discussions) • Fears of disclosure due to past discrimination	Recommendations were made for providers serving LGBT individuals: • Avoid using heterosexually framed or assumption-laden language • Demonstrate sensitivity in exploration of sexual orientation or gender history • Respect individuals’ preferences regarding disclosure of sexual identity or gender history • Carefully explore intimate relationships and significant others, including biological and chosen family (friends) • Explicitly include partners and/or significant others in discussions • Make clear statement of policies and procedures related to discrimination • Include content regarding LGBT communities in training on diversity and discrimination • Increase LGBT visibility in materials (in written content and images) • Provide explicit markers of inclusion (e.g. rainbow lanyards or pin badges) • Initiate partnerships and/or engagement with LGBT community groups
Catalan et al.39	Qualitative	N = 51 (n = 13 MSM; other sexual orientations not reported) participants had to have had personal or professional experience with HIV-age not reported; 90% Caucasian, 6% African/Afro-Caribbean, 4% South East Asian/Indian	Explored experiences with living with HIV	Semi-structured interviews	Themes included: • Death as traumatic and energizing • “Lazarus” phenomenon, meaning the impact of showing improvement as medications advanced Living with HIV amidst a death denying culture	Authors recommend palliative care be integrated into the care of those with HIV to normalize the dying process and facilitate patient-centered care
de Vries et al.41	Qualitative	N = 93; LGBT older adults from Canada with at least 1 chronic health condition (n = 39 gay cismen, n = 28 lesbian ciswomen, n = 1 bisexual cisman, n = 1 bisexual ciswoman, n = 4 gay transmen, n = 6 lesbian transwomen, n = 2 bisexual transwomen, n = 10 other; age: M = 69 years, range = 55–89 years; race/ethnicity not reported	Study examined end-of-life concerns among LGBT adults through interviews and focus groups	Interviews and focus groups	Four themes were identified: • Motivators and obstacles: documentation completion reasons and interpersonal challenges around EOL discussions (absence of a person to turn to and absence of the conversations occurring) • Relationship concerns: ambivalent ties with family of origin, chosen family strengths and challenges, isolation and loneliness, trust and honesty • Dynamics: of LGBT culture and lives fragmented LGBT community, disclosure, role and history of HIV/AIDS, financial concerns • Institutional concerns: social and health service barriers, need for political action and advocacy, role of church and religion	Findings highlight sociocultural realities and financial challenges LGBT older adults experience in their preparations for EOL, including isolation, ambivalent ties with biological kin, and social challenges with friends and chosen family
de Vries et al.44	Quantitative	N = 91 (n = 40 gay/bisexual men, n = 27 lesbian/bisexual women, n = 7 transmen, n = 17 transwomen) from Canada with at least 1 chronic health condition; age M = 67.78, SD = 6.9; race/ethnicity not reported	Study examined relationship between relationship status, adult children, chosen family and demographic characteristics on EOL document preparation and discussions	“Availability of Social Support,” ACP Documents and Arrangements Index, EOL Care Discussions Index	• 71%−85% identified friends as those they could rely on, with family the next most common • 2/3 participants had completed will, 1/2 power of attorney, 1/2 a living will, 19% had prepaid funeral plans • 43% reported having had care discussions with family, 39% with friends, 32% with partners, 17% with health care professionals, 18% with other professionals • Relationship status and number of children were significantly correlated with completing ACP documents and arrangements • Participants generally poorly prepared for EOL decisions. • LGBT participants more likely to be single, living alone and to have more health problems.	Findings demonstrate a need for attention to initiating ACP discussions with LGBT older adults and intentional connecting to EOL resources
Hunt et al.40	Qualitative	n = 72; Participants in Zimbabwe included LGBTI people and other sexually non-conforming people and health and palliative care providers and representatives of support and program agencies (n = 3 with life-limiting illness, only one identified as lesbian); age not reported; race/ethnicity not reported	To identify the attitudes and experiences of sex workers, sexual minorities, and health and palliative care providers regarding accessibility and quality of palliative care	Focus groups	• Only one LGBTQI person with a life-limiting illness included. Participant reported symptoms being untreated and experience of undignified death. • Study overall noted in population experiences of discrimination, increased risk of painful, undignified death.	Care negatively affected by discriminatory beliefs and practices
Kortes-Miller et al 42	Qualitative	N = 23; LGBT Q+ elders from Canada (demographics not broken down); participants living with cancer, HIV or multiple sclerosis (breakdowns not reported); age: M = 67.39 years,Range = 57–78 years; race/ethnicity not reported	Study examined fears and hopes of LGBTQ+ participants regarding long-term care at the end of life	Focus groups	Findings included participants having strong fears about discrimination and stigmatization: social isolation, concerns about dependence, safe and inclusive spaces	The findings from this study highlight the need for long-term care homes to be inclusive and safe for diverse residents through adding positive imagery (e.g. pride flags) and removing potentially offensive imagery (e.g. crucifixes)
Pang et al.43	Qualitative	N = 24 (n = 6 self-identified trans men [n = 4 gay, n = 2 straight] and n = 18 trans women [n = 2 bisexual, n = 8 straight] with at least one chronic condition); age: M = 70 years, Range = 55–89 years; all participants White Canadians	To understand how older adult members of trans communities perceive their late life and end-of-life care needs and what steps they are taking to address these needs	Focus groups and interviews	Three primary themes emerged: • “Dealing with the day-to-day” reflecting economic precarity and transitioning in later life • Fractures and support within family and community • “There’s a huge gap between principle and practice” reflecting mixed experiences and perceptions of healthcare services	Finding highlight the impact of daily life challenges and distinctive social support circumstances of older trans individuals
Seelman et al.46	Mixed Methods	N = 9; 8 participants had chronic illness (n = 5 cisgender men, n = 4 cisgender women, n = 1 same-gender-loving, n = 1 “likes having sex with women,” n = 1 “mostly gay,” n = 6 gay or lesbian [breakdown not specified]); age: M = 71; range = 65–77; n = 6 White/Caucasian, n = 3 African American/Black	The purpose of the study was to understand the health challenges LGB individuals face in later life and coping strategies used	Semi-structured interviews	Themes included: • Health challenges: sudden shift in wellness, dealing with comorbidities for years • Coping strategies: engaging in health-promoting activities, shifting perspectives about health and body, trusting in spiritual comfort, and accepting rather than resisting the EOL; social support essential	Study largely identified themes associated with coping with illness in older age that are not unique to LGB populations
Walker et al.47	Mixed methods	N = 384 Global, English-speaking, transgender-identified adults (n = 33 masculine, n = 130 feminine, n = 12 androgynous, n = 71 transgender, n = 28 transman, n = 51 transwoman, n = 14 two-spirit, n = 45 other; n = 114 heterosexual, n = 22 gay, n = 68 lesbian, n = 68 bisexual, n = 24 asexual, n = 17 celibate, n = 12 pansexual, n = 20 questioning, n = 16 refused to be labeled, n = 23 other); individuals with chronic illness and/or disability (total numbers not reported nor were results disaggregated); age: M = not reported, range = 51–55 years 100 (26.0%) 56–60 years 120 (31.3%) 61–65 years 91 (23.7%) 66–70 years 42 (10.9%) Over 70 years of age n = 31 (8.1%); n = 350 White, n = 2 Black, n = 4 Hispanic or Latino, n = 2 Native American or First Nations, n = 10 multiracial, n = 16 other	Study data from the “Trans MetLife Survey on Later-Life Preparedness and Perceptions in Transgender-Identified Individuals”; examined impact of anticipation of bias from healthcare professionals on successful aging	Online survey with a mix of dichotomous, Likert-scale questions and open-ended questions	• Anticipated bias, social support network size, and disability status significantly predicted participant perceptions of successful aging • 32.1% reported no or a little confidence they would be treated with dignity and respect by professional as they age • 47.1% moderate to good and 12.8% 100% confident • Larger social support networks and higher levels of confidence that a healthcare professional will treat them with dignity and respect as a TGNC person at EOL were associated with participant perceptions of successful aging	Fears of and actual discrimination may impede quality of life and healthcare for aging transgender individuals
Witten48	Mixed methods	N = 1963 Global, English-speaking, transgender-identified adults (14% masculine, 26%feminine, 3% androgenous, 5% gender queer, 1% gender bender, 14% transgender, 2% third gender, 13%transman, 11% transwoman, 2% transblended, 3% two spirit, 1% questioning; 25% heterosexual, 7% gay, 14% lesbian, 18% bisexual, 4% asexual, 3% celibate, 8% pansexual, 4% questioning, 6% refuse to be labeled, 1% omnisexual, 9% other); 30.1% with chronic illness, 27.1% with disability; age: 18–30:19% 31–40:14% 41–50: 20% 51–60: 27% 61–70:16% Over 70:4%; 85% Caucasian, 3% Hispanic, 3% multiracial, 2% Black, 2% Asian, 1% First Nations, 4% other	Study data from the “Trans MetLife Survey on Later-Life Preparedness and Perceptions in Transgender-Identified Individuals”; examined end-of-life and chronic illness experiences and preparation	Online survey with a mix of dichotomous, Likert-scale questions and open-ended questions	• Quantitative and qualitative data were grouped under religiosity, spirituality and faith; social support; chronic illness and disability; pension and retirement; legal paperwork; paying for later and EOL; later life fears; and death and dying • 30% of respondents overall reported not being sure of who would care for them in old age or in illness • Themes of free responses included experiencing discrimination by caregivers, fears of cruelty and abuse, fears of homelessness, dementia and of not being allowed to live their lives as their true selves	Importance of facilities and providers being educated and prepared to meet the need of growing population of trans-identified older adults
Witten49	Mixed methods	N = 147 bisexual, transgender-identifying adults; 31.6% with a chronic illness; 18–30:11.6%, 31–50: 40.8%, and 51 and older: 47.6%; 89.7% Caucasian, 3.4% biracial/multiracial, 1.4% Arab and Hispanic	Study data from the “Trans MetLife Survey on Later-Life Preparedness and Perceptions in Transgender-Identified Individuals” on EOL and later life concerns, plans, and preparations experiences and needs of trans bisexual adults	Online survey with a mix of dichotomous, Likert-scale questions and open-ended questions	• The number of trans-bisexual respondents who had a chronic illness and a disability was statistically greater than those who identified as trans-lesbian, supporting the argument that there are multiple complex subgroups within the global trans-identified population. • 27.9% had completed a will, 22.4% had completed a living will, 15.6% durable power of attorney 50.8% had “tried to talk about my own death with other people” • Respondents identified who they would discuss EOL care with: partner/spouse (34.7%), nobody (31.3%) and friend (17.7%)	Findings highlight the unique intersection of trans and bisexual identities in older adults and related needs around EOL planning, as well as points of resilience in this population

ACP: advance care planning; ePA: early use of a palliative approach; EOL: end of life; HIV: human immunodeficiency virus; MSM: men who have sex with men; QoL: quality of life; TGNC: transgender and gender nonconforming; yMSM: young men of color who have sex with men