Provider and LGBT Individuals’ Perspectives on LGBT Issues in Long-Term Care: A Systematic Review

Search Strategy

We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement to conduct this systematic review (Moher et al., 2015). We conducted an electronic search of CINAHL, LGBT Life, PubMed, and PsycINFO. Our search strategy was developed in consultation with a health sciences librarian. We combined search terms in two categories: LGBT populations (“lgbt” OR “lgb” OR “glb” OR “homosexual*” OR “gay” OR “lesbian” OR “bisexual*” OR “queer” OR “sexual minorit*” OR “gender minorit*”) and LTSS (“long-term care” OR “long-term care services and supports” OR “nursing home” OR “residential care” OR “subacute facility” OR “rehabilitation facility” OR “aged home” OR “home care” OR “home health care” OR “adult day care” OR “home health” OR “assisted living”). We defined LTSS based on criteria from the National Institute on Aging (2017) and which included services provided in nursing homes, adult day care centers, assisted living facilities, residential care facilities, and the home. To identify additional studies, we also performed an ancestry and descendancy search of retrieved studies.

Inclusion and Exclusion Criteria

Peer-reviewed English-language data-based studies published through August 2018 that were conducted in the United States and that examined LTSS staff and/or LGBT individuals’ perspectives regarding LGBT issues in LTSS were eligible for inclusion. We chose to focus on LTSS as LGBT older adults in these settings interact with health care providers for extended periods of time compared with other health care settings. In addition, LGBT older adults in LTSS may be particularly vulnerable to negative interactions and discrimination from LTSS providers. We excluded intervention studies, case studies, literature reviews, and non-data-based citations. We excluded intervention studies because we were concerned specifically with provider and LGBT individuals’ perspectives. During the full-text review, we excluded any studies that included only heterosexual participants (Figure 1).

Data Abstraction

Data abstraction consisted of data reduction, data display, data comparison, conclusion drawing, and verification (Garrard, 2013). The lead author abstracted data into summary tables. Two additional authors then independently reviewed data abstraction to ensure accuracy.

Quality Appraisal

We performed a quality appraisal of each study using the Crowe Critical Appraisal Tool. The Crowe Critical Appraisal Tool is a valid and reliable tool for appraising the quality of qualitative, quantitative, and mixed methods research studies. The Crowe Critical Appraisal Tool consists of eight equally weighted categories scored on a Likert scale from 0 to 5 for a total score of 40. A score of 40 represents the highest quality (Crowe, Sheppard, & Campbell, 2011). Three authors, including the lead author, conducted the quality appraisal. Each study was appraised by at least two authors and a third author was consulted to resolve any disagreements.

Data Analysis

First, the lead author examined and created themes using the evidence abstracted from each article and presented in summary tables. The two additional authors that completed the quality appraisal (described earlier) reviewed and refined these themes. Finally, the remaining authors who were not involved in the quality appraisal process then reviewed the evidence provided in the summary tables and further refined themes.

Search Results

Our initial search retrieved 300 articles. After excluding duplicates, the titles and abstracts of 220 articles were reviewed and inclusion and exclusion criteria were applied. Reasons for excluding all studies are provided in Figure 1. A total of 21 studies remained after title and abstract screening and were deemed eligible for full-text review. An additional two studies conducted outside of the United States were excluded during full-text review (Figure 1). Three authors screened all studies. No studies were identified through ancestry and descendancy search of retrieved studies. Therefore, this systematic review included 19 articles, representing 18 distinct studies, as Butler (2017, 2018) reported on analyses from the same qualitative data set. Given that few differences in findings were noted between these two articles, for the purposes of this review, we considered these two articles as representing one study.

Study Characteristics

All studies cited in the Results section refer only to the included studies. As shown in Table 1, of the included articles, 7 focused on LTSS staff’s perspectives and 12 examined LGBT individuals’ perspectives. Of the 12 articles describing LGBT individuals’ perspectives, only 1 examined their perceptions of home health care (Butler, 2017, 2018), whereas the rest focused on perceptions of other settings in which LTSS may be provided (e.g., nursing homes). Notably, this was the only study to explore the perspectives of LGBT individuals who had actually received or were currently receiving any form of LTSS. In addition, 10 articles reported qualitative findings (representing nine distinct studies) and the remaining 9 were quantitative. All studies were cross-sectional. Quality appraisal scores ranged from 25 to 38 of 40. Thus, the existing literature, although limited, has moderate to strong quality evidence (Crowe et al., 2011; Table 1).

The majority of participants in the included studies were White (63.6%–100%). Of the seven studies that examined perceptions of LTSS staff, only two assessed the sexual orientation of the LTSS staff participants, with the majority identifying as heterosexual (Ahrendt, Sprankle, Kuka, & McPherson, 2017; Donaldson & Vacha-Haase, 2016). No studies that focused on LTSS staff assessed whether staff were transgender. Most LGBT participants were under the age of 60, with only three studies focused exclusively on older adults (Butler, 2017, 2018; Smith, McCaslin, Chang, Martinez, & McGrew, 2010; Stein, Beckerman, & Sherman, 2010). Therefore, this review predominantly focuses on what LGBT individuals perceived the experiences of older adults from this population are or will be like, which is a noted limitation discussed in further detail below.

LTSS Provider Perspectives

Seven studies focused on LTSS staff’s perspectives (Table 2). The two main themes that emerged related to LTSS staff’s perspectives were (i) lack of knowledge and training on LGBT health issues and (ii) provider attitudes toward LGBT older adults. Throughout the included studies less than one-third of LTSS staff had received any training on LGBT issues (Bell, Bern-Klug, Kramer, & Saunders, 2010; Dickey, 2012; Smith, Altman, Meeks, & Hinrichs, 2018). LTSS staff received the least amount of training on homophobia compared with other areas of cultural competence (e.g., racism, ageism, sexism, classism, and ableism; Bell et al., 2010). Those participants who had received training on LGBT issues were more likely to have college degrees, have completed their education more recently, and reported less than 3 years of work experience (Bell et al., 2010). A study of mental health providers (e.g., psychologists, social workers, and psychiatrists) in LTSS settings found that approximately one-fifth of participants reported no hours of formal coursework on LGBT issues. However, a noted limitation of this study was the large percentage of missing data for items assessing prior education on LGBT issues (59%–62%; Smith et al., 2018). Findings suggest that previous exposure to the LGBT population including receiving training on LGBT issues (Fairchild, Carrino, & Ramirez, 1996), experience caring for LGBT residents (Smith et al., 2018), or having LGBT family or friends (Dickey, 2012; Donaldson & Vacha-Haase, 2016) had a favorable impact on their acceptance and comfort caring for LGBT populations.

There was conflicting evidence regarding attitudes and comfort caring for LGBT patients. The sexual orientation of LGBT residents in nursing homes was infrequently addressed and often not accepted by LTSS staff in one study (Fairchild et al., 1996). Fairchild and colleagues (1996) asserted that these factors create environments where LGBT residents may be discouraged from expressing their sexuality and, therefore, be at risk for sexual inhibition and impaired sexual health. However, more recent evidence from Ahrendt and colleagues (2017) suggests LTSS staff have positive attitudes toward older adult sexuality in general. Hinrichs and Vacha-Haase (2010) conducted a study of staff (primarily certified nursing assistants and licensed practical nurses) working in nursing homes. They found that after reading vignettes, which depicted sexual relations among nursing home residents, participants expressed more negative attitudes toward vignettes depicting male–male and female–female sexual relations compared to male–female sexual relations (Hinrichs & Vacha-Haase, 2010). In particular, male–male relations received the most negative reactions from staff (Hinrichs & Vacha-Haase, 2010). It is important to note that staff members who had previously received training on LGBT issues viewed same-sex relations more favorably. Ahrendt and colleagues (2017) conducted a similar study at two residential care facilities. They used vignettes to examine LTSS staff’s attitudes toward same-sex relations among residents. The vignettes described a situation in which a staff member walks in on two residents engaging in sexual activity. Although no significant differences in vignette type were noted when staff from both facilities were analyzed together, exploratory analyses revealed that LTSS staff employed at Facility 1 (a Christian-affiliated facility) reported lower approval of same-sex relations. The vignette depicting sexual activity between male and female residents was also more accepted at this facility compared with those depicting same-sex relations (p = .01). Also, although LTSS staff themselves report not having negative attitudes toward LGBT residents, they perceived their coworkers did. Participants in one study felt their coworkers would have negative attitudes about LGBT residents and used words such as “anger,” “horror,” and “negative” to describe how they felt their colleagues would react to LGBT residents (Fairchild et al., 1996). Smith and colleagues (2018) identified that although 39% of mental health providers in LTSS settings had never cared for LGBT residents, they generally felt that having knowledge of LGBT issues was relevant to their clinical practice. Of the participants who had cared for LGBT residents, more than half stated that the services they provided were related to LGBT issues; however, specific examples were not provided by participants (Smith et al., 2018). Approximately one-fifth (21%) of participants identified their own discomfort caring for LGBT residents as a potential barrier to caring for this population.

Only one study explored LTSS staff’s perceptions of the meaning of LGBT cultural competence. Donaldson and Vacha-Haase (2016) conducted a qualitative study to explore LGBT cultural competency and training needs of LTSS staff at three facilities. They found significant variability across facilities. Some participants reported their facilities had instituted LGBT-inclusive practices (e.g., using inclusive language, considering sexual orientation when making room placements). In addition, participants were conflicted about the meaning of LGBT cultural sensitive care. Some felt that providing LGBT sensitive care entailed treating LGBT residents differently, whereas 41% of participants felt this meant treating them the same as other residents.

Most studies indicated that LTSS staff need additional training to provide competent care to LGBT older adults (Bell, Bern-Klug, Kramer, & Saunders, 2010; Dickey, 2012; Donaldson & Vacha-Haase, 2016; Fairchild et al., 1996; Hinrichs & Vacha-Haase, 2010; Smith et al., 2018). Smith and colleagues (2018) identified that nearly one-quarter of mental health providers working in LTSS felt unprepared to care for LGBT residents. However, the majority (90%) asserted they were somewhat or very willing to learn about LGBT issues. Also, they identified reluctance of LGBT older adults to disclose their identity (94%) and a lack of training on LGBT issues (85%) as the top barriers to providing care for LGBT residents (Smith et al., 2018). In addition, Donaldson and Vacha-Haase (2016) found that LTSS staff identified additional training as a way to increase their comfort caring for LGBT older adults. Although some participants in that study stated they did not want any additional training (Donaldson & Vacha-Haase, 2016). Hinrichs and Vacha-Haase (2010) argued that simply increasing knowledge of LGBT issues may not be sufficient to ensure culturally competent care for LGBT older adults as negative attitudes toward this population, not lack of knowledge of LGBT health, appear to have a greater impact on comfort caring for LGBT residents.

LGBT Individuals’ Perspectives

A total of 12 articles were included that focused on the perspectives of LGBT individuals (aged 15 and older; Table 3). Three main themes emerged in this area, including: (i) concern about LTSS planning, (ii) fear of discrimination from LTSS staff, and (iii) potential barriers and solutions to LGBT-inclusive LTSS. Overall, although it appears that LGBT and unmarried heterosexual women have similar patterns of LTSS planning, lesbian and bisexual women were more likely to use several advanced care planning strategies (including executing a will and naming a health care proxy) than unmarried heterosexual peers (Clark, Boehmer, Rogers, & Sullivan, 2010). Similarly, a study of older lesbian women and gay men revealed most participants were very concerned about LTSS planning with approximately 79% reporting they had completed advance directives (Hash & Netting, 2007). LGBT individuals viewed advanced care planning as a way to protect themselves and their partners in the future (Hash & Netting, 2007). Lowers (2017) found that LGBT individuals (25–70 years old), particularly those who were single, worried about having somebody to advocate for them at the end of life. A number of factors were discussed that contributed to higher rates of advance care planning and use of LTSS among LGBT older adults, including dwindling social networks, financial burden, disability, and lack of support from family members (Jihanian, 2013; Lowers, 2017).

LGBT individuals were particularly fearful of the treatment they would receive from LTSS staff. They identified not only staff but also other residents as potential sources of discrimination in LTSS facilities (Johnson, Jackson, Arnette, & Koffman, 2005; Putney, Keary, Hebert, Krinsky, & Halmo, 2018; Stein et al., 2010). Participants in several studies claimed they feared and expected discrimination and mistreatment from LTSS providers and other residents (Gabrielson, 2011; Lowers, 2017; Putney et al., 2018). LGBT participants deemed nursing homes, in particular, as restrictive and potentially hostile heteronormative environments that would isolate LGBT older adults and force them to conceal their identity (Clark et al., 2010; Hash & Netting, 2007; Lowers, 2017; Smith, McCaslin, Chang, Martinez, & McGrew, 2010). Fears regarding the quality of care were also discussed. For instance, a transgender woman in one study reported she feared that LTSS staff would not adequately address her complex medical needs (e.g., gender-affirming hormone therapy; Lowers, 2017). Although LGBT participants in one study stated they preferred to receive LTSS at homes, they acknowledged this would likely not be affordable and feared not having someone to care for them at home as they aged (Putney et al., 2018).

Findings from a qualitative data set that included 20 lesbian women, hereafter referred to as lesbians, and 6 of their informal caregivers who had received home health services was analyzed in two of the included articles (Butler, 2017, 2018). Lesbians infrequently disclosed their sexual orientation to home care workers and some assumed their sexual orientation was apparent (Butler, 2017). Approximately one-fourth of participants reported they had experienced discrimination from home care workers with a few participants reported they had issues with home care workers who refused to care for them due to religious reasons. Butler (2017) found that one lesbian stated that her home care worker left her a bible verse on her bed that said homosexuality was a sin. Nevertheless, 85% of lesbians reported they had good relationships with their home care workers with approximately one-third stating they had become friends with home care staff (Butler, 2018). Although 35% of participants claimed they preferred having a lesbian home care worker, this did not necessarily translate to improved quality of care (Butler, 2017). Caregivers of lesbians felt that home care agencies expected them to complete many care tasks. They also reported caregiving was, at times, physically and emotionally exhausting (Butler, 2018).

Furthermore, participants identified barriers to receiving LTSS and possible solutions to address these challenges. Jackson, Johnson, and Roberts (2008) found that both LGBT and heterosexual individuals believed LGBT older adults would experience more challenges in accessing LTSS. However, significant differences in perception of LTSS available to LGBT older adults were noted. For instance, when asked if they felt LGBT older adults had equal access to aging services, 40% of LGBT participants responded affirmatively compared with 61% of heterosexual participants (p < .001). LGBT participants were also significantly more likely than heterosexual participants to report they felt LGBT sensitivity training could help increase acceptance of LGBT residents in LTSS facilities (82.0% vs 69.5%, p = .02) and that LGBT-friendly retirement communities would be a positive development for the LGBT community (97.7% vs 78.8%, p < .001; Jackson et al., 2008). Several studies reported similar findings with LGBT individuals asserting that training on LGBT issues and having LGBT-friendly LTSS facilities would improve treatment of LGBT residents (Jihanian, 2013; Johnson et al., 2005; Stein et al., 2010). Others believed that having visible LGBT staff might improve care for LGBT residents (Putney et al., 2018) and some participants, particularly lesbians, claimed they preferred being cared for by LGBT staff (Butler, 2017; Gabrielson, 2011). Lesbians reported their decision to seek LGBT-friendly LTSS was influenced by prior experiences with discrimination (Gabrielson, 2011). Likewise, LGBT participants in two studies stated that having LGBT-exclusive LTSS options would mitigate potential for discrimination (Jackson et al., 2008; Stein et al., 2010). Participants in two studies indicated that the sexual orientation of LTSS staff did not matter as long as they were sensitive to the needs of LGBT older adults and possessed key characteristics (e.g., reliable, mature, and compassionate; Butler, 2018; Putney et al., 2018). Putney and colleagues (2018) found LGBT participants believed LTSS facilities should screen potential staff for those attributes during the hiring process. Further, LGBT individuals indicated that LTSS facilities should affirm they were LGBT-friendly by having inclusive language on forms and in their mission statements as well as advertising that their staff have received training in LGBT issues (Putney et al., 2018). Others believed that LTSS staff should be aware and respectful that support systems for LGBT older adults, in particular, may be exclusively comprised partners or friends, not family (Jihanian, 2013).

Limitations

As discussed earlier, the majority of participants in these studies were LGBT individuals under the age of 65 who had never received LTSS. This appears to be a significant gap in the literature as few studies have been conducted that examine perspectives of LTSS among LGBT older adults who have received or are currently receiving LTSS. Similarly, both LGBT individuals and LTSS providers were primarily White with small percentages of racial/ethnic minority individuals in the included studies. This limits the ability to examine cultural differences that may influence attitudes toward LTSS. Although these studies focused on LGBT issues, the sexual orientation and gender identity of LTSS providers were only reported in two studies. LTSS staff’s own sexual orientation and gender identity may greatly influence their attitudes and beliefs about LGBT issues. Therefore, this was an important demographic characteristic to include in analyses.

Conclusion

This systematic review synthesizes the existing literature and identifies knowledge gaps and directions for future research related to LGBT issues in LTSS. Findings suggest that LTSS health care providers often received minimal education on LGBT issues. LGBT individuals identified a concern regarding LTSS planning and fear of potential discrimination from LTSS providers and other patients. They also identified increased training in LGBT health for LTSS providers as a potential strategy to improve the care of LGBT older adults in LTSS. Future research should examine the role of LTSS providers’ attitudes on the care provided to LGBT patients and provider characteristics that promote culturally competent care for LGBT older adults. Additional research that examines the experiences of LGBT individuals that have received or are currently receiving LTSS and possible interventions (e.g., targeted education, organizational policies, and legislative initiatives) that might improve the quality of care for this vulnerable population are urgently needed as these remain significant gaps in the literature.