Severe Mental Illness in LGBT Populations: A Scoping Review

Few studies have examined the experiences of and services for lesbian, gay, bisexual, transgender, and transsexual (LGBT) individuals with severe mental illness. In this article, “severe mental illness” refers to a mental illness diagnosis, generally associated with psychosis, that typically leads to extensive inpatient and outpatient treatment and that results in significant disability in one or more major life domains (1). This limitation in the literature persists despite the substantial number of individuals in the LGBT population with severe mental illness—an estimated 500,000 persons in the United States (2)—and increased recognition in mental health research and services of issues of diversity and the stressors experienced by minority populations.

Although not focused on severe mental illness, there is a substantial literature addressing other domains of mental health and illness in LGBT populations. For example, nonheterosexual populations have been found to experience a considerably greater prevalence of depressive episodes (adjusted odds ratio [AOR]=1.80) and suicide attempts (AOR=2.21), compared with the general population (3). The literature on transgender populations is more limited; however, suicide attempt rates among transgender and gender-nonconforming adults have been found to be markedly higher than in the general population—for example, rates of lifetime suicide attempts of 41% and 5%, respectively (4).

A number of factors might account for the lack of research on severe mental illness among LGBT individuals. In the most general sense, people with severe mental illness are often regarded as being asexual (5). Sexuality researchers have excluded individuals with severe mental illness from studies examining sexual relationships, and researchers who study the population with severe mental illness seldom study sexuality (5). Furthermore, the topics of nonheterosexual orientation and nonconforming gender identity have a long and troubled history in psychiatry, with extensive conflation of sexual and gender identities with psychiatric symptomatology (6,7). Indeed, the continued presence of gender dysphoria in DSM-5 and the common requirement that transgender individuals be diagnosed as such in order to access state or insurance support for transition care continues this tension. Further reasons for the limited research in this field likely include difficulty in delineating LGBT populations and challenges related to generating representative samples in population-based studies.

It is important to understand how severe mental illness affects LGBT populations. The markedly greater stigmatization of individuals with more severe conditions, such as schizophrenia (8), and the impacts of these types of illness have important and unique implications for treatment. A better understanding is needed of the types of services required by these groups, their mechanisms of action, and implementation strategies to support service and system development in this area. Accordingly, the objective of this scoping review was to provide a clear description of the contemporary literature pertaining to service delivery for individuals with severe mental illness in LGBT populations.

Methods

Scoping review methods are used to identify and articulate key concepts and types and sources of evidence in instances when the topic of investigation is complex or when the topic is being reviewed for the first time (9). Both criteria are relevant to this review, and, accordingly, we have followed Arksey and O’Malley’s (9) five-stage framework of identifying the research question, identifying relevant results, selecting studies, charting data, and reporting results.

The following question was examined in this scoping review: What factors and strategies need to be considered when developing services for individuals from sexual or gender minority groups who are experiencing severe mental illness?

In the second stage, an a priori search strategy was developed to identify peer-reviewed literature relevant to this question. A search was completed from inception through February 2015, restricted to publications in English and employing MEDLINE, PsycINFO, and Google Scholar to identify all publications using terms relevant to LGBT populations and severe mental illness. Key words were searched within two groups using “OR” and then combined using “AND.” In line with current working definitions of severe mental illness (1), the term groupings included serious mental illness, severe mental illness, chronic mental illness, complex mental illness, psychosis, psychotic, schizoaffective, schizophren*, and bipolar, as well as the terms lesbian, gay, bisexual, transsexual, transgender, homosexual, and LGBT*. Duplicates of articles were removed. In stage 3, abstracts were examined to identify research studies in which the abstract described all or part of the analysis (clearly delineated and separately analyzed) as examining severe mental illness as a function of diagnosis (psychosis, schizophrenia, schizoaffective disorder, or bipolar disorder), in which the abstract clearly referred to disability in major life domains and inpatient service utilization, or in which the abstract described all or part of the analysis as involving identification of participants who were LGBT. Abstracts indicating that LGBT status was being viewed within a historical frame as psychopathological were removed.

A full-text review was completed of all articles selected for the final sample. Subsequently, some papers were rejected because the above criteria were not clear in the abstract, and additional papers were identified from reference lists.

Results

MEDLINE and PsycINFO generated 1,736 results, and Google Scholar generated more than 20,000 hits. Google Scholar results were reviewed at the title and abstract level until more than 100 subsequent hits yielded no further articles. Titles and abstracts for all papers were reviewed by using the screening criteria outlined above. Of the articles identified, 102 were selected. Reference checking generated an additional five articles. The full text of each of the 107 papers was then reviewed. Excluded during full-text review were six articles that were not research studies and 74 that did not address in their design and analysis severe mental illness in LGBT populations. A total of 27 publications met all inclusion criteria (3,10–35). [A flowchart detailing the review methodology is included in an online supplement to this article.] Of these 27 studies, two were published between 1990 and 1999, ten between 2000 and 2009, and 15 between 2010 and 2014.

Overview

Among the 27 publications, there was a wide range of study foci and methods. In the area of clinical services, one examined general service satisfaction (10), one examined clinician bias (13), five were descriptions of specific services or interventions with varying types of single case study methods applied (11,23,18,19,29), two provided general clinical recommendations on the basis of case examples (12,26), and five were clinical case studies of individual clients (13,15,16,21,30). A total of seven articles descriptively examined rates of psychopathology (3,14,17,20,28,32,35), and six were qualitative studies of life experience (22,24,25,27,33,34). The studies are grouped below into those focusing on services and those focusing on descriptions of populations and their experiences.

Services Research

Of the studies examining services, three focused broadly on service experience (10,12,26). In the most methodologically rigorous of the three studies, Avery and colleagues (10) examined service satisfaction interviews conducted in inpatient and outpatient services in New York City. They compared ratings of 67 LGBT participants with data gathered several years earlier from 301 non-LGBT respondents by using the same methods. It was found that LGBT participants were more likely to be living alone, and 18% reported being dissatisfied with services, compared with 8% of the non-LGBT respondents. The remaining two studies provided general practice recommendations along with illustrative client case examples. A New York study focused on LGT individuals (bisexual persons not included) with severe mental illness (12), and a Boston study focused on LGT forensic inpatient clients (26). Recommendations included the importance of not assuming clients are heterosexual, not regarding mental illness as causal in sexual and gender identity, using acceptance and person-centered approaches, and attending to safety in clinical settings.

Of the articles examining service delivery, one focused on a group intervention (11), one focused on a general program of education in an early psychosis service (23), and three examined a multicomponent service in Brooklyn, New York (18,19,29). Among these studies there were no controlled trials or pre-post outcome evaluations. Ball (11) described the process of developing a group intervention for lesbian and gay clients in a mental health service in Brooklyn, New York. The article noted the challenge of overcoming clinical staff discomfort regarding sexual identity and commented broadly on the benefits to group members and to the service culture with respect to inclusion. Lamoureaux and Joseph (23) provided a description of the process of developing LGBT-positive services in an early psychosis program in Toronto, Ontario, although they did not describe formal case study methods or provide data. Strategies included having LGBT issues on the monthly team agenda, revising documentation to require the entry of gender and sexual identity data, and educating the team in providing informed and affirming services.

Three articles identified in the review focused on a program for LGBT individuals with severe mental illness connected to the South Beach Psychiatric Center in Brooklyn, New York. This program opened in 1996 and came to include support groups, pride events, educational and awareness activities, social events, and a clubhouse. In the initial study, Hellman and colleagues (18) reported findings from an anonymous satisfaction survey completed by approximately 200 service recipients. Among a number of findings, it was reported that 96% felt comfortable in the program and that 68% felt that their mental health had improved as a result of the program. In a later article, Hellman and colleagues (19) reported on a follow-up program evaluation with 75 participants. Among self-reported improvements in self-esteem and treatment compliance, 80% felt that their mental health had improved. Finally, Rosenberg and colleagues (29), reporting on the clubhouse component of the program as evaluated through a mail-in survey completed by 150 participants, noted that 60% attributed improvements in quality of life to the club. A correlation was noted between the amount of attendance and perceived improvement. None of these studies described the use of formal case study methods.

Of the five clinical case studies of individual clients (13,15,16,21,30), with all but one conducted in the United States (15), three described work in psychotherapy that focused on the dynamic relationship between LGBT identity and mental health challenges. Garrett (16) described identity challenges that arose for a transgender individual with psychosis. Jones (21) reported on how sexuality figured in trauma history and delusions for a lesbian-identified woman. Singer (30) described how challenges with discrimination against a gay male client lined up with challenges due to schizophrenia. Two psychiatric clinical case studies described clients for whom psychosis onset was linked to hormone replacement therapy. Dhillon and colleagues (15) (Australia) and Summers and Onate (31) addressed the possible role of estrogen in neuroprotection, with the former describing challenges linked to hormone adjustment and the latter describing psychosis onset for a transgender woman no longer able to afford hormone replacement therapy.

The final study examined in the context of services research was by Biaggio and colleagues (13), who looked at clinician bias. In this study, 422 of a randomly selected pool of 1,040 members of the Psychotherapy Division of the American Psychological Association examined case descriptions in which gender, gender role, and sexual orientation were manipulated. With respect to diagnoses of schizophrenia, lesbian and heterosexual male identities were linked with significantly higher rates of applying schizophrenia as a diagnosis compared with gay male or heterosexual female identities.

Descriptive Studies

Of the seven quantitative studies identified in the review (3,14,17,20,28,32,35), two employed representative population survey methods. A study in the United Kingdom by Chakraborty and colleagues (3) that used a representative population-based sample compared 650 nonheterosexual participants with 6,811 heterosexual participants. Nonheterosexual participants were more likely to have probable psychosis (OR=3.75). A Netherlands population survey by Gevonden and colleagues (17) that employed two waves of data collection found increased rates of psychotic experiences among LGB (not including transgender or transsexual) participants in both waves, compared with the general population. In wave 1 (1996), among 115 LGB participants (76 men and 39 women), rates of reported psychotic experiences were greater (OR=2.56); this was also the case in wave 2 (2007–2009), with 114 LGB participants (58 men and 56 women) (OR=2.30). Further, among LGB participants, it was found that experiencing discrimination in the past year mediated 34% of the effect of LGB behavior on psychotic experience.

The remaining five studies used a range of survey-based methods (14,20,28,32,35). Two studies focused specifically on transgender individuals. Nuttbrock and colleagues (35), using structured, life course interviews with 571 male-to-female transgender participants in New York City, found that gender abuse (interpersonal abuse associated with gender identity) had a dose-response relationship with major depression and suicidality in adolescence, with less of an impact in later life. Cole and colleagues (14), employing a retrospective analysis of data from 435 clients assessed at a transgender clinic in Texas, found that nine individuals had diagnoses of bipolar disorder or schizophrenia, suggesting a rate of severe mental illness similar to that in the general population. A U.S. survey of 217 men and women who identified as bisexual revealed high rates of severe psychopathology, with 7% and 9%, respectively, reporting bipolar disorder and schizophrenia diagnoses (28). Furthermore, those with severe mental illness reported being less open about their sexual identity. A New Zealand survey of 561 lesbians conducted by Welch and colleagues (32) indicated a 3% rate of psychosis or schizophrenia; and among the 51 participants who had stayed in a psychiatric hospital, 42% perceived those settings as “antilesbian.” Finally, in a New York study by Hellman and colleagues (20) in which data for 68 LGBT individuals with severe mental illness were compared with data collected earlier from a sample of general outpatients, it was found that the diagnostic profiles of the groups were not significantly different nor were rates of hospitalization. However, LGBT participants had a mean age at onset of mental illness of 19.3 years, compared with 23.5 years in the control group.

Six qualitative studies were identified—two focused specifically on sexual and gender minority populations with severe mental illness (22,24), and four examined data extracted from broader participant pools (25,27,33,34). A Canadian study by Kidd and colleagues (22), using a grounded theory approach with 11 LGT (not including bisexual) individuals, highlighted the challenge of engaging in recovery when faced with multiple, intersecting forms of stigmatization across a range of settings. This included discrimination by service providers, exclusion within LGT communities as a result of mental illness and poverty, and discrimination by fellow clients in mental health service settings. Developing relationships in which all aspects of self could be openly acknowledged without stigmatization was described as extremely helpful in the recovery process. Loue and Méndez (24), in an in-depth two-site (Ohio and California) study of the experiences of eight Puerto Rican women with severe mental illness who had sex with women (WSW) but who did not necessarily identify as lesbian, highlighted the impact of WSW status in male-dominated cultures, the overlay of histories of severe violence at the hands of men, and stigmatization in lesbian communities.

In three other studies, all conducted in the northeastern United States, information from LGBT participants with severe mental illness was obtained from a larger pool of data. Mizock and colleagues (27), who examined narratives of three individuals in a cohort of 32, described findings in line with those of Kidd and colleagues (22). Wong and colleagues (34) found among six LGBT participants that greater marginalization was connected with racialized identity, in addition to observing themes similar to those noted by Mizock and Kidd. In an earlier study, Wong and colleagues (33) found in LGB and transgender focus groups that religious experiences were problematic for some, who described pressure from religious groups to renounce LGBT identities. Finally, in a national study of the perspectives of 35 key informants in the United States, which also reviewed key documents, Lucksted (25) highlighted a range of challenges. These included minimal recognition of LGBT issues in public health forums and pervasive experiences of peer intolerance and low levels of staff knowledge about pertinent issues and resources.

Discussion

Both nationally and internationally, there is growing emphasis on addressing the specific mental health needs relevant to gender and sexual orientation (36,37). However, it is clear from this review that despite this momentum, sexual identity and gender identity are poorly addressed in the context of severe mental illness. The very modest body of work in this area suggests that compared with persons in the general population, LGBT individuals have a greater risk of developing severe mental illnesses—a risk that appears to be directly associated with exposure to discrimination. There is evidence that the services available to these individuals are often inadequate and stigmatizing—on the basis of either LGBT identity or the psychiatric diagnosis and associated challenges. This review found no evidence base for interventions for these groups aside from a small number of broadly descriptive case studies. However, a number of cross-cutting themes were noted in the modest body of data available, including the observation that providing contexts in which individuals in these groups can be safely “out” in all aspects of identity appears to be therapeutic.

The literature also suggested specific areas of risk that require attention, including social isolation and the impacts of discrimination and violence based on sexual and gender identity. Finally, the results suggested the need to attend to staff training and service processes. In the articles reviewed, the emphasis of training for mental health service providers was on general information about sexual and gender identity and stigmatizing beliefs (for example, conflating gender and sexual identity with mental illness). For staff in LGBT service sectors, findings suggested that greater knowledge about severe mental illness would be helpful. Service process issues that were highlighted included attending to and assessing safety (for example, in relation to fellow clients), addressing LGBT issues as a standing item during team meetings, and ensuring inclusive client documentation with respect to terms and domains of inquiry. All of these efforts were framed in the light of cultivating service cultures of inclusion and awareness.

Considering service development from a more systematic perspective, there are a number of relevant frameworks. These include staged models of developing culturally relevant interventions for diverse populations (38) and complementary implementation frameworks that would move from methods development to intervention trials and the study of community implementation (39). Systematic approaches in this area might be stimulated through research program calls initiated by major funders that might complement high-level policy directives and by ensuring that consumer-survivor and caregiver organizations take advantage of the rights guaranteed to them in legislation.

Conclusions

This review was limited by the amount and quality of the research available and by its focus on largely urban North American samples. Furthermore, the literature reviewed did not substantively address comorbid substance use disorders, an area that would benefit from inquiry. Despite these limitations, this review suggests that LGBT individuals with severe mental illness face challenges and have needs related to these intersecting identities that are being poorly addressed in mental health care sectors. Building from some of the promising practices identified in this review, integrated programs of rigorous research and of service and policy development would likely reduce exposure to illness-exacerbating discrimination, enhance access to effective services, and cultivate service cultures of inclusion that might benefit all service recipients.