Severe Mental Illness among LGBT Populations: A Scoping Review

Abstract

Objective

There is increasing attention to diversity in psychiatric services and a widespread recognition of the mental health implications of stigma for gender and sexual minority individuals. However, these areas remain markedly underdeveloped in the area of severe mental illness. This review is intended to map out the existing base of knowledge in this area to help inform future research, practice, and policy directions.

Method

A review of the literature was conducted to answer the question, ‘What factors and strategies need to be considered when developing services for sexual and gender minority individuals experiencing severe mental illness?’ A comprehensive search of MEDLINE, PsycINFO, and Google Scholar was completed using Arksey and O'Malley's methodological framework for scoping reviews.

Results

A total of 27 publications were identified in this review. Mental health services research revealed generally lower levels of service satisfaction among lesbian, gay, bisexual, transgender and transsexual (LGBT) individuals and minimal evidence for specific interventions. Descriptive research suggested an increased risk for severe mental illness among LGBT populations, an association between risk and discrimination, and the potential benefit of cultivating spaces where individuals can be ‘out’ in all aspects of themselves.

Conclusions

There is a pressing need for research into interventions for LGBT populations with severe mental illness as well as descriptive studies to inform efforts to reduce illness morbidity linked to discrimination.

There have been few investigations into the experiences of and services for lesbian, gay, bisexual, transgender, and transsexual (LGBT) individuals with severe mental illness. In this paper, severe mental illness refers to a mental illness diagnosis (typically associated with psychosis) that typically leads to extensive inpatient and outpatient treatment and has resulted in significant disability in one or more major life domains(1). This limitation in the literature persists despite the substantial number of individuals subsumed within these categories (United States estimate of 500,000)(2) and increased recognition of issues of diversity and minority stress in mental health research and services.

While not focusing on severe mental illness, there is a substantial literature addressing other domains of mental health and illness among LGBT populations. For example, non-heterosexual populations have been found to experience a considerably greater prevalence of depressive episodes (adjusted odds ratio (OR) = 1.80) and suicide attempts (OR = 2.21) relative to general populations(3). While the literature on transgender populations is more limited, suicide attempt rates among transgender and gender non-conforming adults have been found to be markedly higher than that of the general population (e.g., 41% versus 4.6% lifetime suicide attempt)(4).

A number of factors might account for the lack of research into 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 such individuals from studies examining sexual relationships and severe mental illness researchers seldom study sexuality(5). Further, non-heterosexual orientation and non-conforming gender identities 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 the 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 with generating representative samples in population-based studies.

Generating a description of the evidence relevant to severe mental illness populations who are LGBT is important. While mental illnesses are dimensional in impact, 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. There is a need to better understand the types of services needed for these groups, their mechanisms of action, and the implementation science that would support service and system development in this area. Accordingly, the objective of this scoping review is to provide a clear description of the contemporary literature pertaining to service delivery on this topic.

Methods

Scoping review methods are used to identify and articulate key concepts, types and sources of evidence in instances when the topic of investigation is complex and (or) when the topic is being reviewed for the first time(9). Both of these criteria are relevant to this review and, accordingly, we have followed Arksey and O'Malley's 5-stage framework of identifying the research question, identifying relevant results, selecting studies, charting data, and reporting results(9).

The question examined in this scoping review is: What factors and strategies need to be considered when developing servicesfor sexual and/or gender minority individuals experiencing severe mental illness?

In the second stage an a priori search strategy was developed to identify the peer-reviewed literature that is relevant to this question. A search was completed from inception through to February, 2015, restricted to the English language employing MEDLINE, PsycINFO and Google Scholar to identify all publications employing terms relevant to LGBT populations and severe mental illness. Key words were searched within 2 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*, bipolar; and lesbian, gay, bisexual, transsexual, transgender, homosexual, LGBT*. Duplicates of articles were removed. Stage 3 examined article abstracts to identify research studies in which all or part (clearly delineated and separately analyzed) of the analysis was severe mental illness as a function of diagnosis (psychosis, schizophrenia, schizoaffective, bipolar disorder), and (or) a clear articulation of disability in major life domains and inpatient service utilization were referred to in the abstract, and, all or part of the analysis involved identification of participants who were LGBT identified as referred to in the abstract. Abstracts revealing a historical frame of LGBT status as psychopathology were removed.

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

Results

MEDLINE and PsycINFO generated 1736 results and Google Scholar generated more than 20,000 results. Google Scholar results were reviewed until over 100 subsequent hits yielded no further articles. Titles and abstracts for all papers were reviewed using the criteria outlined above to screen. Of the papers identified in the search, 102 articles were selected. Reference checking generated an additional 5 articles. Each of the full texts of these 107 papers identified were then reviewed.

A total of 27 publications met all inclusion criteria (see Online Appendix)(3,10-35). Articles were excluded in full text review because 6 were not research studies with the remaining 74 did not address LGBT-severe mental illness populations in design and analysis. Of these 27 studies, 2 were published between 1990-1999, 10 between 2000-2009, and 15 between 2010-2014.

Overview

Amongst these 27 publications there was a wide range of study foci and methods. In the area of clinical services, 1 examined general service satisfaction, 1 examined clinician bias, 5 were descriptions of specific services or interventions with varying types of single case study methods applied, 2 provided general clinical recommendations based upon case examples, and 5 were clinical case studies of individual clients. A total of 7 papers descriptively examined rates of psychopathology and 6 were qualitative studies of life experience. The remaining study examined clinician bias in clinical assessment. The description of the studies reviewed is broken down into those focusing on services and those focusing on descriptions of populations and their experiences.

Services Research

Of the papers examining services, 3 focused broadly upon service experience. In the most methodologically rigorous of these three studies, Avery et al.(10) examined service satisfaction interviews conducted in inpatient and outpatient services in New York City. A comparison was made between the ratings of 67 LGBT participants and data gathered several years earlier using the same methods with 301 respondents. It was found that LGBT participants were more likely to be living alone and17.6% reported being dissatisfied with services as compared with 8% of the non-LGBT respondents. The remaining two papers provided general practice recommendations along with illustrative client case examples. A New York study focused on LGT (bisexual persons not included) individuals with severe mental illness(12) and a Boston study 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 papers examining service delivery, 1 focused on a group intervention, 1 focused on a general program of education in an early psychosis service, and 3 examined a multi-component service in Brooklyn, New York. 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. This paper 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, though 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 papers identified in the review focused upon a program for LGBT individuals with severe mental illness connected to the South Beach Psychiatric Center in Brooklyn, NY. Hellman(18). This Program opened in 1996 and came to include support groups, pride events, educational/awareness activities, social events, and a clubhouse. In the initial study Hellman reported findings from an anonymous satisfaction survey completed by approximately 200 recipients. Among a number of findings it was reported that 95.5% felt comfortable in the program and 68.2% felt that their mental health had improved due to the program. In a later paper, Hellman(19) reported on a follow up program evaluation with 75 participants which noted among self-reported improvements in self-esteem and treatment compliance that 80.3% felt that their mental health had improved. Finally, Rosenberg(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, with all but 1 written in the United States, 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, and 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. Both Dhillon(15) (Australia) and Summers(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 transgenderwoman no longer able to afford hormone replacement therapy.

The final study examined in the context of services research is Biaggio(13) who completed a study of clinician bias. In this study, 422 of a randomly selected pool of 1040 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 ratings compared to gay male or heterosexual female identities.

Descriptive Studies

Of the 7 quantitative studies identified in the review, two employed representative population survey methods. In a UK study by Chakraborty and colleagues(3), using a representative population based sample of 650 non-heterosexual participants as compared with 6811 heterosexual participants, non-heterosexual participants indicated a probable psychosis with greater frequency (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/transsexual) participants in both waves (wave 1, 1996, 76 men and 39 women of 5927 non-heterosexual, OR = 2.56; wave 2, 58 men and 56 women of 5300 non-heterosexual, OR = 2.30). Further, it was found that among LGB participants, experiencing discrimination in the past year mediated 34% of the effect of LGB identity on psychotic experience.

The remaining 5 studies used a range of survey-based methods. Two studies focused specifically on transgender individuals. Becker(35), using structure life-course interviews with 571 male-to-female participants in New York City found that gender abuse had a dose-response relationship with major depression and suicidality in adolescence with less of an impact in later life. Cole(14), employing a retrospective analysis of 435 clients assessed at a transgender clinic in Texas, found that 9 individuals had diagnoses of bipolar disorder or schizophrenia suggesting a rate similar to that of the general population. A survey of 217 bisexually identified men and women in the United States revealed high rates of severe psychopathology with 7% and 9% reporting bipolar disorder and schizophrenia diagnoses respectively(28). Further, 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, of the 51 participants who had been in a psychiatric hospital, 42% perceived those settings as ‘anti-lesbian’. Lastly, in a New York study by Hellman and colleagues(20) in which 68 LGBT individuals with severe mental illness were compared with matched general outpatient data collected earlier it was found that the diagnostic profile was not significantly different nor were rates of hospitalization. However, LGBT participants had a mean age of onset of 19.3 years as compared with 23.5 years in the control group.

Six qualitative studies were identified. Of these, 2 focused specifically on sexual and gender minority populations with severe mental illness(22,24) and 4 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 in LGT communities due to mental illness and poverty, and discrimination by co-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(24) in an in-depth two-site (Ohio and California) study of the experiences of 8 Puerto Rican women with severe mental illness who have sex with women (WSW – not necessarily identifying 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 3 other studies, all conducted in the Northeastern United States, information from LGBT participants with severe mental illness was pulled from a larger pool of data. Mizock et al.(27) in examination of the narratives of 3 participants of a cohort of 32 described findings in line with those of Kidd(22). Along with a similar overlay in themes, Wong(34) found among 6 LGBT participants that greater marginalization as connected with racialized identity. In an earlier study Wong(33) found in LGB and transgender focus groups that religious experiences were problematic in some instances, with pressure to renounce LGBT identities. Lastly, in U.S. national study of 35 key informant perspectives accompanied by key document review, 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

From national to global levels an emphasis has been placed upon 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 and gender identity are poorly addressed in the context of severe mental illness. The very modest body of work in this area suggests a greater risk for developing severe mental illnesses among LGBT populations – 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—either on the basis of LGBT identity, or on the basis of 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, there were a number of cross cutting themes in the modest body of data available. This included the observation that providing contexts in which individuals in these groups can be safely ‘out’ in all aspects of identity would seem therapeutic. This literature also suggested specific areas of risk that require attention, including social isolation and the impacts of sexual and gender identity-based discrimination and violence. Finally, these findings suggested the need to attend to staff trainings and service processes. For mental health service providers the training emphasis was upon general information about sexual and gender identity and stigmatizing beliefs (e.g., conflating gender and sexual identity with mental illness). For LGBT service sectors it was suggested that greater knowledge about severe mental illness would be helpful. Service process issues that were highlighted included attending to and assessing safety (e.g., from co-clients), having LGBT issues as a standing item on team meetings, and ensuring inclusive 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, along with consumer/survivor and caregiver organizations taking advantage of the rights legislations to which they have access.

Conclusions

This review was limited by the amount, quality, and largely urban North American concentration of the research available. Furthermore, the literature reviewed did not substantively address comorbid addictions, 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, 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.