Perspectives of Individuals With Serious Mental Illness on a Reverse–Colocated Care Model: A Qualitative Study

The mortality rate of individuals with serious mental illness is two- to threefold higher than the rate in the general population (1–3). A large proportion of excess mortality is attributable to general medical comorbidities (4–6). Factors hypothesized to contribute to these comorbidities include lifestyle, psychiatric symptoms, and antipsychotic side effects (7, 8). Using insurance claims data, studies have shown that individuals with serious mental illness experience disproportionate difficulties with access to medical care, including lower rates of utilization of outpatient medical services (9) and preventive medical services (10). In addition, self-report data indicate that this population encounters more barriers to primary care and a lack of access to a regular source of primary care, compared with the general population (11).

The system-level separation between primary care and mental health services contributes to fragmentation issues for individuals with serious mental illness, suggesting the importance of increased connection between primary care and mental health services (12). Several reverse-integrated models (in which primary care services are integrated within behavioral health settings) have yielded higher rates of use of preventive services (13), improved Framingham risk scores (14), increased self-reported patient activation and use of primary care (15), and lower rates of inpatient admission (16). Integrated models vary considerably in terms of services and level of integration. One proposed framework suggests six levels of integration, from minimally collaborative to colocated and fully integrated models (17). Previously evaluated reverse-integrated models fall on both ends of this spectrum (13–17).

A RAND evaluation of the Primary and Behavioral Health Care Integration Grant Program, which supports the integration of primary care services into community behavioral health settings through the Substance Abuse and Mental Health Services Administration, found that nearly all grantees identified consumer engagement factors as barriers to integrating services, including high no-show rates and difficulty recruiting and engaging consumers (18). Although consumer enrollment was higher than anticipated in the first year of grantee participation, a smaller proportion of consumers enrolled in subsequent years, and 22% of consumers discontinued services after 7 months. Given the diverse forms of reverse integration and colocation and evidence of engagement difficulties, further evaluation is needed to better understand factors that individuals with serious mental illness find most important in these models and to increase sustained engagement.

Disparities in use of mental health care in the United States associated with race, ethnicity, and English language proficiency (a common proxy for acculturation) underscore the importance of obtaining perspectives of consumers from diverse backgrounds (19–21). Although variation in use of mental health services by English language proficiency has not been widely studied, Folsom and colleagues (21) noted significant differences in use of mental health services by primarily Spanish-speaking versus primarily English-speaking Latinos in a longitudinal analysis of a large administrative data set, including lower intensity of outpatient service use. These differences remained significant after the analysis controlled for demographic and diagnostic characteristics.

Prior studies assessing consumer perspectives on barriers to and facilitators of management of general medical care have highlighted stigma, inconsistent relationships with primary care physicians, overburdened primary care settings, and finances as consumer-perceived barriers to use of primary care services (22, 23). In terms of facilitators, prior studies have highlighted a preference among individuals with serious mental illness for lifestyle and behavioral interventions (24, 25) and the importance of having a trusted and friendly provider who supports these strategies (26). Survey-based data in a predominantly Hispanic sample of individuals with severe mental illness suggested a significant preference for behavioral interventions (diet and exercise) over pharmacologic interventions (24). In addition, qualitative assessment in a population of individuals with serious mental illness in supportive housing programs similarly noted preferences for lifestyle interventions to address diet and exercise and hands-on methods for self-management (25).

Limited prior studies assessing consumer perspectives specifically on reverse-integrated and collaborative care models have identified possible themes. Using focus groups to assess barriers to metabolic screening in a sample of individuals with serious mental illness at a large community mental health center, Mangurian and colleagues (27) found strong consumer support for the expansion of psychiatrist scope of practice to include provision of general medical services. Consumers in that study discussed the challenges of coordinating their care among multiple providers. Among individuals with serious mental illness already receiving care in a reverse-integrated system, Rollins and colleagues (28) found that consumers specifically cited convenience, friendly staff, and increased collaboration among providers as features fueling a positive view of the care setting. Given the engagement difficulties noted in real-world pilot studies of reverse-integrated systems, there is a critical need to build on this evidence base in order to understand how to tailor reverse-integrated and reverse-colocated models to engage consumers.

This study qualitatively assessed the perspectives of a sample of individuals with serious mental illness receiving care in an urban specialty mental health setting. Consumer perspectives on both current management of general medical health and a hypothetical reverse–colocated care model were examined to determine which features of current health management consumers viewed most positively, whether consumers viewed a reverse-colocated model positively, and which features of a reverse-colocated model were viewed most favorably. The study also aimed to assess similarities and differences in perspective between English- and Spanish-speaking consumers.

Methods

Intervention Setting

The study was conducted in two outpatient mental health clinics that are part of a comprehensive community-based program for individuals with serious mental illness located in the northern part of the borough of Manhattan in New York. The clinics specialize in delivering treatment for psychotic disorders and affective disorders. Individuals receive services regardless of ability to pay, and care is available in Spanish or English. The clinics are staffed by psychiatrists, social workers, case managers, a part-time dietician, peer specialists, and mental health therapy aides. Services provided include individual psychotherapy, medication management, group therapy, and a day program for a subset of consumers. The clinics are physically proximal to an academic medical center, and consumers receive primary care services from outpatient clinics affiliated with the academic medical center or from local community outpatient providers. The study was conducted from February 2017 through August 2017.

Sampling and Recruitment

Participants were recruited as a purposive sample of individuals currently receiving mental health services at the clinics. Consumers were eligible if they were currently seeing a mental health provider at one of the two sites; had a diagnosis classified as serious mental illness, defined as schizophrenia, schizoaffective disorder, bipolar disorder, or major depressive disorder; were psychiatrically stable enough to safely participate in the protocol; were capable of understanding consent; and were willing to complete the study requirements and provide signed informed consent. Clinic staff were introduced to the study criteria and protocol via written advertising materials and in-person presentations at clinic team meetings. Clinic staff identified consumers who met the first four criteria and approached consumers in person at the clinic or via phone to introduce the study and ask potential participants if they were interested in speaking with a research staff member. Consumers who expressed interest met with a research staff member to review study procedures for the informed consent process. Thirty consumers consented to participate, and they were each compensated $15 for participation.

Data Collection

After the participant provided consent, outpatient clinic charts were reviewed to obtain demographic information and to confirm eligibility for the study. Although the ethnicity of all participants was recorded, information on race was not available for most of the Hispanic participants, and thus data on race are not reported here. A semistructured interview guide was developed on the basis of a literature review. [The interview guide is included in an online online supplement to this article.] The guide was structured to assess the participant’s current experience with management of general medical health, followed by a vignette describing a reverse–colocated care model and questions to elicit the participant’s reaction to the vignette. Interviews were conducted by two members of the research team in English (RT) or Spanish (BT), according to consumer preference. The research team member who conducted interviews in Spanish (BT) is a native Spanish speaker, fluent in both English and Spanish. Interviews were completed with 15 English-predominant and 15 Spanish-predominant speakers. Interviews were audio recorded and transcribed verbatim. Interviews in Spanish were both transcribed and translated. Transcripts were checked against audio files by members of the research team (RT and BT) prior to data analysis.

Data Analysis

The analysis team included two adult psychiatry residents (RT, SR) with clinical experience in community behavioral health and qualitative methods, and a medical student (BT) with research training. An inductive thematic-analysis approach (29) was employed as described by Braun and Clark. Transcripts were coded using Atlas.ti, version 8.0. Three members of the research team (RT, SR, BT) independently coded an initial round of transcripts and developed a preliminary codebook. Triangulation was achieved through an iterative and collaborative process in which two members of the research team (RT, SR) conducted independent rounds of coding and met regularly to reach consensus about the final codebook. The outcomes of this thematic analysis reflected prominent themes. Prominent themes were identified on the basis of importance and relevance to the research topics of current management of general medical health and reverse colocation and whether these themes were reiterated frequently, consistently, and with high prevalence. The data analysis team agreed that data saturation had been achieved because no new themes were emerging at the end of analysis.

Descriptive statistics, chi-square tests, and t tests were applied to the demographic data. Information on general medical conditions was used to calculate the Charlson Comorbidity Index (CCI), a widely accepted index for measurement of multimorbidity.

This study was approved by the New York State Psychiatric Institute Institutional Review Board.

Results

Demographic characteristics are presented in Table 1. In the sample of 30 study participants, 70% were Hispanic, consistent with the community served by the clinics (30). Therefore, demographic characteristics were compared both by language preference (Table 1) and ethnicity (Hispanic versus non-Hispanic) [see supplement for a table with these comparison groups]. No significant differences were found between English- and Spanish-speaking study participants in prevalence of chronic general medical conditions. Over 40% of the sample was classified as obese. Compared with primarily Spanish-speaking participants, a significantly greater proportion of English-speaking participants had psychotic disorders (p=.02). Although a higher proportion of non-Hispanic participants had psychotic disorders, compared with Hispanic participants (N=8, 89%, versus N=12, 57%), this difference did not reach significance (p=0.09) [see supplement]. Spanish-speaking participants were significantly more likely than English-speaking participants to self-report having a primary care doctor (p=0.01); this was also the case for Hispanic subjects as compared with non-Hispanic (p=0.01). In the comparison of Hispanic and non-Hispanic participants, no other differences in demographic characteristics reached significance [see supplement].

Prevalence and frequency of reiteration of all coded themes are provided in Table 2. The themes identified as the most prominent are described below, with sample quotations listed in Table 3. One theme (family and friends as providers) was among the most prevalent; however, it was not determined to be among the most prominent themes overall because of limited frequency of reiteration and limited relevance of comments to the research question.

Perspectives on Reverse Colocation of Care

Confidence and trust.

Consumers reacted positively to the vignette describing a reverse-colocated system. Among features most frequently cited as fueling this positive reaction, consumers voiced support for reverse colocation based on a sense of confidence and trust in their mental health clinic staff and setting. Reflecting on strongly positive existing relationships with the clinic, consumers expressed support for the idea of reverse colocation based on a desire to receive care in a setting and among people seen as familiar, comfortable, and supportive. Consumers specifically conveyed that they would automatically trust a primary care provider hired to work at their clinic by virtue of the fact that their trusted mental health staff had identified this person.

Communication and coordination of care.

Many consumers expressed a favorable view of the possibility that a reverse–colocated care model would increase communication and coordination among providers. They voiced the expectation that in reverse colocation, all providers would have a full understanding of both their general medical and mental health issues, with frequent direct communication and coordination of care between mental health and general medical providers. Most consumers expressed positive feelings about this situation, viewing increased communication and coordination as an important ingredient for the delivery of timely and appropriate health and wellness interventions. Two consumers offered a contrasting view, expressing confidentiality concerns.

Access to care.

Nearly every consumer commented on access to care, including improved physical proximity and increased appointment access, as an appreciated advantage of a colocated system. Consumers with minimal physical disability and relatively convenient current primary care arrangements referred to fellow consumers at the clinic who faced these barriers, expressing a hope that a colocated model would benefit others. Several consumers cited long waiting lists and clinic wait times as an access challenge at their current general medical care provider, stating that they hoped a colocated model would ameliorate these issues. Others expressed the hope that having a primary care provider on site would allow for better urgent care access in addition to routine annual visits.

Current Experience With Health Management

The mental health clinic as a resource for general medical care.

Among possible “providers” (including clinical providers from the mental health clinic, clinical providers outside the mental health clinic, friends and family, and peers), consumers most prominently and positively spoke of the mental health clinic’s assistance with management of overall health. Mental health clinic staff were warmly described as providing health education on diet and nutrition and clinic-based exercise classes. Mental health clinic staff were also cited as a main source of referral for general medical care resources outside of the clinic. In contrast, clinical providers outside the mental health setting were described as adequately providing services, such as annual physicals and laboratory studies. Comments about relationships with outside providers generally lacked the same level of explicitly articulated warmth that characterized comments about mental health providers.

Self-efficacy and self-management.

Most consumers placed a strong value on the ability to draw on their personal strengths to independently manage health and well-being on their own terms. When commenting on tools and resources provided by others, consumers were most enthusiastic about clinic fitness classes, diet and nutrition education, and other such resources that assisted in primary prevention through self-management. Aside from resources and education received from others, consumers strongly emphasized use of their own personal strategies for fitness and nutrition management, developed independently, as central to their current physical health management.

Symptom burden: impact of symptoms of mental illness.

Even though the semistructured interview questions focused almost exclusively on general medical health, consumers emphasized symptoms of mental illness as having the most notable negative impact both on autonomous health management and on quality of life. Some broadly spoke of the “mind-body” connection, noting the struggle to feel well physically when one was psychologically unsteady. Others cited specific ways in which symptoms of mental illness concretely interfered with daily management of overall health and functioning. In contrast, symptoms of medical illnesses were described as affecting but not dramatically limiting daily functioning.

English- and Spanish-Speaking Consumers

The most prominent themes were highly similar between English- and Spanish-speaking consumers, in both responses to the reverse–colocated care vignette and perspectives on current management of general medical health. Many Spanish-speaking consumers expressed satisfaction with the accessibility of services in their preferred language. However, instances when services were not delivered in the consumer’s preferred language significantly affected the individual’s knowledge about health issues. Several consumers specifically reported that the language barrier impeded their understanding of medications and diagnoses.

Discussion and Conclusions

This study indicated highly favorable reactions to receiving support with management of one’s overall health in the mental health setting among individuals with serious mental illness, with a specific focus on working with trusted staff, communication and coordination, and access to care. Notably, themes elicited in this study were nearly identical to those elicited from individuals with serious mental illness in a fully reverse-integrated system in the Midwest (28). Another study in California that focused on reverse-integration strategies also noted the amelioration of issues with communication and coordination (27), as noted in this study. The consistency in themes in samples of individuals with serious mental illness across care settings suggests features of health care management systems that are of most importance to this population, highlighting the primacy of receiving care from a trusted and familiar source and tight communication and collaboration.

Participants were notably more focused on preventive self-management health and wellness strategies than on traditional medical services. This finding could simply reflect a lower level of medical comorbidity requiring traditional medical services. The sample had low CCI scores and averaged half the number of general medical diagnoses and lower rates of some chronic conditions (hypertension and hypercholesterolemia), compared with a similar patient sample (22) in which low levels of self-efficacy in management of general medical illness were noted. However, prior qualitative studies have suggested a preference for nonpharmacologic management of health and wellness among individuals with serious mental illness, even among those with significant comorbidity (24, 25). Furthermore, rates of some chronic conditions were not insignificant in this sample (e.g., nearly one-third of participants had diabetes). Thus this study adds to prior qualitative literature suggesting that lifestyle self-management is a preferred approach for health management among individuals with serious mental illness, a hypothesis that should be further evaluated by using a more generalizable methodology.

Highly similar responses by English- versus Spanish-speaking consumers likely reflected the uniquely strong availability of language-appropriate services in the sampled treatment settings. This reassuringly suggested that consumers from both groups generally experienced this care system in an equivalent manner, despite their language differences. The finding could also be attributable to the fact that most of the 30 participants (70%) shared an ethnic background (Hispanic), despite language differences. Replicating this study in a sample with a larger non-Hispanic population would facilitate distinguishing how perspectives vary according to ethnic differences versus language preference differences. Even though the themes were largely similar between the two groups, some Spanish-speaking consumers experienced challenges, which indicates that even in a setting with widely available language-appropriate services, departures from service provision in the appropriate language have significant ramifications. Further investigation in settings with less accessible language-appropriate services is warranted.

This study had several limitations. Some factors limit generalizability, including the qualitative approach, unique treatment setting (a comprehensive community-based specialty care program with multidisciplinary staff and strong bilingual services), and sample size. Findings were also subject to the interpretation bias of the research team; of note, the bulk of the analysis was performed by two team members who are native English speaking. Demographic factors could not be fully characterized because of incomplete data on race. Despite these limitations, this study adds to a growing body of literature informing clinicians on features to consider when tailoring physical health management support to best meet the preferences of individuals with serious mental illness.