50 Years After Deinstitutionalization: Mental Illness in Contemporary Communities: Volume 17

The purpose of this chapter is to apply structural functional theory and the concept of “unbundling” to an analysis of the deinstitutionalization and community mental health efforts that have shaped the current mental health services environment.

We examine the original goals of the institutional movement, the arguments supporting it, and the functions of the institutions that were created. We then examine the criticisms of that approach and the success of the subsequent deinstitutionalization process, which attempted to undo this process by recreating the hospitals’ functions in community settings. Finally, we address the question of whether the critical functions of psychiatric institutions have indeed been adequately recreated.

Our overview of outcomes from this process suggests that the unbundling of state hospital functions did not yield an adequate system of care and support, and that the functions of state hospitals, including social control and incapacitation with respect to public displays of deviance were not sufficiently recreated in the community-based settings.

The arguments for the construction of state hospitals, the critiques of those settings, and the current criticism of efforts to replace their functions are eerily similar. Actors involved in the design of mental health services should take into account the functions of existing services and the gaps between them. Consideration of the history of efforts at functional change might also serve this process well.

We compare the deinstitutionalization of psychiatric patients and the developmentally disabled in the United States and demonstrate that there were two path-dependent processes with significant qualitative and quantitative differences, ultimately leading to better outcomes for developmentally disabled individuals.

Using secondary literature, we construct a sustained comparison of the two processes in terms of outcomes, timing, tempo, extent, funding, demographic composition, and investment in community services. We then reconstruct the strategies of de-stigmatization and framings of moral worth deployed in the two cases, analyzing their effects on deinstitutionalization in terms of conceptions of risk, rights, and care.

Deinstitutionalization began later for developmentally disabled individuals than for psychiatric patients, and was a more gradual, protracted process. It was not driven by fiscal conservatism, discharges, and the trans-institutionalization of the senile aged, as was deinstitutionalization for psychiatric patients, but primarily by the prevention of institutionalization of young children, and increased investment in infrastructure. Consequently, the deinstitutionalization of the developmentally disabled was far more thorough and successful. The process was shaped by the framing of the developmentally disabled as “forever children” by parents’ organizations that demanded a balance between autonomy, protection, and the provision of care. In contrast, the deinstitutionalization of psychiatric patients was shaped by their framing as autonomous citizens temporarily suffering from “mental health problems” that could be prevented, treated, and cured. This frame foregrounded the right to choose (and also refuse) treatment, while undervaluing the provision of care.

In this chapter, I develop an analysis of the institutional logics which have shaped the organizational field of public sector mental health and which provide a framework for understanding the complexities facing policy makers, providers, researchers, and community mental health advocates.

I first assess the current state of public sector mental health care. I then describe institutional theory, which focuses our attention on the wider social values and priorities (i.e., institutional logics) which shape mental health care. In the current post-deinstitutionalization era, there are three competing institutional logics: recovery and community integration, cost containment and commodification, and increased social control over those with severe mental disorders. Each of these logics, and the conflict between them, is explicated and analyzed. I then develop a theoretical framework for understanding how conflicting institutional logics are resolved. In the concluding section of this chapter, I offer some guidance to both researchers and advocates seeking meaningful system level reform.

Researchers studying mental health policy need to understand how competing institutional logics work to shape the political climate, economic priorities, and types of services available.

Advocacy is critical for meaningful reform, and a fourth institutional logic – that of social justice – needs to be developed by which to evaluate policy reforms and service offerings.

Reexamination and reinterpretation of the process of deinstitutionalization of public mental hospital inpatients.

A comprehensive review of related research is presented and lessons learned for the sociology of mental health are identified.

The processes of both institutionalization and deinstitutionalization were motivated by belief in the influence of the social environment on the course of mental illness, but while in the early 19th century the social environment of the mental hospital was seen as therapeutic, later in the 20th century the now primarily custodial social environment of large state mental hospitals was seen as iatrogenic. Nonetheless, research in both periods indicated the benefit of socially supportive environments in the hospital, while research on programs for deinstitutionalized patients and for homeless persons indicated the value of comparable features in community programs.

While the process of deinstitutionalization is largely concluded, research should focus on identifying features of the social environment that can maximize rehabilitation.

The debate over the merits of hospital-based and community-based mental health services is misplaced; policies should instead focus on the alternatives for providing socially supportive environments. Deinstitutionalization in the absence of socially supportive programs has been associated with increased rates of homelessness and incarceration among those most chronically ill.

A comprehensive analysis of deinstitutionalization that highlights flaws in prior sociological perspectives and charts a new direction for scholarship.

While much research examines the consequences of deinstitutionalization for caregivers, few studies address support mobilization strategies used by patients themselves. We examine the relationship between mental health patients’ needs, their activation of network ties for health discussion, and network dynamics during the course of treatment. We hypothesize that patients strategically activate their network ties for support that matches their needs. Linking activation to network dynamics, we also propose that patients with greater needs exhaust their supportive relationships and experience more network turnover.

We draw on a dataset of new mental health patients (N=173) and their associated network members (N=4,144) observed over three years. Random-intercept regression models test the relationship between patients’ needs and (1) network tie activation for health discussion and (2) network turnover.

Although the overall level of need does not predict network tie activation, mental health patients are more likely to activate network ties who provide support that matches their expressed needs for discussion, emotional, and financial support (although not instrumental or informational support). In addition, patients with elevated needs experience increased network turnover. Strategic activation and its unintended consequence together suggest a revolving door of support for patients in crisis.

In the post-deinstitutionalization era, patients’ informal social safety nets must compensate for needs that are left unmet by deficits in the formal treatment system. We find that patients seek out network members who are well-equipped to help them cope with the onset of illness. At the same time, network activation may lead to instability as high-need patients churn through supportive relationships. Future research should examine the consequences of tie activation and support needs for network dynamics in different treatment contexts.

To understand how people using community public mental health services conceptualize community and their place within it within the post-deinstitutionalization era.

Two hundred ninety-four service users completed structured interviews in two urban, outpatient, public, and community mental health facilities in the Northeast. Quantitative and qualitative responses to the MacArthur Scale of Subjective Social Status, Community Ladder version, were analyzed to understand perspectives on community.

Mean subjective community status ladder score among participants was five (SD = 2.56). Participants identified four broad categories of definitions of community: geographic community; community related to social definitions; contributing to society; and mental health service-user communities. Explanations for the location of their placement on the ladder (subjective community status) include comparisons to self and others, contributions to community, and social relationships. There was also a set of explanations that spoke to the intersection of multiple marginalizations and structural constraints. Finally, we explore relationships among understandings of community and perceptions of place within community.

Community integration is a critical concept for community public mental health services, but little research has explored how mental health service users conceptualize their communities and their roles within them. Understandings of community are crucial to appropriately support peoples’ needs within their communities. Furthermore, participants identify mechanisms that facilitate their personal community standing, and these are areas for potential intervention.

This chapter examines the effects of mental health services and stigma on changes in self-concept and well-being for individuals with SPMI.

Data for this chapter come from structured interviews and service data for 140 individuals with severe and persistent mental illnesses. We use structural equation modeling to examine the relationship between perceived and internalized stigma, as well as the relationships among stigma, self-concept (self-esteem and mastery), and well-being (quality of life and functioning).

We find that case management is negatively related to quality of life and psychiatric services are positively related to functioning. Crisis services and assessment are associated with mastery in opposite directions. Internalized stigma is positively associated with self-esteem and mastery, and negatively associated with functioning. We do not find a relationship between services and stigma.

A limitation to this chapter is the sample size, which prohibits us from examining a full range of services and outcomes. Nonetheless, our findings provide information about how services and stigma impact well-being, and may be used as a starting point for considering strategies for improving services and reducing stigma. Future work should consider pairing outcomes with services to determine their effectiveness.

This chapter builds on previous research that examines the relative effects of services and stigma among individuals in community health care by extending measures of both services and stigma, and by examining the relationship between them, in order to better determine their implications for self-concept and well-being.

We argue that self-stigma places patients on a path of marginalization throughout their life course leading to a negative cycle of opportunity and advancement. Mental health patients with higher levels of self-stigma tend to have much lower self-esteem, efficacy, and personal agency; therefore, they will be more inclined to adopt role-identities at the periphery of major social institutions, like those of work, family, and academia. Similarly, the emotions felt when enacting such roles may be similarly dampened.

Utilizing principles from affect control theory (ACT) and the affect control theory of selves (ACTS), we generate predictions related to self-stigmatized patients’ role-identity adoption and emotions. We use the Indianapolis Mental Health Study and Interact, a computerized version of ACT and ACTS, to generate empirically based simulation results for patients with an affective disorder (e.g., major depression and bipolar disorder) with comparably high or low levels of self-stigmatization.

Self-stigma among affective patients reduces the tendency to adopt major life course identities. Self-stigma also affects patients’ emotional expression by compelling patients to seek out interactions that make them feel anxious or affectively neutral.

This piece has implications for the self-stigma and stigma literatures. It is also one of the first pieces to utilize ACTS, thereby offering a new framework for understanding the self-stigma process. We offer new hypotheses for future research to test with non-simulation-based data and suggest some policy implications.

The chapter revisits the concept of social stigma viewed from the perspective of mental patients integrated in the community based on the example of Geel, Belgium that historically utilized a family care model for a significant number of patients with severe mental illness.

Interpretive analysis of data presented in ethnographies on the Geel colony by Roosens (1979) and Roosens and Van de Walle (2007), showcasing 30 patients’ case studies in addition to research-based author narratives.

This study demonstrates that chronic mental patients tend to reject the sick role and the stigma associated with it by trying to influence their social image and how their status is being defined in the community. They appear to be active managers, not passive recipients of societal attitudes, and, furthermore, functional members of the community. By forgoing exemption from social roles carried by their significant impairment, mental patients continue to be contributing members of their host families, and in some cases develop into caregivers themselves completing the circle of role reversal.

The current analysis utilizes secondary data and therefore is restricted by the information included in the primary research.

The findings allow us to develop a deeper understanding of the social status chronic mental patients acquire in the community, and how it is influenced by the dynamics of social stigmatization and remedial work these social actors are compelled to perform. Additionally, the study contributes to the inclusion of the chronic patients’ perspective in research.

To examine how clinicians navigate providing treatment to Borderline Personality Disorder (BPD) in the context of the DSM 5, deinstitutionalization, and the biomedical model.

We conducted 39 interviews with mental health providers in the United States in a two-year period preceding and following the release of the DSM 5. Using Constructivist Grounded Theory, we analyzed the data for themes that emerged.

Clinicians faced pressures from insurance companies, the DSM categories, and their professional training to focus on biomedical treatments. These treatments, which emphasized pharmaceuticals and short courses of care, were ill-suited to BPD, which has a strong evidence base recommending long-term therapeutic interventions. We term this contradiction a “biomedical mismatch” and use Gidden’s concept of structuration to better understand how clinicians navigate the system of care. Providers ranged in their responses to the mismatch: some championed biomedicine, others were complicit, and a final group behaved as activists, challenging the paradigm. The sum of the strategies had downstream effects which included crisis reinstitutionalization and a discourse of untreatability. Ultimately, we discuss how social factors such as gender bias, stigma, and trauma are insufficiently represented in the biomedical model of care for BPD.

BPD fits poorly within the biomedical underpinnings of the current system. Accordingly, it illuminates the structuration of health care and where the rules of care break down. More precisely, deinstitutionalization was designed to remove patients from long courses of inpatient care. Many patients with BPD have failed to experience this outcome, with some patients now cycling through long courses of short-term crisis reinstitutionalization instead of having effective outpatient care over long periods. This unintended consequence of deinstitutionalization calls for a more biopsychosocial response to BPD.

This chapter uses Goffman’s concept of total institutions in a comparative case study approach to explore the role of psychotropic drugs in the process of transinstitutionalization.

This chapter interprets psychotropic drug use across four institutionalized contexts in the United States: the active-duty U.S. military, nursing homes and long-term care facilities, state and federal prisons, and the child welfare system.

This chapter documents a major unintended consequence of transinstitutionalization – the questionable distribution of psychotropics among vulnerable populations. The patterns of psychotropic use we synthesize suggest that total institutions are engaging in ethically and medically questionable practices and that psychotropics are being used to serve the bureaucratic imperatives for social control in the era of transinstitutionalization.

Psychotropic prescribing practices require close surveillance and increased scrutiny in institutional settings in the United States. The flows of mentally ill people through a vast network of total institutions raises questions about the wisdom and unintended consequences of psychotropic distribution to vulnerable populations, despite health policy makers’ efforts regulating their distribution. Medical sociologists must examine trans-institutional power arrangements that converge around the mental health of vulnerable groups.

This is the first synthesis and interpretive review of psychotropic use patterns across institutional systems in the United States. This chapter will be of value to medical sociologists, mental health professionals and administrators, pharmacologists, health system pharmacists, and sociological theorists.