human development class

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T he idea that mental healthtreatment should result in abetter life for persons with se- vere mental illness dates back to at least the 1970s, when improvement in quality of life was declared to be the goal of the National Institute of

Mental Health’s Community Support Program initiative (1,2). For a time, quality of life attracted considerable attention (3–7). Then other pressing concerns intervened (8).

In the 1980s, the presence of per- sons with severe mental illness on the

streets and in homeless shelters occa- sioned a crisis requiring a response (9–13). Later, the movement for mental health system reform brought another shift in priorities. With man- aged care came demands for cost-ef- fectiveness (14), measurable out- comes (15), and evidence-based stan- dards for the treatment of severe mental illness (16,17). The emphasis on quality of life has been largely eclipsed as a result.

This article returns attention to this topic, raising questions about what quality of life in the context of severe mental illness should mean as both an outcome of treatment and an ob- ject of research. We aim to reformu- late the concept in a way that sets higher standards, reflects the new emphasis on recovery, and construes quality of life not only as well-being but also as agency (18–23). Social in- tegration serves as our substantive fo- cus. We define social integration as a process through which individuals with psychiatric disabilities develop and increasingly exercise capacities for interpersonal connectedness and citizenship (24).

A capabilities approach to quality of life The capabilities approach to human development provides the concep- tual framework for this exercise. The product of decades of scholar- ship in development economics and moral philosophy (25–29), the capa- bilities approach reconceptualizes quality of life for disadvantaged pop- ulations (30). It was developed as an alternative to utilitarian formula-

A Theory of Social Integration as Quality of Life NNoorrmmaa CC.. WWaarree,, PPhh..DD.. KKiimm HHooppppeerr,, PPhh..DD.. TToonnii TTuuggeennbbeerrgg,, MM..EEdd..,, LL..II..CC..SS..WW.. BBaarrbbaarraa DDiicckkeeyy,, PPhh..DD.. DDaanniieell FFiisshheerr,, MM..DD..,, PPhh..DD..

Dr. Ware and Dr. Dickey are with the Department of Psychiatry, Harvard Medical School. Dr. Ware is also with the Department of Social Medicine, Harvard Medical School, where Ms. Tugenberg is affiliated. Dr. Hopper is with the Nathan S. Kline Institute, Orangeburg, New York, and the Mailman School of Public Health, Columbia University, New York City. Dr. Fisher is with the National Empowerment Center, Lawrence, Massachusetts. Send cor- respondence to Dr. Ware at the Department of Social Medicine, Harvard Medical School, 641 Huntington Ave., Boston, MA 02115 (e-mail: [email protected]).

Objective: Quality of life, once a priority in caring for people with se- vere mental illness, has since been eclipsed by other concerns. This ar- ticle returns attention to quality of life by offering a theory of social in- tegration (as quality of life) for persons disabled by severe mental ill- ness. Methods: Data collection for this qualitative study consisted of 78 individual, unstructured interviews with 56 adults who have been psy- chiatrically disabled. Field observations and interviews with staff and service users were carried out during eight ethnographic visits to serv- ice sites working to promote social integration. Data were analyzed with an inductive strategy based on grounded theory methodology and framed theoretically by the capabilities approach to human develop- ment. Goals were to identify personal capacities needed for integration, characterize occasions for capacity development in mental health care, and develop a working theory. Results: Six personal capacities were identified: responsibility, accountability, imagination, empathy, judg- ment, and advocacy. Occasions were characterized in terms of their defining mechanisms: contradiction, reinterpretation, rehearsal, raising expectations, and confrontation. A working theory was constructed to characterize the process of capacity development for social integration through exposure to increasingly challenging occasions for growth in the context of mental health care. Conclusions: Capacities for social in- tegration can be effectively developed as part of the everyday routines of mental health care. Eventually, the process shifts from development to the exercise of capacities and to participation as full citizens in the so- cial world beyond treatment. (Psychiatric Services 59:27–33, 2008)

tions that use personal satisfaction and income as primary quality-of- life indicators. Until recently, the ca- pabilities approach has been associ- ated principally with the study of standards of living for poor people in developing countries. We are now seeing it put to other uses, including rethinking disability and disparities in health (31–35). All of these efforts target social structures outside serv- ice systems.

Our goal here, in contrast, is to use this set of ideas to construct an individual-level theory that can guide efforts to foster social integra- tion for persons with psychiatric dis- abilities receiving mental health care. From a capabilities perspec- tive, quality of life is construed in terms of agency, that is, intentional, self-directed action. Realization of agency is dependent upon the syner- gistic combination of two essential ingredients: personal capacity and social opportunity.

Personal capacity refers to attrib- utes of individuals that equip them to exercise agency. Capacities are both inherent and developed, mean- ing that a certain amount of capacity may “come naturally.” Inherent ca- pacities improve and new ones are acquired with learning and practice. Personal capacities constitute “ag- ency potential.”

Capacities are not the same as skills. Though both suggest compe- tence, we may think of skills as com- petencies acquired through practice, such as playing the piano or—in the context of mental health treatment— symptom management, emotion reg- ulation, or stress reduction (36–38). Capacities, in contrast, are competen- cies acquired through developmental processes aimed at moral, social, cog- nitive, and emotional growth. Skills may be thought of as performative and capacities as generative.

Opportunities are real options for action in the social world outside service systems. To take advantage of opportunities, individuals must have both the requisite personal capacities and the needed resources. Reading, for example, requires both literacy (capacity) and reading material (re- source). The ability to take advantage of opportunities is mediated by cir-

cumstances of the social environ- ment—social processes (for example, discrimination), laws, customs, and policies. Real opportunities enable an individual to pursue socially valued ends. Both the pursuit and the achievement of these ends improve quality of life. In what follows, we use the term “occasion” to refer to oppor- tunities occurring as part of mental health care.

The research This article is the second in a planned series of reports from an anthropolog- ically informed, qualitative study. The study used the capabilities approach

to define social integration in the con- text of psychiatric disability and build a theory that explains how capacity development for social integration may take place. Data were collected from 2003 to 2005. The first report from the study offered a new defini- tion of social integration (see above) (24). Here, we address the study’s second, theory-building objective.

Methods Data collection Two types of data collection activities were carried out for this study: indi- vidual in-depth interviews and brief

ethnographic visits. In-depth inter- views were conducted with adults who had been psychiatrically dis- abled but who, in the judgment of the investigators, had become more socially integrated since disable- ment. Judgments were based upon information forwarded by service providers and made collectively by the research team. Interviews were unstructured and worked to elicit detailed accounts of experiences re- lated to social integration. Seventy- eight interviews were conducted with 56 interviewees.

Brief ethnographic visits were short stays at service sites that work to foster social integration for per- sons with psychiatric disabilities. The purpose of the visits was to un- derstand how this takes place. Eight visits were made to five programs: a psychiatric rehabilitation facility, a consumer-run drop-in center, a ther- apeutic community, a residential and employment program aimed at “re- defining community,” and a commu- nity-based treatment center for young adults with psychosis. Visits lasted for one to two days and in- cluded interviews with staff and pro- gram users and field observations.

The study was approved by the Committee on Human Studies at the Harvard Medical School and by the Institutional Review Board at the Nathan S. Kline Institute for Psychi- atric Research. Informed consent was obtained from all study participants with an approved consent form.

Data analysis Strategies for analyzing qualitative data are not simply pulled “off the shelf” but rather custom built to fit each investigation (39,40). To con- struct a theory showing how capaci- ties for social integration may develop for individuals with psychiatric dis- abilities, we used a theory-driven- but-inductive approach to data analy- sis informed by the capabilities ap- proach. The observational and inter- view data were analyzed—first, to specify the capacity construct and second, to characterize occasions for capacity building in mental health care.

We posed two analytical questions: What capacities are needed for con-

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We define

social integration

as a process through

which individuals with

psychiatric disabilities

develop and increasingly

exercise capacities

for interpersonal

connectedness and

citizenship.

nectedness and citizenship? and What do occasions for building ca- pacities that foster connectedness and citizenship look like? To address these questions, interview tran- scripts and materials derived from observations (notes on ethnographic visits, notes on investigator discus- sions of ethnographic visits, and transcripts and recordings of inter- views conducted during visits) were reviewed and discussed in face-to- face, day-long meetings of the re- search team and in telephone con- ferences. Twenty-three such meet- ings and conferences took place over two-and-a-half years.

To identify capacities needed for so- cial integration, the team selected from the larger corpus of data sections of text that they judged to represent instances of connectedness and citi- zenship. We then characterized the capacities involved by naming and defining them in ways intended to re- flect both the meanings inherent in the text (in contrast, for example, to dictionary definitions) and insights and understandings developed in the course of conducting the research. This analytic strategy is informed by the grounded theory approach to qualitative data analysis (41–43).

Much the same procedure was used to characterize occasions for ca- pacity building. Sections of text that represented interpersonal interac- tions between individual providers and recipients of mental health care and that were judged to exemplify an occasion were identified, named, contextualized, and interpreted by the team. Names were selected to represent the change processes that defined each interaction as an occa- sion. This means that occasions are represented as mechanisms of change.

Once instances of capacities and occasions had been fleshed out, a hy- pothetical process specifying how they interact, informed by the capa- bilities approach, was formulated. The statement of this process is the promised working theory of capacity building for social integration.

Results Presentation of study results reflects the theoretically informed, yet induc-

tive analytical process described above. We show how the analytical questions intended to specify capaci- ties and occasions were answered, and we lay out the theory of capacity development for social integration.

To answer the analytical questions, six capacities and five types of occa- sions were identified. Capacities are moral, social, cognitive, and emotion- al competencies that build maturity and anchor social action. Occasions are represented as change mecha- nisms fostering capacity development. An overview appears in Figure 1.

What capacities are needed for connectedness and citizenship? The following capacities are suggest- ed by the data.

♦ Responsibility is the ability to act in ways that reflect consideration and respect for others.

♦ Accountability is being answer- able to others for the consequences of one’s actions in the context of a given set of social or moral standards.

♦ Imagination is the ability to form ideas and images in the mind and know they are mental creations.

♦ Empathy is the ability to envi- sion, understand, or identify with oth- ers’ points of view.

♦ Judgment is the ability to form sound opinions and sensible deci- sions in the absence of complete in- formation.

♦ Advocacy is the ability to argue articulately for a position orally or in writing.

The relative salience of social, emo- tional, cognitive, and moral dimen- sions varies across capacities. Empa- thy, for example, is prominently social and emotional. Cognitive and emo- tional dimensions are especially salient in advocacy. In responsibility

and accountability, social and moral dimensions come most quickly to the fore. A major advantage of the capac- ity construct and the larger capabili- ties approach is that they highlight the moral dimension of agency, thus allowing moral experience, or “what really matters” (44), to be introduced into the discourses on social integra- tion following psychiatric disability and the meaning of recovery from mental illness.

What do occasions for building capacities look like? To address this question, five types of occasions were identified. Occa- sions are defined as structured mechanisms of change leading to ca- pacity development. Here, mecha- nisms of change are embedded in microexchanges between mental health providers and users of care. In each type of occasion, change is di- rected at building capacity for con- nectedness or citizenship. The five types of occasions represented— contradiction, reinterpretation, re- hearsal, raising expectations, and confrontation—are those most sal- ient in the study data.

Contradiction. Mr. M, who was an interviewee, described being evicted from a homeless shelter because of repeated rule infractions. He was an- gry about the eviction. However, his anger was tempered—and complicat- ed—by the fact that although shelter staff had instigated the move, they had also found him a new placement, helped him pack his things, and driv- en him to his new residence. Mr. M was impressed but also confused: “I couldn’t just call them jerks!” he ex- claimed. “True, they kicked me out, but look what they also did for me!” This seemingly contradictory juxtapo-

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FFiigguurree 11

Capacities and occasions for the development of agency and social integration

Capacities Occasions Responsibility Contradiction Accountability Reinterpretation Imagination Rehearsal Empathy Raising expec- Judgment tations Advocacy Confrontation

Agency development

Connectedness and

citizenship

sition of callousness and concern trig- gered a shift in both perspective and behavior for M. “I remember it really clearly,” he said. “I got to the new place, and when I walked through the door I said to myself, ‘This is my chance to do things differently.’ And I did. It started there. I started being accountable to people.”

Reinterpretation. Reinterpreta- tion is occasioned by encounters with new meanings of a familiar idea. In the following interview ex- cerpt, Ms. S recounts an experience of being asked to “call in” to the halfway house where she was stay- ing. In the course of the interaction, she encounters a new meaning of “call in.” Though calling in had been previously experienced as an in- fringement on her independence, in the interaction depicted below Ms. S was presented with the fact that calling in can also signify considera- tion for others. Learning and acting on this new meaning, Ms. S subse- quently became more “responsible.”

“I remember the first time they asked me to call in when I went some- where. It was like, ‘Call in? You ain’t my mother! I ain’t callin’ you. It’s my business where I go and what I do!’ And she [staff person] was like, ‘But we worry about you!’ And I said, ‘No- body worries about me, so don’t even go there. I’m just here for a place to live until I can get through school and get my own apartment.’ And she was like, ‘Well if that’s all you’re doing here, you could go back and sit on a ward and do that.’ And I was like, ‘Wait a minute, what do you mean?’ ”

Rehearsal. Enactment is essential to capacity. Hence a third capacity- building mechanism is rehearsal. By rehearsal, we mean executing a de- veloping capacity in a learning envi- ronment, with the expectation of feedback. The psychiatric rehabilita- tion program participating in this study enables participants to re- hearse being students by using an adult education model of practice. The community-based psychosis treatment center organizes theater workshops led by professional actors who stage rehearsals of emotional and imaginative capacities—empa- thy in the form of adopting multiple perspectives on a situation, for exam-

ple. By creating a “living-learning” environment for the practice of re- ciprocal relationships, the therapeu- tic community we visited functions continuously as a “rehearsal stage” for connectedness and citizenship in the larger social world (Dickey B, Ware NC, unpublished manuscript). Rehearsal may usefully be contrast- ed with practice, cited above as a means of skill development. As a ca- pacity-building mechanism, rehears- ing creates experience.

Raising expectations. In a fourth example, we see increased sociability brought about through a subtle rais- ing of expectations. During a study

interview, Mr. R referred to a “turn- ing point” after which he became more open to connecting with others. As Mr. R described it, conditions for the change were created by Ms. T, a mental health practitioner who was consistently respectful and “nice” to Mr. R. When he returned her greet- ings with “go to hell,” she simply smiled. When he hung up on her telephone calls, she proceeded as if nothing had happened, inquiring af- ter his well-being as usual. Then, one day, Ms. T’s congeniality cooled. “She stopped talking to me,” Mr. R report- ed. “She stopped saying ‘hi,’ asking me how I was doing.” Mr. R found he missed the “attention.” The pull of the connection he had come to expect

outweighed the urge to remain inter- personally distant. Tentatively, he “tested the waters,” as he put it—ini- tiating greetings, being the first to “say hi.” “And that’s how it started,” Mr. R concluded. “Little by little. Talking. Then the conversations start- ed getting longer and longer. Next thing you know, I was in her therapy groups.”

By exhibiting warmth and respect, Ms. T modeled an alternative to Mr. R’s characteristic rudeness and ex- pressions of anger. By pulling back at a certain point, she signaled that his usual demeanor was no longer ac- ceptable, in effect “changing the rules” of interaction between them and setting a higher standard. The new standard required that respect be warranted or “earned” through socially acceptable behavior. Mr. R promptly responded, becoming more considerate and respectful— “nicer”—and more connected to others.

Confrontation. The last mecha- nism we term “confrontation.” By confrontation we mean deliberate challenges to actions that fail to meet accepted standards. Confronting un- acceptable actions on the part of in- dividuals with severe mental illness sets an expectation of accountability. It assumes capacity, reinforces con- nectedness, and communicates that how one acts affects others—that in social interactions, something real is at stake. This is aptly illustrated in the following interview excerpt, in which a staff person at the partici- pating therapeutic community de- scribes her response to a resident who “faked” an injury to escape work responsibilities.

“My first thought was I want him punished. But because I felt that way I realized the worst thing I could do was talk to him at the time. So I wrote him a note about how it felt to be lied to, and how it felt to realize that he was a dishonest person, and that our trust was broken, and that that was going to have lasting consequences. The consequences that arise from people’s actions are natural, and as a natural consequence of his lying to people, I’m not gonna trust him. And that’s going to be really hard for us to work around.”

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The

capacities

for social

integration can

be effectively developed as

part of everyday routines

of mental health

care.

Not every capacity-building occa- sion produces immediate change, as the remainder of this anecdote makes clear. The staff person’s attempt to communicate a lesson in the interper- sonal consequences of dishonesty ini- tially went unheeded—her note was interpreted and dismissed as simply a “list of complaints.” Subsequent at- tempts, at least one of which involved third-party mediation, led to an un- derstanding of the grievance (note: a form of empathy) on the part of the resident. Eventually, the relationship was, if not strengthened, at least re- turned to its original state.

A theory of capacity building for social integration Having laid out the building blocks of the theory—capacity, occasion, mech- anism—we come now to the task of assembling them into a proposition, as follows:

♦ Individuals with psychiatric dis- abilities bring preexisting capacities to the development process. Existing capacities expand, and new ones take root, through exposure to occasions for growth. Occasions present chal- lenges and may be simple or com- plex, that is, made up either of single interactions or of orchestrated se- quences arranged in order of in- creasing difficulty. As challenges are mastered via mechanisms—contra- diction, reinterpretation, confronta- tion—competency is affirmed. A sense of possibility emerges, and with it, aspiration. Together, aspira- tion and a sense of possibility fuel engagement with new, more chal- lenging occasions. Capacity builds and expands into agency in an itera- tive, open-ended process.

This process is depicted schemati- cally in Figure 2.

Occasions for capacity develop- ment share a number of characteris- tics. They assume that capacity devel- opment is possible and will take place. Practitioners act accordingly by setting expectations for performance and insisting that the expectations be met. They also allow for the possibili- ty of failure and, when it occurs, find constructive ways of responding. Constructive responses examine fail-

ure and place it in perspective but also allow the consequences to un- fold. Genuine actions and events are characterized by the fact that some- thing significant is at stake.

The development process is ex- pected to be neither uniform across capacities nor steady in pace. Slip- page, stalling, and temporary rever- sals will occur. Unexpected obsta- cles will crop up. Challenges will be declined. An adequate theory must account for such contingencies, as the representation we offer attempts to do.

Discussion Our intent has been to construct a working theory of capacity develop- ment for social integration that ap- plies to persons who have been psy- chiatrically disabled. The theory re- flects the capabilities approach. The capabilities approach offers several advantages as a conceptual frame- work. It assumes diversity and treats growth rather than chronicity as a way of thinking about life possibilities fol- lowing psychiatric disability. Growth is the contingent outcome of a dialec- tic between the individual and the so- cial context. The development pro- cess is thus one in which occasions for growth follow and build upon one an- other in order of increasing difficulty. Success and failure, trial and error, are expected parts of the process. Fi- nally, the capabilities approach leads

to a framing of quality of life follow- ing psychiatric disability that priori- tizes capacity for reflective action over satisfaction and functioning.

The working theory posits a spiral- like growth process through which once-disabled persons increase social integration through capacity develop- ment. We envision the theory as ap- plicable not only to social integration but also to other aspects of quality of life. We expect it to prove useful in thinking about social integration for persons with nonpsychiatric disabili- ties and other forms of disadvantage. We hope it will serve as a useful start- ing point for future empirical re- search and practice.

Social integration following psy- chiatric disability may be an ideal goal, but substantial progress in that direction is not out of reach. Field research for this project revealed a number of systematic and innovative approaches to addressing connect- edness and citizenship as goals of care. Supported employment pro- grams have placed individuals with psychiatric disabilities in competitive jobs with demonstrated success (45–49). In Europe, intensified cam- paigns for “social inclusion” have re- duced barriers to full social partici- pation for persons with psychiatric disabilities—by affirming rights, ad- dressing public fears, correcting mis- information, and overcoming work- place obstacles (50,51).

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FFiigguurree 22

The process of capacity development through exposure to occasions for growth

Agency Occasion(s) Capacity development

Challenge 4

Challenge 3

Challenge 2

Challenge 1 Mechanism

Mechanism

Mechanism

Mechanism Capacity

Capacity

Capacity

Capacity

Sense of possibility

Aspiration

Evidence accumulating as part of the “renaissance” in social psychiatry research (52) points to environmen- tal factors as antecedents of psy- chosis. Migration, discrimination, urban upbringing, and early child- hood trauma have all recently been implicated as risk factors for psy- chotic disorders in epidemiological research (53–60). The positing of causal mechanisms capable of ex- plaining statistical associations adds depth to this area of inquiry and promises further progress in under- standing psychosis (61,62).

The working theory outlined here resonates with the social psychiatry “renaissance.” However, it shifts the emphasis from origins to conse- quences of illness. The fundamental question we address is this: What kind of life should individuals who have been psychiatrically disabled reasonably be entitled to expect? So- cial integration in the form of inter- personal connectedness and active citizenship should be a reasonable ex- pectation, we argue, but as a means to a larger end. The ultimate advantage of using the capabilities approach to rethink the consequences of disability is that it leads us to define quality of life in terms of agency rather than well-being alone. From a capabilities perspective, social integration im- proves quality of life by equipping people for deliberate action and re- flective choice.

Conclusions Several questions remain to be an- swered as this initiative moves for- ward. What other capacities con- tribute to social integration besides those we have discussed? How should “occasions” be further specified? How can occasions be linked to op- portunities outside the domain of mental health care? And finally, how can the concepts and processes out- lined here be operationalized and measured to allow us to both test the theory and begin to put it into prac- tice? Implementation of these ideas is an important next step.

The data presented here demon- strate that capacities for social inte- gration can be effectively developed as part of everyday routines of mental health care. Providers tell us that they

find the theory useful as an analytical framework for critiquing their own work. In the future, we expect it to in- form the design of interventions aimed at increasing agency as part of recovery from severe mental illness— for example, shared decision making in medication management (63). At some point, the process of assisting individuals in agency development will require coordination of mental health and other service sectors. However, the process must ultimately involve a shift from development to exercise of capacities if recovery is to mean participation as full citizens in the social world outside mental health care.

Acknowledgments and disclosures

This study was supported by a grant R01-MH- 065247 from the National Institute of Mental Health. The contributions of study partici- pants—practitioners as well as service users— are gratefully acknowledged by the authors, who also thank Madeleine Smith, M.S.W., for assistance in conducting the research.

The authors report no competing interests

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