The formation, structure, and goals of an open-ended psychoeducational support group for people with serious and persistent mental illnesses are described, differ- entiating psychoeducation from psychotherapy, and professional from peer-led support groups. Major goals are to provide education for illness management and help members combat social isolation, redeem self-esteem and hope, and improve their life situation. Three case vignettes indicate the power of the group to influence members to overcome fears, accept employment consistent with their level of disability, and improve their lives. Realistic issues regarding self-disclosure are discussed.
Keywords: mental illness; psychoeducation; support group
In the past few decades treatment for serious and persistent psychia- tric disorders has moved in new directions that are unevenly benefi- cial. Deinstitutionalization finds people now living in community settings, but typically with inadequate social supports and few rehabi- litative programs to fill their days. Treatment is generally limited to psychopharmacy, and proliferating research has generated a host of new medications. These have proved powerful in controlling positive symptoms such as delusions and hallucinations and have fewer side effects than the older medications, but major issues persist. Along with accelerating weight gain, psychopharmacological agents do little to counteract the persistent social isolation and self-stigmatization that are unfortunate corollaries of living with mental illness. Para- doxically, as symptoms diminish and self-awareness becomes more retrievable, patients begin to recognize their depreciated status in society and the poverty of their lives. Yet for most, individual
Harriet P. Lefley, Ph.D., is Professor in the Department of Psychiatry & Behavioral Sciences, University of Miami Miller School of Medicine, Miami, Florida. Correspondence concerning this article should be addressed to Harriet P. Lefley, Department of Psychiatry & Behavioral Sciences, University of Miami Miller School of Medicine, Mental Health Bldg., 1695 N.W. 9th Avenue, Miami, FL 33136. E-mail: H.Lefley@miami.edu
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psychotherapy is neither affordable nor readily accessible. Nor does it solve their major problem of social isolation.
This article describes a group for persons with schizophrenia and other major psychotic, affective, or anxiety disorders that was started over 7 years ago by an academic department of psychiatry and its affiliated teaching hospital, offering a full range of psychiatric services and research in a major medical complex in the Southeast. The group was begun for participants in a nationwide multi-site research project comparing the relative efficacy of older (first generation) and newer (second generation) drugs for schizophrenia. Since the research project offered nothing beyond pharmacological help, the sponsoring depart- ment of psychiatry started a weekly psychoeducational support group for participants.
This group was subsequently opened to other diagnoses, with the simple proviso that the individual suffer from a major psychiatric disorder and be under professional supervision. The group was eventually offered as an ongoing free service for the public without the requirements of research or patient status, primarily offering emotional support and education rather than psychotherapy.
Group Psychoeducation and Group Psychotherapy
Psychoeducation has many therapeutic components, but it is not psychotherapy. According to the definition of the American Psycholo- gical Association (APA, 2007), group psychotherapy is ‘‘treatment of psychological problems in which two or more participants interact with each other on both an emotional and cognitive level, in the presence of one or more psychotherapists who serve as catalysts, facilitators, or interpreters’’ (p. 422).
It is of interest that the APA dictionary gives no definition for psychoeducation as an intervention, listing only ‘‘psychoeducational pro- blems’’ in school environments. Yet family psychoeducation is widely acknowledged as an evidence-based treatment for schizophrenia, sup- ported by a massive body of international research (e.g., Lefley, 2009; Magliano&Fiorillo, 2007;McFarlane,Dixon, Lukens,&Lucksted, 2003).
Stone’s (2008) definition of group psychotherapy is of a time-limited process with formative, reactive, mature, and termination stages. The therapist’s role and group process derive from a specific approach (dynamic, supportive, or specialized focus) and certain commitments are required from members. They must agree to attend meetings, actively work toward treatment goals, and use the group for therapeu- tic and not social purposes. They must also be responsible for fees.
This definition clearly does not apply to the psychoeducational support group described in this article, which has neither fees nor
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attendance requirements. Nevertheless, Stone’s (1996, 2008) descrip- tion of group psychotherapy for persons with severe and persistent mental illness parallels much of what goes on in the present group. For this population, Stone recognizes the need for flexibility in atten- dance requirements, the long-term nature of these groups, and the value of members socializing between sessions.
Patients are prone to attend erratically, and a more flexible format that accepts this propensity may serve these individuals well . . . In the flex- ible format, core and peripheral subgroups develop, and over extended periods, groups develop a sense of continuity and cohesion. Treatment goals are generally formulated to help adapting to everyday problems, improving social relations, and managing feelings . . .Patients may be encouraged to socialize outside of the meetings. Therapists attempt to help patients manage their isolation and sense of shame over their illness. (Stone, 2008, p. 1916)
The definitions of the Association for Specialists in Group Work (2009) focus on training standards and are more precise than the APA definition, but lack specificity for this particular population. The training standards for specialization in group psychotherapy require the application of principles of normal and abnormal human development and functioning, through cognitive, affective, behavioral, or systemic strategies, for people who may be experiencing severe and=or chronic maladjustment, with interventions applied in the con- text of negative emotional arousal. Psychoeducation group leadership requires application of principles of normal development, through edu- cational, developmental, and systemic strategies, for persons who may be at risk for personal or interpersonal problems. But for persons with a major psychiatric disorder, group leaders should possess a store of information on etiology, treatments, and precipitants of decompen- sation, as well as an understanding of diagnostic differences and common psychological responses to having a mental illness.
This kind of psychoeducation for patients has been applied in numerous clinical settings, for bipolar disorder (Bauer, 2008) and even schizophrenia (Merinder, 2000). In research projects, psychoeduca- tional interventions have typically ranged from 6 to 9 months. They essentially offer state-of-the-art information about mental illnesses and their treatments, recognition of prodromal cues of decompensation or relapse, and illness management skills. Along with symptom- control, psychoeducation teaches communication and problem-solving techniques, and relearning of social skills.
Rather than focusing on prior psychological problems, psychoeduca- tion provides the operational tools to address the psychological fallout of painful disorders that are behaviorally expressed and socially
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stigmatized, and have known biological substrates. Addressing lack of knowledge and misconceptions about mental illnesses, psychoeduca- tion unearths the coping skills and survival strategies that patients have developed over time, both adaptive and maladaptive, and explores avenues to recovery. In this task, the aid of others who have experienced similar problems and similar illness trajectories clearly becomes therapeutic. Psychoeducation above all focuses on returning a sense of self-value and worthiness. Thus when the APA definition of group psychotherapy states that it ‘‘seeks to enhance self-respect, deepen self-understanding, and improve interpersonal relationships’’ (p. 422), the aims of both treatment modalities intersect.
Difference From Peer-Led Support Groups
Recent years have seen a salutary development in advocacy and peer support led by persons with mental illness, today called consu- mers of mental health services. A scientific national survey in 2002 found 7,467 groups and organizations run by and for mental health consumers and=or family members in the United States. Included were 3,315 mutual support groups, 3,019 self-help organizations, and 1,133 consumer-operated services (Goldstrom et al., 2006). There are mutual support groups for a wide range of mental health-related conditions, many following a 12-step model, with great variation in their availability and longevity. Peer support is just that; it provides the mutual understanding of others who have endured the same experiences and pain, and the sharing of problems, resources, and cop- ing techniques. These groups also offer role models and hope. They are often tied to an advocacy organization, such as the National Alliance on Mental Illness (NAMI) or Mental Health America (MHA).
The group described here is similar in many respects. We offer peer support, mutual understanding, resource information, coping strate- gies, and role models. There are also alliances with and referrals to NAMI and the local consumer network for training for advocacy work or for peer specialist roles in mental health services. The main differ- ence is the provision of professional leadership and a psychiatric cap- ability to answer questions. Although peer support groups flourish in many areas, locally they have faltered. Additionally, quite a few of the members have said they preferred professional leadership because they needed more education than peers could provide.
Group Admission, Structure, and Activities
There are no attendance requirements or records. The only require- ment is a diagnosis of a major psychiatric disorder that has lasted
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more than 1 year, and evidence of current psychiatric treatment or professional oversight. Some members are referred by mental health professionals, both in the psychiatric hospital and the community. Others learn of the group through NAMI or other community sources. Many members have come on their own; they are accepted as long as there is confirmation of diagnosis and current clinical treatment. There are some cases of dual disorder, mental illness and substance abuse, but the latter alone does not qualify for admission. There is no formal screening process, but in a very few cases new applicants have been screened out because they do not have a major psychiatric disorder. The most frequent diagnoses over the 7 year period have been schizophrenia, bipolar disorder, and major unipolar depression. There is no informed consent requirement because no formal treat- ment is offered and attendance is voluntary.
The group meets weekly for 90 minutes with typical attendance of 10–15 people. Although many people have participated since its incep- tion, there is little rapid turnover. Some members have attended for years and many return for visits. New participants often join a core group that remains stable for many months, with a peripheral group that continues to attend on an irregular basis. Some irregularity is due to people obtaining part-time jobs or school work that interferes with attendance, but the members still consider themselves part of the group. One member, Richard, described below, has been attending each week since the group’s inception over 7 years ago. Occasionally some members are accompanied by family members who also want education about their relative’s illness.
Members are highly variable in levels of functioning and sophistica- tion. Some are quite knowledgeable and more insightful than others, yet all seem to work well as a group. Contact and friendships are encouraged. Members of the group call each other during the week, to check up on how they are doing or simply to offer conversation. One may meet another to go to the movies, the park, or just to get together. When a member has a particularly difficult period, or suffers a bad depression, he or she may be inundated with emails and tele- phone calls expressing concern and encouragement. All these ventures are reinforced by group approval.
In contrast to many of the caveats regarding physical contact and outside friendships in psychodynamic group psychotherapy (Rutan, Stone, & Shay, 2007), in this group hugs, welcoming embraces, and outside relationships are encouraged. Stone (1996) has similarly noted the importance of socialization for this population: ‘‘Chronically ill patients are not tightly restrained to limit outside contacts among members . . . These meetings may expand into genuine, enduring friendships’’ (p. 72). Sexual liaisons have been very infrequent, but
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generally meet with group approval. Many of these individuals have spent long periods in hospitals or have otherwise been sequestered from wider social interactions, so sexual partnerships based on mutual attraction are generally viewed as positive rather than negative seque- lae if both persons are in agreement. Members are encouraged to speak of their feelings, and most do so. In the rare cases where touch- ing may be a threat to personal boundaries, the issue is explored. Aversion to touching may be psychological, cultural, or it may be a physiological aspect of an illness such as schizophrenia. It is discussed in such terms without value judgments and the person’s feelings are respected. As in all groups, strict confidentiality is maintained.
The group is led by the author, a psychologist, with the occasional attendance of psychiatric residents, for whom this is a valuable learn- ing experience. Some have said that hearing about the day-to-day lives of patients was one of the most important experiences of their train- ing. The residents do not usually participate but they are available to answer general questions about medications, metabolic syndrome, and other biological matters. Psychiatric residents are part of the sponsoring department and fulfill a valuable educational function. Although group members are informed in advance when residents are expected, their attendance does not require group consent. For all other visitors (e.g., psychology, nursing, or social work students seeking to attend a support group meeting), total group consent is required. If a single individual demurs, the visit is denied.
Meetings generally begin with participants describing their past week. The group leader prepares a topic for discussion, but frequently this is discarded when a focal issue emerges from these recitals. Didactic psychoeducational topics have been noted above. But we also talk about self-assertiveness in illness management, dealing with psy- chiatrists as partners rather than authority figures (such as questioning psychiatrists about adverse medication effects), and ways of improving the mental health system. There is much discussion of maintaining good health, family relationships, mating relationships, social and gender roles, and even current political issues. Discussions of self-concept are wide-ranging, from developmental experiences to self-appraisal as an adult with mental illness. The major focus is on appreciation of one’s own personal strengths, coping capabilities, and potential for leading a satisfying life despite the constraints of a psychiatric disability.
GROUP GOALS AND CONTEXT FOR GOAL ATTAINMENT
The initial goal is education for illness management, with content previously described. This education is a fundamental and ongoing
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feature of group participation. But the major goals in group process are to address the psychological sequelae of being diagnosed and living with a serious mental illness. These include:
(1) Combating social isolation. Most participants suffer from serious, long-time psychiatric conditions and many have substantial histories of hospitalization. Even those who maintain close family contact typically have not been able to maintain earlier friendships with peers. When they come to the group, they are frequently isolates with few social outlets.
(2) Redeeming a sense of self-esteem and hope for the future. Many mem- bers have a devalued self-concept, consider themselves losers, or view themselves as ‘‘mental patients’’ not worthy of the society of others. Some are angry at how they have been treated by former friends, or by the mental health system itself. The group message reframes the value of persons who suffer from a mental illness. They are told, legiti- mately, that in experiencing the terrors and trauma of a major psychia- tric disorder, in coping with hospitalizations and societal stigma, they have had to climb higher mountains and overcome greater obstacles than so-called ‘‘normal’’ people. They are taught to view themselves as survivors worthy of commendation and respect.
(3) Encouraging people with serious mental illness to advance beyond their present life situation. Members have varying capacities for work or con- tinuing education. There is often a reluctance to attempt unfamiliar challenges due to several legitimate concerns. First is a well-grounded fear of incurring too much stress. The psychoeducational materials teach the biological response to stress in serious mental illness, and members know from their own experience that emotional dysregulation and hyperarousal can be precursors to decompensation. There is also fear that a failure experience will damage their sense of self-efficacy. Many fears are based on prior setbacks or on the harsh realities of the workplace. What will happen if they can’t do the work, or become openly symptomatic and need to be rehospitalized? Do they dare dis- close their mental illness, and what will happen if they do?
Members of the group discuss their own tendencies toward amotiva- tion because of these concerns. They explore situations in which they may be able to control external stressors, titrate their activity levels, and manage their emotional responses with rational assessments of their capabilities and limits. But along with cautions, there is also the impetus for members to try new challenges, with the firm assurance of group support and faith in their potential regardless of outcome.
The following vignettes focus on the power of the group to counter- act fears and enable decision-making. Education, reframing, and reas- surances from a knowledgeable group leader are important. However, it is inappropriate for the leader to be the major figure to propel a member into a feared course of action. Seeking to help that person take a chance, the leader tacitly encourages like-minded participants to speak their minds. Ultimately it is the combination of personal desire and group pressure that leads a reluctant member to act. (Cases
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are presented with pseudonyms and masked identifying characteris- tics, as is customary.)
Tony is a 45-year-old African-American who sought out the group to help him deal with what seemed to be an intractable depression. Tony had taught computer science in a small Southern college for 18 years, despite having been diagnosed with bipolar disorder in his teens. He took medication, married, and functioned well in his job. The college folded, ending his job, and Tony began to drink heavily. He was abusive to his wife, was briefly jailed, and his marriage ended. He returned home to live with his elderly mother. Tony goes to AA and hasn’t had a drink in 2 years. He desperately wants to work again, but is afraid to fill out applications asking whether he had ever been jailed. He is also afraid he won’t be able to do the work. At each ses- sion, Tony would mull over the same concerns, depressed, feeling use- less, afraid to try. Others became frustrated with him and someone said, ‘‘Look, I’m sicker than you, but if I had your skills, nothing would hold me back.’’ Tony finally agreed to submit his CV to the local com- munity college and was told there were two job openings that fit his qualifications. But he was afraid to apply. ‘‘What if I get the job and fail?’’ he moaned. Someone in the group said ‘‘What if you succeed?’’
Tony didn’t come back for 6 weeks. One day he showed up smiling. ‘‘I took time off from work to come and tell you what happened,’’ he said. ‘‘They said they had a grant for computer training that I could fill very well. I filled out the application, and where it asked if I had ever been convicted of a criminal offense I said ‘yes’ and put in the explana- tion that I had bipolar disorder and was in a manic state. I told them my psychiatrist’s name, and that I was on medication, and they passed me! I’ve been working for 6 weeks and I love the job, and they really seem to like me.
‘‘I came back to thank the group and tell you what happened. I was really afraid to apply and hesitated a long time. But some of your words kept echoing in my mind, and that’s what finally made me take the plunge. Over and over again I kept hearing ‘But what if you succeed?’ ’’
Elena came to the group after reading about it in the NAMI newslet- ter. She is an attractive, well-dressed woman in her early forties who suffers from bipolar disorder. Born in Brazil to an American father
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and Latin-American mother, Elena comes from an upper middle-class family and was raised in various South American and Caribbean coun- tries before coming to the United States. Traumatized in childhood, Elena was sexually abused by her father for many years, and suffered the dual outrage of disbelief when she told her mother. When she was in her late teens she ran away from home to escape her father.
Elena lived intermittently as a homeless person, in marginal drug communities, and was frequently hospitalized for depression and suicide attempts. With the help of Narcotics Anonymous she was able to conquer her drug addiction and later managed to get an education at a community college. Her father died and she recon- ciled with her mother, but the extreme mood swings and suicidal thoughts persist.
Elena is very warm, personable, and motherly. She nurtures the group. Her role is what Stone (1996) has described as the sociable role in group functioning, and sometimes the structural role as task leader. She gives everyone her phone number and urges them to call when they need support. They all love her. Fluent in four languages, Elena has worked periodically as an interpreter. Several months ago she took a job as a court interpreter. Sophisticated and open about her needs, she told the court her diagnosis and the importance of a low-stress occupation. She said she could work no more than three days a week, and they agreed.
But the demands for an interpreter with command of four lan- guages were great, and increasingly Elena was asked to work another day, and then another. She insisted she needed Friday mornings off so she could still participate in the group. She came to meetings every week but was visibly tired, tense and on edge. The court was not only giving her more work than she bargained for, but they were having her translate at hearings for involuntary commitment of persons with mental illness. She felt she couldn’t stand another such hearing with- out decompensating herself.
The members rallied around her. They told her that her need to nurture and her self-esteem problems made it difficult for her to say no. She did not have to run away again from an abusive power figure, in this case the court. She had the right to say no. They insisted that she had the right and indeed the responsibility to do what was best for her—to tell the court that the agreed uponwork-week was for three days only, and that she was to be relieved of translating at hearings for invo- luntary commitment because they were exacerbating her own illness.
The next week Elena returned and happily told us the results. The court relieved her of hearings for involuntary commitment, and under those conditions, she felt she could work four days in the regular court- room without harm. Everyone was satisfied with that solution.
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Richard, a former businessman in his middle fifties, started with the group at its inception. He usually came every week with his brother Hugh. Richard has a diagnosis of schizophrenia, which typi- cally presents in late adolescence or early adulthood, but the symp- toms did not appear until much later in his life. Twenty five years ago Richard and his brother had their own insurance and financial planning company. Richard had an MBA, was a successful executive and a former college football star. He was married and had a young son. Then, at age 32, Richard had a complete breakdown. He suffered violent psychotic episodes and spent some time in jail. His wife divorced him and took his little boy away. Richard was extremely paranoid, couldn’t work, and started a downward slide. He spent the next 20 years isolated and extremely psychotic, lived with his elderly parents, and was frequently hospitalized. When the parents died, Hugh, who had never married, took over the caregiving role and moved back into the parental home.
For years no medication seemed to lift Richard from his psychotic state. When the brothers learned that the local medical school was involved in a major study of medications for schizophrenia, Richard was urged to volunteer. He joined the support group and after he was unblinded from the clinical trials, he found that a particular med- ication worked well for him. Finding the right medication, Richard says, and especially the group, have saved his life. At Christmas he stated that for 20 years during every holiday season he had always been hospitalized. But for the past 7 years he hadn’t been hospitalized once.
For a long time Richard was afraid of leaving the house, talking to neighbors, or traveling on public transportation. All of them evoked paranoid feelings and terror. But he forced himself to take the bus in order to attend research and group sessions. This became so impor- tant to him that he’s gradually begun to be less afraid of strangers.
Richard is a mainstay of the group, but he has also learned to accept and follow its recommendations. He walks to the supermarket every day to shop and had learned to respond to greetings from neighbors without being paranoid. He has learned to structure his day so that he listens to music and watches sports instead of staring into space and hallucinating. When someone remarked that Richard’s cognitive skills seemed intact, the group urged him to try to resume a role in the family business. Richard agreed that he could read spread sheets and do actuarial work on his home computer. He started doing this and is now proud of his ability to help his brother make decisions about the family business.
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And this vignette ends with a really heartwarming story. Some months ago Richard fulfilled a long-held dream. Finally he felt emotionally ready to contact his now adult son. He wrote to his son, explained his illness in detail, and apologized for not being able to parent him. He said he hoped they could have a relationship and invited him to visit. The young man came with his fiancée and they had a very satisfying reunification. Now they write to each other every month.
A clear limitation of presenting a few case studies is an inability to operationalize outcome variables. Nor is it possible to demonstrate equally salutary effects in other members of the group. These three cases represents different levels of functioning and types of progress, and although many other examples could be given, not all members benefit to the same extent. Because of the flexibility and open- endedness of this group model, a focus on research has been eschewed. Yet it is recognized that group models cannot be replicated without research. So the present challenge for data analysis is to use an ipsa- tive measure of goal-attainment or to apply some typical outcome mea- sures (e.g., symptom reduction, non-hospitalization, quality of life), perhaps correlated with attendance, and to follow these and other cases longitudinally to determine long-term effects.
Although psychoeducation has been differentiated from psychother- apy in group work, there is clear overlap in their structure and goals for people with this level of psychiatric disability. In fact, as has been noted, Stone’s (1996, 2008) description of group psychotherapy for severe and persistent mental illness applies to much that transpires in the present group. Noting the need for modification of traditional psychodynamic approaches in group therapy for this population, Stone gives examples of education regarding the importance of continuing medication, and techniques for managing hallucinations or paranoid thinking, or for building social relations. The group cohesion and core and subgroups are apparently recognizable features of both interven- tions. And dealing with isolation, shame, and self-stigmatization are major overlapping goals.
How does this group differ from peer support groups? All support groups offer mutual understanding and help in dealing with ongoing stressors. The recognition that others have lived through similar experiences and survived is enormously comforting. In most groups members will try to educate each other about new developments in their specific area of interest, about resources and coping strategies
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that have proved beneficial. The psychoeducational group described here has many of the characteristics of peer support groups in being free, ongoing, with no time-limitations or attendance requirements. Yet it also offers professional expertise and assurance of empirically- validated, state of the art information about the conditions that bring them to the group.
In addition to requiring very specialized education, behavioral and psychopharmacological, the people in this group have unique social problems. Their self-esteem is low and their horizons limited, typically because they internalize societal stigma. Moreover, openly acknowled- ging a condition that is socially feared and often despised, whether it is AIDS or mental illness, has very realistic dangers.
In these vignettes the group was strong enough to induce a member to take a chance on self-disclosure. Disclosure of a psychiatric condi- tion is extremely frightening, and legitimately so, especially for some- one seeking or trying to maintain employment. There is much discussion in the group about the pros and cons of being open about one’s mental illness, the conditions under which disclosure is possible or alternatively, indiscreet and clearly counterindicated. Education about the Americans with Disabilities Act (ADA) is an important com- ponent of any intervention for people with disabilities, physical and mental. People are empowered to use this information for their protec- tion, as a barrier to exclusion.
Deinstitutionalization of people with mental disabilities means they are now living in community settings, trying to create a satisfying life. There are many impediments, financial, psychological, and social. Some people must remain living with peers in assisted living facilities or other protective settings. Others return to their families, still others to independent living. And many are able to re-enter the world of so-called normal people, to work, have intimate relationships, and lead productive lives. It has previously been indicated that people with dis- abilities now have a powerful aid in the protections of the ADA—but using these protections necessitates disclosure. Hopefully this will become more possible as the public receives more and more education about mental illness as a disease process that can be treated by med- ications, that does not destroy cognitive capabilities and skills, and that is rarely manifested in violence. Hopefully it will no longer be con- sidered a shame to be hidden from others. The vignettes given here have shown the power of one group to endow some of its members with the strength to disclose an identity that carries a social stigma, and to be accepted on their own merits. In the course of many such disclo- sures, coworkers and members of the general public may learn to abandon media representations of psychosis and to view persons with a stabilized mental illness as not very different from themselves.
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The ultimate aim, of course, is to have the persons with mental illness also internalize that viewpoint.
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