Experiencing Community: Perspectives of Individuals Diagnosed as Having Serious Mental Illness

This study used a grounded theory approach to explore community integration. This approach involved inductive, iterative examination of qualitative data to generate a theoretical framework for understanding social-psychological phenomena (34,35). We used a maximally variant sampling frame and an open-ended interview design to capture the broadest range of responses.

The data are part of a longitudinal study funded by the National Institute of Mental Health that examines the impact of recovery-oriented system changes in Los Angeles County public mental health clinics. The parent study includes individuals (N=477) treated in intensive, outpatient therapy, similar to assertive community treatment, by case management teams and individuals matched for illness severity who are treated in usual, clinic-based, outpatient mental health care (one to four appointments per month).

Case managers of intensive, outpatient therapy have up to four treatment contacts per client per week and a low caseload (20 clients). Analyses using administrative data have shown that clients in intensive treatment receive about eight service hours per month compared with 2.5 service hours per month for clients in usual care. Participants completed a battery of instruments (36,37) upon enrollment in the parent study.

We derived our sample (N=30) from individuals enrolled at two of the six participating clinics (called by the pseudonym “Oak Ridge Mental Health Clinic” in this article). As a result of the matched sampling strategy, clients of both the intensive and the usual care programs demonstrated functional impairment at baseline, for example, Global Assessment of Functioning score <55 and recent homelessness or hospitalization. To capture an array of community experiences, we enrolled individuals from intensive and usual care treatment teams with varying race-ethnicity, primary diagnosis, and gender. During the recruitment phase, the team reviewed enrollment in an iterative process and adjusted sampling to maximize variation of the study groups and both treatment teams. Study team members remained blind to participants’ data from the parent study.

In all, we contacted 40 individuals and arranged appointments with 35. Between January and December 2010, we completed quantitative assessments with 33 and quantitative and qualitative assessments with 30; quantitative findings will be reported elsewhere. After the study was described, participants provided written informed consent. Sampling continued until preliminary data review suggested thematic saturation had been reached (38). No participant was lost to the study after consenting. The study was reviewed and approved by the institutional review board at the University of California, Los Angeles, and the Los Angeles County Department of Mental Health Human Subjects Committee.

Fourteen men and 16 women participated in interviews. Participants ranged in age from 26 to 53 years, with a mean±SD age of 38±8 years. Thirteen (43%) participants were African American, four (13%) were Caucasian, 12 (40%) were Hispanic, and one was Native American. Fourteen were enrolled in usual care, and 16 were enrolled in intensive treatment. Primary chart diagnoses included bipolar disorder (N=12), depression (N=4), and psychotic disorders (N=13). One participant had a severe anxiety disorder. Participants’ mean scores for items on the Behavior and Symptom Identification Scale (36) (1.6±.9 out of 4) and the Satisfaction With Life Scale (37) (1.6±.8 out of 4) were in the expected range for community-based samples of persons with serious mental illness (39–41) and were similar for participants in intensive treatment and usual care.

The semistructured interview guide is described in a box on this page. All interviews were conducted in English. Interviews were transcribed and checked against the audio recording by two authors (EB and SG). Two authors (EB and SG) conducted an inclusive tally of all communities named by participants as important in the past or present, even if participants described negative or ambivalent feelings about experiences in these communities, and compared and reconciled results. Then, using thematic data analysis, we looked for patterns in the way participants described community experiences. Two authors (EB and SG) analyzed transcripts independently to generate a list of preliminary themes and the narrative examples for each. These results were compared and discussed, and themes were refined. Next, themes and examples were reviewed with other members of the research team (JSB, BB, and RP) and refined further. Then two authors (EB and SG) reviewed themes against the entire qualitative data set to search for disconfirming cases. The list of themes and narrative examples were reviewed with the study team (JTB, BB, and RP) and finalized. Two authors (EB and SG) then reviewed the entire data set to search for differences in the salience of these experiences across clients with different characteristics, such as treatment group, race-ethnicity, and gender.

Participants most commonly described their communities as places where they receive help. When interviewers asked participants why they felt a sense of community from a given place or group, the most common response was that it was there for them and could be counted upon, particularly in times of vulnerability. As one participant said about her family, “When I needed strength, they were there to pick me up and to give me good advice.”

Many participants described receiving help as a key characteristic of communities found in mental health treatment settings. Asked why her mental health clinic community was important to her, one participant said, “Oh, [Oak Ridge Mental Health], they’re amazing, they have pretty much everything you need. You just have to interact with the programs and everything. Just ‘cause the office is closed doesn’t mean that you can’t get help, and to me that’s beyond important, because there’s several times I’ve had issues come up and I’ve called up my worker and she’s called me back. . . . They’re my backbone when mine isn’t working, so it’s very important.” Another participant described the importance of his 12-step community, saying he had stayed clean for months, “but my life still sucked . . . so I wanted to try to work the steps and see if my life would improve—and it has, slowly, but it’s definitely better than without it.”

Several participants described these experiences of receiving help also as an opportunity to identify with others. As one said, “I do feel a sense of community with [Oak Ridge Mental Health]. When I go to a group, I know that we are all battling a common monster. Everyone has their own demon, their own monster, but, hey, we’re all basically on the same page. We’re all seeking help and I feel comfortable.” As another participant said about his residential treatment program, “It helped me to really understand more about what I was doing to myself, to get me to stop continuing down that road starting to use again, and then that made me want to stay sober. . . . Those meetings help. And all the support you get from all the people there, it’s definitely a boost.”

Some participants indicated that these experiences in mental health treatment settings or with others with mental illness influenced what they seek and value in other communities. One participant described a group of friends as an important community because, “we all have our backgrounds and we all struggle with, you know, emotional problems or whatever and so that kind of tightens us up. So it's more of like—it's also a support group.” One participant described his church as an important community because of the help it provides in managing his mental illness. The church is “the foundation of my existence,” he said. “I mean, when I'm in a crisis, I just go and I guess, you know, when I'm feeling a little down, I just go and pray a little and you know, that helps me to keep my sanity.”

Several other participants described their mental health community as a gateway to other communities. One participant said his clinic team “gives you a place,” to find support. He appreciates the team’s encouragement of activity and social integration: “I mean, they go bowling every other week, get you out . . . go to picnics . . . different things. And that's just important because a lot of consumers, they just don't have no social network, they don't have no places to go. And like when I started going back to church, they said, ‘Oh, that's good.’ They encouraged me to keep doing what I was doing.” A minority of participants described receiving help from communities not oriented around mental health, such as communities at work or school and family.

Many participants described community as a place where they confront and manage risks to themselves and others. Most commonly, participants described their symptoms as posing risks in community contexts. Many worry that they will feel anxious or overwhelmed; they also worry that their symptoms will become threatening or irritating to others. Participants constructed their communities in ways that allow them to minimize these risks. As one said, “I dodge people. When they start calling me sometimes, and I don’t know why, it might be part of what I’m dealing with in terms of depression or whatever, but I just don’t want to deal with them sometimes.”

Most participants described mainstream, public settings as risky. Many reported a pervasive need to limit the amount of contact there. For instance, one participant worries about the impact of her symptoms on those she sees in public. She restricts her contact with the public “because my moods go up and down. . . . Sometimes I'm not that pleasant. That doesn't make me feel like I'm part of something nice. . . . Sometimes I think I'm like a nightmare customer, so sometimes I feel bad . . . After I'm moody, I feel really bad about it.” Another said, “I have a deadly temper. It can get real hostile, real fast . . . so I try to stay away. I don’t visit malls. If I do, I go in, grab what I’ve got to grab, and get back out.” A third shops at 5 a.m. to avoid being around too many other people.

Far from seeking to expand their community experiences, many participants prefer to keep to themselves and to familiar locations. Several participants described daily activities similar to those reported by one client: “Other than [group meetings], I’m at home. I don’t [interact with the public]. I just, if I’m going to the store, I get what I’m going there for; if I sit at a restaurant I sit there and eat and leave.” Even those participants who value positive experiences in mainstream communities did not describe a desire to be more integrated there.

Nonetheless, a few participants expressed a desire to strengthen ties to mainstream communities in order to overcome the disabilities caused by mental illness. These participants see mainstream community integration as a challenge or a risk, but one with high significance. For example, one participant described his city as an important community “because it's given me the opportunity to potentially go back to work. By getting some schooling in right now, I'm trying to get my life adjusted and figure out if I'm going to be well enough to go back to work.”

Almost all participants described painful experiences of stigma that led them to seek and value communities where they can minimize the potential for rejection. One participant said, “I feel like everybody is looking down on me, instead of looking at me like a person . . . like I’m considered an outcast.” Another said, “I’ve known people that say, ‘Oh, you go to [Oak Ridge]? Oh, wow, like stay away from you.’ And even people around [Oak Ridge] that I met . . . they’re like, ‘Are you part of the crazy crowd?’”

Participants’ most frequent experiences of stigma were not from strangers but from family members and intimates. These episodes most commonly involved a loved one who is insensitive to the experience of living with a mental illness. Describing his family, one participant said, “They're the worst people. . . . They're very nice people, they're very lovely people. But they just don't understand me. . . . They just think, ‘Just drink a tea and go to sleep.’” Another participant described a recent depression: “My roommate . . . wasn't there for me. . . . I was crying; she knew I'd been depressed . . . and they had to call the paramedics. . . . I guess since she's not mentally ill, she doesn't really understand bipolar.” Another described family members who attribute all of his actions to mental illness. He said, “They were more sensitive to everything I was doing. Like, if I were to keep dropping a bottle of water, they would think it would have something to do with my illness, [rather] than me being clumsy. So if I do anything, it would be kinda like the illness, you know what I mean? Even if I got into an argument, they’ll say it’s my illness.”

These experiences of feeling misunderstood or defined by their mental illness strongly shaped participants’ expectations and preferences for community. Most commonly, participants avoided situations that they feared would elicit stigmatizing responses from others. One participant felt unwelcome in public settings because of his diagnosis: “For some reason, I think that they can see a sign on my forehead saying I have bipolar disorder.” One participant lamented that those with whom he interacts do not understand his illness. As he said, “If I was in a wheelchair, it’s obvious what’s wrong with that person. . . . I come across as being a very normal person. I’m articulate, I talk, and I seem very personable. So they don’t understand that I have a disorder.” This experience of being misunderstood had left him with few friends and little desire to make more. One woman who values her church community does not socialize with those she meets at church, explaining, “I’m kind of shy about it now because of my mental illness. I’m kind of, like, not embarrassed, but just don’t want them to know that I have the mental illness. I’m pretty sure they know; they’re not going to judge me. But . . . I would be very, very heartbroken if they would find out and somebody would make a remark about it, then I’d rather not.”

Commonly, participants described communities as enclaves (6) they construct to avoid rejection. They described honing communities in ways that allow them to avoid stigma. For example, one participant said, “I would never disclose it at a job interview or a place of employment, unless it was in the field and it would benefit me that they know.” One subject said that when some people hear he has been diagnosed as having a mental illness, “Next thing I know, I don’t hear from them anymore. . . . For me, personally, it’s better for me. I don’t need people like that in my life.” Another keeps to familiar locales and reminds herself that some people are simply judgmental: “Sometimes I think I’m better off not to go there because a lot of people, when they hear somebody is having mental illness, they just think he’s totally a lunatic and there’s something wrong with you.” For many, the protective enclave is composed of others who understand what it is like to live with a mental illness. As one participant said, “Only somebody who goes through that knows what you're feeling.”

Finally, several participants described a sense of community in situations that provide opportunities to respond generatively to past experiences. Participants described community as a place where they can give back. As one participant said, a church where he volunteers is important “because I’ve been at a point where I didn’t have food or stuff like that. If you’re at a point where you’re doing better than you were, then you need to give back; so that’s what I’m trying to do.” Another explained that, “I take friendship very seriously, partially because of what my background is. I've never had any reason to trust my family or relatives or anyone, so I take care of my friends.”

Many participants particularly value communities that allow them to put a painful past to use. For instance, one participant described the importance of his extensive online mental health community. He said this community is “a really big one for me . . . because I feel like my purpose being bipolar is to help people, not only through writing books and blogs and everything, but reaching out to people. And, you know, I have, like, for example, on Twitter I have a lot of mental health organizations . . . and I also have a lot of mental health consumers all over the world that I communicate with every day. . . . So that's very important to me in keeping my sanity because I feel like I want to give back. . . . It makes me feel like if I'm helping somebody. It makes me feel like a better person.”

Like other participants quoted above, this participant’s experience in community shapes his identity and supports his esteem. In a similar way, another participant defines her identity in contrast to a mainstream community, where she feels she cannot productively contribute. She said she does not feel as though she belongs in the mainstream community “because I don’t feel productive. I don’t feel like I have something in common because I’m not working, I’m bipolar, I don’t have money. So I don’t feel productive. I don’t feel like I have nothing to offer.”