Self-Help and Serious Mental Illness

Edward L. Knight, PhD, CPRP

Disclosures
In This Article

Evidence of Benefit

Six 2-point-in-time studies have reported positive results[2,3,4,5,6,7,8] (no negative studies have been published). These studies are the only available 2-point-in-time studies. The several 1-point-in-time studies are not reviewed here because they show less about the outcomes of self-help.

Among 277 attendees at Double Trouble in Recovery (DTR),[2] 240 reported receiving medications for treatment during the preceding year. This was not a random assignment study, but rather was a random selection from attendees of already existing groups, with no control group. However, the investigators used statistical methods to create a control group from members with very low attendance. The medications included: conventional antipsychotics (22%); atypical antipsychotics (45%); selective serotonin reuptake inhibitors (35%); tricyclic antidepressants (5%); "newer" antidepressants (21%); anti-anxiety medications (15%); antimanic or anticonvulsive medications (34%); and miscellaneous palliative medications (43%). The total is more than 100% because consumers were prescribed more than 1 medication. Diagnoses included: schizophrenia (48%); major depression (23%); bipolar disorder (22%); other (11%); unknown (20%). Of the 240 participants who received a prescription, 79% were medication compliant, which resulted in lower symptoms at follow-up and fewer inpatient episodes. Only 28% of the group used drugs or alcohol, resulting in somewhat less medication compliance, though sobriety was not found to be associated with compliance. Other dual-focus groups with similar formats are likely to show similar results.

In a 1988 study of manic depressive and depressive association (MDDA) support groups with a nonrandom total of 188, participants reported better coping with illness, more acceptance of illness, and improved medication compliance after attending.[3] Hospitalization dropped from 82% to 33%. Another study of 226 consumers attending MDDA groups[4] found that attendees were 6.8 times more likely to attend subsequent meetings if accompanied by another member the first time. This study measured only attendance, not outcomes.

In 1988, Galanter and associates[5,6] studied the effectiveness of Recovery, Inc., a support group that emphasized standardized ways of coping developed by Dr. Abraham Low in 1935 for people with psychiatric problems. Again, this was not a random assignment study. A total of 201 group leaders were randomly selected from the 211 administrative districts of Recovery, Inc. Each leader was asked to select a new member to participate in the study. In all, 155 participants fit the criteria of short-term or new members. Thus, 356 members (including the 201 group leaders) were studied and were compared with a non-patient community control group of 195. The study found that psychiatric symptoms and concomitant psychiatric treatment both declined after subjects had joined the group. Scores for neurotic distress after joining were considerably lower than those reported for the period before joining. Scores for psychological well-being of longstanding Recovery, Inc. members were not different from those of community control subjects, and fewer long-term members than recent members were being treated with psychotropic medications and psychotherapy. The investigators cautiously concluded that peer-led self-help groups are a valuable adjunct to psychiatric treatment.

GROW is a community-based organization in Australia comprising small self-help groups for people with depression, anxiety, or other mental distress. The GROW model also has been used in Illinois. In 1990, Kennedy and colleagues[7] matched 31 GROW members who had been hospitalized within the previous 32 months in an Illinois state psychiatric facility (people with serious and persistent symptomatology leading to frequent and exacerbated crises) with 31 recently hospitalized patients who were not GROW members. GROW members had required fewer hospitalizations than matches post GROW. During the 32 months before joining , GROW members had been hospitalized for 179 days; the number was reduced to 49 days of hospitalization in the 32 months after joining GROW,. During the same periods of time, the matched group had been hospitalized a total of 174 days and 123 days . This study is significant because it represents patients with severe illness, but the number of subjects is very small. However, even though the differences in the number of hospitalization days pre-GROW was not significantly different in the 2 groups, differences in hospitalizations post-GROW did reach statistical significance (t= 1.74; p<.05).

In 1982, Edmunson and others[8] randomly assigned 80 clients to a control group or peer-led social networks that extended natural supports. In the only published report of this study, no methodology or statistical analysis is described. The networks were coordinated by paid client peers and met once a week for socialization and/or problem-focused coping. Consumer Area Managers ran these groups after being trained in problem-solving techniques. The project, called Community Network Development (CND), focused on providing both support and problem-focused coping and problem solving. At the end of 10 months, rehospitalization rates among CND members were half those of controls (17.5 vs 35). In addition, the average number of inpatient days for CND consumers (7 days) was less than one third that of the control group (24.6 days). Thus, CND members were hospitalized half as frequently and for less than one third the amount of time. Moreover, the CND project increased social and instrumental peer support available to members, especially for situations in which clients needed help with such things as emergency housing, transportation, and moving, among other things.

Colorado Health Networks (CHN) created more than 70 self-help groups run by consumers and 4 consumer-run drop-in centers as part of its implementation of managed care. In addition to utilization management and concurrent reviews, CHN implemented the self-help initiative and trained community support staff using the Boston University Psychiatric Rehabilitation Technology. Forquer and Knight[9] report studies conducted under the auspices of a National Institute of Mental Health grant to the managed care capitation program in Colorado for the CHN area. It was found that the number of persons with severe mental illness being served by CHN had increased significantly. At the same time, substance abuse, suicide, and hospitalization rates had dropped significantly, and social contacts and daily activities had risen significantly, most likely as a result of participation in self-help activities; however, the study does not separate these interventions from utilization management or concurrent review, and thus the outcomes cannot be attributed to self-help groups with certainty.

Summary

The findings from research on self-help groups for people with serious mental illness consistently show: (1) reduced symptoms and substance abuse over time[4,5,6,7,9,10,11,12]; (2) concomitant reductions in crises, hospitalizations, and use of services[5,6,7,12,13,14]; (3) improved social competence and social networks[4,9,10,13,15]; and (4) increased healthy behaviors and perceptions of well-being.[3,7,10,12,14,15]

Healthy behaviors and perceptions of well-being include: medication compliance; acceptance of illness; better coping and management of illness; improved quality of life and sense of well-being; greater sense of security and self-esteem; acceptance of problems without blame; creation of one's own meaningful structure; and changes in what mental healthcare consumers wanted from time spent with family.

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