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Appendix C

Sources and Qualifications of Data for Mental Health Consumer Organizations

The purposes of this technical appendix are to (1) describe the survey procedures used in the CMHS Survey and (2) describe the construction of the universe of consumer organizations from (1) above, which forms the basis for the analyses in this chapter.

The CMHS Survey

This was CMHS's first national survey of the mental health self-help sector. Results from the survey are reported elsewhere (Goldstrom et al., in press). In line with the commitment to include consumers and families in each stage of the survey research process—conceptualization, implementation, analysis, and reporting—more than 30 self-identified consumers and family members were employed as consultants for the survey to collaborate in the development of the survey methodology, design and review survey instruments, conduct the pretest, develop the universe, train telephone interviewers, and carry out data analysis. Data were collected under contract to CMHS by TNS, Horsham, Pennsylvania, which subcontracted to the National Mental Health Consumers' Self-Help Clearinghouse, Philadelphia, Pennsylvania, and Jean Campbell, Ph.D., Missouri Institute of Mental Health, University of Missouri, St. Louis, Missouri.

It was first necessary to define the mental health self-help sector universe. The initial step in the development of the universe was to determine the scope of organizational entities to be included. Determinations had to be made about the following:

• Whether to include entities that had any involvement of professional mental health providers


• Whether to include entities addressing substance use disorders


• Whether to focus solely on entities serving primary consumers or to include entities serving family members


• Whether to include entities serving only adult mental health consumers or to include entities that addressed the needs of children and adolescents


• Whether to include entities addressing any mental health condition, problem, or life situation, or to narrow the focus to entities addressing a more limited range of mental health problems

The following criteria were established:

• Entities organized and led by psychiatrists, therapists, and religious and spiritual leaders were excluded unless these people participated as peers and not in their professional roles.


• Based upon the above criterion, entities associated with lodges and clubhouses were excluded.


• Entities that addressed only mental health or mental health and substance use (co-occurring) conditions, problems, or life situations were included. Those that addressed substance use without addressing mental health conditions were excluded.


• Entities run by and for mental health consumers and/or their families were included.


• Entities addressing the needs of both adult mental health consumers and families of children and adolescents with serious emotional disturbances were included.


• Entities addressing life crises such as bereavement, transitions, victimization, family problems (Riessman & Carroll, 1995), addictions, anger management, developmental disabilities, and Alzheimer's disease were excluded.

In the most general sense, it is helpful to think of the universe as the groups, organizations, and services most likely to have as participants the 5.4 percent of adults with serious mental illnesses (U.S. Department of Health and Human Services, 1999b), their families, and the families of the 9 to 13 percent of children and youth with serious emotional disturbances (U.S. Department of Health and Human Services, 1998).

Meaningful classification of the entities within the universe was also fraught with difficulties; however, there is relative consistency in the literature about the existence of and definitions for a number of types—mutual support groups, self-help organizations, and consumer-operated services. For the purpose of the initial analysis, we selected these three types and operationally defined them in the broadest sense possible. Groups, organizations, and services were included in the universe if the people within them, and/or their family members, self-identified as having received mental health services and met the operational definitions below.

• Mental health mutual support group: A group of people who get together regularly on the basis of a common experience or goal to help or support one another. Membership in a group must be voluntary and free (provided at no charge to the consumer). Groups organized and led by psychiatrists and therapists do not qualify unless these people are there as group members and not in their professional roles. The primary purpose of the group is to attend mutual support group meetings.


• Mental health self-help organization: An organization run by and for consumers and/or family members, which undertakes activities to educate them or their community about mental health issues and/or engages in or undertakes political or legal advocacy and/or provides services to consumers or family members. Some mental health self-help organizations sponsor and/or support mutual support groups.


• Mental health consumer-operated service: A program, business, or service controlled and operated by people who have received mental health services. With limited exceptions, staff also consists of people who have received mental health services.

The CMHS Survey was carried out in three phases: universe frame development, telephone screening, and a telephone survey.

Frame Development. Because the number of groups, organizations, and services was unknown, but was known to be too large to conduct a national census, a limited set of geographical areas was chosen. These geographical areas were the same as those covered by the National Comorbidity Survey, consisting of 172 counties in 34 States selected by the Survey Research Center at the University of Michigan with probability proportional to size (Kessler, 1994). Each of these counties was scoured for all potentially relevant groups, organizations, and services using key informants, existing lists from self-help clearinghouses, local public and private mental health agencies, hospitals, social service agencies, United Ways, and mental health associations; new lists were developed through Internet searches, local newspapers, and libraries. Snowball sampling (asking each contact for referrals to other groups, organizations, and services) was conducted. Contact information was obtained for 6,496 groups, organizations, and services. The first of several attempts to remove duplicates, out-of-scope, and nonexistent entities was undertaken, leaving a total of 3,403 eligible for telephone screening.

Telephone Screening. Of the 3,403 groups, organizations, and services, 2,128 were screened by telephone. Among the 1, 275 that were not screened, approximately 13.2 percent (n = 168) were refusals. The majority of those remaining (77.8 percent) could not be contacted after up to 20 attempts for such reasons as no answers, answering machines, and busy signals. During screening, snowballing was again conducted. After screening, 376 were found to be duplicates. Based on a specific set of criteria, each of the remaining 1,752 was classified as either a mental health mutual support group, self-help organization, or consumer-operated service; however, 431 did not fit the eligibility criteria for the main interview and were removed from consideration. It was finally determined that 1,321 respondent entities were eligible for the main interview.

Main Telephone Interview. Each of the 1,321 in-scope respondent entities received a letter explaining the purpose of the survey prior to telephone contact. The letter also contained a toll-free telephone number for respondents to call at any time, including nights and weekends, to conduct the interview. Computer assisted telephone interviews were conducted using slightly different versions for mental health mutual support groups, self-help organizations, and consumer-operated services. The structured interview instrument was constructed by adapting Maton's work (1993), which identified variables for self-help group level analyses. Data were collected on more than 120 variables, including but not limited to questions about the history of the group, organization, or service; its governance; funding sources; demographic characteristics of participants; and activities undertaken. Of the 1,321 identified as in-scope, 954 main interviews were completed and 367 either could not be recontacted or declined to take part in the main interview. Of the 954 completed interviews, 27 were found to be duplicates, resulting in a final sample of 927, consisting of 390 mental health mutual support groups, 413 mental health self-help organizations, and 124 consumer-operated services.

Weighting. Following cleaning and review of the final data, a nonresponse weight was calculated by region (Northeast, South, Midwest, West) and type (mutual support group, self-help organization, consumer-operated service) to produce estimated totals for the 172 counties sampled. Sampled counties were then combined into geographic clusters (Primary Sampling Units) and weighted to represent the entire United States using stage one weights originally developed for the National Comorbidity Survey.

Consumer Organizations

Table C1 provides a description of how the consumer organization category was derived from the CMHS Survey database.

As stated above, the CMHS Survey universe is composed of mutual support groups; mental health self-help organizations, and consumer-operated services. For the present analyses, the following were eliminated from the database: mutual support groups, because they exist solely for the purpose of having support meetings and are not organizations per se; and organizations run by and for families.

The CMHS Survey database contains responses from 124 consumer-operated services and 413 self-help organizations. Possible responses to the survey question about who decides how the money is spent were as follows: (1) agreement of all or majority of staff; (2) a committee of staff members; (3) a single staff member, such as an executive director or financial officer; (4) the group or organization you are part of or affiliated with; and (5) a governing board or board of directors.

Respondents were considered to be consumer organizations if decisions about spending money were the following: (3) above, if this person identifies as a mental health consumer; and/or (5) above, if the board is made up of 51 percent or more of mental health consumers. Respondents who reported that a single nonconsumer staff member made decisions, or a board that was not at least 51 percent consumers, were excluded.

There were 124 consumer-operated services initially identified in the CMHS Survey. Because they were initially identified as such, if we did not know the composition of the board, or whether the single participant was a consumer, we considered them in-scope for the purposes of this chapter. Further, if the consumer-operated service was run without a budget, it was considered in-scope. Only eight of the respondents reporting they were consumer-operated services did not meet the consumer organization criteria, leading us to believe that our original definition of consumer-operated services maps closely with the more stringent criteria adopted for the present definition. A total of 116 consumer-operated services (93.5 percent) were included in the consumer organization category.

There were 413 self-help organizations initially identified in the CMHS Survey. In the database, self-help organizations were classified by whether they were operated by consumers, operated by families, or operated by both consumers and families. For the present chapter, self-help organizations run by and for families (n = 84) were excluded, leaving 329 self-help organizations. As was the case with the consumer-operated services, respondents identified as consumer self-help organizations that did not know the composition of the board, or whether the single participant was a consumer, were considered in-scope. Further, if a consumer self-help organization operated without a budget, it was considered in-scope. A total of 53 (74.7 percent) of the 71 consumer self-help organizations met the criteria to be consumer organizations. Of the 258 consumer and family self-help organizations, 54 (20.9 percent) met the consumer organizations criteria. For the present analyses, then, 107 self-help organizations fit the criteria as consumer organizations.

The new category, consumer organizations, is made up of the 116 consumer-operated services and 107 self-help organizations from the CMHS Survey. Together, these 223 represent businesses, services, and self-help organizations in which decisions about money are controlled by mental health consumers.

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