Selections from “Family Advocacy, Support and Education in Children’s Mental Health: Results of a National Survey”
By Kimberly E. Hoagwood, Evelyn Green, Kelly Kelleher, Sonja Schoenwald, Jennifer Rolls-Reutz, John Landsverk, Charles Glisson, Stephen Mayberg, The Research Network on Youth Mental Health

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Since approximately the mid-1980s, when the System of Care (Stroul and Friedman 1986) monograph first outlined principles for improving the coordination of children’s mental health services, the role of organized advocacy and support for families of children with mental health issues has expanded dramatically. This development has signaled acknowledgement of families as important partners in service delivery. Today at least five major national organizations, with hundreds of state and local chapters, exist to support and advocate on behalf of families whose children have mental health needs. Among the organizations that have both national and state or local affiliates are the National Alliance for the Mentally Ill (NAMI); the National Mental Health Association (now called Mental Health America (MHA); the Federation of Families for Children’s Mental Health; Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD); and the Child and Adolescent Bipolar Foundation (CABF). International chapters are beginning to be formed, particularly for families of children with specific disorders, such as ADHD, autism, and bipolar disorders (Hoagwood et al. 2006).

Expansion of family advocacy and support in children’s mental health is coming at a time of increased national momentum among nonprofit policy organizations for improving the active participation of consumers in health care (Institute of Medicine (IOM) 2001). At the same time, federal and state government agencies, spurred in part by the series of Surgeon General’s public health reports (e.g., U.S. Public Health Service (USPHS) 1999, 2000, 2001a, b) are urging greater attention to the use of evidence-based assessment and intervention practices for children and adults with mental health problems. This convergence of policies to encourage attention to the quality of services, growth in family support and advocacy, and international attention to both pediatric health and mental health raises a number of opportunities for considering expanded roles for family organizations. Understanding the current structure and function of these organizations is a first step. Information about the infrastructure and roles of family advocacy, support and education organizations for children’s mental health in the US, however, is nonexistent. Consequently, the Child STEPS project of the MacArthur Foundation Youth Research Network, with funding from the Robert Wood Johnson Foundation, launched a national survey of family organizations providing education, support or advocacy to families of children with mental health needs that would parallel and complement the Clinic System Study (as described by Schoenwald et al. this issue).

Together with the national organizations mentioned above and other advocacy and policy organizations involved in children’s mental health (e.g., Bazelon Center, Kansas Keys, National Wraparound Initiative, National Center for Children in Poverty, Portland’s Research and Training Center on Family Support and Children’s Mental Health), a subgroup of the Clinic Systems Project (CSP) designed a survey to assess the role of family advocacy, support and education organizations (FASEOs) in community-based services in children’s mental health. The Family Advocacy, Support and Education Organizations (FASEO) survey instrument collected information in four areas: (1) the infrastructure and funding sources for FASEOs; (2) the major factors influencing advocacy decisions about children’s mental health; (3) service delivery within FASEOs and factors perceived as related to improved outcomes for children; and (4) the types of working relationships among FASEOs and local mental health clinics. These areas of inquiry parallel the domains of the community-based mental health services infrastructure assessed in the CSP Director’s survey (see Schoenwald and colleagues, this issue), thus providing points of comparison on the fiscal, governance, and operational aspects of mental health organizations and FASEOs serving children and families in the same locales. The data obtained from the FASEOs were thus expected to illuminate the nature of family support efforts and organizations pertinent to children’s mental health and suggest additional, family-based leverage points for the improvement of children’s services potentially relevant to the implementation of evidence-based practices. This paper describes the sample, sample selection, methods and findings from this national survey, the first to our knowledge, of FASEOs.

Methods
The sample consisted of 226 directors of FASEO that explicitly promoted children’s mental health services. The executive directors of the 226 FASEOs responded to a 1-h semi-structured telephone interview. Semi-structured interviews were conducted by staff from one of the Network sites (Children’s Hospital of San Diego (J. Landsverk, PI) from November 2005 to July 2006. The survey instrument included items modified from the CSP provider survey (Schoenwald, et al. this issue), such as infrastructure of the organization (e.g., affiliation status, structure, size), and sources of funding. Based on feedback from the advisory board, the survey included items specific to family advocacy, support and education, including techniques employed, how decisions are made about advocacy, types of issues that are most salient for advocacy, and factors that influence advocacy. Also included were questions related to types of direct services offered by the FASEOs, roles of family members in mental health services, and factors related to improved outcomes. Finally because the types of working alliances that existed with local mental health providers were of interest, questions were included about the types of formal and informal professional relationships with the largest local mental health service providers in their community

Results
Infrastructure
Three categories of information were collected about the infrastructure support within FASEOs: information related to affiliation status (i.e., whether the FASEO was or was not affiliated with a national organization); size of the organization’s membership; and base of funding support.

Affiliation
About 76% of the FASEOs were affiliated with a national advocacy group (NAMI, FFCMH, NMHA—now Mental Health America, or CHADD). The majority of those with a national affiliation represented NAMI chapters. About 23% of FASEOs were independent—that is, they were not affiliated with any national organization.

Size
The size of the FASEO varied widely in terms of number of active members and number of persons served (i.e., population base directors reported their organization served). The mean number of active members was 193, with a range of 1 to 3, 082 members. About 13% of the FASEOs had 500 or more members. About 50% had 60 or fewer members and 27% did not have any members. The number of persons served by the FASEOs also varied. The mean number was 20,998 members, with a range of 1–1.8 million. About 33% served 100–499 members and 32% served more than 2,000 persons. About 50% served fewer than 500 persons.

Funding Base
The majority of directors of FASEOs (78%) reported that their organizations are supported through individual donations. About 48% of the directors reported that their organization receives at least half of their revenue through private funding sources (individual and business donations, charitable organizations, and private foundations). Approximately one third receive support through corporate sources, private foundations, or charitable organizations (37, 32, and 30% respectively). In contrast to the mental health service organizations, only 16% receive support through fee for service mechanisms. Among the sources of public funding directors were asked to identify specific sectors that contributed to FASEOs funding base (see Fig. 3). Not surprisingly, the largest contributory source of public funding is from mental health (35%). The other sectors (i.e., education, child welfare, health, mental retardation or developmental disabilities) contribute between 5% and 10% to the total funding support for the organizations.

Advocacy Decision-making
Because of theory and mixed findings from the diffusion of innovation literature about the impact of public education, outreach, and passive dissemination strategies (e.g., of print material) on consumer awareness and behavior (Bero et al. 1998; Greenhalgh et al. 2004; IOM 2002), four areas of advocacy decision-making were selected for specific focus. These were types of dissemination/communication techniques employed; types of issues identified as salient to FASEOs; how advocacy decisions are made; and factors that influence advocacy decisions. Among the advocacy techniques employed, 95% of respondents indicated that they use print materials; 79% used outreach; 73% used workshops; and 71% used the web. Only 38% used a listserv. Thus the FASEOs use a variety of mechanisms to reach their membership, including both grass root approaches and electronic means of information transmission.

Directors indicated that the two top issues for which they advocate are public awareness of mental health and family involvement (90 and 89% respectively). Screening and assessment issues, evidence-based practices, and cultural competence issues were endorsed by slightly over half of the directors (56% each). Advocacy around specific clinical practices, which in general are closely aligned with evidence-based approaches, were endorsed by only 26% of the directors. Thus the advocacy issues that FASEO directors see as most important to their organization involve the public face of mental health and the role of family members within it.

Services Provided
Directors reported the types of services provided by their organizations. The majority (93%) indicated that they provide information and referrals to family members. This appears to be the primary function of the FASEO. In addition, however, 85% indicated that they provide support groups and 81% provide training or technical assistance, 76% newsletters, 75% website services, and 69% public advocacy and legislative or policy advocacy. Thus the range of services is broad and is primarily related to information dissemination, direct family support, and policy advocacy.

Roles for Families
Directors identified the most important roles for family members within their local mental health community. The overwhelming majority (97%) identified educating other families as the most important role for families. Advocating for mental health services and peer-to-peer support was also identified as key roles for families (94 and 91%). Leading support groups, training other families, and being a direct liaison with mental health providers were also identified as key roles by 88, 88 and 81% of the directors of the FASEOs. This suggests that community leaders of family advocacy, support and education organizations see families more able to play a much more active role in service delivery than is typically afforded families by provider organizations.

Improving Mental Health Outcome
Directors were asked to rate on a scale of 1 (unimportant) to 7 (important) mental health services that they believe are most important for improving children’s mental health outcomes. The issues that received the highest rating (6.8) were availability of services, family’s relationship with the clinical staff (6.8) and appropriate diagnostic assessment (6.6). Several other issues received high ratings (of 6.5) as well, including respect for families, inclusion of the family, therapist training, and working with other agencies. These findings suggest that the kinds of factors that from a family perspective are most closely related to improved outcomes include service availability, relationships with providers that are respectful, and high quality services, including assessments, well trained clinicians, and strong linkages to other agencies.

Working Relationships
About 24% of FASEO directors reported that their organization had a governance role within their local mental health clinic; 26% reported involvement in acquisition or allocation of resources; 68% reported representation of their FASEO at clinic meetings and of those, 77% indicated that their representation resulted in noticeable changes. Forty-seven percent of the FASEO directors reported that their local clinic shared information about child or family outcomes; and 43% indicated formal working relationships by clinic staff with their FASEO. We then grouped the responses into three categories of working relationships: close, moderate, or no working relationship. We found that 27% of respondents (N = 60) reported no working relationship whatsoever with their local clinics (i.e., no affirmative response to any of these items); 54% (N = 122) reported some degree of connection (between one and three affirmative responses); and 19% (N = 43) reported a close working relationship (i.e., four or five affirmative responses).

Discussion
In summary, the survey findings from our study describe a network of local grassroots organizations across the country that are comprised of relatively small groups with a fiscally fragile funding base, yet a network with strong personal commitments to educating and strengthening family involvement in services and disseminating information about mental health services broadly. Contrary to expectations, this survey found that directors of family-based organizations believe that improvement of mental health services requires attention to the front end processes of screening and appropriate diagnostic assessments as well as use of effective clinical practices, in addition to service availability and quality of the therapeutic relationship. This finding holds promise for the alignment of consumer advocacy interests, and of consumer collaboration, in the development and larger-scale implementation of evidence-based engagement, assessment, and intervention practices. The extent to which connectedness among FASEOs and their local providers will improve services in general, and use of evidence-based practices specifically, is currently unknown. However the existence of a widespread, locally based network of family advocacy, support and education organizations with a strong commitment to change, if coupled with well-established information dissemination strategies, and an interest in improving delivery of effective services for children, bodes well for creating more substantive and diversified roles for families and FASEOs in the quest to improve children’s mental health care.

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Recent Comments

Absolutely critical topic -- Can't underscore enough the importance of family involvement and advocacy at the service and policy levels to bolster children's mental health. Really looking forward to the call. (5/28/08)

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