Qualitative Experiences of Family Advocates in Systems of Care Donna M. L. Heretick* and Joseph A. Russell**

*Walden University; **American School of Professional Psychology at Argosy University, Denver [email protected] (Research was funded by a Faculty Research Initiative Grant, Walden U.) Presented at the 120th Annual Convention of the American Psychological Association, Orlando, Florida, August 3, 2012. Abstract Nachsen and Jamieson (2000) found that family members who become advocates for families within systems of care may experience empowerment or frustration. The current study interviewed 18 family advocates who represent a cross-section of both length of time and types of roles in family advocacy. Qualitative analyses revealed several key themes regarding sources of empowerment and disempowerment, risk of burnout, and need for continued support.

Problem and purpose. There is a shift towards increasing the voices of families in our systems of care, including greater emphasis on families as experts for their personal and own family’s care, as peer supports for individual families receiving services, as representatives of family voice on treatment teams, and/or on planning and governance boards (Duchnowski & Kutash, 2007). Some research has found that training families to become advocates brings positive outcomes, including enhanced sense of empowerment (Olin et al., 2010). On the other hand, Nachsen and Jamieson (2000) found that family members who become peer advocates may also experience frustration, rather than empowerment, from limited validation and from barriers to achieving results. The purpose of this study was to explore the lived experiences of family advocates who vary by breadth of activities (from those who work locally and directly with individual families as peers to those who sit on state-level committees for policy advancement), to examine their perceptions of effectiveness and empowerment, as well as disempowerment and challenges, in family advocacy.

The sample. Following IRB approval by Walden University, a purposeful sample of individuals who currently serve in various roles to provide/support family advocacy for families with children receiving services through various systems of care (e.g., mental health, juvenile justice, schools, foster care) was solicited through the Colorado Collaborative Management Program (CMP) of the Dept. of Human Services and the Colorado Federation of Families for Children’s Mental Health. There were 18 family advocates from 8 counties: 9 were individual family advocates and 9 served in supervisor/mixed roles for advocacy activities. The mean number of years as advocates was 5.4 (SD = 5.5; Range = .5 to “15+”). Those in supervisory/mixed roles had significantly more years of experience than those who were FAs (Fisher’s exact test, p = .013).

Procedures. Questions for the semi-structured interviews focused on five main areas: their family advocacy activities; beliefs about qualifications for family advocates; training experiences; lessons learned; and, perceptions of empowerment and effectiveness or disempowerment and challenges as a family advocate. The final area is the focus of this report. Five individuals were interviewed face-to-face, 12 by telephone, and one responded via email. Five were interviewed in small groups (2 and 3 coworkers, respectively) and 12 were interviewed individually. The first author conducted all interviews and provided written summaries to the second author and a third coder. Each coder individually reviewed summaries of responses for question areas, noting key themes and subthemes. The first author assembled the codings and integrated them. The team then reviewed these codings and resolved any inconsistencies.

Definitions of Advocacy Roles

Individual Family Advocate (FA). Individual only works directly with one or more families to help meet the family’s needs and coordinate with services.

Supervisor/Mixed Roles (S/M). A supervisor helps to train, facilitate, and/or coordinate FAs’ activities. Those in mixed roles may provide direct service to families, supervise, and/or serve as representatives on county/state-level decision-making and/or policy-advisement groups for family advocacy.

Results

Effectiveness as Family Advocates. Most (78%) of advocates in each type of roles expressed a belief that family advocacy is effective, and 67% indicated they felt personally effective. Sources of effectiveness were described as related to family characteristics (44%) and to system responses/resources (33%).

Sources of Support and Effectiveness. Most (67%) described coaching, debriefing, and talking with peers and supervisor as sources of social/emotional support. Half noted informational sources (e.g., lists of resources, trainings, participating on boards) as important resources for effectiveness. Smaller numbers described personally seeing families succeed (28%), having access to concrete resources (17%), seeing the family advocacy system grow (11%), and being appreciated by the family (6%) as sources of support and sense of effectiveness.

Sources of Disempowerment/Challenges. Most (90%) of those who work directly with families described families’ responses as a key source of frustration (e.g., family not making progress or relapsing, boundary challenges, anger or suspicion from family). By contrast, 67% of those in S/M roles noted the system of care as the primary source of frustration (e.g., questioning their credibility, siloing of resources, having to depend on others who may not seem to care as much, limits on available concrete resources). Half of respondents talked about their own emotional responses (e.g., feeling overwhelmed, disappointed in self, getting close and saying goodbye). Others (22%) felt they need more ongoing support and training, and three (17%) noted the constant crisis pace (e.g., never get done, always an emergency, continually putting out fires) as challenges.

Summary

Across all roles, these family advocates are devoted and passionate about their work. However, they experience advocacy work as a mixed blessing. They believe in it and its effectiveness and generally see themselves as effective. At the same time, they experience emotional stress from a heavy workload, family client demands, a crisis-based schedule, limited availability of concrete resources, and challenges to their credibility or purpose. Those who work with families directly see the families as the primary locus of both satisfaction and frustrations. Those who also work within the larger system of advocacy see the system as the primary locus of frustrations. All run the risk of burnout and compassion fatigue. Credibility challenges exist both for those who enter as experienced consumers and for those with professional backgrounds. Recommendations All can benefit from stronger communication and action networks for information (ongoing training and development), greater availability of concrete resources to meet family needs, policy development, and socioemotional support. Due to the risk of burnout and compassion fatigue, those working directly with families benefit from ongoing, sensitive, regularly scheduled (not just crisis-based) supervision, which is highly supportive, empowering, and collaborative in nature, and uses a variety of formats (one-on-one sessions, group meetings, and peer support; Umlah, 2006). Particular goals of such mentoring could include development of good personal boundaries, self- awareness, resilience, and additional skills for advocacy (Quinn, 1996).

References Duchnowski, A. J., & Kutash, K., (2007). Family-driven care. Tampa, FL: University of South Florida. Nachshen, J. S., & Jamieson, J. (2000). Advocacy, stress, and quality of life in parents of children with developmental disabilities. Developmental Disabilities Bulletin, 28, 39-55. Olin, S. S., et al. (2010). Impact of empowerment training on the professional work of family peer advocates. Children and Youth Services Review, 32(10), 1426-1429. Quinn, W. H. (1996). Achieving harmony from tension: Contemporary patterns and pitfalls of family advocacy. Journal of Family Social Work, 1(3), 83-98. Umlah, C. A. (2006). Supervision of paraprofessionals in the human service field. Dissertation. University of Manitoba. Retrieved from http://mspace.lib.umanitoba.ca/bitstream/1993/267/1/umlah_v2.pdf