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Parent Advocates in Children’s Mental Health: Program Implementation Processes and Considerations

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Administration and Policy in Mental Health and Mental Health Services Research Aims and scope Submit manuscript

Abstract

Children’s mental health service systems are increasingly utilizing peer support services to support families experiencing serious child mental illness. The literature provides few detailed accounts of such peer-based approaches. This study qualitatively examined the approaches and processes of “parent advocate” programs implemented in two Ohio counties for children served through publicly funded mental health services. Descriptions of each county’s program, the background and roles of parent advocates, reasons families decline advocate services, and challenges to advocates’ work with families are provided. Implications for the field in developing clear and effective administrative and practice structures for peer support services are discussed.

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Acknowledgments

The authors would like to thank the National Alliance on Mental Illness (NAMI) Ohio and the parent advocates for their support and contributions to this research. Funding for this research was provided by the Ohio Department of Mental Health.

Author information

Authors and Affiliations

  1. College of Social Work, The Ohio State University, 1947 College Road, Columbus, OH, 43210, USA

    Tamara S. Davis

  2. Human and Community Resource Development and OSU Extension, Center for Family Research, The Ohio State University, Columbus, OH, USA

    Scott D. Scheer

  3. Human Development and Family Science, Center for Family Research, The Ohio State University, Columbus, OH, USA

    Stephen M. Gavazzi

  4. Center for Family Research, The Ohio State University, Columbus, OH, USA

    Reena Uppal

Authors
  1. Tamara S. Davis
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  2. Scott D. Scheer
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  3. Stephen M. Gavazzi
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  4. Reena Uppal
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Corresponding author

Correspondence to Tamara S. Davis.

Appendices

Appendix A: Focus Group Questions

  1. 1.

    How did you first get involved in parent advocacy?

  2. 2.

    What specific model or models of parent advocacy are used in your county?

  3. 3.

    If you had to describe parent advocacy in terms of three specific levels of intensity—low, medium, and high intensity—how would you describe your levels of involvement and the kinds of advocacy activities that occur at each level?

  4. 4.

    Why, in your opinion, do some families decline parent advocacy services when offered?

  5. 5.

    For families that do accept advocacy services, describe their range of responsiveness and willingness to participate in advocacy services. (Alternate question: What are some differences between families who want a lot of participation with advocate services compared to those who want to participate only a little with advocate services?)

  6. 6.

    What presents the biggest challenges to you in serving as a parent advocate?

  7. 7.

    What changes, if any, are needed to better support your ability to be an effective advocate?

Appendix B: Parent Advocate Interview Question Guide

Advocate Experience and Training

  1. 1.

    For how many years have you been advocating for families with children who have mental illness? (Overall/In specific county)

  2. 2.

    How did you become affiliated with NAMI/PAC (Parent Advocacy Connection)?

  3. 3.

    How did you become involved with the family or families you are assisting in your current parent advocate role?

  4. 4.

    Describe your experience in advocating for families of children with mental illness. (Descriptive prompts included: Level of experience (e.g., working one-to-one; working with service teams; advocating with agencies; advocating with legislators; etc.); Years and approximate number of families served; Previous advocacy related experience with other organizations/agencies)

  5. 5.

    Describe your specific trainings in advocacy and the agencies that sponsored or provided these trainings.

Parent Advocate Involvement and Services

  1. 6.

    List and describe the specific kinds of advocacy services, meetings, assistance, and activities that you provide to families. (Descriptive prompts included: need/purpose of activity; average time spent/month; description of role in activity)

  2. 7.

    What are some examples of how you believe kids and their families are being helped because of your role as a parent advocate? (Alternative question: describe how you believe your work is helping to support and empower the families with whom you work.)

  3. 8.

    Why, in your opinion, do some families decline parent advocacy services when offered? [Probe: what are potential barriers keeping families from accepting advocacy services?]

  4. 9.

    How do your services vary based on the child’s and family’s needs?

  5. 10.

    How do you consider and incorporate the culture of families in your parent advocate activities?

    1.  

      Follow-up probes:

    2. (a)

      How does your approach with children and families differ based on their cultural characteristics (i.e., ethnic and racial background, socio-economic level, family constellation, religion, family values, other cultural characteristics)?

    3. (b)

      How, specifically, do your services vary by child and family cultural characteristics?

  1. 11.

    Describe the step-by step process that you follow from initial linkage with a family through advocacy planning and action.

Support for Parent Advocates

  1. 12.

    On a scale of 1–5 (1 being not well at all and 5 being very well), how supported do you feel by the following groups for the decisions you make as a parent advocate? (program specific entities; other families)

  2. 13.

    In what specific ways do you feel support by the following groups for the decisions you make as a parent advocate? (program specific entities; other families)

  3. 14.

    In what additional ways would you like to see support offered to Parent Advocates?

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Davis, T.S., Scheer, S.D., Gavazzi, S.M. et al. Parent Advocates in Children’s Mental Health: Program Implementation Processes and Considerations. Adm Policy Ment Health 37, 468–483 (2010). https://doi.org/10.1007/s10488-010-0288-x

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