Study 6: The Family Voice Study: Assessing the Role of Family Organizations in Developing Family Voice in Systems of Care

The Family Voice Study produced new knowledge and increased our understanding of how a strong family voice, as represented through family organizations, contributes to the development of effective systems of care. Through a systematic examination of family organizations focused on their external and internal characteristics, and through the influence of systems of care partners, this study identified and described key relationships, processes, and structures that impact family voice and choice. The study also identified measurable factors that facilitate the active and influential inclusion of family voices in systems of care activities so that necessary transformation of the system can occur.

Case studies were conducted in eight communities, selected through the survey, and divided into four groups of two communities each: (a) established family organizations with developed systems of care, (b) established family organizations with developing systems of care, (c) developing family organizations with established systems of care, and (d) developing family organizations with developing systems of care. Four research questions drove this study:

  • What factors support or impede developing and sustaining family organizations within the context of systems of care?
  • How do family organizations contribute to the implementation of local systems of care?
  • How do family organizations contribute to the sustainability of local systems of care?
  • How are the systems of care implementation factors understood and operationalized from the perspectives of family organizations?

To capture the complexity of family organizations, the study used both a national survey and embedded case study design to provide important knowledge on family-run organizations. Information was gathered on the status of such organizations nationwide, and on the processes they used at different developmental stages to strengthen their internal mechanisms, to work with other organizations within a system of care, and to positively impact the system of care.

The study provides new knowledge regarding:

  • the factors that contribute to the development and sustainability of an effective family organization;
  • how strong family organizations are linked to effective and integrated systems of care;
  • the structures, processes, and relationships of family organizations in systems of care; and,
  • recommended methods that family organizations can use to help bring about system transformation.

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