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
- 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,
methods that family organizations can use to help bring
about system transformation.