Abstract
The nature of relationships between service providers and parents of children with disabilities influences the health and wellbeing of parents and ultimately the quality of life of their children. The aim of this study was to explore parents’ perceptions of their partnerships with service providers. We explored what was and was not working within these service relationships and solicited ideas for improved partnerships and services. We employed a qualitative, participatory research approach and adapted the Reflexive Methodology of Analysis in Partnership developed by Boudreault and Kalubi (2006). Thematic analysis and critical interpretation of the statements created in two focus groups by eight parents of nine children with disabilities generated eight themes: system complexity; funding; communication; navigation and advocacy; education; segregation; emotional support; and connecting with parents. Parents described difficulties in mediating partnerships in an ineffective disability service system and proposed practical solutions to these problems. We suggest that the structure of the disability service system is the root of these problems and must be radically changed to realize true partnership and client-centered services. Implications from this study for policy and practice include transforming the structure of the system, streamlining the organization and location of service information and delivery, including parents on decision-making bodies, and creating spaces for mutual peer support for parents of children with disabilities.
Published Version
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