Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities.

BACKGROUND: This study sought to examine the specific sources of challenges as identified by parents of children with disabilities. METHOD: Focus groups were conducted with 40 parent caregivers. Data gathered were coded into themes which were then analyzed through an intentional process of data reduction that resulted in the cross site validation of four superordinate themes. RESULTS: Four themes emerged as the most prominent barriers to positive parent wellbeing: (a) access to information and services, (b) financial barriers, (c) school and community inclusion, and (d) family support. These four themes are indicative of problems associated with a lack of match between caregiver needs and services, resources, or support available in the community to meet those needs. CONCLUSION: Caring for a child with a disability can be challenging, but many of these challenges are likely due to a lack of necessary environmental supports. Future research should expand on these findings and policy makers, scientists and providers should give particular attention to the environmental support needs of parents in order to create policies and interventions that are more family-centered.