Caring for a child with a disability can be challenging, but many of these challenges are due to a lack of necessary environmental supports, according to a study conducted by researchers at the Texas A&M University Center on Disability and Development.
Results of the study, a part of a larger statewide needs assessment for families that have children with disabilities, is published in the current issue of Rehabilitation Psychology.
Seven focus groups were conducted in Texas with 40 parents of children with disabilities, and data collected from these focus groups were coded into themes.
"The qualitative data analysis yielded four significant themes that serve as barriers to positive parent wellbeing: access to information and services, financial barriers, school and community inclusion, and family support," notes Aaron Resch, the lead author of the article, whose expertise includes caregiver well-beings.
"The parents in this study did not identify child-specific variables, such as disability severity and child behavior problems, as the most significant challenges associated with raising a child with a disability," Resch explains. "They also did not describe their experience of raising a child with a disability as one of burden and pathology.
"Rather, our findings suggest that many parents perceive a fundamental lack of match between their needs and the resources and supports available to meet those needs," the Texas A&M researcher adds. "It is this lack of a match that seems to be one of the greatest impediments to optimal wellbeing for these parents."
Parents of children with disabilities have more influence on the wellness of the child than any other individual or healthcare provider. They provide an invaluable and irreplaceable service to society.
"Our findings support the need for more family-centered services for parents raising a child with a disability," he says. "Particular attention should be given to the family's needs and the resources and environmental/social supports available for them to meet those needs."