Caregiving Issues of Parents with Children with Profound Development Disabilities during Transition

Background/ Significance: In the United States, at least 6 million children have at least one disability. Parents of children with autism and other developmental disabilities (DD) reported higher stress and aggravation levels compared to parents of children without autism or DD. Previous studies have shown that the main cause of institutionalization was health of the care giver and not the care recipient. As these children with DD age they may present their caregivers with unique challenges. By understanding the issues facing parents of children with DD, schools and society can better prepare services for the parents and children.

Purpose: The purpose for conducting this research was to see how caring for a child with DD affects the parent's health and quality of life, with special attention on transition issues.

Methods: Focus groups were conducted, because of a lack of standardized survey instruments. The focus group topics included characteristics of a caregiver, impact thus far on their life, coping mechanisms, and transition issues. The audio files were transcribed and coded for broad themes and ideas.

Results/Discussion: The major themes that arose were regarding relationships, education, safety, and the misconception of others regarding their child's disability. Overall, parents loved their children unconditionally, and yet they still faced challenges. Some challenges included, attitudes of others, policies of organizations, and future challenges their children will face. By educating the public, the parents have said it will help their and their children's lives.