Sharing the Load: An Exploratory Analysis of the Challenges Experienced by Parent Caregivers of Children With Disabilities

Abstract

Millions of children in the United States are diagnosed with disabilities every year, and parents frequently encounter significant challenges when caring for their children with disabilities. Though advocates often focus on structural and policy remedies, parents’ informal networks can also serve an important function when helping parents manage their uncertainties. The purpose of this study was to identify the challenges that parents discuss with their informal network. Results for 40 conversations between a parent of a child with disabilities and a member of his/her informal network indicated that parents discussed the challenges of isolation, relationships, stigma, parenting, logistics, socialization, and transitioning to adulthood. These will be discussed in detail along with their implications for families including a child with disabilities.