“When everything changes:” Parent perspectives on the challenges of accessing care for a child with a disability

Background: Health disparities exist among individuals living in rural and urban contexts in terms of access to healthcare and overall mortality. These disparities are typically greater for youth with disabilities living in rural areas, who face additional barriers in receiving health and support services specific to their disability. Parents are typically the ones responsible for coordinating the care needed by children with a disability; however, with numerous barriers present families are not provided adequate support to care for a child with disabilities.

Objective: The purpose of this study was to examine barriers and facilitators to accessing health and support services among urban and rural families of children with disabilities.

Methods: In depth interviews were conducted with parents who provide care for an adolescent with a disability. The sample comprised of parents from one rural county (N=9) and one urban county (N=10) in Georgia. Parental interviews were conducted face to face by a trained researcher. Each interview was audio-recorded. The recordings were transcribed and content analysis used to create codes and identify emerging themes. Results: The common themes found during the analysis include accessibility of health and support resources, transitions, and social isolation.

Conclusions: When comparing urban and rural areas, barriers to access do differ in terms of availability, but analysis revealed more similarities exist among parents from both contexts. Efforts must be made to increase opportunities for youth with disabilities to become connected with the local community in order to improve quality of life for families.