Categorical service allocation and barriers to care for children with chronic conditions

Parents raising children with chronic conditions face the challenge of locating and coordinating appropriate community-based resources and services for their child. The purpose of this secondary analysis was to determine parents' view of the mechanisms used to allocate health, education, and social services to children with chronic illness and disability and their caregiving families. A thematic analysis was conducted on data from interviews with 30 mothers and 13 fathers. These parents described 11 mechanisms that were used to determine eligibility and/or to ration services: diagnosis, age, technology dependence, severity, functional ability, guardianship status, geographic location, financial resources, judged parental coping, failure to inform parents about available services, and cyclical funding. These mechanisms were complex, inconsistent, and subject to change. Mechanisms that are integrated, proactive, flexible, and fair are needed to reduce parents' workload and to ensure more equitable allocation of services.