Caregiver voices: coordinating care for children with complex chronic conditions

Children with complex chronic conditions (CCC) receive care from multiple providers and agencies for a prolonged period of time. Coordination of care between providers is essential in the care of children with CCC. The purpose of this study was to determine which aspects of care coordination are important to caregivers and explore the challenges faced by caregivers in coordinating care. Using focus group methodology, the authors elicited experiences of caregivers relative to care coordination for children with CCC. Several themes emerged: (a) more information sharing and quality communication is needed among all those involved in providing care for children with CCC, (b) caregivers need help in navigating the system of care, and (c) caregivers develop strategies to cope with care coordination demands. Caregiver burden of coordinating care for children with CCC can be alleviated in part through improved communication and collaboration between agencies and providers and through developing easier ways to navigate a complex health system.