A Mixed Methods Analysis of Care Coordination Needs and Desirable Features of an M-Health Application to Support Caregivers of Children With Down Syndrome

Abstract

Care coordination is critical for the management of health care needs of children with Down syndrome by encompassing management of health information and linking of providers. This study was designed to identify caregiver and health care provider experiences of care coordination to inform the development of an m-health application. In this mixed methods study, caregivers completed survey materials addressing the child's health care needs, m-health use, and care coordination experiences. A sample of caregivers and health care providers were interviewed to further understanding. Most caregivers reported having a primary health care provider but wanted increased communication and help with care coordination. Interview data identified themes related to care coordination challenges, including information management, information sharing, use of health care guidelines, tracking health data, resources, technology use, previous application use, and coordination of schedules. Qualitative themes were linked to desired features of an m-health application to aid in development.