Grant: Project Grant

Children with rare inherited metabolic diseases (IMD) are among the small number of children who have disproportionately high needs for care, both in the hospital and in the community. This has important impacts on their families and on the health system. In a recent study, we interviewed parents of children with IMD and learned that they were concerned about the care their children were receiving. The challenges they identified were often connected to poor coordination of care across different health care providers, and to problematic interactions with services and providers that were unfamiliar with a child's condition. To identify the most promising strategies to address these gaps in care, we need to better understand the challenges from family and provider perspectives. In this study, we propose to: 1. Invite parents to complete detailed diaries, care maps, and interviews, to report on their interactions with health care providers and systems so that we can identify the nature, frequency, and impact of challenges with health care delivery; 2. Interview health care providers across the different parts of the health system used by children with IMD, to understand their perspectives on barriers to and facilitators of effective health care delivery; and 3. Work together with families and providers to develop approaches that have the strongest possibility to resolve the challenges we have learned about. Comprehensively studying challenges in the delivery of health care services for children with IMD will allow us to design a set of highly promising interventions to improve care and outcomes for these children and their families.