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Care coordination is the issue that families of CSHCN cite most often as problematic. Fragmentation and lack of communication among care providers often leads to frustration and poorer quality of care. Now, a team of researchers has taken a novel approach, reimagining the process using human-centered design, which focuses on the users’ needs. The goal is to integrate all sectors of care and support – medical, educational, financial and other services – so that care can be delivered effectively and better meet the needs of children, families, providers, and payers. The researchers propose four steps to applying human-centered design to care coordination for children with medical complexity. They suggest that disruption of the current system may be necessary, and note the potential roadblocks to change. 

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Findings from a survey of California-based caregivers that asked them about their experiences receiving peer support for caring for children and youth with special health care needs.

This fact sheet explains the methods used in a study of California caregivers of CYSHCN, including the study’s purpose, survey instrument, sample, survey distribution, data analysis, and more.