Background: The Medical Home model recommends that Children with Special Health Care Needs (CSHCN)\r\nreceive a medical care plan, outlining the child�s major medical issues and care needs to assist with care\r\ncoordination. While care plans are a primary component of effective care coordination, the creation and\r\nmaintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been\r\nstudied. The purpose of this qualitative study was to understand the usefulness and desired content of\r\ncomprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children\r\nwith medical complexity (CMC).\r\nMethods: This qualitative study utilized in-depth semi-structured interviews and focus groups. HCPs (n = 15) and\r\nparents (n = 15) of CMC who had all used a comprehensive care plan were recruited from a tertiary pediatric\r\nacademic health sciences center. Themes were identified through grounded theory analysis of interview and focus\r\ngroup data.\r\nResults: A multi-dimensional model of perceived care plan usefulness emerged. The model highlights three\r\nintegral aspects of the care plan: care plan characteristics, activating factors and perceived outcomes of using a care\r\nplan. Care plans were perceived as a useful tool that centralized and focused the care of the child. Care plans were\r\nreported to flatten the hierarchical relationship between HCPs and parents, resulting in enhanced reciprocal\r\ninformation exchange and strengthened relationships. Participants expressed that a standardized template that is\r\nfamily-centered and includes content relevant to both the medical and social needs of the child is beneficial when\r\nintegrated into overall care planning and delivery for CMC.\r\nConclusions: Care plans are perceived to be a useful tool to both health care providers and parents of CMC. These\r\nfindings inform the utility and development of a comprehensive care plan template as well as a model of how and\r\nwhen to best utilize care plans within family-centered models of care.
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