Abstract
Abstract BACKGROUND: A care map is a visual diagram that illustrates all of the resources needed to support a child with medical complexity, providing a contextualized view of the child in a broader health network. It is believed that health care providers (HCPs) can utilize care maps to enable child and family centered care by helping families prioritize and coordinate their health needs. While the popularity of care maps has been growing, there is a paucity of research on their clinical usefulness. OBJECTIVES: The objective of this study is to explore how care maps are constructed by parents, what they mean for parents and HCPs, and how they can be applied in a clinical setting. DESIGN/METHODS: This is a qualitative study informed by a grounded theory approach. Theoretical sampling of parents and HCPs of CMC was utilized. Fifteen care map training sessions and forty-five semi-structured interviews with parents and HCPs of CMC were conducted. The data was coded and analyzed iteratively for predominant themes and emerging theory. RESULTS: Both HCPs and parents strongly identified the care map [Figure 1] as a valuable tool in the care of CMC. Data analysis revealed key themes that demonstrated how and why care maps are useful. Care maps allow HCPs to recognize family experiences, identify parental goals of care and promote improved care coordination and communication. Parents described creating care maps as an empowering and therapeutic process that helped them to organize and communicate their complex interplay of supports. Both parents and HCPs acknowledged challenges associated with care mapping including the ability of parents to create a care map as well as the HCPs ability to independently interpret the care map’s meaning. CONCLUSION: Care maps are a useful communication and coordination tool to demonstrate a contextualized view of a family’s narrative of their experience caring for a CMC. Findings may inform a model of how to utilize care maps in clinical practice.
Published Version
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