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Care maps for children with medical complexity.

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Summary

Care maps, visual tools created by families, help healthcare providers understand the complex needs of children with medical complexity. These diagrams enhance patient- and family-centered care by integrating experiences and priorities.

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Area of Science:

  • Pediatric healthcare
  • Family-centered care
  • Health informatics

Background:

  • Children with medical complexity (CMC) require coordinated care from multiple providers and services.
  • A care map is a patient/family-created visual diagram of these complex services.
  • Understanding the meaning and utility of care maps is crucial for clinical application.

Purpose of the Study:

  • To explore the meaning and impact of care maps for families and healthcare providers.
  • To inform the potential clinical use of care maps in managing CMC.

Main Methods:

  • Parents (n=15) created care maps (hand-drawn or computer-generated).
  • Semi-structured interviews were conducted with parents and healthcare providers (n=30) who reviewed the maps.
  • Grounded theory was used for data analysis to identify themes and develop a theoretical model.

Main Results:

  • Thirteen themes emerged, categorized into features, functions, and outcomes of care maps.
  • Care maps graphically represent the complex burden of care from the parents' perspective.
  • Care maps were endorsed by both families and providers as a valuable tool.

Conclusions:

  • Care maps support patient- and family-centered care by integrating family experiences and priorities.
  • They enhance provider understanding of parental care priorities.
  • Care maps offer a unique visual method for incorporating narrative medicine into practice.