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Care maps: De-medicalizing children with medical complexity
Blossom G Dharmaraj1, Sherri Adams1,2,3, Julia Orkin1,2,4
1SickKids Research Institute, Toronto, Ontario, Canada.
Insights
Care maps offer a holistic view of children with medical complexity (CMC), integrating parental priorities into care. Promoting these parent-created tools enhances collaboration between families and healthcare providers (HCPs) for better support.
Area of Science:
- Pediatric Healthcare
- Family-Centered Care
- Health Informatics
Background:
- Children with medical complexity (CMC) possess high healthcare needs and are often over-medicalized.
- Parental values are crucial for medical decision-making in CMC.
- Holistic understanding of CMC and their families is essential for healthcare providers (HCPs).
Purpose of the Study:
- To explore the utility of care maps as a tool for understanding CMC and their families.
- To highlight the importance of parental perspectives in medical decision-making for CMC.
- To promote collaborative care models involving HCPs and families.
Main Methods:
- Utilizing care maps, a parent-created tool, to gain insight into the child's life and service interrelationships.
- Leveraging previous research on care maps for parental reflection and priority identification.
- Analyzing the potential of HCP promotion of care maps.
Main Results:
- Care maps provide a holistic view of CMC, demonstrating life complexity and service interrelations.
- Care maps facilitate parental reflection and identification of care priorities.
- HCPs can use care maps to improve understanding of family goals.
Conclusions:
- Care maps are valuable tools for HCPs to gain a comprehensive understanding of CMC and their families.
- Promoting care maps can enhance collaborative care and support for families.
- Integrating parental insights through care maps improves holistic healthcare delivery for CMC.
Abstract:
Children with medical complexity (CMC) have extremely high health care needs. Given their chronic complex diagnoses and involvement of multiple care providers, they are often over medicalized and seen as a list of diagnoses rather than as a child. Parents of CMC are extraordinary caregivers and advocates for their children. Parental values and perspectives are critical drivers of medical decision making, therefore highlighting the importance of collaboration between all members of the medical team. For health care providers (HCPs) to holistically guide and support families, an all encompassing, big picture understanding of CMC and their family is needed, and care maps are one such vehicle to provide this insight. Care maps are a parent-created tool that can be used to provide a holistic view of the child and demonstrate the complexity of life and interrelatedness of services for CMC. Previous research has shown that care maps have been used as a resource to promote parental reflection and identify parental priorities of care. Promotion of care maps by HCPs as a valuable tool in understanding the child and family's goals may help improve holistic understanding and promote collaborative care.
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