Care maps: De-medicalizing children with medical complexity

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.