Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives

Area of Science:

• Pediatric Healthcare
• Family Support Services
• Care Coordination

Background:

• Children with neurodevelopmental disorders and medical complexities (NDD-MC) require extensive care coordination across multiple sectors.
• Families of these children often face significant challenges due to complex behaviors and limited information on support needs.

Purpose of the Study:

• To comprehensively understand the needs of families raising children with NDD-MC.
• To identify specific coordination challenges and impacts on family quality of life.

Main Methods:

• A sequential exploratory mixed-methods study involving 67 caregivers of NDD-MC children.
• Utilized semi-structured interviews and validated questionnaires to assess family quality of life, care integration, and resource utilization.
• Employed an adapted Maslow's hierarchy of needs model to analyze caregiving impacts.

Main Results:

• Lack of adequate support negatively affected family quality of life, leading to unmet needs such as caregiver burden, behavioral issues, financial strain, and mental health concerns.
• Caregivers navigated a fragmented healthcare system with insufficient support for care coordination challenges.
• Significant unmet needs were identified across health, educational, and social domains.

Conclusions:

• Recommends implementing a needs-based care coordination program tailored to the health, educational, and social requirements of NDD-MC children and their families.
• Advocates for Maslow's hierarchy-based support to enhance the quality of life for families managing complex care needs.
• Highlights the critical role of integrated and family-centered support systems.