Parent Perspective on Care Coordination Services for Their Child with Medical Complexity

Area of Science:

• Healthcare delivery
• Pediatric care
• Health services research

Background:

• Care coordination is vital for children with medical complexity, involving multiple providers and services.
• Despite documented benefits, communication gaps persist, burdening parents with information management.
• Existing care coordination models often fail to meet the needs of these complex pediatric patients.

Purpose of the Study:

• To evaluate a new primary-specialty care coordination partnership model for children with medical complexity.
• To understand parental perceptions of communication and collaboration within this new model.
• To identify challenges and areas for improvement in care coordination for medically complex children, particularly in rural settings.

Main Methods:

• Qualitative study involving parent focus groups during the first year of a new care coordination partnership.
• Exploration of parental experiences with communication and collaboration among healthcare providers.
• Analysis of perspectives on existing care coordination practices and challenges.

Main Results:

• Parents value professional care coordination but find it is not consistently available.
• Communication gaps remain a significant challenge, with parents often acting as information intermediaries.
• Rural families face unique challenges, including limited local specialty care access, leading to travel burdens.

Conclusions:

• A system-level approach is needed to address care coordination gaps for children with medical complexity.
• New delivery paradigms for care coordination are urgently required to improve outcomes and patient experience.
• The partnership model shows promise but requires broader implementation and support to become the norm.