Family Experiences of Integrated Care for Children With Medical Complexity: A Scoping Review

Area of Science:

• Pediatric Healthcare
• Health Services Research
• Integrated Care Models

Background:

• Children with medical complexity (CMC) navigate fragmented healthcare systems.
• Paediatric integrated care models (PICMs) aim to improve care coordination for CMC.
• Limited understanding exists regarding CMC and family experiences with PICMs.

Purpose of the Study:

• To synthesize evidence on the experiences, benefits, and barriers of accessing PICMs for CMC.
• To identify knowledge gaps concerning CMC and family perspectives on PICMs.

Main Methods:

• A scoping literature review was conducted using Medline, Embase, Scopus, and CINAHL (2015-2024).
• Included studies focused on the experiences of CMC (<19 years), parents, or carers accessing PICMs.
• Data were thematically synthesized to identify benefits and barriers.

Main Results:

• All seven studies reported benefits of PICMs, including individualized attention and improved communication.
• Barriers included parental misunderstanding of roles, limited record sharing, unstable funding, and poor integration with other sectors.
• Parental experiences (mostly mothers) dominated findings; CMC and sibling voices were largely absent.

Conclusions:

• Evidence on CMC and family experiences with PICMs is scarce, with minimal inclusion of CMC perspectives.
• Prioritizing the involvement of CMC, parents, and carers in PICM design and evaluation is essential.
• Enhancing family-centered integrated care for CMC requires greater stakeholder engagement.