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Family Experiences of Integrated Care for Children With Medical Complexity: A Scoping Review
Yvonne Zurynski1,2, Karen Hutchinson1,2,3,4, Yilin Kang2
1Australian Institute of Health Innovation, Macquarie University, Macquarie Park, New South Wales, Australia.
Insights
Experiences with paediatric integrated care models (PICMs) for children with medical complexity (CMC) show benefits like better coordination, but barriers exist. More family involvement in PICMs is crucial for family-centered care.
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.
Background:
Children with medical complexity (CMC) frequently access multiple healthcare services across often fragmented systems. Paediatric integrated care models (PICMs) support health care coordination, but little is known about experiences and perceived benefits and barriers among CMC, parents or carers while accessing PICMs. This review addresses these knowledge gaps by synthesising current published evidence.
Methods:
A scoping literature review based on searches of four databases: Medline, Embase, Scopus and CINAHL (2015-2024). Articles reporting on experiences of accessing PICMs by CMC aged < 19 years, their parents or carers were included. Data were extracted and thematically synthesised to describe experiences and perceived benefits and barriers.
Results:
The seven included papers reported on the experiences of parents (mostly mothers, 89%); only one paper included the views of CMC and siblings. All seven papers described the benefits of PICMs, including greater attention to individualised needs, smoother system navigation facilitated by care coordinators and improved communication and information sharing among care teams. Four papers reported barriers including limited understanding among parents and carers of care coordinator roles and processes and pathways of PICMs. Systemic barriers limited medical records sharing across providers and settings, and in two studies, parents raised this as a risk for care quality and safety for their CMC. Other systemic barriers identified by parents included a lack of stable funding for new models of care and difficulties linking PICMs with primary care, social care and education sectors.
Conclusions:
The evidence on experiences, benefits and barriers of PICMs among CMC, families and carers is scarce, and the voices of CMC are largely absent. The greater involvement of CMC, their parents and carers in the design and ongoing evaluation of PICMs should be a priority to improve family-centred integrated care for CMC.
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