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

Abstract

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. 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. 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. 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.