Evidence map›Paper›PMID 40329672›Full record

ArticleChild: care, health and development2025

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

Yvonne Zurynski, Karen Hutchinson, Yilin Kang, Maryam Vizheh, Anneliese de Groot

Abstract readScoping Review
In one paragraph

Article in Child: care, health and development, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Yvonne ZurynskiAustralian Institute of Health Innovation, Macquarie University, Macquarie Park, New South Wales, Australia.ORCID https://orcid.org/0000-0001-7744-8717
Karen HutchinsonAustralian Institute of Health Innovation, Macquarie University, Macquarie Park, New South Wales, Australia.
Yilin KangFaculty of Medicine, Health and Human Sciences, Macquarie University, Macquarie Park, New South Wales, Australia.
Maryam VizhehAustralian Institute of Health Innovation, Macquarie University, Macquarie Park, New South Wales, Australia.
Anneliese de GrootAustralian Institute of Health Innovation, Macquarie University, Macquarie Park, New South Wales, Australia.ORCID https://orcid.org/0000-0003-4647-1791

Funding

National Health and Medical Research Council 9100002
6 · The paper itself

Abstract

backgroundChildren 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.

methodsA 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.

resultsThe 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.

conclusionsThe 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.

Indexed as

CaregiversChild Health ServicesChildren with DisabilitiesDelivery of Health Care, IntegratedParentsChildHealth Services AccessibilityHumanscare experienceschildren with medical complexityfamily‐centred careintegrated caremodels of care

Identifiers

PMID40329672
PMCPMC12056461

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.