Evidence map›Paper›PMID 40743316›Full record

ArticleChild: care, health and development2025

Parents of Children and Young People With Long-Term Physical Health Conditions-Experiences of Navigating School.

Vicky Hopwood, Simon Pini, Megan Roker

Abstract read
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 1 paper.

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

What it found

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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

1 citing paper in PubMed.

  1. 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

3 authors.

Vicky HopwoodLeeds Institute of Health Sciences, University of Leeds, Leeds, UK.ORCID https://orcid.org/0009-0007-8553-2899
Simon PiniLeeds Institute of Health Sciences, University of Leeds, Leeds, UK.ORCID https://orcid.org/0000-0001-8455-3240
Megan RokerLeeds Institute of Health Sciences, University of Leeds, Leeds, UK.ORCID https://orcid.org/0009-0009-2333-1316

Funding

Leeds Hospitals Charity A2002118
6 · The paper itself

Abstract

backgroundChildren and young people (CYP) with different long-term physical health conditions report common needs at school, but little is known about the views of their parents. This research sought to provide the parent perspective on what secondary school-aged CYP with medical conditions require at school and the role parents play in negotiating support for their children.

methodsParents of CYP aged 11-18 years attending school in the United Kingdom, with one of 10 long-term physical health conditions, took part in interviews about their children's school experiences. To prioritise parent voice, participants completed a preparation activity to encourage them to have more control over the interviews. A needs analysis from the previous INSCHOOL CYP project was used as the basis for a framework analysis of parent interviews and supplemented with an analysis workshop with three parents.

resultsTwenty-seven parents participated from September 2023 to May 2024. Parent views of the needs their CYP have at school corroborated the six needs previously identified by CYP themselves: to safely manage health at school; for a flexible education pathway; to be acknowledged and listened to; to be included in and supported by the school community; to build towards the future; to develop attitudes and approaches to coping in school. In addition, parents reported far more examples of their CYP having significant emotional and mental health needs. Parents played a crucial role in compensating for unmet needs, advocating for CYP, advising schools and championing equality and inclusion. Parents also had their own needs: to feel confident their CYP are safe at school; to be listened to and involved; to have information about rights and responsibilities; and to have mental health and emotional support.

conclusionThis parent-focused study strengthens an existing needs analysis for CYP, adding to evidence showing significant unmet needs in school. Parents play a crucial role in addressing failures to meet these needs. Navigating the system to secure support can have negative implications for home-school relationships and parent well-being. Requirements for parental agency to 'battle' through health and education systems exacerbate health inequalities, as not all parents are able to fulfil this function. Improvements are needed in the support currently offered to CYP with health conditions and their parents.

Indexed as

ParentsSchool Health ServicesAdaptation, PsychologicalAdolescentChildChronic DiseaseFemaleHealth Services Needs and DemandHumansMaleNeeds AssessmentQualitative ResearchSchoolsUnited Kingdomadvocacychildren and young peopledisabilityeducationinequalitieslong‐term physical health conditionsneedsparents

Identifiers

PMID40743316
PMCPMC12313002

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

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.