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

IF 2 4区医学 Q2 PEDIATRICS

Child Care Health and Development Pub Date : 2025-07-31 DOI:10.1111/cch.70132

Vicky Hopwood, Simon Pini, Megan Roker

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Abstract

Background

Children 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.

Methods

Parents 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.

Results

Twenty-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.

Conclusion

This 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.

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有长期身体健康问题的儿童和青少年的父母-学校导航的经验

具有不同长期身体健康状况的儿童和青少年（CYP）报告了在学校的共同需求，但对其父母的观点知之甚少。本研究旨在提供家长的观点，了解有医疗条件的中学学龄CYP在学校需要什么，以及父母在协商支持其子女方面发挥的作用。方法对在英国上学的11-18岁的CYP家长进行访谈，并对其长期身体健康状况进行10项之一的调查。为了优先考虑父母的声音，参与者完成了一项准备活动，以鼓励他们在访谈中拥有更多的控制权。先前INSCHOOL CYP项目的需求分析被用作家长访谈框架分析的基础，并辅以由三位家长参加的分析研讨会。结果2023年9月至2024年5月共有27名家长参与。家长对青少年在学校的需求的看法证实了青少年在学校自己先前确定的六项需求：安全管理学校卫生；灵活的教育途径；被承认，被倾听；融入学校社区并得到学校社区的支持；建设未来；培养学生在学校应对问题的态度和方法。此外，父母报告的CYP有明显情感和心理健康需求的例子要多得多。家长们在弥补未满足的需求、倡导CYP、为学校提供建议以及倡导平等和包容方面发挥了至关重要的作用。家长们也有他们自己的需求：要确信他们的孩子在学校是安全的；倾听：被倾听和参与；了解权利和责任；获得精神健康和情感支持。结论：这项以家长为中心的研究加强了对CYP的现有需求分析，增加了显示学校显著未满足需求的证据。父母在解决孩子无法满足这些需求的问题上起着至关重要的作用。在系统中导航以获得支持可能会对家庭与学校的关系和父母的幸福产生负面影响。要求父母机构通过卫生和教育系统“战斗”，这加剧了卫生不平等，因为并非所有父母都能够履行这一职能。目前向健康状况不佳的青少年及其父母提供的支助需要改进。

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来源期刊

Child Care Health and Development 医学-小儿科

CiteScore

3.40

自引率

5.30%

发文量

136

审稿时长

4-8 weeks

期刊介绍： Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.