Hopwood Vicky, Pini Simon, Roker Megan
Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
Child Care Health Dev. 2025 Sep;51(5):e70132. doi: 10.1111/cch.70132.
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.
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.
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.
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.
患有不同长期身体健康状况的儿童和青少年（CYP）表示在学校有共同需求，但对于他们父母的看法却知之甚少。本研究旨在从家长的角度探讨患有疾病的中学年龄段CYP在学校的需求以及家长在为孩子争取支持方面所起的作用。
在英国上学的11至18岁患有10种长期身体健康状况之一的CYP的家长，参与了关于其子女学校经历的访谈。为了突出家长的声音，参与者完成了一项准备活动，以鼓励他们对访谈有更多的掌控权。先前INSCHOOL CYP项目的需求分析被用作对家长访谈进行框架分析的基础，并辅以与三位家长进行的分析研讨会。
2023年9月至2024年5月，27位家长参与其中。家长对其CYP在学校需求的看法证实了CYP自己先前确定的六项需求：在学校安全管理健康；有灵活的教育途径；被认可和倾听；被学校社区接纳并得到支持；为未来做准备；培养在学校应对的态度和方法。此外，家长报告了更多其CYP有重大情感和心理健康需求 的例子。家长在弥补未满足的需求、为CYP争取权益、为学校提供建议以及倡导平等和包容方面发挥了关键作用。家长也有自己的需求：对其CYP在学校的安全感到放心；被倾听和参与；了解权利和责任的信息；获得心理健康和情感支持。
这项以家长为中心的研究强化了现有的针对CYP的需求分析，补充了表明学校中存在大量未满足需求的证据。家长在解决这些需求未得到满足的问题上发挥着关键作用。在系统中争取支持可能会对家校关系和家长幸福感产生负面影响。要求家长通过健康和教育系统“斗争”的代理需求加剧了健康不平等，因为并非所有家长都能履行这一职能。目前为患有健康状况的CYP及其家长提供的支持需要改进。
