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

## TL;DR

Parents of children with long-term health conditions confirm six common school needs and highlight the challenges they face advocating for their children's support.

## Contribution

This study adds the parent perspective to previously identified school needs of children with health conditions and emphasizes the role of parents in addressing unmet needs.

## Key findings

- Parents confirmed six common needs for children with health conditions at school, including managing health and being included in the school community.
- Parents often compensate for unmet needs by advocating for their children, which can lead to health and education inequalities.
- Mental health support for children and emotional support for parents are critical areas requiring improvement.

## Abstract

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.

Parents of children with long‐term physical health conditions confirm previous research findings from young people that children have six common needs at school. These needs are to (1) safely manage health at school, (2) provide a flexible education pathway, (3) acknowledge and listen in the right way, (4) be included and supported by the school community, (5) build towards the future and (6) develop attitudes and approaches to cope in school and have good mental health. These needs are present across children with a broad spectrum of chronic health conditions and are often unmet at school.Parents play a vital role in securing support to meet unmet needs at school, advocating and compensating for children—often in their own time and out of their own pockets.Mental health support for children emerged as a key area to help children cope with their health condition or redress effects of unmet needs. Parents also require emotional support.Parents ‘battle’ and ‘fight’ for support for children's needs to be met, which can lead to health and education inequalities and negative child/parent/school relationships.Parents want to feel confident that children with medical conditions are safe, listened to and included at school. To better address unmet needs, school and healthcare professionals could provide a named contact who has knowledge of medical conditions and how to support them. Professionals should better provide information on the rights of CYP with medical conditions and the roles of respective authorities to address these. Government guidance to support children with medical conditions in England has not been updated since 2015 and would benefit from review.

Parents of children with long‐term physical health conditions confirm previous research findings from young people that children have six common needs at school. These needs are to (1) safely manage health at school, (2) provide a flexible education pathway, (3) acknowledge and listen in the right way, (4) be included and supported by the school community, (5) build towards the future and (6) develop attitudes and approaches to cope in school and have good mental health. These needs are present across children with a broad spectrum of chronic health conditions and are often unmet at school.

Parents play a vital role in securing support to meet unmet needs at school, advocating and compensating for children—often in their own time and out of their own pockets.

Mental health support for children emerged as a key area to help children cope with their health condition or redress effects of unmet needs. Parents also require emotional support.

Parents ‘battle’ and ‘fight’ for support for children's needs to be met, which can lead to health and education inequalities and negative child/parent/school relationships.

Parents want to feel confident that children with medical conditions are safe, listened to and included at school. To better address unmet needs, school and healthcare professionals could provide a named contact who has knowledge of medical conditions and how to support them. Professionals should better provide information on the rights of CYP with medical conditions and the roles of respective authorities to address these. Government guidance to support children with medical conditions in England has not been updated since 2015 and would benefit from review.