Stage of Research: Translate Team Members: 4


There is compelling evidence that young people living with chronic illnesses have reduced school attendance, significant educational disadvantage, and difficult overall experiences in their school lives. Research focusses largely on attainment and attendance, rather than experiences of young people, and sometimes misses out the perspectives of young people altogether. This means that services and policy are often developed without being based in the full diverse experiences of the young people they aim to support. There is a need for greater understanding of the holistic academic, health and psychosocial variables to assess and document the school lives of this population in order to more accurately develop policy, support and interventions.

In September 2021 we carried out a systematic review in order to establish what current research tells us about the experience of school life for young people with a chronic condition in one of ten clinical groups.

Upon more detailed reading and synthesis of findings, 6 themes emerged from these papers: keeping up/catching up/missing out, identity, relationships with peers, normality and difference, autonomy, relationships with staff. We have now written a detailed exploration of these themes (see resources).

In April 2022, we opened a large-scale qualitative project including secondary school pupils and their experience with health conditions in school. A participant-led methodology facilitated engagement with 89 young people by asking them to complete a small creative preparation activity, before participating in informal online interviews or focus groups. The interviews/focus groups are then facilitated by discussion of the participant activity. Six needs were identified: their health to be safely managed at school; a flexible education pathway; to be heard; to be included in the school community; to build towards their futures; and to develop coping approaches. We are also in the process of speaking to parents of children with long term physical health conditions to highlight their experience.

Additionally, we are developing a needs assessment for schools, clinics, and research purposes surrounding children with unmet needs. Alongside this, there will be a national survey to collect holistic school data.

Young people are important partners of the INSCHOOL project. We are working with the Leeds Youth Forum and Young Research Owls, who are based Leeds Children’s Hospital. They have been involved in shaping the ideas and execution of the project. Results were shaped by the experience of young people through interviews and focus groups; as well as being part of presenting results at a research event.


It is important to recognise the needs of young people with long-term physical health conditions at an early stage and involve them in deciding on appropriate adjustments. Regular and sensitive communication with young people and their parents is needed to reduce future issues and maintain the idea that schools care about their health needs. This should be done without highlighting these individuals as different, ensuring inclusion in school life.

Project Image for INSCHOOL Project

Fundamental Research

Core Science

Fundamental Research

Discovery and Design


Trials and Assessment

Co-design and test in ~ 10 schools


Large Randomised Controlled Trial


Regional Rollout


Evidence-based Policy

Our team members

Avatar Image for Simon Pini

Dr. Simon Pini

Leeds Institute of Health Sciences - NIHR Associate Professor of Child Health Research

Avatar Image for Megan Roker

Megan Roker

Centre for Applied Education Research - Research & Implementation Assistant

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