Investigating and documenting the school lives of high school pupils living with chronic or life-limiting illness

Description

The INSCHOOL project is a 5 year National Institute for Health and Care Research (NIHR) funded research programme looking at the school lives of young people (11-18) living with long-term physical health conditions.

Our 2022 systematic review revealed six common themes in previous research: ‘keeping up/catching up/missing out/looking forward’; ‘identity’; ‘relationship with peers’; ‘normality and difference’; ‘autonomy’; ‘relationships with staff’.

We recommended that while attendance and attainment remain important, there is clearly more that needs to be considered when gathering data, designing interventions and developing policies to support this population. We then went on to gather first-hand accounts of the experiences of young people aged 11-18 living with long-term physical health conditions across eleven clinical groups at Leeds Children’s Hospital.

Analysis of this data defined six fundamental needs all young people had in school: Need to safely manage my health at school; Need for a flexible education pathway; Need to be acknowledged and listened to in the right way; Need to be included in a supported by the school community; Need to build towards my future; Need to develop attitudes and approaches to coping in school and have good mental health

This research showed that young people with long-term physical health conditions have unmet health, academic, psychological, and social needs within school. Importantly we also showed that all young people face the same challenges, regardless of what specific health condition they have.

The INSCHOOL project has gathered unique information about the school lives of young people with long-term physical health conditions and has used this information to develop a needs assessment tool that can be used in health, education and research contexts. We are currently using this needs assessment to gather information from young people across the country. This will give us a much better idea of what needs young people have at school, and help us know the best areas to develop new support and interventions to improve things for young people, their families and their schools.

Publications and outputs

Attendance paper 

Journal of Adolescence – 2023 – Spencer

Literature Review Paper

PPIE and Participatory Methods

 

Project website

https://choralresearch.org.uk/sub-projects/the-inschool-project/