The INSCHOOL project: Young people with long‐term physical health conditions: An in‐depth qualitative study of their needs at school

Introduction The INSCHOOL project aimed to understand the school experiences and unmet needs of young people across a diversity of long-term physical health conditions.

Methods Young people aged 11−18 years, in mainstream secondary school in the United Kingdom, with one of 11 physical health conditions were invited to unique participant-driven interviews, focus groups, or written activities. Creative preparation activities were provided to give participants increased control over the data collection and prioritize their voices. A needs analysis, in combination with participatory analysis sessions with young people, identified the common needs of participants in relation to their school lives.

Results Eighty-nine young people participated from April 2022 to 2023. Analysis of their transcripts defined six common needs across all the health conditions: 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 and supported by the school community; need to build toward my future; need to develop attitudes and approaches to help me cope in school.

Conclusions This study has generated new, actionable knowledge by identifying six major needs that young people have in relation to the intersection of their health condition and their school life. This paper shows that a commonalities approach to research and policy development is warranted given the similarities in experiences and needs. The common needs identified in the INSCHOOL project highlight six areas where future interventions could be targeted to begin making meaningful changes for all young people with long-term health conditions.