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.

School lives of adolescent school students living with chronic physical health conditions: a qualitative evidence synthesis.

OBJECTIVE: Assess the existing evidence base in order to synthesise the current qualitative findings for the impact of chronic health conditions on the school lives of young people. DESIGN: Qualitative evidence synthesis using thematic synthesis. PATIENTS: Young people aged 11-18 years with a chronic health condition from one of the following groups: oncology, cystic fibrosis, diabetes, asthma, rheumatology, neuromuscular, colorectal, chronic pain, allergies and dermatology. OUTCOME MEASURE: Qualitative findings and discussions present in included studies formed the data for the thematic synthesis. RESULTS: From a search identifying 19 311 records, a sample of 35 papers were included. The included papers represented 15 countries and primarily employed interviews as part of data collection. Thematic synthesis resulted in six themes: 'keeping up/catching up/missing out/looking forward'; 'identity'; 'relationship with peers'; 'normality and difference'; 'autonomy'; 'relationships with staff'. CONCLUSIONS: Thematic synthesis highlighted the commonalities, rather than divergence, of issues for young people across different chronic conditions. Policies need to be based on the experiences of the people they aim to provide for, and 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. It may also be advisable for clinical professionals to include the broader psychosocial aspects of school life in discussions and plans to support young people with long-term conditions. PROSPERO REGISTRATION NUMBER: CRD42021278153.