The INSCHOOL project: Young people with long‐term physical health conditions: An in‐depth qualitative study of their needs at school
Open accessAbstract
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.
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When continuity was lacking, students experienced isolation and anxiety about returning to school.
“When continuity was lacking, students experienced isolation and anxiety about returning to school [32].”
From Sense of School Belonging and School Reintegration for Students Hospitalized With Chronic or Complex Medical Diseases: Insights From a Grounded Theory Study (2026) · cites this paper as [32]
Section 4.2.4 (page unavailable) reports that absences disrupted friendships and left some participants feeling excluded, supporting the isolation part of the claim. Section 4.2.5 describes anxiety about moving to new schools or year groups, but the paper does not link anxiety about returning after an absence specifically to a lack of continuity. (LLM, conf=0.83)
Experimental — accuracy not yet measuredProlonged absence and limited communication may undermine sense of belonging.
“whereas prolonged absence and limited communication may undermine sense of belonging [20, 29, 30, 31, 32].”
From Sense of School Belonging and School Reintegration for Students Hospitalized With Chronic or Complex Medical Diseases: Insights From a Grounded Theory Study (2026) · cites this paper as [32]
Growing evidence identifies SoSB as a facilitator of well-being and academic and psychological outcomes among students with chronic illness.
“Growing evidence identifies SoSB as a facilitator of well‐being and academic and psychological outcomes among students with chronic illness [32, 36, 37, 38, 39].”
From Sense of School Belonging and School Reintegration for Students Hospitalized With Chronic or Complex Medical Diseases: Insights From a Grounded Theory Study (2026) · cites this paper as [32]
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- Authors
- Spencer, B. K. C., Hugh‐Jones, S., Cottrell, D., & Pini, S.
- Affiliations
- University of Leeds (GB)
- Corresponding author
- Pini, Simon
- Venue
- Journal of Adolescence
- Publisher
- Wiley
- Published
- 2023-11-27
- Volume
- 96
- Issue
- 2
- Pages
- 337-349
- ISSN
- 0140-1971 (ISSN-L)
- 1095-9254
- OpenAlex
- W4389097547
- Cited by
- 9
- References
- 43
- Citations by year
- 2026: 1 · 2025: 7 · 2024: 1
- FWCI
- 3.30
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Journal of Adolescence (publishedVersion, cc-by)
- PubMed (publishedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (submittedVersion)
- Funders
- National Institute for Health and Care Research (NIHR300842)
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Health Sciences › Health Professions › Speech and Hearing › School Health and Nursing Education
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- long-term physical health conditions, youth, school experience, unmet needs, secondary schools, inclusive education, school community support, coping
- MeSH terms
- Adolescent, United Kingdom, Humans, Schools, Qualitative Research
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