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

Abstract

ObjectiveAssess 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.DesignQualitative evidence synthesis using thematic synthesis.PatientsYoung 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 measureQualitative findings and discussions present in included studies formed the data for the thematic synthesis.ResultsFrom 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’.ConclusionsThematic 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 numberCRD42021278153.

Qualitative Study Examining Attendance for Secondary School Pupils With Long-Term Physical Health Conditions

“…Although there is no agreed official data ( Bernell & Howard, 2016 ; Spencer et al, 2022 ), there are an estimated 1–1.7 million CYP with a LTPHC in the UK ( All Parliamentary Group for Diabetes, 2017 ; Hagell et al, 2013 ; Lewis & Lenehan, 2014 ; National Institute for Health and Care Excellence [NIHCE], 2023 ; Spencer et al, 2022 ). Using estimates based on available headcount figures for 2022/2023 ( Gov UK, 2023 ) and the estimated figure of 1.7 million CYP in England ( NIHCE, 2023 ), this equates to approximately 11–17% of the pupils in England living with a LTPHC ( Gov UK, 2023 ).…”

“…The INSCHOOL project is 5-year research programme conducted in the UK between 2020 and 2025 to better understand and document the school lives of CYP with LTPHCs. To date, the project has reviewed existing research in this topic area ( Spencer et al, 2022 ) and conducted a large-scale qualitative study with CYP across a diverse range of LTPHCs ( Spencer et al, 2023a , 2023b ). Using methods co-designed with CYP to collect first-hand accounts of school experiences ( Spencer et al, 2023b ), the qualitative project highlighted the significant unmet needs of this cohort and substantial commonalities in their school experiences regardless of their specific health condition ( Spencer et al, 2023a ).…”

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

“…We have worked with young people and clinicians from 11 clinical groups to represent diversity of long-term conditions whilst acknowledging that this is not comprehensive coverage. The first workstream showed common themes in the evidence base, but also that there was little research focussing on school experiences for young people with long-term health conditions, with most research to date focussed on a single health condition (Spencer et al, 2022). This means we are not learning about the impact of chronic health conditions on young people's schools lives more widely.…”