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.

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

For some children and young people (CYP) with long-term physical health conditions (LTPHCs) attending school can be difficult. There is a lack of evidence documenting their school attendance experiences, how schools manage absence for these children, and subsequent effects. This study utilised an existing dataset from eighty-nine 11-18-year-olds in mainstream secondary schools in the United Kingdom across 11 LTPHCs that provided first-hand accounts about the children's experiences of school. Data pre-coded "attendance" were subject to thematic analysis to explore issues emerging. Findings showed attendance patterns varied, with some CYP missing little and others significant amounts of education. Children with LTPHCs wanted to attend school and did their best to navigate education alongside health. School systems for attendance were inconsistent and adversarial. Remedial and supportive action emerged as lacking, and children felt it was their personal responsibility to make up for lost time and missed work when absent. Decisions on whether they attended school, coupled with practices promoting high attendance had detrimental consequences for CYP with LTPHCs educationally, emotionally and socially. Overall, children with LTPHCs felt punished, stigmatised, unfairly treated, unequal and excluded. Results have implications for education, health, and policy practitioners to better plan and target attention so that the LTPHC cohort are treated sensitively and equitably and afforded their entitlement to education when they cannot go to school for health reasons often outside of their control.

The INSCHOOL project: showcasing participatory qualitative methods derived from patient and public involvement and engagement (PPIE) work with young people with long-term health conditions.

BACKGROUND: Evidence suggests resources and services benefit from being developed in collaboration with the young people they aim to support. Despite this, patient and public involvement and engagement (PPIE) with young people is often tokenistic, limited in engagement and not developmentally tailored to young people. Our paper aims to build knowledge and practice for meaningfully engaging with young people in research design, analysis and as research participants. METHODS: We report the participatory processes from the INSCHOOL project, examining long-term health conditions and schooling among 11-18 year olds. Young people were consulted at the inception of the project through a hospital-based youth forum. This began a partnership where young people co-designed study documents, informed the recruitment process, developed creative approaches to data collection, participated in pilot interviews, co-analysed the qualitative data and co-presented results. RESULTS: PPIE advisors, participants and researchers all benefitted from consistent involvement of young people throughout the project. Long-term engagement allowed advisors and researchers to build rapport and facilitated openness in sharing perspectives. PPIE advisors valued being able to shape the initial aims and language of the research questions, and contribute to every subsequent stage of the project. Advisors co-designed flexible data collection methods for the qualitative project that provided participants with choices in how they took part (interviews, focus groups, written tasks). Further choice was offered through co-designed preparation activities where participants completed one of four creative activities prior to the interview. Participants were therefore able to have control over how they participated and how they described their school experiences. Through participatory analysis meetings advisors used their first-hand experiences to inform the creation of themes and the language used to describe these themes. PPIE in every stage of the process helped researchers to keep the results grounded in young people's experience and challenge their assumptions as adults. CONCLUSIONS: Young people have much to offer and the INSCHOOL project has shown that researchers can meaningfully involve young people in all aspects of research. Consistent PPIE resulted in a project where the voices of young people were prioritised throughout and power imbalances were reduced, leading to meaningful participant-centred data.

BACKGROUND: Young people's voices are often overlooked in research about long-term health conditions, but evidence suggests involving young people improves research quality, usefulness and impact. Despite the benefits, young people are not involved in research as often or as well as they could be. METHODS: Young people were consulted during the early planning of the INSCHOOL project and began a long-term co-production partnership. Through a series of meetings, young advisors helped to design project methods, took part in pilot interviews, analysed interview data, and presented results. Co-designed activities helped participants prepare for their interviews, which was a key part in helping participants tell their own stories. RESULTS: Having young advisors throughout the research added significant value to the project design and helped the results remain grounded in young people's experiences. The co-designed methods gave participants time to prepare for interviews, which allowed them to feel more comfortable and in control of the interview process. This reduced the amount of influence the researchers had over the content of the interviews and gave young people an opportunity to describe experiences of school life that were meaningful to them. PPIE advisors, participants and researchers all benefitted from consistent involvement of young people throughout the project. Long-term engagement allowed advisors and researchers to build rapport and facilitated openness in sharing perspectives. CONCLUSIONS: Researchers should aim to engage with young people at an early stage of research to develop partnerships that allow them to shape the direction and content of the research, and how the information is analysed and presented. Co-designing methods that offer flexibility and make it easy for young people to have more control over the research process can lead to more meaningful and valuable results.

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.