Title: Investigating and documenting the school lives of high school pupils living with chronic or life-limiting illness: The INSCHOOL programme.
Funder: Department of Health and Social Care

Abstract: Background Young people with chronic illness have difficult experiences in their school lives. Health and education services are not adequately meeting their needs and policies are not successfully implemented, evaluated or adhered to. Poor linkage between health and education data makes it difficult to know who is affected and how their school lives are impacted. Research and data collection focusses mainly on quantitative variables of attainment and attendance, and not on experiences of young people. Current assessment tools are insufficiently nuanced and specific to the needs of this group and produce inconsistent findings. Services and policy are therefore developed without being based in accurate data or the experiences of the young people they aim to support.Aims and objectives Three overall aims drive this research proposal and underpin the workstreams:1.Include academic, health and psychosocial variables to assess and document the school lives of high school pupils with health conditions2.Use the experiences and perspectives of young people as the driving force for the research3.Address 'silos' in research and services by successfully collaborating with patients and professionals across a wide range of young people's health conditions and education servicesMethods The proposed research will be conducted in four workstreams focussing on high school pupils (11-18) from the following health conditions: cancer, cystic fibrosis, diabetes, asthma, rheumatology, neuromuscular, colorectal, chronic pain, allergies, dermatology. Workstream 1 - A qualitative synthesis of research literature focussing on the impact of these conditions on education and school life. This review will use thematic analysis to synthesis outcomes. Workstream 2 - A large scale qualitative project comprising interviews and focus groups with over 100 young people with these health conditions. A participant-led methodology to facilitate engagement with young people, and subsequent thematic analysis, will elicit rich accounts of their experience. Workstream 3 -Thematic outcomes of WS1&2 will be used to design a new questionnaire to assess the impact of health conditions on the school lives of young people. Pilot data will be gathered from approximately 250 young people and Rasch analysis will be used to refine and validate the assessment. Workstream 4 - The new assessment will be used to collect data from young people nationally. This will be distributed to over 2,500 young people via Bristol Online survey through direct recruitment, national distribution lists, young people's events, and social media. Data will be analysed using logistic regression to assess variation across health conditions. Timeline for delivery I will dedicate 100%fte to completing this fellowship in five years. The workstreams will overlap to enhance time-efficiency, preparation for the next workstream will begin during the end of the previous workstream.WS1&2 will run concurrently and be completed in months 1-18, with preparation work commencing immediately on news of funding.WS3 will run during months 17-34.WS4 will run during months 31-57.Supervision, meetings, dissemination, PPI and training have been allocated to coincide with relevant workstreams and with consideration of workload and time management. There is time dedicated to the production of high quality papers.

Lay abstract: Aims In this fellowship I will work with young people and professionals from ten different health conditions to assess the impact of those conditions on school life. Specifically I will:1. Provide young people with the opportunity to describe how living with health conditions impacts their school lives.2. Develop a new assessment to accurately record and evaluate the impact of health on school3. Produce detailed information about the school experiences of young people to inform service development4. Address 'silos' in healthcare by successfully collaborating across a wide range of young people's health and education services Background Young people with chronic illness continue to have difficult experiences in their school lives. Health and education services are not adequately meeting their needs and policies to support them are not successfully implemented. Limited collaboration between health and education makes it difficult to know who is affected and how their school lives are impacted. Research focusses mainly on attainment and attendance, and not on experiences of young people. Services and policy are therefore developed without being based in the experiences of the young people they aim to support. Design and methods This research will focus on high school pupils (11-18) who have one of the following health conditions: cancer, cystic fibrosis, diabetes, asthma, rheumatology, neuromuscular, colorectal, chronic pain, allergies, dermatology. The research will be carried out in four workstreams: Workstream 1 - Systematic review of literature focussing on what young people say about how these conditions effect school life. Workstream 2 - A unique large scale qualitative project involving interviews and focus groups with over 100 young people with these conditions. Workstream 3 - Use the information from WS1&2 to design and pilot a new assessment for accurately collecting information on the impact of health on school life. Workstream 4 - Use the new assessment to gather data from young people across the UK. Patient and public involvementYoung people have been essential in developing this application and will continue to be consulted throughout the fellowship and be included on the steering group. I attended Leeds Youth Forum where 14 young people from different health conditions discussed facing similar difficulties because of health and described the inadequacy of support from health and education services. They suggested offering choices between one-to-one interviews and focus groups, which I've incorporated into the methodology. This began ongoing PPI work with the Youth Forum, which will involve annual meetings. Collaborators from health and education were also consulted in preparation of this application. Unanimously these meetings resulted in endorsement of the need for this research, a lack of evidence about the impact of health on the school lives of their patients, and how a new assessment and data collection could benefit clinical practice, service development and evaluation. DisseminationThere are four key audiences for this research: Young people, health professionals, education professionals and academics. A study website will be available to all for research findings, events and progress. - Young people will help disseminate the research, and findings will be presented at forums aimed at young people.- Healthcare audience will be addressed at three national and international conferences and through excellent links with local clinical collaborators.- I will include education professionals by hosting an event with Leeds City Council and attending the West Yorkshire head teacher's forum. I will join two steering committees developing policy for supporting young people with long term illness in schools.- For academics I will publish a minimum of four high quality papers from the workstreams and present at local, national and international conferences.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE