6215 School exam experience in young people with long-term health conditions – a youth-led project by the great north youth collective

Objectives The Great North Youth Collective (GNYC) runs a Youth Forum (YF) at a tertiary hospital in the North East of England to improve services. During summer 2022, members of the group expressed concern that schools seemed to consider issues caused by acute illness more favourably in exam periods than issues caused by long-term health conditions. Members of the YF were encouraged to turn frustration with their personal experience of sitting exams into a research question. A youth-led research project was undertaken to explore wider experiences of young people (YP) with long term health conditions when sitting exams. Methods GNYC Youth Forum members are aged 15–20 years (mean 17.8 years, 5 female, 3 male) and have experience of receiving medical care at the Great North Children's Hospital Members were geographically diverse, meaning all meetings took place online. During multiple online sessions, the group devised the project, designed and iterated on a questionnaire and developed a delivery strategy. The questionnaire was piloted with other advisory groups (Young Person's Advisory Group North England and Your Rheum) and further changes made. This was distributed by members of the forum and related groups via social media, with posters placed within the Trust. Data were then analysed by YF members, supported by GNYC facilitators. Results Meeting online, supported by facilitators and using mediums such as Google Jamboard, was shown to be a successful way of delivering a youth-led research project. Figures 1 and 2 show how jamboard was used during design and reflection stages of the project. 19 YP completed the survey. 94% (17/18) required adjustments for exams, but nearly a quarter (4/17) did not receive all adjustments. Qualitative analysis of free text answers suggested key themes to YP's exam experiences, including the positive and negative impact exam adjustments can have and a lack of support for YP with long term health needs completing exams. Conclusion This work describes a project entirely led by a group of YP. Facilitation by professionals experienced in both research delivery and collaborative working with YP was key to the success of this work. Challenges included issues with promotion of the survey, which resulted in low completion rates and limits the generalisability of findings. YF members reported a positive experience completing the project, and particularly in analysing their data. Results suggest that exam access is a challenge for YP with long term health conditions and more work in this area would be beneficial.