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Background: Teachers in mainstream schools are supporting an increasing number of children and young people (CYP) with long-term conditions, many of which, such as rheumatic and musculoskeletal diseases (RMDs), are invisible in nature. Previous research has shown that teachers are inadequately equipped to support these CYP, and thus require practical guidance, training, and supervision to support CYP with invisible illnesses.[1] Objectives: To co-create a pack containing tips, strategies, and information for teachers on how to support CYP living with invisible illnesses in school. Methods: A multi-stakeholder group comprising CYP, families (parents, carers, and siblings), healthcare professionals, and education providers were involved. The process was facilitated by RAiISE, a UK-based patient and caregiver-led organisation for CYP with invisible illnesses. In three workshops between October 2015 and August 2019 held at Alder Hey Children's NHS Foundation Trust in Liverpool, UK, and one follow-up survey with CYP (n=17), topics for inclusion were identified and prioritised, before pack content was co-created with the multi-stakeholder group and RAiISE executive leadership team. Results: The first workshop and survey focused on the unmet needs and experiences of CYP with invisible illnesses. CYP called for wider education of invisible illnesses amongst the entire school community (staff and students), underpinned by tailored support for individual CYP. During the second workshop, a series of interactive discussions led to the development of 'top tips' for teachers, focused on effective communication and addressing practical issues. In the third and final workshop, stakeholders were involved in reviewing and refining the draft content in the prototype pack. Following digital layout, the RAiISE School Pack (digital and print) was launched at a live, interactive event in Liverpool, UK in March 2023. The pack provides practical guidance and tips for teachers (Table 1). The pack is freely available online at raiise.co.uk/school-pack. Conclusion: The RAiISE School Pack was co-created with multiple stakeholders as an education and empowerment tool to address an unmet need for CYP with invisible illnesses in school. To accommodate existing pressures on education providers, the pack was intended to be a disease-agnostic resource for invisible illnesses, including RMDs, given the commonalities in unmet needs and priorities identified for and by CYP. Wider rollout and further research are required to evaluate the utility of the pack in practice. REFERENCES: [1] Hinton D and Kirk S. Health Soc Care Community 2014;23:107-120. Acknowledgements: The authors thank everyone who was involved in co-creating the RAiISE School Pack. The authors also thank Sharon Hicks and C3 Marketing for their digital and printing services. Disclosure of Interests: Simon Stones Share options in Envision Pharma Group, a medical communications agency that works with pharmaceutical companies., Employee of Envision Pharma Group, a medical communications agency that works with pharmaceutical companies., Sophie Ainsworth: None declared, Sammy Ainsworth: None declared, Robyn Challinor: None declared, Marie Clapham: None declared, Jennifer Preston: None declared, Laura Whitty: None declared.
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Stones et al. (2024) studied this question.
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