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6745 Understanding the experiences of young people managing epilepsy and type 1 diabetes from groups more likely to face marginalisation
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6745 Understanding the experiences of young people managing epilepsy and type 1 diabetes from groups more likely to face marginalisation
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Journal Article
6745 Understanding the experiences of young people managing epilepsy and type 1 diabetes from groups more likely to face marginalisation
2024
Overview
ObjectivesTo better understand the perspectives and experiences of children, young people, and families from groups more likely to face marginalisation in relation to epilepsy and type 1 diabetes.MethodsScoping reviews of existing evidence and participation work with young people diagnosed with epilepsy or type 1 diabetes was undertaken. A partnership of organisations enabled reach to young people and families from groups whose voices may be missing from mainstream conversations about health and inequalities. The focus was to hear from young people from black and minority ethnic communities, those living in deprived areas and those with co-occurring neurodiverse conditions or learning disabilities. These groups were identified to align with NHS England’s CYP Core20PLUS5 health inequalities approach as well as filling gaps in knowledge about the needs of specific groups.Expert design of engagement activities and events, delivery by skilled engagement workers and effective support for young people have been key to the safe delivery of this work.Results95 young people were involved in the participation work across the two projects. This included young people from across the UK, of different genders, ethnicities and ages (from 11 months – 25 years). Little published evidence on the voice of children with Type 1 diabetes or epilepsy from communities that experience marginalisationwas identified in the scoping reviews highlighting the importance of the results of the engagement work. Young people’s feedback highlighted ways to help engage them better in managing their epilepsy or Type 1 diabetes and take agency in their health care.A clear theme was the lack of awareness about their conditions and the stigma and misunderstanding that this can lead to. Young people also highlighted the importance of accessible and simple technology alongside language and cost barriers that they can face when accessing technology.ConclusionThe work highlights the complex range of issues children and young people face in relation to their conditions and a need to avoid oversimplifying how these can affect groups of young people more likely to experience marginalisation. There is an amplification of the need for youth friendly care and a need for services to create new strategies to hear from children and young people from their communities that they don’t hear from.
Publisher
BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health,BMJ Publishing Group LTD
