The project was led by the Association for Young People’s Health (AYPH), working closely with Race Equality Foundation and RCPCH &Us to maximise participation across the targeted communities. It included a scoping review (see detail below) and engagement work with young people diagnosed with Type 1 diabetes and their families.
The focus was on children and young people with Type 1 diabetes from Black and minority ethnic communities, those living in deprived areas and those with co-occurring neurodiverse conditions and/or a learning disability. These groups were identified to align with the Core20PLUS5 approach.
Findings from the scoping review
Understanding the perspectives of young people, and involving them in the service design process is crucial for creating offerings that effectively cater to the populations targeted. The existing limited efforts to engage youth in improving access to diabetes services for those from more challenging backgrounds and unique life experiences have yielded similar findings as those for all young people accessing Type 1 diabetes services, as well as young people with other long term conditions.
Specific to diabetes, and perhaps for groups experiencing more marginalisation, are the messages around heightened stigma, and cultural pressures in relation to different food cultures and how these interact with self-management of diabetes and ability to respond to clinic instructions.
Themes from the engagement project
Forty-seven young people from all four UK nations took part in engagement sessions and interviews. Their feedback highlighted ways to help services engage them better in managing their Type 1 diabetes and taking agency in their care.
- Reducing stigma and raising awareness about diabetes
- A love/hate relationship with technology
- Holistic and accessible care
- Identity and independence – having a “normal” life
- Support for wellbeing and mental health
Recommendations from young people
Many of the things young people highlighted stress the importance of youth-friendly communication and clear processes for transition as young people get older.
The young people suggested how Type 1 diabetes care offered to them could be improved to help reduce access barriers:
- Make technology more inclusive
- Produce youth-led information about diabetes
- Increase engagement opportunities for young people and their families
- Services to have a strategy to engage young people and families that they don’t hear from
- Increase public awareness about Type 1 diabetes in all the spaces where young people are
Further information is available in the engagement report on the AYPH website. We encourage clinicians and colleagues working with children and young people with Type 1 diabetes to read the report, share within their teams and networks, and consider how they can incorporate these recommendations into their services.