Diabetes control in UK children and young people is poor compared with other EU countries, especially in more deprived and “marginalised” families. Across the UCLPartners region only 13% of children with diabetes have HbA1c levels under 7.5% – compared with 34% of German children. Poor HbA1c control translates into significantly increased risk of complications. The planned move to community-based care for diabetes in the region provides a unique opportunity to make services more responsive to patients’ needs, especially where empowerment and engagement is low, and to improve outcomes.
This project is systematically assessing the views and experiences of “marginalised” children and young people with diabetes, and feeding these data back to service providers and commissioners. Young people from African and south Asian ethnic groups are being targeted, because these groups have been shown to have poorer diabetes control despite similar deprivation levels. A participatory approach is being taken and the project team works collaboratively with children and young people and their families to capture the patient voice.
A systematic review first synthesised existing qualitative research on living with and managing diabetes, before the team set about collecting new qualitative data on children and families’ experiences with diabetes and diabetes care, and established support groups to work in-depth with children, young people and families. Co-designed activities are being run to bring together children, young people, families, health professionals and other key stakeholders to share and prioritise solutions. The results of this project will benefit patients by ensuring that new developments in diabetes services for children and young people are responsive to the needs of children.
Principal investigator: Professor Angela Harden, University of East London
Partners and collaborators involved: University of East London; Institute of Education; Newham University Hospital; Newham Clinical Commissioning Group; London Borough of Newham; Camden Clinical Commissioning Group; London Borough of Camden.
Start date: March 2014
Watch a short film entitled Co-designing Diabetes Services with Children and Young People