Summary
Guy's and St. Thomas' NHS Foundation Trust's Youth Empowerment Skills (YES) programme works with young people with diabetes, who have low levels of engagement with diabetes care, from socially deprived areas in South London. YES was co-designed and co-delivered by young people and aims to foster self-confidence and strengthen engagement with diabetes care. The programme contrasts with traditional education models for diabetes as it uses novel educational strategies: key features include outreach work and innovative learning styles, including simulations, peer-led sessions and fun activities (such as climbing or going out for a meal). It uses social media to keep young people in touch with each other, encouraging social networking and the delivery of peer-to-peer support. A clinically important fall in HbA1c has been seen in participants so far.
Results
The youth worker has had contact with 71 young people through the project. Most of these referrals were directly from clinics, with members of the diabetes team identifying patients not engaging with their diabetes care. Additional referrals came from parents, schools and local youth centres. Mean age of the participants was 17 ( ± 1.60) years, eight were male and seven female. They all attended the full programme except for one who became unwell. The mean pre-YES HbA1c was 11.3% (± 2.8) and post-YES it was 9.8% (± 2.5) (p <0.02), with two thirds of participants achieving a clinically significant reduction in their HbA1c (± 0.5%). In terms of participant satisfaction, all participants would recommend the programme to others and 12 participants rated the usefulness of programme for their day to day life as 5/5, with the other three rating the impact as 4/5.
Challenge
Adolescence is when a person's identification with a disease is formed. This is a high risk period in which diabetes is often poorly controlled and there is a high incidence of unplanned hospital admissions. In addition, in this period many young people acquire maladaptive coping styles that can have enduring harmful consequences. In the local population of 232 young people between age 14-21, 35 patients were not attending any diabetes care appointments or retinal screening. The remaining 192 patients attended at least one appointment over the last two years however, 26% missed more than 50% of their appointments. The team recognised that a new approach was needed that would reach out and appeal to young people.
Objectives
To co-design and co-deliver with young people an innovative model of education to enhance engagement, promote positive coping styles and resilience, provide social resources and support, and improve health outcomes for young people with diabetes.
Solution
The team ran four focus groups with young people, facilitated by a young adult with type 1 diabetes and a youth worker, to consider their thoughts and experiences to develop the content and structure of the programme. Three main themes emerged: the programme should be delivered in a youth friendly environment - not in the hospital; sessions needed to be interactive and give young people the opportunity to meet together to share experiences; and some sessions should be delivered by people with diabetes and not just health care professionals. The name Youth Empowerment Skills (YES) emphasised that the programme was not just about diabetes. A key feature of the programme was to identify the young people and to work with them so that they would feel interested and confident in joining. To this end the programme begins with outreach work from a community youth worker, who identifies disengaged young people and works with them to develop their interest in the programme. This role is pivotal as the youth worker facilitates the group to develop social cohesion within the group. The content of the programme needed to be based on a more interactive social form of experiential learning and needed a holistic health approach: important adolescent health topics such as sexual health, pregnancy and eating disorders were included. Simulation elements of the programme were delivered by actors to replicate life-like scenarios where they experienced scenarios such as treating an episode of severe hypoglycaemia and wearing a body suit that restricted their physical functionality. There were also "fun" activities to build confidence such as rock climbing. Peer-to-peer delivery was important with some sessions being led by other young people with diabetes. The sessions were held in a community-based youth centre during the school holidays, over a three-day period. In between sessions and after the programme peer support and interaction was maintained through a WhatsApp group and a closed Facebook page.
Learnings
The YES programme's youth worker continues to support the graduates of the programme and they now organise their own meetings and activities and help in peer delivery. They continue to communicate and interact with each other in an ongoing social network for support. This outreach activity is developing robust systems to engage young people with the YES programme – and the social bond that has emerged seems to have had a very powerful impact on the lives of these young people.
Evaluation
The evaluation of the YES programme began with the initial focus groups followed through with assessment of the pilot. Reach, utility and acceptability were measured, but the most powerful part of the evaluation was the interviews with the participants a few months after the programme, conducted and analysed by independent researchers.
