Summary

To improve the overall clinic experience for young people with Type 1 diabetes and address issues with disengagement and poor glycaemic control in this group, Diabetes Scotland invited people aged 16-25 years old living with the condition to participate in developing a ‘Youth Engagement Toolkit’. The aim was to develop and deliver innovative youth engagement training and supportive materials for HCPs working in diabetes clinics in Scotland to encourage a more supportive and accommodating environment for youngsters at clinics. They were able to influence the content and direction of the toolkit and were supported to co-deliver workshops with HCPs, adding authenticity and ensuring meaningful participation. Young people were also encouraged to run local online groups to promote peer-support and shared learning. Initial feedback has been overwhelmingly positive. 

Results

The initial findings are positive and encouraging:

• 58 HCPs have been trained in youth engagement across 4 pilot sites
  
• 32 YP engaged and involved in developing, delivering, and evaluating the project
  
• Follow-up feedback shows HCPs are using the tools and YP appreciate opportunity for peer-support networks
  
• There are now a total of 45 YP in the youth groups across the 4 pilot areas 
  

Challenge

Young people (YP) encounter many physical, mental, and social changes whilst entering, experiencing, and exiting adolescence, and they often find themselves being forced to learn how to cope with decision-making responsibilities and independence. The way in which YP react and adjust to this and how they are supported to do so, can have a significantly negative impact on their life. Throwing Type 1 diabetes into the mix only exacerbates the problem. The key to achieving engagement and good outcomes for YP is to support and empower them with positive relationships and influences, and providing services which meet their needs. 

Objectives

To develop and deliver innovative youth engagement training and supportive materials to be used by HCPs working with YP in diabetes clinics in Scotland to improve the clinic experience for YP, and promote positive relationships between HCPs and YP. The long-term objectives are to increase attendance at clinic by YP, improve glycaemic control and outcomes for this group. 

Solution

A total of 22 YP aged 16-25 living with Type 1 diabetes were recruited from across Scotland to take part in the project. Funding from the Scottish Diabetes Group allowed this approach to be piloted in 4 diabetes clinics across Scotland over the period of 18 months. This recruitment process enabled us to engage YP with varying levels of engagement and experiences with diabetes services. Two full-time staff with youth work experience and knowledge in this field worked on this project to ensure proper youth participation, development, and meaningful engagement with YP. This was key towards allowing YP to gain the appropriate skills and develop confidence to engage better with this project. Ideas were developed at a series of group workshops and over the course of a residential weekend. The YP also participated in a number of team building sessions, which promoted a strong sense of connection amongst the group, and encouraged individuals to support each other. 
A range of tools were developed to be used by HCPs with YP in clinic which promote positive relationships and person-centred care, allow the YP to set their own agenda in their appointments, and make informed decisions about their diabetes care. One-day workshops were designed to provide HCPs with a clear understanding of the background to the toolkit and its potential application. YP were supported to co-facilitate these workshops offering authenticity to the day and give real-life examples of living with Type 1 diabetes as a young person. 

Learnings

It takes a huge amount of skill and theoretical knowledge to deliver this approach properly, and HCPs may take time to deepen their understanding of youth engagement and need high quality training and support with this. The toolkit and workshops delivered as part of this project were only the beginning of a much bigger picture of culture change. It has also been touched upon that for services to truly meet YP’s needs, service re-design may be required, which involves more input than this short-term funded project can offer. 

Evaluation

Ongoing evaluation will include biomedical parameters to track improvements with attendance of YP with services and the impact the toolkit may have on YP’s self-management of their Type 1 diabetes through HbA1c and DNA rates which will be recorded at 6m and 12m, and compared with baseline data. Follow-up qualitative feedback will be captured from HCPs on their changes to practice, and from YP on their clinic experiences.