Summary
The Our Lives Our Voices (OLOV) project was funded through the Empowering Young People Lottery Fund. It aimed to support and empower young people (11-25 years old) in Northern Ireland living with type 1 diabetes through confidence building, peer support, well-being programmes and improving relationships with healthcare professionals (HCPs). OLOV was led by young people, supported by Diabetes UK, and worked in partnership with local mental health organisations, AWARE and Action Mental Health (AMH). Following its success, funding was secured for UK-wide delivery of a similar youth-based project called ‘Together Type 1’.
Innovation
It has been identified that those between 11-25 years old, and living with type 1 diabetes, are three times more likely to experience psychological problems than those without diabetes because of a gap in information and peer support. At the time of application there were about 1,890 young people in this age group. It was anticipated that the project would reach 569 young people and recruit at least 25 volunteer young leaders. Feedback from young people in this demographic showed that feelings of isolation were significant, demonstrating a need for opportunities to meet more people their age with diabetes. In addition they wanted activities that were geographically dispersed, inclusive and considerate of cultural background to allow a wider circle of community support. OLOV aimed to create a safe space where they could talk, learn and feel part of a community that was accessible when they needed it. The project was designed to empower them to take active roles in managing their condition and find solutions to the wider issues that affect the young diabetes community across Northern Ireland. It focused on improving confidence, developing peer support networks, increasing well-being and improving engagement with HCPs. Similarly, it sought to improve HCPs’ interactions with young people. The young people were the best people to identify and develop relevant solutions for the gaps in their care. Over the last five years, OLOV has been led by young people, supported by Diabetes UK Northern Ireland and a dedicated youth coordinator and youth worker. It works in partnership with local mental health organisations AWARE and AMH. It has improved confidence and the emotional well-being of young people and created opportunities to meet other young people with type 1 and access peer support, as well as allowing them to become young leaders. It has also created better relationships with support networks and HCPs delivering diabetes care. OLOV was the blueprint for the subsequent ‘Together Type 1’ project, a nationwide young person’s programme from Diabetes UK.
Equality, Diversity and Variation
A young person’s personal, financial and cultural status impact their opportunities to access diabetes support. OLOV needed to create an environment that would be accessible to all, by providing support and activities in various formats. Monthly sessions were held online, allowing the young people access from their homes, work places or elsewhere. The relaxed format of sessions and different days and times allowed them to attend when they could. Tablets were loaned and delivered to those who required them, with the offer made to all of the young people. At project conception, online support was anticipated to be a minor part of outcome delivery. However, in year five, 50% of peer support activities were online. Incredibly, 94% of young people said they had had access to an online support network. Some young people with additional needs found online activities difficult, so OLOV offered face-to-face peer support activities, in-person well-being days and community events. All events were free to the young people and families, with support for transport. Community events were hosted locally so young people felt comfortable. Venues were physically accessible for all and politically neutral, where possible. All support and events had youth input and changes were made based on feedback.
Results
OLOV reached 784 young people and delivered 3,039 interventions through 326 activities. A total of 122 peer-support activities were delivered, connecting 336 young people (13% above target). All young people surveyed said events had provided a peer-support network, improved emotional well-being and provided space to discuss issues related to type 1 diabetes. The project improved well-being by empowering participants to increase their knowledge and skills around their diabetes self-management. Over the course of the project, young people contributed to: a new Northern Ireland-wide insulin pathway; Northern Ireland’s Mental Health Strategy Consultation; research at Queen’s University Belfast to create an international youth advisory panel investigating the impact of social media on young people with type 1 diabetes; the Diabetes Network for Northern Ireland, including sub-group for foot-care, inpatient care, pregnancy, young adults and patient education; Change Labs – workshops with HCPs designed to improve transition to adult care; one young leader joined the Northern Ireland Advisory Council, plus three young leaders presented to members of the Legislative Assembly at the All-Party Group about the challenges they faced living with type 1 diabetes. OLOV recruited 38 young leaders who delivered 110 activities.
User Feedback
Two focus groups were held in 2015 and 2016 with young people in Northern Ireland from rural and urban cohorts with different cultural backgrounds, as well as with 107 parents. Four areas of need were identified: confidence building; peer support; well-being, and relationships with HCPs. The project adapted to circumstances and feedback as it progressed.
Dissemination and Sustainability
The project was funded by the National Lottery Community Fund for five years, but it will have a lasting impact. People have remained involved in the wider work of Diabetes UK Northern Ireland and become volunteers for other work. Legacy pieces include the video ‘We are Type 1’, the ‘Belfast Exposed’ photography exhibit, plus a well-being resource booklet for young people. Diabetes UK Northern Ireland podcast (Let’s Tak Diabetes) had an OLOV takeover for three episodes. It has also laid the groundwork for Together Type 1, which runs for a further five years with funding from the Steve Morgan Foundation to Diabetes UK.
