YOUNGSTARS1
Young people with type 1 diabetes
- Topic
- Health promotion
- Focus
- Diabetes; Type 1 diabetes
- Method
- Co-researchers, Photovoice
- Duration
- March 2021 – March 2022
- Status
- completed
- Location
- Vorarlberg
- Funding
- PPIE
What is the project about?
Type 1 diabetes (T1D) is a complex condition that requires constant monitoring and involves making many decisions. Living with T1D means managing blood sugar levels, injecting insulin and being mindful of what you eat. Young people living with T1D face significant challenges and are often unable to suggest ways to improve their situation themselves.
In YOUNGSTARS1, young people living with T1D become active partners in the research process, from data collection to data analysis. The young people tell their stories of living with T1D by documenting their daily lives through photos and videos. They then discuss their needs, interpret the collected data and draw up an action plan for decision-makers. In this way, for the first time, young people are shaping diabetes care according to their own needs.
What is the goal of the project?
The needs and daily lives of young people living with T1D are being documented and compiled into an action plan for decision-makers. The aim is to ensure that diabetes care for those affected can be tailored to their needs.
Who participates in the project?
Doctors
Diabetes counsellors
Researchers
Young people with type 1 diabetes
Patients
Politicians
How are participants involved in the project?
The young people share their stories of living with T1D by documenting their daily lives through photos and videos. They then discuss their needs, analyse the data they have collected, and draw up an action plan for decision-makers.
How are participants recruited for the project?
About diabetes advisors, Diabetes Self-Help Vorarlberg, doctors
What are the results of the project?
The result was an action plan comprising nine concrete steps to improve the situation for young people with T1D. The measures and requirements identified in collaboration with the young people serve as the starting point for concrete actions or further research activities. At the same time, however, it also became clear what resources the young people had already built up in the course of their illness and what had helped them to develop the skills needed to manage their condition. The interim findings and results were presented to a wide audience (e.g. at the Austrian Health Literacy Conference, the Long Night of Participation in Vorarlberg , and a poster at the EUPHA (European Public Health Association). In addition, the magazine ‘Gesundes Österreich’ published by the Austrian Ministry of Health reported on Youngstars1, and a Ministry of Health guide to health information cited the project as an example of good practice. Various daily newspapers also reported on the project (DER STANDARD, Die Presse; VN Nachrichten).
What value and impact has the project achieved?
By presenting the project in various contexts, some of the co-researchers were able to network with other TD1 projects, such as a peer-to-peer project for children and young people from Ukraine or the diabetes self-help organisation in Vorarlberg. The co-researchers presented the project at a stakeholder dialogue attended by decision-makers from the state and healthcare providers in Vorarlberg, at the Long Night of Participation in Vorarlberg, and at a team meeting of the paediatric and adolescent department at Dornbirn Hospital. Friendships and peer support also developed among the Youngstars. The project helps young patients to make their voices heard, to work scientifically, to communicate and network with one another, and to advocate for their needs. The young people’s participation was an enormous asset to the research. It was impressive to learn how much expertise they have built up in managing their condition.
What publications have emerged from the project?
Project lead
Katrin Paldán, FH Vorarlberg, Forschungszentrum Nutzerzentrierte Technologien
Project website
https://www.aks.or.at/youngstars1
Cooperation partners
aks Gesundheits GmbH, Kristian Ganahl, MA