04 December 2023

Young adults with intellectual disabilities are involved in designing a digital tool that will help them feel better. According to researcher Ulrika Müssener, it goes without saying that users should be asked what they need and want.

Young adults around a big table working with colourful papers.What features should a digital well-being tool have? In various exercises, young adults with intellectual disabilities have told researchers what they think. Photo credit Foto: Ulrika Müssener

How long should the texts be? Should videos be included? A new research project gives young adults with intellectual disabilities an opportunity to voice their ideas on the appearance and function of a digital well-being tool.

“Not a lot is being done for this group, although it’s known that they in general have poorer health. They find it difficult to adhere to information on health-related life skills published by the healthcare sector,” says Ulrika Müssener, occupational therapist and senior associate professor of public health science.

Feeling better can be about increasing physical activity and healthy eating. Social interaction and a sense of community have also emerged as important pieces of the puzzle.Woman sitting on a chair.Ulrika Müssener. Photo credit Charlotte Perhammar

“These young adults are amazing and competent individuals, and working with them is really an asset. They know a lot about themselves and their own health, and have come up with interesting ideas and suggestions. We researchers initially thought about well-being mainly in the form of health-related life skills. But when we asked the participants what they want, they mentioned meeting with people in a similar situation, dating and doing things to feel good together with others. A sense of community is important to them in relation to health-related life skills, and we hadn’t thought of that at all, initially.”

Exactly what type of digital tool will emerge from this depends on what suits the users. The researchers are currently leaning towards an app that can also be used on a Kindle or a computer. It is estimated that it will be finished in two years’ time, after which an effect study will be carried out.

To Ulrika Müssener, this way of working is about being close to reality and the target group. Research also shows that interventions may be more effective when users are involved in their design. She also highlights the ethical aspect:

“Sadly, this is a marginalised group in society. Involving them in research is a way of letting them grow.”


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