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Ask those who know – people with intellectual disabilities contribute to research
During the pandemic, people with intellectual disabilities had no opportunity to influence their isolated situation. Now they are helping researchers at Linköping University to transform future crisis preparedness through two projects that also promote healthy lifestyles.
In a new project at Linköping University, funded by Forte, researchers are examining how people with intellectual disabilities (ID) can be more involved before and during societal crises – in close collaboration with representatives of the target group.
Previous research at the university has shown that people with ID became both isolated and excluded during the COVID-19 pandemic, as the Public Health Agency’s recommendations were applied as mandatory rules in group homes and supported housing. They were given no opportunity to influence their situation. Visits from friends and family were not allowed during certain periods. Activities, daily programs and shared spaces were closed down, often without explanation. House meetings were cancelled without accessible digital alternatives being offered.
– No blame on staff, who did their best in a difficult situation, but our research shows that people with ID were not included in the decisions that were made, even though they have a legal and UN-established right to be, says Kristin Alfredsson Ågren, senior lecturer in occupational therapy at Linköping University.
The lack of participation and adapted information led to increased loneliness for a group that already has limited social networks. Several described it as if society had reverted to the old institutional care system.
Films show how people with ID can be included in crisis preparedness
In the project, Kristin and her colleagues, together with people with ID, are producing films as educational material. The films will be launched in autumn 2026 and are aimed at the target group, professionals and decision-makers. The idea is that the films will make use of the findings from their previous studies on the effects of the pandemic.
– We are developing accessible material to show how people with ID can be more active and included in crisis preparedness, for example when creating emergency kits and preparing for power outages, Kristin explains.
During the pandemic we were given restrictions, such as not being allowed to receive visitors. Many felt overruled.
Markus Petersson
Vice ordförande i Inre Ringen Sverige på Riksförbundet FUB
FUB: “The project strengthens the group’s participation”
Markus Petersson is vice chair of Inre Ringen Sweden, a network and meeting place within the National Association FUB – for children, young people and adults with intellectual disabilities. He is critical of how people with ID were treated during the pandemic and sees the research project as an important step toward strengthening the group’s participation before and during societal crises.
– During the pandemic we were given a lot of restrictions without legal support, such as not being allowed to receive visitors. Many felt overruled. In addition, the information was very inadequate. It was not easy to understand and also came long after the so-called general information, he says.
Development of an app aims to reduce vulnerability
At Linköping University, another research team is running a project in which people with ID are also involved. Here too, the aim is to reduce the group’s vulnerability. Together with professionals in social services and UX designers, they will develop a health-promoting app for young people with ID. The app aims to address the fact that young people with ID generally have poorer health than their peers, particularly in terms of increased sedentary behaviour and less healthy eating habits.
– We know that people with ID have significantly higher mortality from lifestyle-related diseases, even though many of these conditions are largely preventable with the right support, says Ulrika Müssener, project leader and associate professor of public health and social medicine.
She notes that the group is often marginalized and rarely benefits from health-promoting initiatives, despite great needs.
– Our hope is that an adapted app can contribute to healthier eating habits and increased well-being for a group that has long been neglected in society and in welfare research.
The hope is that the app will support both health and social relationships.
Ulrika Müssener
Associate professor in public health and social medicine, Linköping University
Users need to be involved in development
Kristin Alfredsson Ågren, who is also part of the app project, showed in her doctoral thesis in 2020 that digital use among people with ID is lower than in the general population and that the group risks becoming even more excluded as digitalization increases in society.
– That is why it is particularly important that this research is carried out in collaboration with people with ID, so that we can make the app as user-friendly, appealing and clear as possible, she says.
The project group, consisting of the research team, social services professionals, people with ID and IT developers, meets regularly for workshops. Discussions range from the technical design of the app to what quality of life and health mean from the group’s own perspective.
– It is clear that social interaction matters more than the activity itself. Many want to be physically active, but above all together with someone and in ways they understand, feel capable of and find enjoyable. The hope is that the app will support both health and social relationships, says Ulrika.
It is particularly important that this research is carried out in collaboration with people with ID.
Kristin Alfredsson Ågren
Senior lecturer in occupational therapy, Linköping University
“Nothing about us without us”
The researchers will conduct a randomized controlled trial, measuring how use of the app affects, for example, physical activity, blood pressure and quality of life. The idea is also that it can be used by care and support staff working with the group.
– Many people with ID need lifelong support, so it is important that staff also understand the importance of healthy lifestyles and are given better opportunities to work in a health-promoting way through a digital intervention, says Ulrika.
Both Kristin and Ulrika emphasize that it is a natural and important part of the work to involve people with ID concretely in the research, following the principle “Nothing about us without us.” However, this also places higher demands on researchers to work more thoroughly with clarity and adaptations, such as visual supports.
– In recent years, it has become more common for people with ID to be co-creators both during the research process and in presenting the results. This increases the relevance of the research, says Kristin.
Christina Heilborn, secretary general of the National Association FUB, welcomes both research projects.
– During the pandemic, digitalization in society advanced rapidly, but unfortunately digital exclusion among people with ID was reinforced. It is positive that new ways are emerging to counter exclusion, promote healthy lifestyles and increase inclusion in crisis preparedness, she says.
UN Convention on the Rights of Persons with Disabilities
The Convention on the Rights of Persons with Disabilities was adopted by the UN General Assembly in 2006 and has been in force in Sweden since 2009. Its purpose is to ensure that all human rights also apply to persons with disabilities.
A fundamental principle is that persons with disabilities should be treated with respect for autonomy and have the freedom to make their own choices. The right to active participation in decision-making is often described as the heart of the convention. The slogan “Nothing about us without us” expresses that decisions affecting a group should not be made without their participation.
The convention states that the state, regions and municipalities must always involve persons with disabilities – through the organizations that represent them – when developing new legislation and guidelines that affect their lives.
Source: Funktionsrätt Sverige
TEXT: Tomas Nilsson (english translation by Forte)
