Between 0.7% and 1.5% of people in developed countries are estimated to suffer from intellectual disability (ID). In Spain, this is equivalent to over 400,000 people. The term intellectual disability refers to a set of significant limitations in intellectual functioning and learning that manifest before the individual's 18th birthday as a result of genetic, acquired (congenital and developmental), environmental and sociocultural factors.

A study led by the Universitat Oberta de Catalunya (UOC) is now seeking ways to empower young people and adolescents with ID by boosting their self-determination "to enhance their decision-making and goal-setting skills, act independently and purposefully and trust their own abilities," said Sergi Fàbregues, a researcher at the Nutrition, Food, Health and Sustainability (Nutraliss) group at the UOC’s eHealth Centre.

The study, Development of a family-centered intervention to support self-determination in adolescents and young adults with intellectual disability in home environments: Protocol for a multistage mixed methods design, is an innovative international research project that will lead to the design of an evidence-based intervention, providing the families of young people and adolescents with ID and the professionals who work with them with strategies to enhance their self-determination.

To carry out the study, the researchers will recruit families with an adolescent between 16 and 22 years old with intellectual disability and mild or moderate support needs who attends a special education school. The study, which will employ both qualitative and quantitative methods, will be carried out in three stages: an initial stage involving structured interviews and using the photo elicitation technique with families to find out how they support self-determination at home; a mapping stage in which the young people, families and professionals involved will identify possible practical strategies to boost their self-determination at home, and a final stage involving the design of a family-centred intervention.

"Several studies have shown that increasing self-determination improves the quality of life of people with ID in areas such as academic performance, emotional well-being and employment prospects. On a personal level, self-determination fosters their autonomy and helps them make decisions, set goals and gain a better understanding of the consequences of their actions. All this can only be achieved with the family's crucial involvement and appropriate support," said Fàbregues, a UOC researcher and leader of the project, which includes researchers from institutions such as Canada's Memorial University of Newfoundland, Colombia's Universidad del Norte, and Spain's University of Navarra, University of Zaragoza, Comillas Pontifical University, University of Deusto and University of Barcelona.

The family environment has been shown to be crucial in enhancing self-determination among young people and adolescents with intellectual disability. Parents shape their children's behaviour and interactions from early childhood, a role that is particularly important for individuals with ID: "Their families help them develop skills such as problem-solving, defending their opinions and setting goals. They also make decisions regarding their children's learning opportunities and create environments that can either support or restrict their self-determination. In the case of young people and adolescents with ID, family plays a particularly significant role, because these individuals face barriers not encountered by their peers," said Fàbregues, who is also a member of the UOC's Faculty of Psychology and Education Sciences.

Examples of strategies that can be helpful in fostering the self-determination of individuals with ID include arranging spaces at home to enhance autonomy; giving them choices, such as what to have for a meal or where to go on a family outing; allowing them to make everyday decisions; helping them set personal goals, whether in relation to household chores or for work or education; and expressing satisfaction and praise for their achievements, such as tidying their room without prompting, making a meal or making a decision for themselves.

After the first interview, families will be asked to take photographs of situations that help increase their children's self-determination, which they will later explain to the research team. "We use this technique – photo elicitation – because, while the first interview provides a general overview, the photographs help us discuss specific examples. This is very useful for identifying specific strategies that can later be used to design the intervention," said Fàbregues.

The project has already started, with 15 families interviewed so far. The plan is to design an intervention proposal in the form of a practical and family-friendly guide over the coming year. "We want to publicize these strategies, as many families report not knowing or not fully understanding the concept of self-determination, which is often confused with autonomy. Another goal is therefore to help them understand the true meaning of self-determination, so that they can support their children in further developing this ability over time."

The next step will be to carry out a new study to verify the effectiveness and feasibility of the intervention and its reception by families. The research project has been registered in the Open Science Framework (https://doi.org/10.17605/OSF.IO/M94DX).

This research project is aligned with the UOC's mission on Education of the Future and contributes to Sustainable Development Goals (SDGs) 3, Health and Well-being, and 10, Reduced Inequalities.