Researchers Empower Young People with Intellectual Disabilities

A new initiative led by researchers from the Universitat Oberta de Catalunya (UOC) aims to enhance the self-determination of young people with intellectual disabilities (ID). This project seeks to empower individuals aged 16 to 22, helping them make decisions, set goals, and trust their abilities. With between 0.7% and 1.5% of individuals in developed countries affected by ID, the initiative addresses a significant population need, particularly in Spain, where it is estimated that over 400,000 people are impacted.

The project, titled “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,” was published in the journal PLOS One. According to Sergi Fàbregues, a researcher at the UOC’s eHealth Center, many families struggle to fully understand self-determination, often confusing it with autonomy. This initiative aims to clarify the concept and provide practical strategies for families and professionals.

Researchers will recruit families with adolescents who have mild to moderate support needs attending special education schools. The study will unfold in three stages: initial structured interviews, a mapping stage to identify practical strategies, and the design of a family-centered intervention.

The methodology includes qualitative and quantitative approaches, such as structured interviews utilizing the photo elicitation technique. Families will document situations that enhance their children’s self-determination, which will be later discussed with the research team. Fàbregues emphasized the importance of family involvement in fostering self-determination, stating that “their families help them develop skills such as problem-solving, defending their opinions and setting goals.”

Research indicates that increasing self-determination can significantly improve the quality of life for individuals with ID. Areas affected include academic performance, emotional well-being, and future employment prospects. Fàbregues noted that fostering self-determination can help young people make informed decisions and understand the consequences of their actions.

Examples of effective strategies include creating supportive environments at home, offering choices in daily activities, and encouraging personal goal-setting. These approaches help children develop autonomy and confidence in their decision-making abilities. The initial interviews have already commenced, with 15 families participating thus far. The aim is to compile a practical guide for families over the next year.

By raising awareness of self-determination and its importance, this research hopes to support families in understanding and nurturing this critical skill. The next phase will involve testing the intervention’s effectiveness and gauging family reception. This research has been registered with the Open Science Framework, ensuring transparency and accessibility.

The project not only includes UOC researchers but also collaborates with institutions such as Memorial University of Newfoundland in Canada, Universidad del Norte in Colombia, and several Spanish universities, including University of Navarra, University of Zaragoza, Comillas Pontifical University, University of Deusto, and University of Barcelona. This collaborative effort underscores the international commitment to enhancing the lives of young people with intellectual disabilities through improved self-determination.