Researchers Launch Initiative to Empower Young People with ID

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 focuses on empowering adolescents aged 16 to 22 with skills that promote independence and decision-making. In developed countries, the prevalence of intellectual disability is estimated to be between 0.7% and 1.5%, impacting over 400,000 individuals in Spain alone.

The term intellectual disability encompasses significant limitations in intellectual functioning and learning that typically manifest before the age of 18. These challenges can arise from genetic, environmental, and sociocultural factors. The project, detailed in the paper 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 PLOS One.

Empowering Families Through Research

Led by researcher Sergi Fàbregues, the initiative seeks to clarify the concept of self-determination for families of young people with ID. According to Fàbregues, many families misunderstand self-determination, often confusing it with autonomy. The research will develop an evidence-based intervention designed specifically for families and professionals to enhance the self-determination of young individuals with ID.

The study will recruit families with an adolescent who has mild to moderate support needs and attends a special education school. It employs a mixed-methods approach that includes qualitative and quantitative research. The research will unfold in three stages: structured interviews with families, a mapping phase to identify practical strategies for enhancing self-determination, and the design of a targeted intervention.

“Several studies have shown that increasing self-determination improves the quality of life for individuals with ID in areas such as academic performance, emotional well-being, and employment prospects,” Fàbregues explained. He emphasized that family involvement is crucial for fostering these skills.

Strategies to Foster Self-Determination

The family environment plays a vital role in enhancing the self-determination of young people with ID. Parents can significantly influence their children’s development by helping them cultivate essential skills such as problem-solving, decision-making, and setting personal goals. For young individuals with ID, who often face distinct challenges, family support can make a substantial difference.

Examples of effective strategies include creating supportive home environments that enhance autonomy, allowing children to make choices about meals or activities, and encouraging them to set personal goals. Fàbregues noted that positive reinforcement for achievements—such as completing chores or making independent decisions—can also support their self-determination.

The initial interviews will be supplemented by a photo elicitation technique, where families will document situations that contribute to their children’s self-determination. This method allows researchers to gather specific examples, aiding the design of the intervention.

The project has already commenced, with 15 families interviewed to date. Over the coming year, the aim is to develop a practical guide that families can use to understand and support self-determination. “We want to clarify the concept of self-determination for families, many of whom report confusion with autonomy,” Fàbregues stated.

Future plans include evaluating the intervention’s effectiveness and its reception among families. The research project is registered in the Open Science Framework, ensuring transparency and accessibility to the wider community.

Through this initiative, the UOC researchers hope to provide families with the tools and knowledge necessary to support their children’s growth, fostering a greater sense of independence and self-determination for young people with intellectual disabilities.