Researchers from the Universitat Oberta de Catalunya (UOC) are launching a project aimed at enhancing the self-determination of young people with intellectual disabilities (ID). This initiative seeks to empower individuals aged 16 to 22 with improved decision-making and goal-setting skills, fostering greater independence and self-confidence.
Intellectual disability affects an estimated 0.7% to 1.5% of the population in developed countries, translating to more than 400,000 individuals in Spain alone. The term encompasses significant limitations in intellectual functioning and learning that manifest before the age of 18, influenced by genetic, environmental, and sociocultural factors.
Innovative Research Methodology
The study, 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,” published in PLOS One, introduces an innovative methodology aimed at creating an evidence-based intervention. The research will provide families and professionals with effective strategies to enhance the self-determination of young people with ID.
To implement this research, the team will recruit families with an adolescent aged 16 to 22 who has mild to moderate support needs and attends a special education school. The project comprises three stages: structured interviews with families, mapping strategies to boost self-determination, and designing a family-centered intervention.
“Many families report not knowing or not fully understanding the concept of self-determination, often confusing it with autonomy,” explained Sergi Fàbregues, a researcher at the UOC’s Nutraliss group. The initial interviews will include a photo elicitation technique, where families will take pictures of situations that support their children’s self-determination, facilitating a deeper discussion of specific strategies.
The Role of Family in Self-Determination
The research highlights the critical role families play in enhancing self-determination among young people with ID. From early childhood, parents significantly influence their children’s behavior and interactions, shaping their abilities to solve problems, advocate for themselves, and set personal goals. Fàbregues emphasized the importance of family support, stating, “They create environments that can either support or restrict their self-determination.”
Effective strategies identified include arranging home spaces to foster autonomy, providing choices about daily activities, and encouraging goal-setting. Families may also enhance their children’s self-determination by expressing praise for achievements, reinforcing positive behaviors such as completing household tasks independently.
After the initial interviews, families will document their experiences through photographs, which will be discussed with the research team. This collaborative approach aims to identify practical strategies that can inform the development of the intervention.
The project is already underway, with 15 families interviewed to date. The goal is to create a practical guide that families can easily understand and implement. Fàbregues noted the necessity of clarifying the concept of self-determination to families, helping them support their children’s growth in this area over time.
The next phase involves evaluating the effectiveness and reception of the proposed intervention among families. This research initiative is registered with the Open Science Framework and aims to contribute valuable insights into enhancing the lives of young people with intellectual disabilities.
As the study progresses, it seeks to bridge gaps in understanding and support for families, ultimately fostering a more inclusive environment for those with intellectual disabilities.
