Having a son or daughter with an intellectual disability transition to adulthood: A parental perspective

Accessible Summary Becoming an adult can be a difficult time. We wanted to find out what it is like for parents who have a son or daughter with an intellectual disability. Ten parents were interviewed. They were asked questions about being in their family, helping their son or daughter, and support services for people with an intellectual disability and their parents. Things that mattered the most to parents: Many parents were confused about what to do when their son or daughter became eighteen years old. They were worried about the future. Independence was important. Parents found it hard sometimes helping their son or daughter to be more independent. Getting more help and talking to other parents. Services and staff can help by: Working together in a better way to help parents. Setting up support groups for parents to talk together and learn from each other. Writing better plans with every person with an intellectual disability. Abstract Background Transition to adulthood is an important time for young people and may be a particularly challenging time for people with intellectual disabilities. However, there has been little research in the UK regarding the experiences of parents who have son or daughter with an intellectual disability transitioning to adulthood. Method The study used interpretive phenomenological analysis to explore the lived experiences of ten parents who had a son or daughter (aged 18–25 years) with an intellectual disability. Half of the sample also had a diagnosis of autism. Results Three superordinate themes were generated from the data: (a) Transition: The Good, the Bad and Unknown; (b) Striving for Independence; and (c) Supporting the Supporters. Parents experienced many difficulties and uncertainty related to their role, their son/daughter's independence, navigating services for their son/daughter and accessing support for themselves. Conclusions Increased collaboration and consistency from statutory services is required in addition to providing emotional support to parents and facilitating parent support networks.