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

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 re-quired in addition to providing emotional support to parents and facilitating parent support networks.