Down syndrome studies; the transition from secondary school to adulthood: Experiences and life outcomes for youth with an intellectual disability and their families
Investigators: Fatma Haddad, Helen Leonard, Jenny Bourke, Jenny Downs, Katherine Bathgate, Keely Bebbington, Kingsley Wong, Yuka Mori
This project explored the challenges faced and outcomes achieved by young people with an intellectual disability as they moved from secondary school into adult life. There are likely to be major life changes for these young people as they move into adulthood with respect to work, where they live, who cares for them, how their health and therapy needs are managed and how they spend their days. This study involves young people with intellectual disability aged 16 years and over from four separate sources: i) Down syndrome NOW cohort in WA, (ii) the Queensland Centre for Intellectual and Developmental Disability’s ASK study; (iii) the Australian Child to Adult Development (ACAD) Study at the University of Sydney and (iv) the Australia-wide Rett syndrome cohort. Our data which we continue to use is sourced from the Down Syndrome Now study.
During 2018 we used our WA Down syndrome data to determine if high levels of autistic features in the cohort, as measured by both the Social Communication Questionnaire and the Developmental Behaviour Checklist - Autism Screening Algorithm, are associated with poorer or better outcomes for people with Down syndrome. Our outcome of interest was the young person's employment or day activity.
A paper published in 2018 compared parental well-being in parents with a child with one of three disorders: Down syndrome, Rett syndrome and CDKL5 disorder. Parents of children with Rett syndrome reported the poorest physical well-being, whereas emotional well-being was poorest among parents of children with the CDKL5 disorder. Compared with these generally more severe diagnoses, parents of children with Down syndrome had relatively better parental physical and emotional well-being. This finding indicates that the care burden on parental well-being may be greater with increasing levels of impaired motor and intellectual ability and greater complexity of comorbidities.
- Nora Shields (La Trobe University)
- Down Syndrome WA
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