Background: Parent-mediated intervention (PMI) is a potentially scalable approach for tailored interventions in neurogenetic conditions like Down syndrome (DS). Because PMIs require ongoing parent engagement, they must be developed in alignment with the needs of intended users. The present study examined caregiver opinions and preferences to…

Background: Down Syndrome is the most common genetic disorder associated with intellectual and developmental disabilities. Research to improve health care outcomes in Down Syndrome lags significantly behind other disease categories. Among these reasons are funding, recruitment and availability of research studies being conducted. Methods: We…

Background: Individuals with Down syndrome are known to have high rates of hearing loss, but it is unclear how this impacts their ability to communicate and function in real-world environments. Methods: Sixteen English-speaking and Spanish-speaking mothers of individuals with Down syndrome ages 6-40 years participated in individual,…

Background: Adults with Down syndrome commonly have low levels of physical activity and face social barriers to engaging in physical activity, including boredom and companionship concerns. Adults with Down syndrome are at increased risk for several co-occurring medial conditions known to benefit from physical activity, including obesity and…

Background: Previous studies have focused mostly on the negative experiences of parents of children with Down syndrome. We aimed to explore both the stressful experiences and coping strategies of parents from a non-Western country. Methods: Twenty-six parents of children aged 8-48 months with Down syndrome were included. Semi-structured interviews…

Background: Leisure activity has been linked to optimal ageing outcomes, yet little is known about the type and level of leisure activity adults with Down syndrome currently engage in, and the factors that promote and hinder their leisure activities. Materials and Methods: A daily diary was utilized to provide an in-depth description of the…

Background: Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS),…

Background: Despite the wide documentation of the physical/psychological benefits derived from regular physical activity (PA), high levels of inactivity are reported among people with Down syndrome. Method: Semi-structured interviews were conducted with 13 parents of young people with Down syndrome. Results Three facilitation themes were…