Litcius/Paper detail

Caregivers evaluate independence in individuals with Down syndrome

Stephanie L. Santoro, James A. Hendrix, Nicole White, Priya Chandan

2022American Journal of Medical Genetics Part A14 citationsDOI

Abstract

Independence is both a sense of autonomy and self-reliance coupled with the skills to complete tasks without assistance. Questionnaire of caregivers of individuals with Down syndrome asked about factors related to independence on six topics: safety, communication, self-care, daily living, social/leisure, and vocational/employment. Responses from 408 caregivers to an independence questionnaire were received, and summarized using means and frequencies. Top goals by topic were safety from sexual abuse, communicating wants and needs, toileting independently, living independently/semi-independently, engaging in leisure time appropriately, and reading and writing. Independence is a complex, multifactorial phenomenon which varies among individuals with DS.

Topics & Concepts

ToiletingIndependence (probability theory)AutonomyIndependent livingActivities of daily livingPsychologyDevelopmental psychologyClinical psychologySocial psychologyMedicineGerontologyPsychiatryStatisticsLawPolitical scienceMathematicsDown syndrome and intellectual disability researchFamily and Disability Support ResearchDisability Rights and Representation