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Caregivers evaluate independence in individuals with Down syndrome
Stephanie L Santoro1,2, James Hendrix3, Nicole White4
1Division of Medical Genetics and Metabolism, Massachusetts General Hospital, Boston, Massachusetts, USA.
American Journal of Medical Genetics. Part A
|February 4, 2022
Summary
Caregivers of individuals with Down syndrome (DS) identified key independence goals. Top priorities include safety, communication, self-care, daily living, social skills, and vocational abilities for enhanced autonomy.
Area of Science:
- Disability Studies
- Developmental Psychology
- Rehabilitation Science
Background:
- Independence is crucial for individuals with Down syndrome (DS), encompassing autonomy, self-reliance, and task completion skills.
- Understanding caregiver perspectives on independence factors is vital for targeted support and intervention strategies.
Purpose of the Study:
- To identify and prioritize key factors and goals related to independence in individuals with Down syndrome (DS) from the perspective of their caregivers.
- To explore caregiver-reported challenges and aspirations across various life domains for individuals with DS.
Main Methods:
- A questionnaire was administered to 408 caregivers of individuals with DS.
- The questionnaire assessed factors related to independence across six domains: safety, communication, self-care, daily living, social/leisure, and vocational/employment.
- Responses were summarized using descriptive statistics, including means and frequencies.
Main Results:
- Caregivers identified top goals for individuals with DS, including safety from sexual abuse, effective communication of wants and needs, and independent toileting.
- Other significant goals included independent or semi-independent living, appropriate engagement in leisure activities, and foundational literacy skills (reading and writing).
- The study highlights the multifaceted nature of independence, varying significantly among individuals with DS.
Conclusions:
- Independence for individuals with Down syndrome is a complex, multifactorial construct influenced by various life domains.
- Caregiver input is invaluable for defining and achieving independence goals, emphasizing the need for tailored support.
- Prioritizing specific skills in safety, communication, self-care, daily living, social engagement, and vocational training can foster greater autonomy for individuals with DS.
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