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Healthcare and Behavior Changes for Adults With Down Syndrome 1-Year Into COVID-19
Eric Rubenstein1, Nichole Kyprianou1, Prisha Sujin Kumar1
1Eric Rubenstein, Nichole Kyprianou, Prisha Sujin Kumar, and Anna-Mariya Kriova, Boston University School of Public Health.
Summary
Adults with Down syndrome (DS) experienced significant negative impacts from COVID-19, including lost activities, skills, and increased mental health issues. Caregivers reported reduced healthcare access and employment struggles, highlighting the need for targeted support.
Area of Science:
- Medical Research
- Public Health
- Disability Studies
Background:
- Individuals with Down syndrome (DS) faced disproportionate risks during the COVID-19 pandemic.
- Concerns existed regarding potential sacrifices in opportunity and activity to mitigate exposure risks.
Purpose of the Study:
- To describe the experiences of adults with DS during the COVID-19 pandemic, from caregiver perspectives.
- To assess the impact on activities, employment, behavior, skills, mental health, and healthcare utilization.
Main Methods:
- An online survey was administered to caregivers of adults with DS.
- Data collection occurred between April 2021 and September 2021.
- The study included a sample of 438 adults with DS.
Main Results:
- Caregivers reported significant losses in activities (86.5%) and struggles with employment for adults with DS.
- Negative behavioral changes, skill loss, and increased mental health conditions were prevalent.
- Reduced healthcare usage (20%) and delayed routine care (25%) were reported.
Conclusions:
- The COVID-19 pandemic has had profound negative effects on adults with Down syndrome.
- Targeted support is crucial to address ongoing skill loss and mental health challenges.
- Continued monitoring and intervention are necessary for this vulnerable population.
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