1. Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds.
- Author
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Santoro SL, Baker S, Blake JM, Cabrera MJ, Caughman K, Chung J, Cullen S, Gallagher M, Haugen K, Hoke-Chandler R, Krell K, Maina J, McLuckie D, Merker VL, Michael C, O'Neill K, Peña A, Pless A Jr, Royal D, Slape M, Spinazzi NA, Torres A, Torres CG, and Skotko BG
- Subjects
- Child, Humans, Pandemics, Parents psychology, Mental Health, COVID-19 epidemiology, Down Syndrome epidemiology, Down Syndrome psychology
- Abstract
Down syndrome (DS) has a unique medical and psychological profile. To date, few studies have asked individuals with DS about their views of health, and fewer have explored the impact of COVID-19 on the health of individuals with DS and their families. We used a mixed methods approach including two studies on the health of individuals with DS and their parents conducted during the COVID-19 pandemic: (1) eight virtual focus groups, comprised of 20 parents and 8 individuals with DS to obtain participants' views of health, and (2) a 20-item questionnaire on health care experience of patients with DS who are African American or come from primarily Spanish-speaking homes. Focus group transcripts were coded using a hybrid inductive/deductive framework and thematically analyzed using the Framework Method. This questionnaire included questions regarding the impact of COVID-19 on caregivers and their loved ones with DS; responses to these questions were summarized using descriptive statistics. Individuals with DS discussed the impact of the COVID-19 pandemic on their physical and social health including masking, online learning, and online communication with friends and family. Parents of individuals with DS discussed how the COVID-19 pandemic negatively impacted their child's physical, social, and mental health, as a result of virtual schooling and decreased socialization. There were unexpected positives of the pandemic such as improved hygiene and eased scheduling with telehealth visits. Caregivers noted COVID-19 impacted their own anxiety, employment, and other domains that have potential ripple effects on the health of their children. The COVID-19 pandemic had a pervasive impact on the mental health and wellness of caregivers as well as the physical, social, and mental health of individuals with DS., (© 2023 Wiley Periodicals LLC.)
- Published
- 2023
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