Stephanie L Santoro, Sandra Baker, Jasmine M Blake, Maria J Cabrera, Kelli Caughman, Jeanhee Chung, Sarah Cullen, Maureen Gallagher, Kelsey Haugen, Roxanne Hoke-Chandler, Kavita Krell, Julius Maina, Diana McLuckie, Vanessa L Merker, Carie Michael, Kate O'Neill, Angeles Peña, Albert Pless, Dina Royal, Michelle Slape, Noemi Alice Spinazzi, Amy Torres, Carlos G Torres, Brian G Skotko
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...
June 2, 2023: American Journal of Medical Genetics. Part A