TY - JOUR
T1 - Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds
AU - Santoro, Stephanie L.
AU - Baker, Sandra
AU - Blake, Jasmine M.
AU - Cabrera, Maria J.
AU - Caughman, Kelli
AU - Chung, Jeanhee
AU - Cullen, Sarah
AU - Gallagher, Maureen
AU - Haugen, Kelsey
AU - Hoke-Chandler, Roxanne
AU - Krell, Kavita
AU - Maina, Julius
AU - McLuckie, Diana
AU - Merker, Vanessa L.
AU - Michael, Carie
AU - O'Neill, Kate
AU - Peña, Angeles
AU - Pless, Albert
AU - Royal, Dina
AU - Slape, Michelle
AU - Spinazzi, Noemi Alice
AU - Torres, Amy
AU - Torres, Carlos G.
AU - Skotko, Brian G.
N1 - Publisher Copyright:
© 2023 Wiley Periodicals LLC.
PY - 2023/8
Y1 - 2023/8
N2 - 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.
AB - 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.
KW - COVID-19
KW - Down syndrome
KW - Trisomy 21
KW - caregiver impact
KW - quality improvement
UR - http://www.scopus.com/inward/record.url?scp=85161471087&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85161471087&partnerID=8YFLogxK
U2 - 10.1002/ajmg.a.63233
DO - 10.1002/ajmg.a.63233
M3 - Article
C2 - 37264986
AN - SCOPUS:85161471087
SN - 1552-4825
VL - 191
SP - 2045
EP - 2056
JO - American Journal of Medical Genetics, Part A
JF - American Journal of Medical Genetics, Part A
IS - 8
ER -