Every one of us benefits from healthy routines. Proper nutrition, exercise and sleep—and even the decisions we make and the relationships we build—help us to live healthy and fulfilling lives. For children with Down syndrome and their families, these choices are not always easy or obvious. But researchers at SHRS are finding ways to help families develop healthy routines that support the needs of children with Down syndrome so they grow up healthier and are better able to thrive in the adult world.
Angela R. Caldwell, assistant professor, Department of Occupational Therapy, has always been interested in strategies to reduce childhood disparities. Early in her research career, she received an NIH Early Career Development Award to investigate the health behaviors of young children with Down syndrome and determine how to best help families develop healthy routines and prevent rapid weight gain observed during the preschool years.
“We know that children with Down syndrome have an increased risk for certain medical conditions, including cardiac and respiratory problems,” says Caldwell. “We also know they have a higher rate of obesity. But we don’t have tailored interventions to prevent this condition in a population with unique risk factors.”
To address this issue, Caldwell began collecting data from parents and caregivers who were able to identify facilitators as well as barriers to healthy routines for toddlers (age 12-36 months) with Down syndrome. Together with Assistant Professor Andi Saptono, Department of Health Information Management, she developed a mobile health platform called EACH DS (Early Child Health: Down syndrome) that allowed caregivers to log key information about their kids’ sleep, physical activity, screen usage and eating behavior easily and accurately, at any time of the day.
“Our vision behind the app was to provide clinicians, such as physicians, physical and occupational therapists and speech-language pathologists, with comprehensive information about the child’s daily experiences without depending on their caregivers to remember and be able to recall everything about their kids prior to their regular
visits,” says Saptono.
“We set health promotion goals with individual families,” says Caldwell. “By using behavior change techniques, we’re able to build healthy routines early, so everyone benefits from them throughout their lives. That is very rewarding.”
As a professor in the Department of Counseling and Behavioral Health, Chandra D. Carey has dedicated her career to supporting caregiver mental health and individual community engagement, especially among people of color with disabilities. As the mother of a child with Down syndrome, the intersection of professional expertise and lived experience isn’t incidental; it’s foundational.
“Having a daughter with Down syndrome has made me especially committed to focusing on mental health and everyday routines that support young people’s overall wellbeing and quality of life,” explains Carey.
Through a collaboration with the Down Syndrome Association of Pittsburgh and the Down Syndrome Center of Western Pennsylvania at UPMC Children’s Hospital of Pittsburgh, Carey participates in a program for teens with Down syndrome who may soon be heading to college or living on their own for the first time.
“Adulting 101—a Series to Empower Teens” consists of six two-hour sessions that cover topics ranging from physical activity and nutrition to social-emotional learning and self-advocacy. The program culminates in a festive celebration where participants are honored and reflect on their experiences with family.
Carey says “Adulting 101” supports teens with Down syndrome in exploring various paths to adulthood, self-determination and community inclusion.
“Like most teens, mental wellness for those with Down syndrome begins with self-acceptance, community and
practical knowledge. We are excited to support teens and their caregivers during a crucial time for strengthening self-advocacy, autonomy and overall well-being,” Carey continues.
While this may be new territory for some teens with Down syndrome and for their parents, the series is designed to help them flourish in any environment they choose to enter.
“Our goal is to support their mental health so they can transition into adulthood with confidence and on their own terms,” says Carey. “That foundation can make all the difference on the road to a fulfilling life.”
According to the National Down Syndrome Society, all people with Down syndrome experience some cognitive delays, but the effect is usually mild to moderate and does not impede their ability to use their many strengths and talents.
“Education programs such as ‘Adulting 101’ support individuals with Down syndrome to engage more successfully in the world,” adds Carey. “But there’s also a need for more widespread public education and a broader cultural shift toward genuine inclusion and belonging.”
