Developing a Tailored Healthy Lifestyle Intervention for Families of Young Children with Down Syndrome

1. Erik Willis (University of North Carolina-Chapel Hill)
2. Emily Clarke (University of North Carolina-Chapel Hill)
3. Michaela Schenkelberg (Univeristy of Nebraska-Omaha)
4. Seema Agrawal (University of North Carolina-Chapel Hill)
5. Heather Wasser (University of North Carolina-Chapel Hill)

Correspondence: erik.willis@unc.edu

INTRODUCTION: Families of young children (2-6 years old) with Down syndrome (Ds) face unique challenges in achieving healthy eating (HE) and physical activity (PA) recommendations. The purpose of this study was to adapt an evidence-based healthy lifestyle intervention to meet the specific needs of these families.

METHODS: The study involved three phases: 1) an online survey with 150 families to assess HE and PA needs; 2) usability testing with 6 caregivers and 4 Ds experts using human-centered design to identify barriers; and 3) content co-creation with 6 caregivers and 2 Ds education specialists.

RESULTS: 1) Survey: Families of children with Ds met 8.6% of HE and 5.7% of PA recommendations. Families expressed a need for nutrition education (61%) and preferred web-based delivery with brief, on-demand resources (67%). 2) Usability Testing: All participants recognized the need for an adapted healthy lifestyle intervention and expressed strong support for its development. They recommended tailoring strategies to developmental abilities, incorporating education on family dining, and adding more cultural food examples. Families also requested concise print resources (e.g., 1-2 page infographics), short videos (3-5 minutes) with practical behavior strategy examples, and support through check-in calls and Q&As with a real person. 3) Co-Creation and Refinement. Materials were tailored to developmental abilities with customized self-assessments, goal-setting templates, brief handouts, short videos, and interactive tools. Feedback prompted further refinements, addressing factors like child’s time at home, meal frequency, weight, feeding therapy needs, and motor skills. Some strategies were found impractical, and videos longer than 4.5 minutes were considered too lengthy; adjustments improved accessibility and relevance.

CONCLUSIONS: The adapted intervention shows promise in addressing the unique HE and PA needs of families of children with Ds, offering a feasible approach to support caregivers in improving adherence to HE and PA recommendations.