The Living Lab at Home: Feasibility and Acceptability of Multimodal In-Home Data Collection Among Youth Across the...

Area of Science:

• Child Health Research
• Developmental Disabilities
• Behavioral Science

Background:

• In-home data collection is growing in child health research.
• Methods are rarely co-created with families of youth with developmental disabilities.
• This study addresses the gap in adapting these methods for diverse developmental needs.

Purpose of the Study:

• To determine the feasibility of co-designed, in-home data collection methods.
• To assess the usability and acceptability of these methods for youth across the developmental spectrum.
• To gather family feedback for iterative improvement of data collection protocols.

Main Methods:

• Sixteen youth (14-18 years) with autism spectrum disorder, cerebral palsy, and/or chronic pain participated.
• 14-day data collection included accelerometry, Ecological Momentary Assessment (EMA) questionnaires, and salivary cortisol samples.
• Post-study interviews explored participant and family experiences.

Main Results:

• 73% of days had at least one EMA response; 54% of prompts were answered before the next.
• 77% of participants wore accelerometers ≥10 hours for ≥7 days.
• Saliva sampling adherence was 28%; mild emotional distress was the only adverse event (25%).
• Families reported high satisfaction, willingness to participate, and acceptability, with moderate burden.

Conclusions:

• In-home multimodal data collection is potentially feasible for families across the developmental spectrum.
• Personalized approaches and family engagement are crucial for successful implementation.
• Continued iteration based on family feedback is necessary to enhance adherence and optimize methods.