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

Abstract

Dynamic, real-time, in-home methods of data collection are increasingly common in child health research. However, these methods are rarely cocreated or used with families of youth with developmental disabilities. We aimed to determine the feasibility of codesigned methods for in-home data collection for youth across the developmental spectrum. Sixteen youth (14-18 years) with autism spectrum disorder, cerebral palsy, and/or chronic pain completed 14 days of data collection, wearing an accelerometer, answering Ecological Momentary Assessment (EMA) questionnaires, and collecting salivary cortisol samples. Participants completed a poststudy interview regarding their experiences. Data were analyzed for feasibility, quantity, and quality. At least 1 EMA response was provided on 73% of days, with 54% of the total number of administered prompts answered before the next prompt arrived. In total, 77% of participants wore the accelerometer ≥10 hours for at least 7 days. Adherence to 8-day saliva sampling after accounting for protocol violations and dry samples was 28%. No significant adverse events were reported aside from mild emotional distress (25%). Families reported generally high satisfaction, willingness to participate again, and acceptability, with moderate burden and interference. Qualitative interviews described: (1) the research question's value to the family as a motivator of engagement; (2) in-home data collection is not a passive or neutral experience; (3) personalized approaches and context are important to families; and (4) a clear need for continued iteration and engagement. In-home multimodal data collection is potentially feasible for families across the developmental spectrum but requires iteration based on family feedback to increase adherence.