Family Perspectives on In-Home Multimodal Longitudinal Data Collection for Children Who Function Across the Developmental Spectrum.
Katelynn E Boerner, Leora Pearl-Dowler, Liisa Holsti and 3 others
PMID 37074803WHAT IT FOUND
Families want in-home data collection to be flexible, pausable during medical crises, and to include siblings.
They value receiving their own data to understand their child's invisible symptoms. This feedback shapes how to design accessible research for complex needs.
Key findings
01Families emphasized the need for flexible timing, the ability to pause data collection during medical events, and the inclusion of multiple caregivers or siblings in the process.
02Participants expressed a strong desire for reciprocity, specifically wanting access to their own data to help interpret their child's condition and communicate with healthcare providers.
03In-home methods were seen as a way to increase accessibility for families who face barriers to travel or who have children with severe neurologic impairments not typically represented in research.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study did not collect data on socioeconomic status or geographic location, so it is unclear if the sample represents families with fewer resources or those in remote areas. The participants were recruited from a specific tertiary care hospital in Western Canada and through social media, which may limit generalizability. No member checking was performed, meaning the participants did not review the final themes for accuracy. The study explored perceptions of potential methods rather than testing the actual implementation of the 'Living Lab at Home' platform.
Declared interests
The authors declared no conflicts of interest. The research was supported by non-U.S. government funding.
The easy way to misread this
Do not interpret this as evidence that in-home data collection improves clinical outcomes. This study reports what families *want* and *perceive* as helpful, not whether these methods actually lead to better health or reduced burden in practice.