Parents' Experiences and Views About Use of Wearable Technology for Research and Treatment Monitoring of Children with Neurodevelopmental Disorders

Objective: Wearable technology has potential benefits for clinical measurement with children who have neurodevelopmental disorders (NDDs). However, this cohort may experience sensory processing disorder, behavioral dysregulation, and cognitive challenges. For effective and considerate implementation, the experiences and views of parents of children with NDDs on this topic need in-depth investigation. Method: This qualitative semi-structured interview study used purposeful sampling of families with experience with wearable technology in a research setting. The cohort included 12 parents of 14 children with a diagnosis of Fragile X (n = 6), Prader-Willi (n = 4), or Angelman (n = 4) syndromes. The data were processed using NVivo software (QSR International Ltd. 1999–2013). Data analysis was conducted using reflexive thematic analysis. Results: Theme 1: Parents are willing to use wearable technology in the home or community if it is feasible. Aspects of feasibility were the ease of embedding technology into existing routines, device robustness, and device invasiveness. Theme 2: Parents are guided by previous healthcare and research experiences. Wearables were considered low burden in the context of everything else their child experiences through health care. Theme 3: Early engagement with families in the design and research process of new technologies is important. Parents had strong views on how to introduce a wearable to their child. In this article, parents stressed that the child's behavioral phenotype needs to be considered early in the design and rollout phases. Conclusion: A shared decision-making approach between researchers and parents will improve the uptake and success of NDD-focused research adopting wearable technology approaches for clinical measurement.