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Parents' Experiences and Views About Use of Wearable Technology for Research and Treatment Monitoring of Children
Rachel Xifaras1, David J Amor2,3, Erin Turbitt1
1Genetic Counselling Discipline, Graduate School of Health, University of Technology Sydney, Sydney, Australia.
Insights
Parents of children with neurodevelopmental disorders (NDDs) are open to using wearable technology if it is feasible and integrated into routines. Early collaboration in design and a shared decision-making approach are crucial for successful implementation in research.
Area of Science:
- Pediatric Health Technology
- Neurodevelopmental Disorders Research
- Wearable Sensor Applications
Background:
- Children with neurodevelopmental disorders (NDDs) present unique challenges for clinical measurement due to sensory, behavioral, and cognitive factors.
- Wearable technology offers potential for objective data collection in NDD research.
- Understanding parental perspectives is vital for effective implementation of these technologies.
Purpose of the Study:
- To investigate the experiences and views of parents of children with NDDs regarding the use of wearable technology.
- To identify factors influencing the adoption and feasibility of wearable technology in NDD clinical research.
Main Methods:
- Qualitative semi-structured interviews with 12 parents of 14 children diagnosed with Fragile X, Prader-Willi, or Angelman syndromes.
- Purposeful sampling of families with prior experience using wearable technology in research.
- Data analyzed using NVivo software and reflexive thematic analysis.
Main Results:
- Parents expressed willingness to use wearable technology if it is feasible, robust, non-invasive, and easily integrated into daily routines.
- Previous healthcare and research experiences influenced parental perceptions, with wearables seen as low burden.
- Parents emphasized the importance of early engagement in technology design and the need to consider the child's behavioral phenotype.
Conclusions:
- Shared decision-making between researchers and parents is essential for improving the acceptance and success of wearable technology in NDD research.
- Incorporating parental insights into the design and rollout phases can enhance the utility of wearables for clinical measurement in this population.
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.
