Written by Hal Siden
research project: living lab at home – taking developmental and behavioral research into the community
Lead investigators/designated PI’s
Katelyn Boehner, Tim Oberlander, and Hal Siden, Co-Investigator
March 11, 2021
Est. end date December 2021
The Living Lab at Home is a qualitative feasibility study looking to offer an approach to real time home based data collection that will expand access to research participation for a wide range of children and youth. To date, we have relied on questionnaires and lab-based experiments to answer questions and develop interventions regarding child health and well-being. With advances in digital technology, we now have the ability to address the limitations of lab-based point in time methods, and answer questions about mood, daily function, stress regulation, and mental health in the real-world setting of the home. The study will ensure that the patient and family voice is featured prominently with a process of patient engagement to establish the methods, study its implementation, and receive feedback in order to refine methods
The purpose of this study is to establish the Living Lab at Home for ambulatory, longitudinal, and multimodal data collection in a home setting. This will enable and empower parents and their children to participate in real-time data collection using accessible, real time technology and methods.
- To undertake engagement activities with both parents and youth across the developmental spectrum, as well as investigators and collaborators.
- From there, we will be able to introduce home based data sampling approaches (i.e. wearables, smartphone based data, and the Living Lab at Home Kit) and solicit feedback to ensure that study design, implementation and approaches to data visualization will be acceptable, ethical, feasible, usable, and in line with patient and family priorities and values for health research
Our research was collected by conducting qualitative interviews with children/youth and their families from 3 groups: Cerebral Palsy, Autism Spectrum Disorder, and Chronic Pain. As a sub-study, interviews will be conducted with five families of youth with SNI. Finally, focus groups will also be held with research and clinical partners from BCCH and UBC.