Community-based participatory research to develop a client-centred virtual reality program for children with autism: an integrated knowledge translation approach (2018)
Background: Autism spectrum disorder (ASD) is a disorder that affects socio-emotional skills. As there is no curative therapy for ASD and traditional interventions are costly, introducing possible complementary programs is warranted. Low-cost gaming programs (e.g., Kinect games) can enable users to communicate with characters on the screen through intuitive ways such as gestures or speech. However, current studies did not tailor the Kinect games to address individual needs of children with ASD.Purpose: The objective of this five-phase study was to design and develop a Kinect program using an integrated knowledge translation approach and participatory design. Method: The first and second phases involved studies that gathered perspectives of 26 stakeholders on: (a) barriers to social participation and priorities for the focus of the Kinect program; and (b) factors that can make virtual reality programs effective to use, employing interviews and focus groups. The third phase was developing and validating the social stories for the content of the program via the modified Delphi method, with 63 stakeholders. The fourth phase was developing and debugging the program in an iterative process with 10 children/youth with ASD and their parents. The fifth phase aimed to uncover barriers in adoption of the technology, helping us to plan for the knowledge translation activities during dissemination. Results: In the first two phases, stakeholders identified the ability of perspective-taking in socio-emotional situations as a critical element to enhance social participation, and highlighted the importance of mirroring real world, addressing heterogeneity, and incorporating teaching strategies in a virtual reality program. In the third phase, they suggested explaining social scenarios and incorporating calming strategies. Adjusting the audio-visual features and strategies to engage users were expressed in the fourth phase. In the last phase, barriers to technology uptake were identified, such as personal belief, suitable technology, and external resources to implement. Implications: This study introduces the development process of a novel program for children with ASD in collaboration with stakeholders. Involving stakeholders during all stages of the development help meet end users’ needs. Future studies are required to provide evidence on the efficacy of this program in improving socio-emotional functioning.