| Popis: |
Background: Children with severe physical disabilities and no expressive communication have few options for interaction and engagement with the world around them. There is a need for new technologies and programs dedicated to this population and brain computer interface (BCI) can provide new opportunities for independence. We established a novel, family-centered, clinical BCI program for cognitively capable children with severe disability. Here, we aimed to understand the potential impact on participants from the perspective of families to help guide program development and future modifications. Methods: Children in the program were aged 6-16 years with severe physical (non-ambulatory, minimal hand use) and communication disabilities and estimated grade 1 cognitive capacity. Parents and caregivers of participants were invited to complete semi-structured interviews to discuss their impressions and opinions of the program. Children were invited to complete a simpler “yes”/ “no” questionnaire about their experience and interests. Thematic analysis was performed according to established methods. Results: Seven parents/caregivers and 4 children from 6 families with nearly 300 hours of experience with the BCI program participated. Thematic analysis revealed that despite limited initial BCI knowledge, the program elicited positive emotional responses including feelings of enhanced independence, inclusion, and recognition for parents and children. Families were interested in contributing to BCI development to enhance their child’s future. Conclusions: Clinical BCI programs may have positive impacts on children with disabilities and their families. Continuous engagement of parents and children is imperative to create programs and technologies that will meet the needs of this population. Trial registration: The current study was approved by the University of Calgary Research Ethics Board, study ID:REB15-2567. |
