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Family Experiences in a Pediatric Clinical Brain-Computer Interface Program: A Qualitative Study
Susannah Van Damme1, Leslie Mumford2, Amy Thompson3
1Susannah Van Damme, MSc(OT), OT Reg(Ont), is Team Lead and Occupational Therapist, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada; svandamme@hollandbloorview.ca.
Importance:
Brain-computer interfaces (BCIs) are access technologies that can improve the occupational participation of children with disabilities. The research on the experiences of pediatric BCI users and their families is currently limited.
Objective:
To explore experiences of pediatric BCI use and future expectations through caregiver perspectives.
Design:
A qualitative, descriptive study using purposeful sampling and inductive thematic analysis. Investigator triangulation and reflexivity enhanced credibility.
Setting:
Zoom for Healthcare virtual platform.
Participants:
Fifteen parents (12 mothers and 3 fathers) of children and youth with disabilities (ages 6-18 yr; 9 females and 6 males) who participated in a recreational BCI program at a pediatric rehabilitation hospital, with the option of additional at-home BCI use, were selected via purposive sampling.
Outcomes And Measures:
In-depth, semistructured interviews were used to collect data.
Results:
Three major themes emerged from the central topic of experiencing play using BCIs: (1) transformative experiences, (2) personalization for success, and (3) future hopes.
Conclusions And Relevance:
By documenting family experiences with and expectations of BCIs, these findings can guide the development of BCI use in clinical and recreational programs. Occupational therapy practitioners can use the transformative potential of BCI technology to create new pathways for participation and empowerment in the lives of children and youth with disabilities. Plain-Language Summary: Children with complex disabilities often cannot take part in play and recreation. Many activities are not accessible to them. Brain-computer interface (BCI) technologies can help kids play without needing to move or speak. We asked families using BCIs about their experiences. They shared that use of a BCI empowered their child and allowed others to consider them in a new light. Some families enjoyed the programming, and others found the activities too simple over time. Many families shared that BCI headsets were uncomfortable. A better design for kids with disabilities is important. Families hope that BCIs will help kids control their environment in the future. Occupational therapists should understand how kids and families feel about using BCIs. This study helps occupational therapists learn about the benefits of BCIs in their practice and the challenges of using them.
