Independence, inclusion, and uncertainty: voices of caregivers of youth with CHARGE syndrome on assistive technology and virtual reality.

Abstract

Purpose: Family caregivers play a critical role in supporting youth with CHARGE syndrome, yet little is known about how they perceive and evaluate emerging assistive technologies such as virtual reality. This study explored caregiver perspectives to better understand how technology is conceptualised, the types of exposure families have experienced, and the perceived benefits and concerns that shape adoption.

Materials and methods: Semi‑structured interviews were conducted with thirteen caregivers of young adults with CHARGE syndrome during the 16th International CHARGE Syndrome Conference in July 2025. Using qualitative descriptive methodology, transcripts were analysed to identify themes related to caregiver decision‑making, sensory and physical considerations, and the broader context in which assistive technology use is negotiated.

Findings: Caregivers described assistive technology in diverse ways, ranging from "fake" or entertainment‑based to culturally enriching and potentially educational. Most reported limited exposure, often through arcades or school programs, which shaped cautious attitudes towards adoption. While caregivers anticipated benefits such as increased independence, skill‑building, and social participation, they also expressed concerns about sensory overload, headset comfort, cost, and accessibility. Decision‑making was influenced by practical constraints, philosophical beliefs, and the perceived balance between caregiver burden and child autonomy.

Conclusion: Findings highlight the complexity of caregiver perspectives on assistive technology for youth with CHARGE syndrome. Understanding how caregivers conceptualise, experience, and weigh benefits against concerns can inform the design and dissemination of technologies that are responsive to family needs. These insights provide a foundation for future research and development aimed at enhancing accessibility and supporting caregiver decision‑making.