McCarty, T. V., & Light, J. C. (2023). “It’s like a guessing game all the time”: Parent insights on barriers, supports, and priorities for children with cortical visual impairment and complex communication needs. Augmentative and Alternative Communication, 39(4), 256–269. https://doi.org/10.1080/07434618.2023.2206904
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Background
Families raising a child with both cortical visual impairment (CVI) and complex communication needs (CCN) can offer perspectives on both their journey in accessing augmentative and alternative communication services as well as challenges throughout the process.
Current Article
Though previous studies have attempted to understand guardian perspectives regarding CVI but none have specifically focused on communication. This study aimed to answer the question, “What are the experiences, barriers, supports, and priorities of parents of children with CVI and complex communication needs?”
Findings
This study explored the lived experiences, supports, and barriers identified by parents through a qualitative phenomenological approach. Nine parents of children with both CVI and complex communication needs were interviewed virtually. Results indicated five themes descriptive of the parents’ experiences: Challenges Piecing Together a CVI Diagnosis; Dealing with Low Expectations of Others; Parents Empowered to Take Action; Guessing Game to Determine Appropriate AAC to Accommodate CVI; and Aligning Professional Practice with Parent Priorities. Whereas some of these themes echoed the experiences of parents of children with complex communication needs (such as those with cerebral palsy) who were not specifically diagnosed with CVI, other themes were unique to this set of parents including the uncertainty of AAC design and intervention given the challenges of CVI and the necessity of more than one way for children to communicate given their visual challenges. This study highlighted the dire need for continued investigation to determine effective AAC interventions for individuals with CVI.
The parents faced daily struggles to accommodate the health, vision, and communication needs of their children; … “Everything is a challenge.” This study sought to give a voice to the parents of children with CVI and complex communication needs who are waiting for answers to questions about how to help their children communicate and achieve the best quality of life.
McCarty & Light, 2023
