ArticleAugmentative and alternative communication (Baltimore, Md. : 1985)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.
Article in Augmentative and alternative communication (Baltimore, Md. : 1985), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
3 citing papers in PubMed, 14 citations in OpenAlex.
- Surveying the Perspectives of Parents and Professionals on Providing Upright, Hands-Free, Self-Initiated Mobility to Children with Severe Physical and Communication Disabilities.Children (Basel, Switzerland) · 2025Article
- Sensory substitution and augmentation techniques in cerebral visual impairment: a discussion of lived experiences.Frontiers in human neuroscience · 2025Article
- Exploring communication supports for children with visual impairment and blindness: A case study.African journal of disability · 2025Article
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Authors and funding
2 authors at 1 institution in 1 country.
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Abstract
Parents of children with both cortical visual impairment (CVI) and complex communication needs offer unique perspectives on their children's journeys to receiving proper diagnoses, supports, and interventions, such as augmentative and alternative communication (AAC). 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.
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Registered trials
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