"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.

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 Pa

SUBMITTER: McCarty TV 

PROVIDER: S-EPMC11267258 | biostudies-literature | 2023 Dec

REPOSITORIES: biostudies-literature