“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 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.

Keywords:

• Augmentative and alternative communication
• complex communication needs
• cortical visual impairment
• parent perspectives

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Zoom is a communications platform available from Zoom Video Communications, San Jose, CA. www.zoom.us.

Additional information

Funding

The first author was supported by the AAC Doctoral Leadership grant funded by the U.S. Department of Education Office of Special Education Programs [H325D170024]. The development of this paper was also supported, in part, by a grant to the Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (The RERC on AAC) from the U.S. Department of Health and Human Services, National Institute on Disability, Independent Living, and Rehabilitation Research [NIDILRR; 90REGE0014]. The contents do not necessarily represent the policy of the funding agencies, and endorsement by the federal government should not be assumed. The authors report no conflicts of interest.