"Even though a lot of kids have it, not a lot of people have knowledge of it": A qualitative study exploring the perspectives of parents of children with cerebral/cortical visual impairment.
Parents are forced to become CVI teachers because providers skip the diagnosis—screen and refer early.
01Research in Context
What this study did
Haley et al. (2023) talked with parents of kids who have cerebral visual impairment. They asked how families learned about CVI and what help they got.
The team used open interviews. Parents shared stories of late diagnosis and having to teach doctors themselves.
What they found
Every parent said the same thing: no one knew about CVI. Eye doctors, teachers, and therapists missed it for years.
Families became the experts. They hunted for articles, joined Facebook groups, and brought binders to clinic visits.
How this fits with other research
The finding matches Pitchford et al. (2019). That study also showed rural parents doing the trainer role when services were scarce.
It extends Tokatly Latzer et al. (2021). During COVID lockdowns, parents of autistic kids again had to step in when systems failed.
Unlike Majoko (2016), who saw teacher training help inclusion, Haley shows training rarely exists for CVI. The gap is still wide open.
Why it matters
If you assess or treat kids with developmental delay, learn the red flags for CVI: light gazing, visual latency, field loss. Add a quick screener to your intake. When parents mention “weird vision behaviors,” believe them and refer early. One hour of your learning can save years of theirs.
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02At a glance
03Original abstract
BACKGROUND: Cerebral/Cortical Visual Impairment (CVI) is the leading cause of visual impairment in children and can negatively impact participation in daily activities. METHODS AND PROCEDURE: This qualitative study used virtual focus groups and an online questionnaire to understand the perspectives of families with children who have CVI. Constant comparison analysis was used to analyze focus group transcripts and extract themes. The PEDI-CAT and an online questionnaire were administered to characterize the study population. OUTCOMES AND RESULTS: Four themes were identified: (1) Awareness of CVI and its effect on the child and family, (2) Parent experiences, (3) Child factors and functional implications, and (4) Supports that enhance child development/vision. CONCLUSIONS AND IMPLICATIONS: Findings from this study highlight the substantial impact that lack of CVI awareness had on parent experiences. Lack of awareness led to late diagnosis, missed intervention opportunities, and caregiver burden. Due to insufficient resources, parents had to educate themselves and service providers about CVI and advocate for their child's needs. Healthcare and educational providers who work with pediatric neurodevelopmental populations must be knowledgeable about clinical features of CVI, task and environmental adaptations to support vision and implementation of family-centered care.
Research in developmental disabilities, 2023 · doi:10.1016/j.ridd.2023.104443