Bridging the Gap: Parent and Child Perspectives of Living With Cerebral Visual Impairments

Abstract

Cerebral Visual Impairment (CVI) is an umbrella term which includes abnormalities in visual acuity, or contrast sensitivity or colour; ocular motility; visual field and the conscious and unconscious filtering or processing of visual input. Children with CVI have specific needs and problems relating to their development from infancy to adulthood which can impact on their wellbeing. Recent research indicates the complexities of living with CVI but there remains limited information of the full impact of CVI on families’ everyday lives. The qualitative interviews reported here explored families’ experiences to discover the impact of CVI on all aspects of everyday life. Parents and children (aged 6–18) were invited to participate in semi-structured interviews, either face to face, by phone or video call between January 2018 and February 2019. Topics covered everyday practicalities of living with CVI, focusing on challenges and what worked well at school and home. Interviews were audio-recorded and subject to thematic analysis to look for patterns across the data. Twenty families took part in interviews, with eight children/young people within those families contributing interviews of their own. Four themes were developed from the interviews: (1) Assessment and understanding implications of CVI, (2) Education, (3) Family life, (4) Psychological wellbeing and quality of life. The interviews provide valuable insights into the impact of living with CVI and highlight the need for more awareness of the condition among professionals in both health and education settings.

Toward Removing Barriers in the Evaluation, Diagnosis, and Care of Individuals With Cerebral Visual Impairments

“…Currently, CVI is not or is minimally part of the mandatory training for most medical professionals, including ophthalmologists, leading to a lack of exposure and confidence in evaluating, diagnosing, and medically treating those with CVI (Harpster et al, 2022). This may be particularly evident for those in whom visual fields and acuity are within typical levels (Goodenough et al, 2021). More intensive training in CVI by professionals in other fields such as optometry, education, occupational therapy, speech-language pathology, orientation and mobility, and more is also needed.…”

Clinical assessment, investigation, diagnosis and initial management of cerebral visual impairment: a consensus practice guide

“…Parents commonly cite a lack of support, signposting and information at diagnosis as a key barrier to them accessing services to support their children [11,47]. Whilst each individual child will need a bespoke support package, simple adaptations to educational materials (such as enlarged font and/or fewer items per page) and environments (such as reducing clutter and/or considering area of best visual attention) help a lot of children [48].…”

“…There is often no cure for the features of cerebral visual impairment: rather the impact of visual dysfunction is ameliorated by adopting strategies and modifications to the child’s environment tailored to the child’s unique combination of difficulties [ 9 – 11 ].…”

Cerebral visual impairment and educational support in the United Kingdom: Understanding thresholds for providing support

“…For children, this encompasses adjustments to enable them to access education and maximise their academic potential. A UK study identified that parental and teacher understanding of the child's CVI and individual information on strategies to support the child were important to promote successful intervention (Goodenough et al, 2021).…”