Cerebral Visual Impairment (CVI) is the most common form of childhood visual impairment. Yet it remains the least well understood by parents and professionals alike. There is an urgent need to provide a bridge between academic knowledge concerning CVI, and to give a practical understanding of the condition to those affected, parents, carers, and professionals alike so that a common language can be shared between patients, their carers and professionals. The wide ranging manifestations of CVI, and the lack of accessible well recognised terms to describe it, render it difficult to understand how someone with their own unique form of CVI actually “sees”. However, with graded progressive explanation, knowledge can be gained, leading to an understanding of the visual effects of CVI from the perspective of those affected. The current position of limited understanding of the condition presents a major challenge for health and education professionals: How does one bring about the requisite CVI literacy, to render the subject accessible to families, affected children and adults, and the public?One way of doing this is by means of a plain language, multi-media resource, hosted on a publicly available website, driven by a partnership of adults with CVI, parents of children with the condition and experienced professionals from around the world, including those from the vision sciences and education. Within this context, we have explored the website resource of the not-for-profit organisation CVI Scotland (https://cviscotland.org/). This comprises a growing body of CVI knowledge created for teaching, sharing, learning and developing knowledge and understanding. By analysing anonymised data concerning the activity of 80,000 users from 170 countries, we have examined where the users who are accessing the website come from, what users are seeking in terms of information, how they have accessed the website, and what devices they use. The results are interpreted though frequency analysis and linear regression. Based on this analysis several recommendations are made in terms of disseminating information about CVI to members of the public as well as developments to enhance the website itself. To our knowledge this is the first study to examine the use of a website dedicated to CVI using Google analytics.
IntroductionHypoaccommodation is common in children born prematurely and those with hypoxic ischaemic encephalopathy (HIE), with the potential to affect wider learning. These children are also at risk of longer-term cerebral visual impairment. It is also well recognised that early intervention for childhood visual pathology is essential, because neuroplasticity progressively diminishes during early life. This study aims to establish the feasibility and acceptability of conducting a randomised controlled trial to test the effectiveness of early near vision correction with spectacles in infancy, for babies, at risk of visual dysfunction.Methods and analysisThis is a parallel group, open-label, randomised controlled (feasibility) study to assess visual outcomes in children with perinatal brain injury when prescribed near vision spectacles compared with the current standard care—waiting until a problem is detected. The study hypothesis is that accommodation, and possibly other aspects of vision, may be improved by intervening earlier with near vision glasses. Eligible infants (n=75, with either HIE or <29 weeks preterm) will be recruited and randomised to one of three arms, group A (no spectacles) and two intervention groups: B1 or B2. Infants in both intervention groups will be offered glasses with +3.00 DS added to the full cycloplegic refraction and prescribed for full time wear. Group B1 will get their first visit assessment and intervention at 8 weeks corrected gestational age (B1) and B2 at 16 weeks corrected gestational age. All infants will receive a complete visual and neurodevelopmental assessment at baseline and a follow-up visit at 3 and 6 months after the first visit.Ethics and disseminationThe South-Central Oxford C Research Ethics Committee has approved the study. Members of the PPI committee will give advice on dissemination of results through peer-reviewed publications, conferences and societies.Trial registration numberISRCTN14646770, NCT05048550, NIHR ref: PB-PG-0418-20006.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.