Cerebral Visual Impairment

“Punar Nethra” – a one stop guide to parental training for children with Cerebral Visual Impairment (CVI)

Why: Cerebral Visual Impairment (CVI) is a brain-based visual condition. It is becoming one of the leading causes of pediatric visual impairment in developing countries due to improved neonatal care resulting in increased survival of children with birth-related complications. Children with CVI could have associated developmental delays and disabilities which makes it very crucial for them to avail early and prompt visual assessment followed by habilitation/rehabilitation based on their visual status. We understood that with COVID-19 pandemic and the restrictions that came along, children with special needs and their families have been affected to a greater extent from availing these services from therapists in-person. Considering these hardships our multidisciplinary team of the Special children clinic (SCV) and Vision enhancement clinic (VEC) took the initiative to create a Youtube channel to empower, guide, support and train parents and caregivers of children with CVI to carry out the training by themselves at their houses.

What: Children with CVI can have heterogenous clinical presentations varying from just vision-related problems to concurrent disabilities such as delay in motor, speech, hearing, sensory and cognition. This channel contains videos for all age groups, variants and deficits of children with CVI. These videos are prepared and made by Ms. Saranya Sethuraman, head of the department, VEC and Ms. Jannet Philip, graduate research scholar, Elite school of optometry in Tamil and English. The specialty of this channel is that it is made customized based on the individual child’s visual needs and demands. After a comprehensive eye and vision assessment including a detailed functional vision assessment by the ophthalmologist and special children clinic optometrists, the child undergoes a Tele or an in-person consultation with the rehabilitation specialist. Based on their needs and preliminary training, the parents are advised specific videos from which they can ‘learn’ and ‘verify’ their steps and performance at home. Apart from these videos, other training materials and worksheets were shared through WhatsApp and email with the parents.

Conclusion: The main goal of this channel is to reach out to families in need and empower ‘parents’ to be ‘teachers’ for their children with visual difficulties. This initiative helps the parents to be able to provide the children with appropriate guidance with confidence through collaboration with Sankara Nethralaya’s multidisciplinary team, especially with the advent of “Tele-rehabilitation” services at the hospital during COVID-19.

Acknowledgement: A big shout out to the entire team: Dr Meenakshi Swaminathan, senior pediatric ophthalmologist who conceptualized this idea and was the sole reason behind this initiative, Dr Jameel Rizwana Hussaindeen, honorary pediatric consultant optometrist, who has been a constant source of motivation by providing ideas and valuable feedback and Ms. Saranya, Vision Rehabilitation and early intervention specialist, VEC and her team for being an integral part and sharing her expertise in this area. We extend our gratitude to the SN multimedia team for shooting, editing and uploading the videos and finally to the families of SN-CVI patients without whom this would have been impossible. You can also be a part of this initiative by subscribing to the channel and sharing this with friends, families, professionals and mainly with the ones in need of such care, during these uncertain times!

*Written informed consent has been obtained from the patient/parent for the photos