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A perception survey on awareness of lived experiences and Government of India initiatives for children and Individuals with Nystagmus.
Nystagmus is a vision impairment where the visual acuity cannot be completely corrected even with low vision aids such as correctional glasses. Children diagnosed with Nystagmus face several visual challenges that if not attended to, impact their quality of life, and may cause severe developmental delays. Some of these developmental challenges have long-lasting impacts way into their adulthood. At Women in Crisis Response we believe persons suffering from this long-term vision impairment need to be nurtured to be strong and independent individuals who can reach their full potential within the limitations of their visual acuity and that parents play a key role in developing their character.
The scope of this study is currently limited to understanding the challenges faced by children 6-16 years and all individuals above 16 years of age in India who are from urban middle-class families where parents have at least completed their high school education.
The aim of the study is to understand the awareness of current policy interventions and whether they are helping parents and individuals or not. This survey wants to understand the challenges and barriers that they face in supporting the overall growth and development or quality of life.
The results of this survey will help us develop programs at the grassroots level to hopefully address some of the issues that we find. Raising awareness of Nystagmus will help individuals and children with this condition better integrate into society and give them the opportunity to lead healthy and fulfilling lives.
This part of the grassroots research will open by midnight EST on November 2nd, 2021 and stay open until the midnight EST of December 20, 2021.