Impact of the COVID-19 pandemic on individuals with nystagmus
and an exploration of public assumptions about the condition: an electronic questionnaire study
The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.
In conclusion, the study highlights the lack of public awareness of nystagmus and suggests opportunities to increase awareness without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.
Jay Self, a member of the team behind the survey, says: “Perhaps the most important message is that people who even loosely know someone with nystagmus or even those who have heard of it, tend to have a much greater understanding of the problems faced by those with nystagmus meaning that perhaps very soft things (like Richard Osman talking about it on the radio, for example) could be done to improve public awareness and appreciation without the need for the whole populous to have been to a seminar on it.”
Sue Ricketts from the Nystagmus Network, also involved in the survey, says: “It just goes to show that raising awareness of nystagmus, such as by marking Nystagmus Awareness Day each year, really does have an impact on the lives of people living with this condition.”
Thank you to those members of the nystagmus community who took part in the survey and shared it with their wider circles.
In November 2020, the Nystagmus Network shared news of a new research survey into people’s perceptions of nystagmus. The results have now been published.
The responses to the survey show that people with nystagmus tended to predict that the public would not think that the condition affects their daily lifestyle as much as it actually does.
It seems that members of the public had a greater understanding of challenges faced by individuals with nystagmus if they had met someone with nystagmus or if they had even heard of the condition.
This suggests that greater public awareness of the condition could be achieved through increased exposure of the condition through media and other online methods of promotion.
What this tells us, is that raising awareness of nystagmus is beneficial for everyone.
It is thought that further qualitative questionnaire studies regarding nystagmus could be carried out to identify specific issues that individuals with nystagmus have faced during lockdown and whether these are common to other disorders of vision.
We are excited to announce the start of a new research study into nystagmus
The aim of the study is to gather evidence about people’s perceptions of nystagmus. The results will help shape further nystagmus research and awareness raising strategies, eventually contributing to better understanding of the condition and improved quality of life as a result.
Anyone can take part in this research, whether they have nystagmus or not, know someone who has the condition or, even more importantly, have never heard of nystagmus before and don’t know what it is.
Participants just need to take a survey which will collect responses anonymously. Members of the nystagmus community helped devise some of the questions.
The survey takes 5 minutes to complete. Please take part today and then share the link with your friends, family, colleagues, whoever you can think of, especially with people who may have never heard of nystagmus before.
The more people who take the survey, especially people who don’t know about nystagmus already, the better information we will gather.