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What shapes quality of life of visually impaired children and young people?

Guest post by Ana Semrov, PhD student and study researcher, Vision and Eyes research team at UCL

Childhood visual impairment can have a significant impact on a person across their whole life, affecting their social and educational outcomes, career prospects and quality of life. However, how individual children and their families adapt to living with a visual disability is very variable. 

We aim to find out what helps children and young people with visual impairment and their families adjust to living with impaired eyesight and helps them have a good quality of life. We hope this will help us to develop and improve care and support for families of children and young people with visual impairment. 

To do this, we are inviting children and young people with visual impairment and their families to take part in our study. Taking part in this study would involve both the child/young person with visual impairment and at least one of their parents/carers completing some questionnaires about topics like general health, well-being, and relationships with others.

If you would like to participate, please fill in a few questions that will tells us a bit about you to help us make sure this study is right for you. To answer these questions, please go to

This research is funded by Fight for Sight and Ulverscroft Foundation, awarded to Professor Jugnoo Rahi.

A group of people wearing white coats sit in rows behind laptops with a lecturer pointing at a screen.

Eye health experts seek to refresh eye research priorities

Eye experts across the UK are calling for your input into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities that were first published in 2013.

Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly.

Following a review of the existing eye research priorities by the NIHR Ophthalmology Specialty group and the UK Clinical Eye Research Strategy  earlier this year, a survey has been developed to help fine tune which of the 98 potential research questions should be taken forward as part of the refresh. 

Professor Rupert Bourne, NIHR National Specialty Lead for Ophthalmology said:

“It’s almost 10 years since the UK last published its eye research priorities and progress has been made in learning more about each of those 12 key areas that were set at the time. This survey is designed to help us assess whether these are still the right priorities for us to be focusing our attention on, and to delve deeper into some of those, or whether there are new areas of eye research that we now need to make a priority.

We are encouraging all those with an interest in eye health and research to take part in the survey to help shape the direction of future eye research.”  

The survey is open to all eye healthcare professionals and researchers as well as patients, carers and members of the public to participate in. The survey feedback will inform the final Top 10 updated priorities across different eye subspecialties. 

Please click here to take part in the survey. 

The survey will close on 9 August 2022. 

Take part in the survey here

Thje logo of City Yniversity of London and the words 125 years.

Care givers survey

Participants needed for research into the effects of the pandemic on those caring for and supporting people living with a visual impairment

The Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London are looking for volunteers, aged 18 or over, who provide care and support to an individual living with a visual impairment in the UK to take part in a study investigating the effects of the pandemic on those with a visual impairment, their caregivers and those providing low vision services to them; and how lessons learnt can inform future low vision services and support.

As a study participant, you are invited to complete a questionnaire about your experiences and views about how the pandemic affected you as a caregiver for an individual living with a visual impairment. The questionnaire is written, and the responses are required, in English. The questionnaire in available on line here.

If you prefer, Word document attachments of the questionnaire can be e-mailed to you or a paper version is available.

Questionnaires would be expected to take 10 – 15 minutes to complete.

In appreciation of your participation, you would have the opportunity to be entered into a prize draw for a £50.00 Love2Shop Gift Card.

For more information about this study, or to volunteer to take part, 
please contact: Liz Frost at [email protected]

This study has been reviewed by, and received ethics clearance, through the Optometry Proportionate Review Committee, in the School of Health Sciences, City, University of London (ETH2022-0840).

A technology demonstration.

Quality of Life Research

Acumen are currently organising research in the UK on behalf of a national sight loss charity to test a quality of life measure that is currently being developed. For the survey they are looking to blind and partially sighted people.

The quality of life measure will help the charity assess the ongoing wellbeing of people in relation to the services they use. All responses will help to refine the questions as necessary.

The research involves a 15 minute online survey and anybody contributing will receive £10 as a thank you for their time.

People interested in the study should follow the link below to complete the screening questions to register interest:

Acumen will then send the full survey details should people meet the criteria for the study. In this email everybody will receive a unique ID number so that they can record the response and provide the incentive upon completion.

The main criteria for people to be eligible for the study is that they are registered partially or severely sight impaired.

The Nystagmus Network has checked with Acumen that this research is backed by a bona fide institution, that there are no commercial interests and that data with be correctly stored and privacy protected.

A close up of a man's eyes.

New nystagmus research

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.

Take part in the survey here

Thank you.

The logo of the Nystagmus Awareness Day 20 June.

A YouGov nystagmus awareness survey

The Nystagmus Network commissioned a YouGov survey in May 2020, ahead of Nystagmus Awareness Day on 20 June, to see how aware the UK population is of nystagmus. The survey was free of charge, thanks to a competition, run by the Small Charities Coalition of which we are a member.

The headline results

82% of people have never heard of nystagmus

14% said a friend, acquaintance or family member has the condition

Misconceptions about nystagmus

Once we had explained what nystagmus was, we asked people in what other ways they thought nystagmus might affect a person apart from their eyesight. Alongside the usual suggestions of difficulties with reading and writing, employment, socialising and getting around, a startling 24% thought that people with nystagmus would also have learning difficulties.

One of the Nystagmus Network’s strongest messages is that, whilst nystagmus can affect access to learning, it definitely does not affect ability to learn.

It seems we still have some way to go in delivering this message.

Awareness improves quality of life

Finally, we asked what people thought would most help improve the quality of life of people living with nystagmus. The most popular suggestions were medical research, access to information and adapted technology, with 59% agreeing with us that greater awareness in the general population helps those living with the condition.

We are grateful to YouGov and the Small Charities Coalition for this opportunity to poll the UK population at large and pleased to report that all 250 of our respondents are now ‘nystagmus aware’.

Technology use in young people with impaired vision: a new study

Guest post from Saima Begum, University College London

I am a student at University College London, studying at the Institute of Education and I am emailing to ask for your help with my Masters research project into Vision Impairment.

This project aims to examine technology use in young people with vision impairment, and whether this influences their educational attainment.

There is much research that has found that technology such as screen-readers on phones have been useful for people with vision impairment to be able to function in everyday life, so my project is aiming to look at whether technology use can also have positive effects on education.

Moreover, because of the increasing use of social media, I plan to look at whether technology use can have a positive effect on friendships. This data is important to collect as it will show how young people with VI use technology, and how this could be utilised so they perform better in school.

Participants are invited, between the ages of 11 and 18.

All questionnaires can be completed online, and participants can do this from the comfort of their own homes.

Click or tap here for the questionnaire 

The questionnaire is accessible for screen readers. The first page of the questionnaire also includes an information sheet with more details regarding the project.

Children reading The Gruffalo.

The impact of COVID-19 on visually impaired children

A guest post from Rosaleen Dempsey, RNIB

Hi there

I am from the children’s services in RNIB. Wonder if you would mind sharing a survey for families about the impact of the COVID-19 crisis on the education and development of children with VI. Survey has been designed by partners in the sight loss sector and is U.K. wide.

Parents’ survey closing this Friday – 15 May

This is the final week to to tell our governments/assemblies across the U.K. about the impact the COVID19 crisis and lockdown is having on the learning & development of your children and young people with VI. Please take a few minutes to fill it in if you can.

Take the survey here

Many thanks,
Rosaleen Dempsey,

Research into decision making for genetic testing

A team at Cardiff University is conducting a study to identify the factors that influence the decisions made by genetic counselling patients about proceeding with genetic tests. They are looking to recruit patients who are undergoing genetic testing or pre-natal testing to take part in the study by recording their thoughts and feelings as they go through the decision making process. 


Diagrammatic representation of a typical circadian rythm.

Circadian Therapeutics Sleep Health Survey

Circadian Therapeutics are seeking vision-impaired individuals between 18 – 70 years to participate in a research project exploring experiences of sleep and daily rhythm disruption.

In partnership with the Blind Veterans UK, Circadian Therapeutics is running a survey to identify sleep and circadian disruption experienced by vision impaired individuals in order to provide informed feedback to the Visually Impaired UK community about living with sleep and circadian disruption. The research team are now opening up the survey to members of the nystagmus community.

The aim and purpose of the survey:

Sleep and biological daily rhythms (circadian rhythms) are essential to maintaining the healthy balance and functioning of the mind and body. Our master internal circadian clock coordinates our body’s daily physiological and behavioural cycles to the Earth’s solar day – including daytime alertness and sleep timing, to synchronization of changes in hormone secretion, to fluctuations in mood and cognitive ability.

Sleep and circadian rhythm disruption (SCRD) is widely experienced in our communities, with the scope of the problem often underreported. Common suffers range from teenagers, new mothers and shift workers, to individuals with depression and the severely Vision Impaired, and is an underlying feature in many of the most challenging diseases of our time, including cardiovascular disease, cancer and neuropsychiatric diseases.

The Sleep and Circadian Health Survey

The aim of this survey is to identify sleep and circadian disruption experienced by Vision Impaired individuals in order to provide informed feedback to the Visually Impaired UK community about living with sleep and circadian disruption.

Taking Part

Participants will be asked to complete a questionnaire (online or by telephone) to understand more about vision status, health, and sleep. The questionnaire will also assess eligibility to participate in Part 2 of the research study: including 4-weeks of at-home sleep and daily rhythm monitoring, and possibly followed by a 2-night stay at the Blind Veterans UK Centre in Brighton to measure a series of physiological and biological markers. 

If you would like to complete the survey, or have any questions please contact Circadian Therapeutics:

Via email: [email protected]

By phone: 01865 841 532

Find out more about the study by clicking this link to the Circadian Therapeutics website.