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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 https://redcap.idhs.ucl.ac.uk/surveys/?s=9FNN88TLENTKY4YE.

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

Child wearing a Nystagmus Network T shirt and holding a mascot.

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

Guest post by Ana Semrov, UCL GOS Institute of Child Health

We are looking for volunteers to take part in our study called: What shapes quality of life of visually impaired children and young people.

What is the study about?

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.

What would I need to do?

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.

Who are we looking for?

We would like to hear from you if you are

  • Someone living in England or Wales
  • 8 to 18 years old
  • Have visual impairment caused by any medical condition

OR you are

  • Parent or caregiver of a child aged 8 to 18 years who has visual impairment

I’m interested! What should I do now?

First, we kindly ask you to 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 scan the QR code below or go to https://redcap.idhs.ucl.ac.uk/surveys/?s=9FNN88TLENTKY4YE

QR code

If you have problems accessing the weblink provided above, or if this sounds like something of interest of you but would like to hear more first, please let us know by calling: 020 7905 2241, or email: [email protected].

Thank you for considering taking part in our study.

Yours sincerely,

Ana Semrov (Study Researcher), Life Course Epidemiology and Biostatistics,
UCL GOS Institute of Child Health, 30 Guilford Street, London, WC1N 1EH;

020 7905 2241          : [email protected]

Professor Jugnoo Rahi (Professor of Ophthalmic Epidemiology), Life Course Epidemiology and Biostatistics, UCL GOS Institute of Child Health, 30 Guilford Street, London WC1N 1EH;

020 7905 2250                     : [email protected]

A doctor wearing scrubs is writing on a clipboard. She is smiling at the camera.

Nystagmus affects quality of life of children and their parents, confirms new research

A team at the Eye Hospital and School of Ophthalmology and Optometry at Wenzhou Medical University in China have recently published their research on the effects of childhood cataract surgery in young children. The results show that the impact of nystagmus, strabismus and amblyopia, resulting from the cataracts, not from the surgery, have a significant impact on the quality of life of both the child and their parents, when compared to families where the child has full vision. This will come as no surprise to families living with a child who has nystagmus.

The quality of life is affected most for the child because of the impact of these eye conditions on the functional vision, meaning that they are more likely to be limited in the activities they can take part in at school and elsewhere. For parents, the most significant impact on the quality of their life is the constant worry about their child’s eyesight.

It is thought that the best solution would be to bring cataract surgery forward in these children, before the nystagmus, strabismus or amblyopia has time to develop.

Read the full article online here

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:

https://survey.researchopinions.co.uk/index.php/482932?lang=en

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.

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’.

The Nystagmus Network logo and the words nystagmus research

Your nystagmus research questions answered – question 9

We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them.

Your questions were answered by Jay Self (JS), a Consultant Paediatric Ophthalmologist at University of Southampton and nystagmus researcher and Helena Lee (HL), a Consultant Ophthalmologist at University of Southampton and a nystagmus researcher.

Question 9: How can we best improve the quality of life for those with nystagmus?

(HL) Empowering patients and their families, making sure they have the information they need to understand their condition and that needs to be passed on to their schools or their employers on how best to optimise their circumstances. These are all little things that don’t require a pill or a prescription, but make a big difference. If, say, a child is put into the right place in front of the whiteboard for their null point or given extra time or things are blown up or they’re given an i-Pad. All these little things make a big difference before we prescribe anything or do anything else.

Then there are little things like optimising your glasses, making sure they’re the best they can be, with tints if you need them or checking your vision in the dark if you have a retinal dystrophy, or checking whether bright light makes a difference. It’s actually about understanding all those little things. Then you can get on to other things like contact lenses, surgery for null point if necessary, trying treatments such as the ones we try for acquired nystagmus and for congenital nystagmus. Sometimes there’s prism treatment. There’s quite a lot of stuff that can be done in your local clinic that doesn’t require anything very special, but just requires understanding of the condition.

(JS) I would agree. A lot of it boils down to information sharing support and also doing all the normal stuff in a timely way. I totally agree with the glasses correction. It’s easy to put that to one side when people are stressed about getting the genes tested. You’ve got to do all the normal things we do in a timely way and in a bespoke, sensible way.

A final thing is a massive thing that the Nystagmus Network can do, which they have been doing for the last few years, which is really celebrating good news stories, which I don’t think was a massive focus a few years ago. If you speak to David Katz or Richard Osman they almost say that ‘nystagmus made me,’ ‘it’s made me do the things I’m doing and it’s actually given me super powers.’ You cannot push that message too much, especially when you’ve got new mums with little babies and they think it’s the end of the world.

The Nystagmus Network is enormously grateful to Jay and Helena who gave up their time on a sunny Saturday afternoon to answer questions from the nystagmus community so openly and fully.

Fight for Sight partners with the Nystagmus Network for its next grant round

Fight for Sight has today announced a call for Small Grant Award applications. The UK’s leading eye research charity is this year able to offer thirteen awards to fund sight saving clinical research, ten of which are being jointly funded with other charities.

NEW THIS YEAR Fight for Sight / Nystagmus Network offer TWO Small Grant Awards

Two awards for clinical research projects focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments.

Michele Acton, Fight for Sight’s Chief Executive, said: “Fight for Sight’s mission is to stop sight loss and we are delighted to be able to work in partnership with others to help deliver our mission.”

Find out more here.

rebecca presents at the Nystagmus Network Open Day

Nystagmus and Quality of Life

A research paper is republished this month into the quality of life of people living with nystagmus. Professor Irene Gottlob and Dr Rebecca McLean from the University of Leicester shared their findings in the British Journal of Ophthalmology. Their report followed an extensive research study, funded jointly by the Nystagmus Network and Fight for Sight. The purpose was to measure the adverse effects of living with nystagmus across a range of areas of everyday life, with a view to developing a Quality of Life tool. It was concluded that nystagmus does indeed affect every aspect of life.

Read the full report here.