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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]

Walk with us!

There’s still time to register to join Team Nystagmus Network to walk Eye to Eye at 11am on Sunday 10th March. You can choose to walk the 4 or 14 mile route.

Team Nystagmus Network sets off at 11am.

Who’s on the team?

Join Ella and Sam, Andy and Heidi, Andrew, Orla, Nikki and Tremaine, Marc, Mila, Carmen, Imma, Becky, Maria and Katie, Trudy and team ‘Oscar’, and not forgetting Frances. So far these wonderful people have already raised a massive £5,000 for nystagmus research at Moorfields and UCL. Please come and join them and help boost their total even higher. Together, we can make a real difference.

Nystagmus Network trustees will be at the starting point to wave you off and will be walking the route with you, too.

Set up your Justgiving page

Click here to join the team today then set up your Justgiving page and link it to the Nystagmus Network to ensure that every penny you raise goes to nystagmus research.

THANK YOU!

Matt is joining the abseil

Matthew Dawson will be abseiling down the UK’s allest piece of public art on 23 September to raise much needed funding for nystagmus research at Moorfields and UCL. He is joining Team Nystagmus Network Abseil at the suggestion of his wife and for his young son, Owen, who has nystagmus.

Apparently, some of Matt’s sponsors have asked him to wear fancy dress for the abseil. Maybe he will if his sponsorship total gets high enough!

Please sponsor Matt if you can.

Vicky and Claire show amazing support

Vicky and Claire are both trustees of the Nystagmus Network. That’s not all they have in common!

On 23 September they will both be scaling down the Olympic Park Orbit alongside their Team Nystagmus Network Abseil team mates.

They’re doing it to raise funding for nystagmus research. Every penny they raise will go directly into pioneering work at Moorfields Eye Hospital and University College, London.

You can help support them by visiting their Justgiving pages.

Click here to sponsor Vicky and her husband, Richard.

Click here to sponsor Claire.

Thank you both. We’re all so proud of you!

Children can try programming

A research associate at the UCL Interaction Centre is working on a project that seeks to develop an accessible toolkit to enable children with different visual abilities to write basic computer programmes through the manipulation of physical objects. Would your child like to take part in a 2-hour session where, together with a peer of their choice, they will have the chance of interacting with the prototype and carrying out some music-based programming activities?

Please see flyer for details.

New research project on visual crowding in CIN

A new research project is being undertaken at Moorfields Eye Hospital and University College London. The aim of the study is to understand better the visual abilities of people with congenital nystagmus, with a particular focus on visual crowding, a phenomenon which occurs when an object that is visible in isolation becomes impossible to recognise when surrounded by other objects.
The Nystagmus Network is supporting Mr Vijay Tailor, Paediatric Clinical Trials Research Orthoptist and Clinical PhD Training Fellow, to recruit suitable participants.
Subjects should have a formal diagnosis of Congenital Idiopathic Nystagmus and be aged 18 to 50.
People who also have albinism or strabismus amblyopia (‘squint’ or ‘lazy eye’) are not suited to this particular study.
If you have short or long sight, this is not a problem provided you wear prescription glasses or contact lenses to correct this.
If you would like to find out more about the research project and apply to take part then please complete and submit the form below. By completing the form you are giving us permission to pass on your details to the relevant research team.
Thank you.