research participation opportunity

Please help Asmaa with her research

Asmaa is a postgraduate research student at the University of Sheffield. She’d love you to take part in her current study. Here she is to introduce it:

“Hi, I’m Asmaa, an eye doctor from Egypt. Throughout my career, I’ve met a lot of people with low vision for whom we have minimal low vision clinical and support services. My passion to help them and start a low vision clinic at my University Hospitals in Egypt has led me to Sheffield to explore the available services for young people with low vision here in the UK, so that I can help my patients when I return home. Your experience with these services and your ideas for service improvement will help me a lot with my new service in Egypt.”

“If you are interested in sharing your experience in an online interview, and you are aged between 16 and 25, please contact me:

[email protected]

or just follow the link below to indicate your interest and I will email you our research study details.

https://docs.google.com/forms/d/1-kz2UapQ_HsTbO8Vnk8Eycy3W_zY5ZsZlZBLsiCTtGA/edit

You can also read our study announcement below just in case you need more details.”

Your experience matters and would help us improve low vision services for children.If you are a vision-impaired person, aged between 16 and 25,
and have accessed UK- based eye clinic and low vision services as a child or young adult, we would like to invite you to take part in a research project.We want to understand the impact of paediatric low vision clinical services from your point of view. We would like to invite you to talk about your experiences in a Google Meet interview.
The research team is based at the Division of Ophthalmology and Orthoptics, University of Sheffield.

For more details, contact Asmaa Elgohary

[email protected]

Or follow this link:

https://docs.google.com/forms/d/1-kz2UapQ_HsTbO8Vnk8Eycy3W_zY5ZsZlZBLsiCTtGA/edit

An eye care practitioner is testing a patient's eyes using a RETeval device.

Take part in research for shorter waiting lists

Jay Self is Associate Professor at the University of Southampton and a long-term supporter of the Nystagmus Network. He is a nystagmus researcher and eye doctor and is asking us for help with a new research project. Please take part if you can.

Often people with nystagmus (and other eye conditions) have to wait weeks, months or even years to get a diagnosis and much of this is due to NHS waiting lists for specialist tests.

Jay and his team have studied the use of a hand-held device (RETeval®) which can help diagnose many eye conditions and, importantly, can be used in any eye department, anywhere in the country meaning shorter waiting times.

The work so far has found that the device, used as a screening tool, could mean that patients no longer have to wait so long for some very specialist tests called Electroretinograms (ERGs) and Visual Evoked Potentials (VEPs).

They now want to run a large study and need help from people who have been through eye services to advise from a patient’s eye view.

Involvement would mean taking part in a TEAMS or ZOOM meeting a couple of times a year to offer your opinions. Attendance is voluntary, of course.

If you would like to help, please email Mr Self and his team at [email protected] and they will be in touch when the meetings are planned.

Thank you for your help.

This research is supported by Gift of Sight and by the Nystagmus Network who purchased the RETeval® device.

University students studying together in a library.

Making university life better for visually impaired students

Research participation opportunity

Developing university guidance for the socio-emotional needs of students with vision impairment

PARTICIPANT INFORMATION

You are invited to take part in a research project conducted by the Institute for Mental Health, the University of Birmingham. This research work is led by Dr Ifigeneia Manitsa, Research Fellow in Youth Mental Health.

Before you decide, it is important for you to understand why the research is being done and what it will involve. This Information Sheet will tell you about the purpose of the research, along with its potential risks and benefits.

If you agree to take part, we will ask you to sign a Consent Form. If there is anything that you are not clear about, we will be happy to explain it to you. Please take as much time as you need to read it. You should only consent to participate in this research study when you feel that you understand what is being asked of you, and you have had enough time to think about your decision.

It is up to you to decide whether or not to take part. If you decide to take part, you are still free to withdraw at any time during your participation in this study and without giving a reason. If you have any further questions, please contact Dr Ifigeneia Manitsa at [email protected]. If you have any medical/other problems which make it difficult for you to read this information, please contact Ifigeneia for a verbal explanation of the research. If you choose not to take part at all or decide to withdraw your data, you will not be paid for your participation.

When you are happy that you have all the information you need to be able to decide whether or not you would like to take part in the study, please complete the enclosed consent form and return it to Dr Ifigeneia Manitsa at [email protected].

Current Study

The Institute for Mental Health at the University of Birmingham in collaboration with the Vision Impairment Centre for Teaching and Research (VICTAR), Kingston University, University of Edinburgh, Abertay University and Bristol Sensory Support Service are conducting research to understand more about the university experiences of individuals with vision impairment who are currently enrolled and pursuing a university degree (undergrad, masters, and doctoral students) and/or have recently (within the last five years) completed a university degree in the UK. This research project is also looking at the experiences of professionals from national organisations (e.g., consultants and habilitation officers) and university staff (e.g., academics and disability officers) supporting students with vision impairment in Higher Education. This project is funded by the Thomas Pocklington Trust Grants Programme.

What do I have to do?

This study will consist of two phases. First, we would like you to complete a short demographic questionnaire and participate in an online interview with us via Microsoft Teams in September/October 2023 (Phase 1). The online interview will last approximately one hour, and you will be asked to talk about your experiences in Higher Education and what type of support you are receiving (or received) during your university degree. We would also like to hear your ideas and suggestions for how universities might better support students with vision impairment in the future. Then, our research team will need some time to analyse the data that we will collect during Phase 1.

In Phase 2 that will run from February to April 2024, we would like to conduct three online 60-minute sessions with 4-6 students with vision impairment. Researchers will ask some questions and you will be able to share your thoughts and experiences about the support you receive with others in these online sessions. You will also be asked to discuss the findings of Phase 1 and discuss the socio-emotional support that should be provided to people with vision impairment in Higher Education. In addition, during these online group sessions, the research team may ask you to discuss the mental health and wellbeing guide provided by Thomas Pocklington Trust for students who want to go to university (https://www.pocklington-trust.org.uk/student-support/university/mental-health-and-wellbeing/). The transition guide “Your future, your choice: bridging the gap” developed by RNIB and VICTAR (https://media.rnib.org.uk/documents/Your_Future_Your_Choice_Bridging_the_Gap.pdf) and some of its online resources may also be used and discussed during these online sessions. You may also wish to follow up comments that other people have said and to ask your own questions. You do not have to answer every question, nor should you feel pressurised to talk.

Considering we can only recruit up to 4-6 students with vision impairment for our online group sessions, we will have to give priority to the students who contact us first. Furthermore, you can decide to only participate in Phase 1 if you do not wish to participate in Phase 2.

We will also be conducting focus groups with people with professionals who work in UK universities to support students with vision impairment.

How will the things I say be used?

Overall, this research project aims to explore the lived experiences of students with vision impairment in Higher Education and to identify the lack of holistic and person-centred approaches to the socio-emotional needs of individuals with vision impairment wishing to attend HE in the UK. This project also aims to initiate the development of university guidance that will address their socio-emotional needs and educational inclusion.

After each session, a summary report with the main findings will be sent to you. Descriptions of research findings will be published in newsletters of the professional support groups and educational institutions involved. In addition, we will publish the findings from the study in scientific journals and will present the results at relevant conferences. No names and identifying information will be published in any reports and future publications. A full report will be submitted to the Thomas Pocklington Trust who may wish to upload it on their website. All of your personally identifiable information will remain anonymous and confidential.

We will video record the focus groups so that we have an accurate recording of the discussion.

Most participants enjoy taking part in research however if this brings up unwanted feelings and you wish to talk it over potential sources of advice are:

The Samaritans – phone: 116 123; email: [email protected]

Citizens Advice – www.citizensadvice.org.uk

RNIB Helpline – 0303 123 999

Will what I say be anonymous?

In our publications and reports your responses will be anonymised but in rare cases where someone knows you very well others may be able to recognise you. Also, the other participants in the online group sessions will hear your responses. We will remind participants that what is said during these sessions must not be discussed outside these online group sessions; however, this relies on everybody sticking to this rule. Further, if you choose to use your camera during the teams call, you may be visually identifiable. You can choose not to turn on your camera if you prefer.

If, during the course of the interview, you inform us that you or someone you know is at serious risk of harm, we will take the appropriate advice and act accordingly.

What should I do if I change my mind?

During the course of the online group session, you can leave at any time by clicking on the ‘leave meeting’ button. Your data will not be included in the research.

If after taking part in an online interview and/online group session you decide that you no longer wish to take part in the project, please email the project lead Ifigeneia Manitsa ([email protected]) and we will remove and permanently delete your data. You must do this within one week of taking part in both tasks (online interview and online group session) otherwise we will not be able to remove your data as we will have begun to analyse it.

Where will data be stored?

The data collected will be kept in locked or password protected storage at the University of Birmingham or held on a password protected database. All information gathered about you will be stored separately from any information that would allow someone to identify who you are (this is known as personal identifying information, e.g., your full names, your address, your contact details). Your personal identifying information will be stored on a local password-protected server and only members of our research team will have access to it. We will only be able to trace the information we have collected about you back to you using a special reference number which we will store in a password protected database held at the University of Birmingham. Only members of our research team will have access to that database. Personal identifying information will be treated as strictly confidential and handled in accordance with the provisions of the Data Protection Act 2018 and the General Data Protection Regulation (GDPR) 2018.

Do I get anything for taking part?

In Phase 1, as a token of appreciation for your time you will receive a £20 payment.

In Phase 2, you will receive a £20 payment after each online group session (three payments in total).

If you need a carer present during the interviews to support you, then an additional payment of £10 will be offered to your carer for assisting you during the interview process.

What will happen to the data afterwards?

The information that you provide will be stored on a local password-protected server and only members of the research team will have access to it. All personal details will be kept separately from the information collected. Participants will be identified by a unique number so that it will only be possible to connect results to individuals via this number. This will ensure that results are kept anonymous.

At the end of the study, your personal details will be destroyed unless you tell us otherwise. This means that we would no longer be able to trace the results of your assessments back to you. It is optional for you to be contacted by the same research team for future ethically approved research of similar nature. If you agree, the research team will contact you according to your preference via phone or email. If you agree to be contacted for future studies, you do not give consent to future studies. This option does not impact on the participation of this study or any future study. This database is password protected and only approved members of our research team have access to your details. We do not share your details with anyone outside the research team.

What happens if I decide that I no longer want my details on the database?

All you would need to do is contact Ifigeneia, the Principal Investigator of the study, at [email protected]. Your details will be removed from the database immediately.

Consent

After having read all the information and having received appropriate responses to any questions that you may have about the study you will be asked to give your consent to participate in the study if you decide that you do wish to participate. We need to receive consent from you in order for you to participate.

Withdrawal

You are free to withdraw from the study within 7 days from taking part in the one-to-one interview (Phase 1) and each online group session (Phase 2). Should you choose to withdraw from Phase 1, you can also request that any data collected from your participation be withdrawn from the study. If you request this, any data collected from you will be located and destroyed. However, once each online group discussion is complete (Phase 2), we will be unable to destroy any of your data. However, we will exclude them from the analysis. Even if you decide to withdraw from the study, you will still receive your compensation.

What if there is a problem?

If you have a concern about any aspect of this study, you should ask to speak to the researchers who will do their best to answer your questions. Please contact the Principal Investigator Ifigeneia Manitsa at [email protected] in the first instance. If you remain unhappy and wish to complain formally, you can contact: Professor Ed Wilding; Head of School; School of Psychology, University of Birmingham, Birmingham, B15 2TT, by email: [email protected] or by phone on 0121 414 4931.

Review

The study has been approved by the Science, Technology, Engineering and Mathematics Ethical Committee.

Further information

If you would like any more information about the study, please contact the Principal Investigator Ifigeneia Manitsa at [email protected].

Research team

Principal Investigator: Dr Ifigeneia Manitsa, Research Fellow in Youth Mental Health, Institute for Mental Health, School of Psychology, University of Birmingham, [email protected]

Co-Investigator: Dr Rachel Hewett, Associate Professor, School of Education, University of Birmingham

Co-Investigator: Dr Fiona Barlow-Brown, Associate Professor, Department of Psychology, Kingston University London

Consultant: Professor John Ravenscroft, Moray House School of Education and Sport, IETL, University of Edinburgh

Consultant: Dr Mhairi Thurston, Senior Lecturer, School of Applied Sciences, Abertay University

Consultant: Dr Joao Roe, Head of Sensory Support Service, Bristol City Council

A person is undergoing a sight test in a clinic.

Research participation opportunity in Cambridge

This study aims to look at how the brain behaves in response to changes in vision. There will be two visual examination tasks: one which involves a standard vision chart displayed on a computer screen and the second which involves a microperimetry exam to assess visual field sensitivity. There will also be two behavioral computerised tasks. All of the tasks have been approved and validated by the ethics committee as well as previous researchers who have used these methods. None of the tasks involve any risk and we are offering travel expenses of up to £50 per person to Cambridge. The research will take place at the Vision and Eye Research Institute at Young Street in Cambridge and the tasks should take no longer than 60 minutes. Only one visit will be required.

To take part, please contact Natalie Assaf by email at [email protected]

A poster promoting participation in the University of Sheffield interview research on paediatric services.

New low vision study calls for participants

Are you aged between 16 and 25?
Have you accessed UK-based eye clinic and low vision services as a child or young adult?
If so, a team at the University of Sheffield would like to invite you to take part in a research project.
They want to understand the impact of paediatric low vision clinical services from the patient’s point of
view. You can talk about your experiences in a Google Meet interview.
The research team is based at the Division of Ophthalmology and Orthoptics, University of Sheffield.

For more details, contact Asmaa Elgohary by email at [email protected]
or follow this link

Research participation opportunity in Plymouth

Perceptual Learning for Nystagmus

We are delighted to offer people who have nystagmus the opportunity to take part in an exciting new research study at the University of Plymouth, in collaboration with Cardiff University and jointly funded by the Nystagmus Network and Fight for Sight.

Who are we looking for?

Anyone aged between 18 and 35, diagnosed with Infantile (Congenital) Nystagmus

What will you be doing?

Complete vision tests on computer at the University of Plymouth to assess how well you can see static and moving letters and static dots
Complete vision training at home for 1 hour per day, 3 days a week over a period of 4 weeks

Who are we?

Dr Mahesh Joshi

Dr Asma Zahidi

For more information, please contact: [email protected] or [email protected]

Travel Expenses

We will be paying your travel expenses to Plymouth up to £50.

New research explores parental experience of their child’s diagnosis

What is the psychological impact on parents immediately following a child’s diagnosis of congenital sensory impairment?

Rebecca Greenhalgh, Trainee Clinical Psychologist at Coventry University is leading a new research project, funded by Coventry University, School of Psychological, Social and Behavioural Sciences, designed to gain a better understanding of parents’ experiences immediately following their child’s diagnosis with a sensory impairment. It’s hoped that this information will help medical staff, midwives, psychologists and social workers provide better support during the period of the diagnosis.

The research was granted ethical approval by Coventry University’s Research Ethics Committee.

Participants will be interviewed by the lead researcher and be asked a number of questions about their experiences of receiving their child’s diagnosis of congenital sensory impairment, including speaking about how they felt at the time, what their thoughts were and their immediate reactions.

The interview will last between 60 and 90 minutes and will take place either remotely via a secure online platform, or face to face, according to participants’ preferences.

If you would like to take part, please contact the lead researcher Rebecca Greenhalgh (see contact details below). You will receive participant information and be asked to complete a consent form before taking part.

Researcher contact details:
Lead Researcher
Rebecca Greenhalgh, Trainee Clinical Psychologist
Email: [email protected]

Take part in research

Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London

People with a visual impairment needed for research into the effect of the pandemic on people living with a visual impairment

We are looking for volunteers, aged 18 or over, who are 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 have the option to complete one or two online questionnaires about your experiences and views, one is about how the pandemic affected you and your wellbeing, the other asks about the effect on your Low Vision support services. There are options of an e-mailed Word document or paper version of the questionnaire if required.

If you are not able to answer the questions on line, computer / tablet / smartphone or on paper but would like to take part, please e-mail [email protected] with your phone number and she will contact you to arrange to help you to complete the questionnaires over the phone.

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] or –

To take part in the questionnaire about the effects on your wellbeing click on this <link>.

To take part in the questionnaire about the effects on your LV support services click on this <link>.

You are welcome to take part in either or both of the questionnaires.

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 (ETH2021-2175).

If you would like to complain about any aspect of the study, please contact the Secretary to the Senate Research Ethics Committee on 020 7040 3040 or via email: [email protected]

City, University of London is the data controller for the personal data collected for this research project. If you have any data protection concerns about this research project, please contact City’s Information Compliance Team at [email protected]

Jon Erichsen speaks with delegates at a Nystagmus Network Open Day.

Take part in research at Cardiff University

Professor Jon Erichsen and his team from the School of Optometry and Vision Sciences, Cardiff University, Nikita Thomas, Katherine Ward and Onyeka Amiebenomo invite you to take part in nystagmus research.

Following their demonstrations at virtual Open Day 2021 of various nystagmus and eye tracking studies currently being carried out, you are warmly invited to apply to take part.

If you’re interested, please complete the form below. We will pass your details on to the Cardiff University team, who will be in touch with you.

Vision impairment and employment – a research project

Guest Post: Dr. Liz Ellis, VICTAR, University of Birmingham

The Vision Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham is conducting research to understand more about the factors which contribute to employment outcomes (the good and not so good) for individuals with a visual impairment, living and/or working in Greater London. This project is being funded by the Vision Foundation and will help to ensure their work is evidence-based and impactful.

We would like to talk with people with vision impairment who are working at the moment, those who are not working, those working in their dream job, those who are looking for a career move, those in part-time jobs, as well as those working full-time – we want to hear about a range of different experiences via an online focus group.

We would also like to talk, via an online focus group, with professionals who have experience of supporting individuals with vision impairment into employment.

Anyone who is aged 18 years or over, in Greater London and interested and able to help should click the link for more information and the option to register to participate. All participants will receive a £20 shopping voucher as a token of appreciation for their time.

For more information please contact Dr. Liz Ellis by email at [email protected]