Take part in a project

What’s it about?

• Sodium valproate is a drug that can be used to treat epilepsy. For some people with epilepsy, sodium valproate is the only drug that will control their seizures. While it is very effective and safe for many patients, there are risks to an unborn baby if sodium valproate is taken by a pregnant person as it is harmful to babies in the womb. Sodium valproate can cause birth defects and problems with a baby’s learning and behaviour once born, and it is not recommended for use in pregnancy (unless it is the only drug that works for that person).
• We would like to speak to women with a diagnosis of epilepsy aged between 18 and 50 years to hear about your reproductive healthcare choices and your experiences when being prescribed sodium valproate (or even just talking about it as a potential treatment option with your epilepsy healthcare provider).
• We are looking for feedback on the patient support tool we are developing. We aim to get the tool as patient-centric as possible and would like to get a significant number of women with a diagnosis of epilepsy who have experience with valproate prescription involved in the design process to have their feedback and input to inform and guide the final tool

We want to hear from you, the patient expert, about how you feel healthcare professionals can best support women of reproductive age when they face difficult choices about their epilepsy treatment using drugs not recommended for use in pregnancy, and what should be included in a patient support tool. The NHS has a pregnancy prevention programme (PPP) that women of reproductive age must sign up for when prescribed sodium valproate to ensure babies are not exposed to the drug while in the womb. We are looking to explore what support women need to follow the pregnancy prevention programme when prescribed sodium valproate. We also want to understand how healthcare providers could ensure all women are supported with preconception planning if a woman prescribed sodium valproate experiences a change in her family planning preferences or goals (e.g., decides to start or expand her family).

Your views will help us to understand how healthcare providers can best support women prescribed sodium valproate with their reproductive healthcare, especially when considering contraception and preconception planning. It is really important that healthcare providers understand the most effective ways to support all women prescribed sodium valproate, especially when considering the risks of sodium valproate to unborn babies. This knowledge will be used to create and refine a patient support tool that can be used by healthcare providers when caring for women with epilepsy.

You can take part if you:

• Are female
• Are aged between 18 and 50 years
• Have a diagnosis of epilepsy
• Live in the UK and can take part in an interview in English or Welsh
• Have been prescribed sodium valproate at some point in your life or have discussed using sodium valproate with a healthcare provider. You do not need to be currently prescribed sodium valproate to take part.

You cannot take part if:

• You were assigned male at birth.
• You have never been prescribed sodium valproate or have never discussed with a healthcare provider the suitability of sodium valproate for their epilepsy symptom management.
• You cannot give informed consent.

What will I have to do?

Taking part will mean meeting one of our female researchers online on for an informal interview. The interview should take around one hour of your time via the Teams platform. You do not need to have the Teams app to participate (you will be sent a link to join from your PC, tablet, or mobile phone).

As a token of our appreciation for your time, you will be sent a £20 Amazon voucher after the interview.

To get involved, please follow the link below

https://cardiffmet.eu.qualtrics.com/jfe/form/SV_5hSM7FDgUJZyX4O

Who is conducting the research?

This research is being conducted by Sarah Griffiths (BSc), Cardiff Metropolitan University as a master’s dissertation research project. The research is funded by the Welsh Government.

Who has reviewed this study?

The study has been reviewed by Dr Rhiannon Phillips, Professor Delyth James and the Cardiff School of Sport and Health Sciences under the Cardiff Metropolitan University Ethics Framework.

What’s it about?

Research has found that if a person takes the medication sodium valproate while they are pregnant it can increase the risk of the baby developing a condition called Fetal Valproate Spectrum Disorder (FVSD). We are still learning about the health and development of children and young adults with FVSD and to do this we need mothers of young people who weren’t exposed to valproate in the womb as well as those who were.

In this study, we are hoping to find out whether young people with FVSD experience more social difficulties and difficulties with aspects of daily life than people who do not have FVSD. We are also interested in whether social difficulties are linked to the young person’s thinking, memory and self-control skills, and the amount of sodium valproate their mother was taking while she was pregnant with them.

The results of our study will improve our understanding about the needs of young people with FVSD and will allow us to develop better clinical and educational services for them.

Can I take part?

You can take part in the study if:

• You have epilepsy.
• You are the mother of a young person aged between 13 years and 39 years 11 months and 29 days.
• You are able to read English or have access to support to complete the questionnaires.

Unfortunately, you will not be able to take part in the study if the young person has a brain injury or other condition likely to raise the likelihood of social difficulties. Please contact us if you are unsure.

What will I have to do?

• You will be sent a link to an online form. Here, you will provide some details such as the young person’s age, gender and health. You will also be asked some questions about your pregnancy.
• You will then be asked to complete three different questionnaires. These questionnaires will ask about the young person’s social, thinking and memory skills. In total, filling out the online form and questionnaires should take no longer than 45 minutes. If, at any point during the study, you require assistance with completion of the questionnaires, you can contact the researchers.
• As a thank you, you will be entered into a prize draw with the chance to win one of two £25 vouchers.
  

How do I get involved?

If you would like to take part, you can complete a consent form by following this link: https://tinyurl.com/326c2jdh.

Who is conducting the research?

Kurt Armstrong, Trainee Clinical Psychologist, alongside supervisors Dr Rebecca Bromley and Dr Matthew Bluett-Duncan at the University of Manchester.

Who has reviewed this study?

The project has been reviewed by The University of Manchester Research Ethics Committee 5 (04/10/2022; reference: 2022-14881-25499).

What’s it about?

This study is exploring exceptional, anomalous (unexpected/unusual) and spiritual experiences that people with epilepsy have experienced. This study will consider the depth and breadth of these experiences and what impact the experiences have on the individuals’ view of spirituality. This information is being collected using an anonymous online survey.

Am I eligible to take part?

You can take part in the research if you:

• have epilepsy
• are aged 18 or older
• have experienced unusual, spiritual or anomalous experiences

What will taking part involve?

This research is collecting information using an anonymous online survey. The survey takes approximately 30 minutes to answer, and you can take breaks and skip any questions you don’t want to answer. The questions are about current and past experiences that could be considered spiritual, exceptional or anomalous.

How do I get involved?

You can find more information and the survey here: Epilepsy & Anomalous Experience

Who is conducting the research?

Dr Louise Spiers, of the University of Northampton and the University of Lorraine, France.

What’s it about?

The Brain development in Early Epilepsy (BEE) Study aims to track the development of babies with epilepsy, in order to understand features that might predict later conditions, such as autism.

This new project will help us to better understand how the development of babies with epilepsy is different to babies without epilepsy, and how these differences are associated with behaviour when they are older. By carrying out the research within the home, the researchers can work with families in a place of comfort and allow convenience to take part easily.

Autism and epilepsy commonly occur together, with up to 40% of children with epilepsy also being diagnosed with autism. Epilepsy significantly affects quality of life and shortens life expectancy in autistic individuals, but the reasons for these associations are largely unknown. Previous research often asked parents to remember certain aspects of their babies development after they had received an ASD diagnosis, and the parents may have forgotten things from this important time in the child’s life.

The BEE study aims to track early behaviour, brain and thinking development in children with epilepsy in their first two years of life. The goal is to better understand early development so that the researchers can find out what predicts autism. All of the research tasks will happen in the child’s home, including recording babies’ brain activity, and using play-based tasks and questionnaires to measure these different areas of development. By understanding how both of these conditions affect early development, the researchers hope to be able to improve the lives of people with epilepsy and autism.

You can take part if you:

• Have a baby between one and ten months old
• Your baby has suspected or confirmed focal seizures and/or infantile spasms
• Unfortunately you can’t take part if your baby has significant uncorrected sight or hearing difficulties, or if their seizures are not caused by epilepsy

What will I have to do?

This study will be assessing babies with epilepsy at different times, starting around the time of their first seizure, then again at 10, 14 and 24 months.

All the activities and tasks you’ll be asked to do as part of the research have been selected to be non-invasive and easy for babies and young children to take part in. The researchers will be asking parents to complete a number of online questionnaires and interviews related to their baby’s development, covering topics such as behaviour, sleep and language. Following this, they will be conducting three home visits to participating families’ homes to complete some play-based tasks. This includes an EEG (recording babies brain activity using a special hat) and an eye tracking activity to learn more about babies brain development, and how they pay attention to things around them.

To get involved, please follow the link below and complete a contact form

https://www.beestudy.co.uk/contact

Who is conducting the research?

Dr Charlotte Tye at King’s College London is the Chief Investigator for this study. The study is funded by an Epilepsy Research UK and Autistica fellowship, and will be co-sponsored by King’s College London and Guy’s and St Thomas’ NHS Foundation Trust.

What’s it about?

Digital health technology is the use of online tools, such as video appointments and mobile health apps, to support people’s health and medical care. However, whether people use this technology, and how they feel about it, varies a lot between different people and groups. We want to find out what factors affect the use of digital health technology for people living with neurological conditions, including epilepsy.

To do this we are carrying out a survey. The survey can be completed online, on paper or over the phone.

We are interested in hearing from everyone – people who use digital health technology and those who don’t.

Am I eligible to take part?

You can take part if you:

• Have epilepsy or care for someone living with epilepsy
• Live in the UK
• Are aged 18+
• Are able to understand the participant information sheet and complete the survey

What will I have to do?

You will complete one survey that will take about 40 minutes. It will ask you about your thoughts on digital health technology, your use of it, and some questions about your health and personal characteristics.

The survey can be completed online, on paper or over the phone.

How do I get involved?

If you would like to complete the survey online, you can access the participant information sheet and survey here: www.tinyurl.com/NeuroDigital

If you would prefer to complete the survey on paper or over the phone, please contact Dr Sarah Fearn at S.Fearn@soton.ac.uk or call 07721 846 596 .

You can find more information on the research here: www.tinyurl.com/NeuroDigitalParticipantInfo

Who is conducting the research?

This study is being carried out by University Hospital Southampton NHS Foundation Trust and is funded by NIHR ARC Wessex.

Who has reviewed this study?

This study has been given a favourable opinion by the London – Surrey Research Ethics Committee.

Study title

Relationship Experiences Following Epilepsy Surgery

What’s it about?

There is little research looking at the psychological outcomes after epilepsy surgery, with very little research exploring romantic relationship experiences after surgery. However, it is recognised that post-epilepsy surgery patients, their partners and their families can experience difficulties adjusting to a life without epilepsy, and this can impact relationships.

This study aims to explore romantic relationship experiences of those who have gone through epilepsy surgery.

It hopes to understand any relationship changes, improvements, or difficulties and how these experiences have been made sense of. It is hoped this study will add to the body of research around what may be helpful to aid people in maintaining healthy relationships after surgery.

If research can build an understanding on experiences of romantic relationships after epilepsy surgery, epilepsy surgery services can be designed with this in mind, particularly with regard to post-surgery support.

Participants will be given a £25 Amazon voucher as thanks.

Am I eligible to take part?

You can take part in the research if you:

• have had epilepsy surgery and experienced seizure reduction or freedom
• were married or living with a partner before and at the time of surgery
• are over 18 and UK based

For this study, this means that you can understand the information provided, and can use this information to make an informed decision whether or not you wish to take part.

Unfortunately, you are not eligible to take part in this research if any of the following applies to you: severe Learning Disability, Dementia of any type, non-English speaker or the development of paranoia or other severe psychiatric illnesses post-surgery.

If you are unsure whether you are eligible to take part in the study, please contact Zoe Poysden.

What will taking part involve?

If you decide to take part, we will:

• Arrange a time that is convenient to you to speak over video using Microsoft Teams or phone. An instruction sheet will be sent to show you how to access the video call. There will be a more detailed discussion about the study and any questions can be answered.
• If you would like to proceed, another call will be set up where the researcher will ask questions about your experience of relationships after epilepsy surgery. The conversation will take between 30-90 minutes.

How do I get involved?

Contact Zoe Poysden (main researcher) on 07929 784478 or email s2137956@ed.ac.uk

Is there a deadline?

The study will run until March 2023

Who is conducting the research?

Zoe Poysden, Clinical Psychologist in Training at the University of Edinburgh, MSc (Hons), PGCert, BSc (Hons).

Who has reviewed this study?

Dr David Gillespie, Consultant Clinical Neuropsychologist; Dr Charlene Plunkett, Senior Teaching Fellow; Dr Angus Macbeth, Research Director.

Research is all about discovery. It’s about collecting information in a well-planned and organized way, to answer questions and increase knowledge.

Through research, we can discover what works best for people living with different medical conditions.

This can include: diagnosis, treatment and the way health, social care and education services are provided. We can also have a better understanding of issues that affect people with medical conditions.

Research increases knowledge and understanding. It enables new innovations to be developed and tested.

Good health research helps professionals discuss the best options with their patients. All new developments are based on research that has been done in the past. Without research, we would have no evidence of what works when and for whom – we would just be guessing.

Without new research, there would be no new tests, treatments, preventions or understanding of any medical condition. There would be no understanding of how to support people to learn or live the best quality of life.

Epilepsy is a condition that is still poorly understood and there are many unanswered questions. These include issues such as:

• Epilepsy related deaths
• Diagnosis and misdiagnosis
• Achieving better seizure control
• Side-effects from anti-epileptic drugs
• Living with epilepsy and wellbeing
• Public attitudes towards epilepsy
• Social inclusion of people with epilepsy

It is only through research that can we have a better knowledge and understanding of these issues. This will lead to advances in the way they are addressed.

Epilepsy Action is frequently contacted by researchers who want to find people with epilepsy, or their carers, who are willing to take part in their research project.

They might invite people to complete a survey or take part in an interview, workshop or focus group.

Some research projects can take a long time to find answers – sometimes longer than a human lifespan. You might not benefit directly from research that is being carried out now. However, if you have ever been a patient of the NHS, you have already benefitted from research carried out in the past.

By contributing to research now, you will be adding to knowledge and the understanding of epilepsy for future generations. Some research projects might help you learn more about your own epilepsy or discover newer, better treatments that might help you.

Some people who have taken part in health research have said that it:

• Gives them hope
• Makes them feel active in their own healthcare
• Increases their sense of being valued, by contributing to findings of the future
• Lifts their feelings of wellbeing

Quality improvement happens when health or social care providers want to improve the quality of the service they provide. Quality improvement projects can take a lot of different forms, but the goal is always to improve a service.