Carer perceptions of situations affecting the chances of having a seizure in people with epilepsy and a learning disability

University of Cambridge, UK

About the study

The aim of the study is to find out about the situations in which seizures occur, in adults and children who have epilepsy and learning disabilities. WE are interested in the perspective of those who provide care or support for them. We are asking those who care for or support people with epilepsy and a learning disability if there are any physical, environmental or emotional things that might affect the chances of having a seizure. We hope that if we understand which situations are associated with greater risks of having a seizure, this will lead to improved seizure management. Your responses are valued whether or not you have noticed anything about when seizures seem more likely to occur in the person you care for.

When will this study be recruiting?

We will be recruiting until September 2012.

What will participants be asked to do?

Participants will fill in an online questionnaire which will take about 30 minutes to complete.

Who can take part?

You are invited to take part in this study if your answer is ‘yes’ to all the following questions:

• Do you live in the UK?
• Are you aged 18 or above?
• Do you provide care or support for a child or adult who has epilepsy and a learning disability? 
• Have you known this person for at least a year?
• Are you the one who knows this person best, out of the people who care for or support this person?
• Has the person you support had at least one epileptic seizure in the last 12 months?

Who is conducting the research?

We are researchers based in the Cambridge Intellectual and Developmental Disabilities Research Group at the University of Cambridge. Ms Jo Illingworth is a postgraduate research student at the University of Cambridge. Dr Howard Ring is a researcher and clinician specialising in learning disabilities and epilepsy.

Who has reviewed this study?

Carers of people with epilepsy and learning disabilities, healthcare professionals working in epilepsy, and non-professionals with an interest in epilepsy have been consulted during the development of the questionnaire. The study has been reviewed and approved by the Psychology Research Ethics Committee at the University of Cambridge, UK (ref: 2011.37).

Interested?

For further information and to access the survey, please go to the survey website and enter the password “cambridge" (all lower case).

Take part

If you have any queries about the research, please contact the researcher, Jo Illingworth, at jli22@cam.ac.uk