"Dear seizure" - Write a letter to your seizure(s).

Study title

“Dear seizure”: A narrative analysis of the experience of epileptic seizures.

What’s it about?

The researchers would like to find out more about what it is like to experience epileptic seizures. They will use the information to write research papers and publish a booklet for health and social care professionals. This will help to develop an understanding of what it is like to live with seizures and ways to support people experiencing seizures. The researchers will also look at how the information fits into an existing model of adjustment to long-term conditions. They also plan to develop this model for health and social care professionals to use when they support people living with epilepsy seizures.

Am I eligible to take part?

To be eligible to take part, you must meet the following criteria:

  • You were diagnosed with epilepsy between the age of 18 and 60 years old;
  • You were diagnosed with epilepsy in the last fifteen years;
  • You have experienced at least one epileptic seizure in the last year.

What will I have to do?

To take part you will be asked to write a letter to your seizure(s). The letter can be between one and two pages long and you can take up to two weeks to write it. You can write it by hand or on the computer. Things that you might like to write about include:

  • What thoughts go through your mind when you have a seizure (before and after, and possibly during a seizure)
  • How you feel emotionally and physically
  • How you feel before and after, and possibly during a seizure
  • What it is like if you experience periods of time without having a seizure
  • How you feel about having seizures
  • The one thing you would like your seizures to know
  • How you feel looking ahead to the future

How do I get involved?

Please contact Dr Stephanie Kilinc, Teesside University, at s.kilinc@tees.ac.uk, if you have any questions, would like more information or would like to take part.

Is there a deadline?

You can join the project between May 2021 and 11 June 2021 and will be given two weeks to write your letter and send it to us.

Who is conducting the research?

Dr Stephanie Kilinc and Nikita Shepherdson at Teesside University; Joanne Cole at Neuro Key (Tees Valley, Durham and North Yorkshire Neurological Alliance) and Dr Lis Hammond.

Who has reviewed this study?

Teesside University Ethics Committee have reviewed and approved this study (2021 Apr 5718 Kilinc).

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