Epilepsy and You

Here's the shared example

Epilepsy and you is an online self-management programme for adults with epilepsy which aims to help participants to:

  • Learn more about epilepsy and become an expert in their own condition
  • Try out new skills to help them manage their health and wellbeing
  • Achieve a better quality of life through self-care

Participants can access the course from any computer, tablet or smartphone with an internet connection.  The course has eight modules which take about 2 hours each, and participants can do this at any time to suit them.  Each week a new session is made available on a different topic.  These include:

  • Active self-management
  • Epileptic seizures
  • Managing your seizures
  • Safety, travel and your independence
  • Your feelings
  • Memory, sleep and stress
  • Work and daily activities
  • Relationships

Sessions include facts and information, video content, personal stories, tools and activities.  At the end of each session, participants are encouraged to make an action plan to help them work towards their self-management goals.  The course is supported by a workbook, an online forum accessible only to participants, and access to a telephone helpline.

Epilepsy and you was developed by Epilepsy Action together with people with epilepsy and epilepsy specialist clinicians.  It follows an extensive literature review of what has worked in the design and delivery of self-management programmes, and the learning outcomes were developed in a Delphi survey completed by professionals and people with epilepsy.  The course is fully referenced and meets the requirements of the Information Standard.   It has been feasibility tested by 16 volunteers with epilepsy and peer-reviewed by relevant professionals.

From January 2016 for a limited time, Epilepsy and you will be made available to participants free of charge, due to research funding.  During this time, Epilepsy Action will ask participants to complete pre- and post-course questionnaires, so that the researchers at Coventry University can carry out an evaluation of the effectiveness of the programme, which will measure quality of life, patient activation, depression and anxiety and medication adherence.

People with epilepsy can register their interest in taking part in the programme online at epilepsy.org.uk/epilepsyandyou.

Population groups: 
People with long term conditions
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