We exist to improve the lives
of everyone affected by epilepsy

Families with children with epilepsy

Supervisor: Professor Jonathan Gabe, Royal Holloway, University of London

Student: Michelle Webster

Families and carers with a young child diagnosed with epilepsy face uncertainty, anxiety and difficult choices that flow from the consequences of diagnosis. These problems are often compounded by the unpredictability of the condition over time. Uncertainty begins with regard to the process of diagnosis and the form of epilepsy and is added to when decisions need to be made about subsequent treatment and care. This includes choices over the management of anti-epileptic drugs and diet, and in many cases associated changes in lifestyle. In addition, families face a range of anxieties regarding the child’s future, including managing symptoms and the child’s physical and mental well-being. Such anxieties can extend to siblings and other young family members.

The project will therefore focus on the health care decisions that families make with regard to young children after they have had a child diagnosed with epilepsy. It will address questions such as:

  • How does the diagnosis of epilepsy influence family relationships (caring, parenting, grandparenting and sibling relations in particular)?
  • How do families respond to uncertainty and changes in the management of the condition over time?
  • What role do lay beliefs with particular reference to diet play in caring for an epileptic child?
  • Where do family members seek information about the condition and what is the influence of that information on the ways in which the child is cared for?

It is planed to interview 20 children aged 7-14, their main carer and a sibling, to explore the impact of the diagnosis of epilepsy on family life and the kinds of health care decisions that have been made. Families will also be asked to keep a health diary for two weeks to record all decisions about the management of epilepsy in their family.

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