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of everyone affected by epilepsy

Impact of caregiving on lives of people who care for children with epilepsy

Study title

Impact of caregiving on lives of people who care for children with epilepsy.

Institution

University of Washington, Seattle, the USA

About the study

We are looking for parents of children with epilepsy (under the age of 18), to participate in about an hour long telephone discussion. The parents or carers should be responsible for coordinating and providing day-to-day care and the raising, health and wellbeing of the child.

We would like to discuss:

  • The benefits and challenges of providing care for a child with epilepsy and
  • What parents/carers think are the most important areas that are different for them because of caring for a child with epilepsy. This includes the impact on relationships, siblings, finances and work

When will this study be recruiting?

The whole of 2016.

What will participants be asked to do?

Participants will talk for about an hour on the phone, using a Freephone number. This will be:

  • In a small group with other parents/carers or
  • One-on-one with a researcher or
  • In a group with other parents/carers and a researcher

Who can take part?

English speaking parents or carers of a child (under the age of 18) with an epileptic condition. This includes Dravet syndrome, Lennox-Gastaut Syndrome, Doose syndrome (MAE), SCN8A, intractable epilepsy or other any other rare epilepsy.

Who is conducting the research?

Researchers at the University of Washington. They received funding from Zogenix to develop a questionnaire to measure impact of caregiving that is relevant to caregivers of children with epilepsy.

Who has reviewed this study?

University of Washington Human Subjects Division reviewed and approved the procedures for this study.

Interested?

Visit the Caregiving website for more information

Visit Caregiving

Event Date: 
Tuesday 12 May 2015 - 13:49

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