Children Speak Out In Groundbreaking Epilepsy Research, UK

Main Category: Epilepsy
Also Included In: Pediatrics / Children's Health
Article Date: 23 Aug 2007 - 1:00 PST

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Children are calling for a better understanding of epilepsy within mainstream schools, claims an innovative report by researchers at the School of Education, Birmingham University.

Supported by the charity Epilepsy Action, the 'Understanding of epilepsy by children with, or without, epilepsy' report looks at how children think and feel about epilepsy.

The research found that most children with epilepsy have a clear understanding of the condition. However, the findings also indicate that children want teachers and classmates, along with other adults around them, to gain more knowledge about epilepsy. Children feel that adults would be better placed to support their epilepsy if they openly discussed the condition and listened to the views of children.

Although the research showed that children with epilepsy do worry about the stigma surrounding the condition, it also found children without epilepsy to be overwhelmingly sympathetic towards children with epilepsy. In addition, children without epilepsy would like to know more about the condition and what they should do if a classmate has a seizure.

When asked about their ambitions and aspirations for the future, it was found that the majority of children with epilepsy have a positive outlook. One child replied: "I hope that there is a better understanding of epilepsy . . . so other children with the condition can lead normal lives and everyone around them will understand their condition!"

Professor Ann Lewis, who led the research, says: "The predominant message from the report is that children want accurate and helpful information about epilepsy to be available and discussed in school and other social groups. In addition, children want this information to be provided through mainstream contexts such as TV programmes, the internet, celebrity spokespeople and magazines. If this is carried out, then children with epilepsy are more likely to make the most of their schooling and experience wider social inclusion."

The report offers practical recommendations for how schools in particular can take responsibility for increasing the awareness of epilepsy amongst children, for example adopting a whole-school policy to support people with epilepsy.

Epilepsy Action believes that if communities were more proactive about raising awareness of epilepsy, this would greatly help children and young people who are living with the condition to feel like the valued members of society that, in reality, they are.

The full report, including additional recommendations, has been published by Epilepsy Action and is available for viewing at http://www.epilepsy.org.uk/research. Epilepsy is the UK's most common serious neurological condition affecting an estimated 456,000 people. Epilepsy Action is a registered charity. As well as campaigning to improve epilepsy services and raise awareness of the condition, we offer assistance to local people in a number of ways including a national network of branches, accredited volunteers, regular regional conferences, an Epilepsy Helpline, freephone 0808 800 5050, and a website: http://www.epilepsy.org.uk.

Lewis A, Parsons S, Smith P. Understanding of epilepsy by children with or without epilepsy. Epilepsy Action 2007. This research was carried out between April 2006 and March 2007. It encompassed two overlapping sets of data collection (informed by a literature review): (1) an e survey of 44 self-selected children and young people with epilepsy and (2) interviews (mainly individual) in mainstream schools with (i) 22 children/young people with epilepsy and (ii) 22 classmates (matched, by age, gender and broad ability level with child with epilepsy).

http://www.epilepsy.org.uk