Understanding of epilepsy by children with and without the condition

Significant numbers of children with epilepsy attend mainstream schools. If they are to get the most from their education it is important for schools to know what, and how, to tell all pupils about their condition. Ann Lewis and Sarah Parsons of the University of Birmingham School of Education outline the findings of a one-year research project funded by Epilepsy Action

In an average secondary school with 800 pupils on roll, there could be as many as 12 to 16 students with epilepsy (extrapolated from Baker et al, 2005). About one third of pupils with epilepsy (even if cognitive functions are not impaired) underachieve in school (Galletti et al, 2004) due to their epilepsy, medication for epilepsy (especially if prolonged), school factors and/or their own attitudes towards having epilepsy. Conversely, as the social model of disability shows, teachers and other pupils can play a crucial role in helping children with epilepsy to live positively with this chronic condition. The social model of disability links with work investigating what mainstream pupils understand about disability (Lewis, 1995). Within this orientation, the research that we report in this article focused specifically on the understanding of epilepsy by children with, or without, epilepsy and provides important pointers for schools in responding inclusively to pupils with epilepsy. Our research took place over the course of a year and was funded by Epilepsy Action. The project 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 with a child with epilepsy; by age, gender and broad ability level (ages 7-18). The portfolio of methods to facilitate the hearing of disabled children’s views (developed in concurrent work; Lewis et al, 2005, 2007), was drawn on so that diverse children and young people were able to contribute. Taking a qualitative methodological approach, as well as providing space for open responses on surveys, revealed important insights into complex concepts like stigma (see also Elliott et al, 2005). This was illustrated in children and young people’s readiness to talk about their feelings of ‘difference’ in relation to others when given the opportunity to do so sensitively.

Our findings concerning children and young people with epilepsy

Overall, children and young people (ages 7-18) with epilepsy were clear about the nature of their condition, including seizures, although they sometimes struggled to articulate this:

(Like) it is raining in my head. Like when it is thundering outside.

Some of the younger primary-age children were confused about causes while, with age, young people became more understanding and phlegmatic about having epilepsy. A majority of participants reported that they were taking medication for their epilepsy, although there was some confusion among the youngest children about the function of their medication. A frequent reference across all age groups was to tiredness, either as a side effect of their medication or arising from the epilepsy itself:

When I have a fit, my mum brings me some water and we go to the hospital and have a bit of a check and then come to school because I don’t want to miss school, then when I’m at school I sometimes feel a bit sleepy and I try to wake up and then I ask if I can put cold water on my face and I feel a bit awake.

For this reason, if no other, it is vital that mainstream schools have good knowledge both about individual pupils with epilepsy and about the condition more generally. For many children and young people, there was an implicit reluctance in accepting epilepsy as a ‘part of them’; self-reported feelings of secrecy, stigma and shame abounded:

It makes you shake and have accidents in the night but I would only tell the last bit to my very close family.

This raises important issues concerning the silence around epilepsy in mainstream schools which, ironically perhaps, may be reinforced by successful medication for pupils there with epilepsy. The lack of role models in public life may be reinforcing a tendency to feel embarrassment about epilepsy. Many children and young people felt worried and uncomfortable about their epilepsy in school contexts and wanted teachers to have a better understanding and awareness of the condition. More widely, the majority (possibly reflecting our mainstream school focus) felt that their epilepsy had a fairly limited impact on participation in activities outside of school. The differences across age groups suggest developmental patterns which reflect the impact of a combination of: knowledge and acceptance of epilepsy, adjusting of medication and cognitive trajectories.

[Epilepsy is] ruining my life. I was to take GCSE exams today, 24 November, but had a seizure in the morning (so) couldn’t go to school so now I will be put down on (the) exam as failed.

Overall, young people wanted more information about epilepsy to be available in the public domain and this needed to be presented in a variety of formats.

Our findings concerning the views of classmates (pupils without epilepsy)

Children and young people without epilepsy had varying levels of awareness of the condition with some being close friends with someone with epilepsy and others believing (incorrectly) that they did not know anyone with the condition. Despite these differences, an overwhelming finding was that the majority of children and young people knew very little about epilepsy. However, their attitudes towards people with epilepsy were positive and understanding, although characterised by uncertainty due to a lack of information or knowledge. Importantly, those who had friends with epilepsy had come to know more about the condition.

I know they have fits… I also know… cos when we go to town, in case he does have a fit I’ll walk down with him, cos it’s only down the road, but just clear a space, call like an ambulance and don’t put your fingers in his mouth, get a spoon if you must… like if they’re trying to swallow their tongue.

A majority of participants said that there was little or no discussion about epilepsy at their schools. Many wished to be better informed about epilepsy and they made thoughtful suggestions for ways in which this could be done through schools.

What exactly is it? I know a fit is when you lose control of your body but that doesn’t really explain it enough… My mum says it can be visual things that trigger it off and that’s one of the most common ways.

Suggestions included teachers having greater awareness of the condition, implementing a ‘buddy’ system to support younger students, and providing information about epilepsy in a range of formats and always in age-appropriate and accessible language (see recommendations).

We learn about respect and responsibilities and all those kinds of things. I think it would fit within that category of learning and I think it should be part of the curriculum to learn about how people are affected and be taught that it shouldn’t affect their future, and to have more respect for people with difficulties.

The findings are highly relevant to mainstream schools but also have implications for promoting the wider social inclusion of children and young people with epilepsy; for example, in youth groups, sports foci, arts oriented groups and informal social networks.

Acknowledgments

Our thanks to Epilepsy Action for funding this project (for full reports see their website) and to Penny Smith for contributions to the fieldwork. Our thanks also to the students and staff of participating schools and colleges, as well as local authority personnel who contributed enthusiastically to the project.

References

• Baker, GA, Spector, S, McGrath, Y and Soteriou, H (2005) ‘Impact of Epilepsy in Adolescence: A UK Controlled Study.’ Epilepsy & Behavior, 6, 556-562.
• Elliott, IM, Lach, L and Smith, ML (2005) ‘I Just Want to be Normal: A Qualitative Study Exploring How Children and Adolescents View the Impact of Intractable Epilepsy on their Quality of Life.’ Epilepsy & Behavior, 7, 664-678.
• Galletti, F and Sturniolo, MG (2004) ‘Counselling children and parents about epilepsy.’ Patient Education and Counselling 55 422-425.
• Lewis, A (1995) Children’s Understanding of Disability. London: Routledge.
• Lewis, A, Parsons, S and Robertson, C (2007) My School, My Family, My Life: Telling It Like It Is. A Study Drawing on the Experiences of Disabled Children, Young People and their Families in Great Britain in 2006. London: Disability Rights Commission/ Birmingham: University of Birmingham, School of Education. www.equalityhumanrights.com/en/ publicationsandresources/Disability/Pages/Education.aspx
• Lewis, A, Robertson, C and Parsons, S (2005) Experiences of Disabled Students and their Families. Phase 1. Research report to Disability Rights Commission, June 2005. Birmingham: University of Birmingham, School of Education. www.equalityhuman rights. com/en/publicationsandresources/ Disability/Pages/Education.aspx

Online resources for young people with epilepsy
Epilepsy Action’s website

has a dedicated section for young people. This includes information on basic facts about epilepsy, but also covers topics of particular interest to teenagers (eg advice about alcohol, street drugs, and sexual matters; advice on education careers and driving) and an excellent interactive letters area. There is also a section for younger children. This also provides opportunities for the sharing of experiences and the seeking of advice.