Childhood epilepsy in contemporary society: risk perceptions among children and their family members

Abstract

Although uncertainty is a key characteristic of epilepsy, and despite the close relationship between uncertainty and risk, our understanding of individuals’ experiences of childhood epilepsy in relation to risk is limited. In this paper I explore family members’ perceptions of the risks associated with the condition by drawing on qualitative data collected during 2013 and 2014 from 24 families with a child with epilepsy (including data from 28 parents, 13 children with epilepsy and 14 siblings). The diagnosis of childhood epilepsy provided parents and children with a new framework that they used to evaluate risks posed by the physical environment. Indeed, roads, water and heights were reconceptualised when viewed through an ‘epilepsy lens’ and were seen to present more risk to the child with epilepsy in comparison to the level of risk the same hazards posed to their siblings or peers. Furthermore, while parents described prioritising new and reconceptualised physical risks to their child, the children with epilepsy were more concerned about being stigmatised by their peers. The children’s discussions surrounding stigma suggest that this results from interactions with their peers, rather than stigma being learnt within the family, as previous studies have suggested. Overall, I demonstrate that risk is a central feature of contemporary experiences of epilepsy for children with the condition and their parents, but that parents and children perceive and prioritise risks differently.

Keywords:

• epilepsy
• children
• risk
• stigma
• parents

Acknowledgements

I should like to acknowledge the funding received for this study from an Economic and Social Research Council CASE studentship, in conjunction with Epilepsy Action (grant reference ES/I901337/1). I am extremely grateful to the participants for giving up their time to share their experiences and to Epilepsy Action, The Daisy Garland and Matthew’s Friends for advertising the research. Many thanks also go to the anonymous reviewers and Dr Patrick Brown for their helpful comments on earlier versions of this paper.

Disclosure statement

No potential conflict of interest was reported by the author.

Data availability statement

The data can only be accessed by contacting the first author.10.17605/OSF.IO/TPA6U.

Additional information

Funding

This work was supported by the Economic and Social Research Council and Epilepsy Action [ES/I901337/1].