A recent scientific review has highlighted the need for further research into the experiences of families living with childhood epilepsy.
For this study, led by the University of Edinburgh, researchers examined the existing literature for papers written in English, and published prior to January 2016, that explored the feelings and experiences of children with epilepsy (aged 18 years and below), and of parents/siblings of children with epilepsy. They selected a total of 21 studies to include in their review.
The aim of the review was to provide an insight into a) the demographic and epilepsy profiles of people who are included in this type of study, b) the current methods used for this kind of research in children (and any flaws) and c) any common themes/views that have arisen from this area of research to date.
The results, published in the medical journal Epilepsy & Behavior, indicate that the concepts of ‘normality’ and ‘agency’ (the ability to act independently and make choices freely) are two of the most dominant themes. Indeed, many of the specific challenges faced by both children and parents appear to stem from a desire for a “normal” childhood.
The studies included also reveal that children are educated about their own condition, and epilepsy more generally, and that they are often actively involved in managing the ways in which they cope with epilepsy, with respect to both seizure prevention and their handling of relationships.
The review does, however, reveal that many current studies exclude children with learning disabilities, meaning these vital voices are not being heard. It also highlights that research into families usually involves mothers, with fathers and siblings being contacted relatively infrequently.
The research abstract concludes: “Future research should ensure that appropriate design, data collection and analytic strategies are adopted to facilitate the participation of all family members.
“Enhancing the quality of the research will, in turn, optimise validity and opportunities for the translation of findings into better health, education and social practices to improve care for children and their families affected by epilepsy.”
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