Elsevier

Epilepsy & Behavior

Volume 60, July 2016, Pages 225-237
Epilepsy & Behavior

Review
Families' experiences of living with pediatric epilepsy: A qualitative systematic review

https://doi.org/10.1016/j.yebeh.2016.04.034Get rights and content

Highlights

  • The views of children with epilepsy who have learning disabilities, and of fathers are still largely absent from research.

  • Two key themes emerged: the desire for ‘normalcy’ and children’s involvement in understanding and managing their epilepsy.

  • More attention could be given to ensuring that research involving children meets quality criteria.

Abstract

Living with epilepsy in childhood has implications for the child and their family beyond the physical effects associated with epileptic seizures. Qualitative research has emerged, aiming to deliver a greater depth of understanding of the experiences of living with epilepsy from the perspectives of children with epilepsy, their parents, and their siblings. This review of qualitative research had three aims: first, to synthesize the demographic and epilepsy profiles of research participants in eligible studies in order to provide a clear picture of who are included and excluded when studying families' experiences; second, to present and discuss the methodological concerns and implications of research involving children with epilepsy; and third, to synthesize the findings arising from qualitative research with families in order to identify common themes across all relevant studies to date.

Papers published in the English language prior to January 2016 were identified following a search of eight electronic databases: Embase, Psychinfo, Medline, CINAHL, Web of Knowledge, ASSIA, Web of Science, and SCOPUS. Studies were included if they involved a sample of children with epilepsy (up to 18 years of age), parents, or siblings of children with epilepsy and used qualitative methods. Twenty-one studies were identified as eligible for inclusion in the review.

Findings in relation to the three aims were the following: 1) Researchers were seeking an understanding of children's experiences directly from children rather than by parental proxy. However, children with learning disabilities were often excluded from research, meaning that their views are not being heard. Parental research was predominantly with mothers, and father experiences were not often accessed. There was very little research with siblings. 2) The rationale for and ethical implications of the choice of research methods adopted were not always clear, and not all studies gave adequate attention to the development of appropriate methods for research involving children. 3) Two dominant themes emerged across the studies: normalcy and children's agency. Cutting across many of the challenges that living with epilepsy presented was the desire (by parents and children) for a ‘normal’ childhood. The studies also highlighted that children have knowledge about their own condition and epilepsy more generally and that they are involved in managing the ways in which they cope with epilepsy, both in terms of seizure prevention and managing their relations with others, particularly peers.

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, optimize 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.

Introduction

Living with epilepsy in childhood has implications for the child and their family beyond the physical effects associated with epileptic seizures [1], [2]. Utilizing quality-of-life (QoL) measures, research has demonstrated a detrimental effect on academic achievement, associated with poor behavior management and performance, social isolation, and low self-esteem for children with the condition [3], [4]. Parents of children with epilepsy have also been shown, using similar tools, to have higher rates of depression, anxiety, and stress because of the additional burdens and care needs associated with having a child with a chronic illness [2], [3].

However, questions have been raised as to whether a quantitative approach can fully capture children's and parents' experiences of living with epilepsy [5], [6]. Moreover, children's own views of their epilepsy have often been overlooked in favor of obtaining proxy assessments generated by the use of quantitative tools with parents [7], [8], [9]. In response, qualitatively led research on the topic has emerged, aiming both to deliver a greater depth of understanding of the experiences of children and their parents and, subsequently, to improve the care provided to these families.

Previous reviews of the qualitative research on this topic [5], [10] have applied a QoL lens to the literature, providing insight into how the key QoL domains are affected by pediatric epilepsy. However, a focus on QoL may limit inclusion of relevant literature that has not adopted this approach. In addition, existing reviews, while addressing some issues pertaining to the quality of the research being reviewed, have not presented a detailed analysis and discussion of the research methods used. In this systematic review, we synthesized the findings and methods from all available qualitative research on experiences of living with epilepsy from the perspective of children with epilepsy (cwe), siblings, and parents.

The review had three aims relating to research participants, research methods, and research findings. First, it synthesized the demographic and epilepsy profiles of research participants in eligible studies in order to provide a clear picture of who the studies included and excluded. Second, the review synthesized all findings arising from qualitative research with children, parents, and siblings in order to identify common themes across all relevant studies to date. Third, using standard qualitative research quality criteria and assessment of appropriateness regarding researching with children, this reviewed assesses the methodological approaches and implications of research involving children with epilepsy. By addressing these aims, the review embraced a holistic review of research with cwe and their families which facilitates further understanding of both the findings of research and the manner in which these findings are established.

Section snippets

Search strategy and study selection criteria

The literature search for the review was conducted between March and December 2014, and then, the same searches were run again January to February 2016.1

Results

The results are presented in three sections: research participants, research methods, and research findings.

Discussion

This review synthesized qualitative research with cwe, parents, and siblings and presented an analysis of the studies' key findings and issues arising in relation to research methods. In the following section, the implications of this for future research and practice are considered.

Conclusion

Qualitative research on pediatric epilepsy has provided unique insights into experiences of children with epilepsy, their parents, and siblings. It is important for future research to address the gaps in knowledge highlighted above and, in doing so, to 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, optimize validity and opportunities for the

Ethical publication statement

We confirm that we have reviewed the journal's position on issues involved in ethical publication, and the work described in this paper is consistent with those guidelines.

Conflicts of interest statement

There are no known conflicts of interest associated with this publication.

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