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

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 18years 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.