Quality of life (QOL) narratives of growing up with epilepsy from youth and family perspectives

PURPOSE: Qualitative research studies deepen our understanding of growing up with epilepsy but are limited to the singular perspective of children or their parents at one point in childhood. A more complete view requires multiple perspectives and narrative accounts that represent development from early childhood to young adulthood. Thematic study of life narratives of 7 young people and at least one person within their families were interviewed separately (15 participants) for two interviews each (30 interviews). The objective was to obtain narratives of the life experiences, the attributions of those experiences, and crucial periods relating to quality of life (QOL) with no apriori assumptions that their lives were shaped by epilepsy. Themes were formed inductively from subthemes and codes were created based on the constant comparative method by two interviewers who iteratively co-coded the data. RESULTS: Themes emerging from the data: "Story of My Health," "Growing by Doing," "To Adapt or Not to Adapt," "Supports and Challenges," "Parent World," and "Looking in and Out, Forward and Back", often included components of seizure and epilepsy experiences but also mirrored life challenges of growing up in general. The only exclusively epilepsy-specific theme: "To Adapt or Not to Adapt", was about the challenges and solutions for dealing with the uncertainty caused by seizures and potential isolation that results from others' reactions. CONCLUSIONS: There were a range of experiences related to QOL described by participants growing up with epilepsy. The 'ingredients' of a good life (e.g., social and self-acceptance) were consistent with QOL research for general populations, although these were often expressed as more difficult to attain when growing up with epilepsy.