A systematic review of the contribution of qualitative research to the study of quality of life in children and adolescents with epilepsy

Abstract

A sizeable literature focusing on QOL in children and adolescents with epilepsy has been produced over the last few years. However, relatively little emphasis has been placed on defining these issues from direct exploration of children's and adolescents' views. Qualitative methodologies are proposed in this review as an appropriate means of eliciting such information. This review systematically investigated the extent to which studies of QOL in children and adolescents with epilepsy have used recognised qualitative methodology. Articles for inclusion were identified by searching the term 'epilepsy', combined with 'adolescent(s) and/or child(ren)' and 'psychosocial and/or quality of life'. Selected articles were reviewed and rated using CASP Guidelines for qualitative research by two independent raters. Seventeen studies were retrieved through literature search. Of these six used some form of qualitative methodology either individually or combined with quantitative methods. However, only one study met quality criteria for selection in this systematic review. A summary of both selected and excluded studies is presented and methodological limitations discussed. Recommendations for appropriate methodology for investigation of QOL issues in children and adolescents are given.

Self-esteem, social support perception and seizure controllability perception in adolescents with epilepsy

“…These latter findings are particularly surprising, because epilepsy was reported to correlate with a poor prevalence of self esteem [2][3][4][5] . This discrepancy may be explained by several factors.…”

“…Epilepsy during adolescence may significantly affect social development and maturation as a result of stigmatization, and may also impair independence, social function, relationships, self esteem, mood and cognition 3 . Literature data showed that children and adolescents with epilepsy have a low self-esteem 4,5 . A positive self esteem is a human need, essential to healthy adaptation, and significantly associated with personal satisfaction and ideal functionality 6 .…”

Health-related quality of life in youth with epilepsy: Theoretical model for clinicians and researchers. Part I: The role of epilepsy and co-morbidity

“…In this way, the conceptual components of HRQL are closely aligned with what youth draw on in order to generate a representation of their HRQL. This model comes closer than many others to what youth mean by HRQL as the domains comprising HRQL are not exclusively generated by professional 'experts' who draw on their knowledge of the literature and clinical practice [12,13]. Although involved in the interpretation of what YWE and their parents say HRQL means, the voices that are privileged are those of the children and parents themselves.…”

Psychosocial problems and seizure-related factors in children with epilepsy

“…Research on sex and psychopathology in children with epilepsy has not been conclusive . Information about psychosocial problems in childhood epilepsy has most often been collected by proxy (McEwan et al 2004).…”