Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods

The majority of previous studies investigating the impact of epilepsy on the QOL of adolescents have used proxy opinions from clinicians and/or parents. This study highlights the need for research to investigate QOL from the direct perspective of adolescents and consider issues in the context of a developmental perspective. A focus group technique was used. Twenty-two adolescents aged between 12 years 4 months and 18 years 0 months (6 males and 16 females) were stratified by age (12-13, 14-15 and 16+ years) into six focus groups. Data were transcribed and QSR NUD*IST 4.0 was used to help generate central themes. Several procedures were undertaken to increase validity and reliability of findings. Analysis identified two main themes comprising (a) issues related to adolescent development (identity formation) and (b) epilepsy related variables, with five and four main sub-themes, respectively ('peer acceptance', 'development of autonomy', 'school related issues', 'epilepsy as part of me' and 'future', and 'medication issues', 'seizures', 'knowledge of epilepsy' and 'sense of uncertainty'). The main issues related to peer acceptance and development of autonomy. In contrast to previous studies, academic difficulties were not highlighted as an issue. No significant age-related differences in issues were identified. A conceptual model representing these findings is presented and clinical implications and suggestions for future research are reported.