The impact of childhood epilepsy on quality of life: A qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy Catriona Moffat a , Liam Dorris a,b, * , Linda Connor b , Colin A. Espie a a Section of Psychological Medicine, University of Glasgow, Academic Centre, Gartnavel Royal Hospital, 1055 Great Western Road, Glasgow G12 0XH, Scotland, UK b Fraser of Allander Neurosciences Unit, Royal Hospital for Sick Children, NHS Greater Glasgow & Clyde, Scotland G3 8SJ, UK article info Article history: Received 10 April 2008 Revised 13 September 2008 Accepted 23 September 2008 Available online 5 November 2008 Keywords: Childhood epilepsy Quality of life Focus groups abstract As children’s perceptions of their quality of life are unique, it is essential to elicit their concerns directly rather than from proxy informants. This study therefore aimed to investigate the impact of childhood epilepsy on quality of life directly from the child’s perspective. Focus group techniques and qualitative analysis were utilized. Twenty-two children between 7 years 4 months and 12 years 6 months of age (11 females, 11 males) were stratified by age (7–8, 9–10, 11–12 years) into five focus groups. Data were transcribed and analyzed using grounded theory techniques to generate themes and categories. Themes were presented using the children’s language. Two major themes were identified, ‘‘things to do with growing up” and ‘‘things to do with epilepsy,” with five and four subthemes, respectively. No significant age-related differences were found. A conceptual model illustrates these findings, and comparisons are made to previous research with adolescents using similar methodology. Ó 2008 Elsevier Inc. All rights reserved. 1. Introduction Health is defined as ‘‘a state of complete physical, mental and social well-being, and not merely the absence of disease or infir- mity” [1]. The development of the construct of quality of life (QoL) has been influenced strongly by this biopsychosocial approach. The four domains of QoL are disease state and physical symptoms, functional status, psychological functioning, and social functioning [2]. QoL is defined as ‘‘the individual’s perception of their position in life, in the context of the culture and value sys- tems in which they live and in relation to their goals, expectations, standards and concerns” [1, p.5]. This may also be stated as how the individual evaluates his or her QoL in relation to his or her personal expectations [3]. Health-related quality of life (HRQoL) examines the subjective and objective impact of dysfunction asso- ciated with an illness, injury, or medical treatment [3], by differen- tiating health from more generic social and environmental issues. To achieve this, measures of HRQoL must address limitations on current development, restrictions on everyday activities, and detri- mental effects on future achievements. Epilepsy is often a chronic and debilitating condition, yet the use of quality of life measures in epilepsy research is relatively recent compared with that in other chronic conditions [4], particularly within the pediatric population. Epilepsy is the most common serious neurological disorder in childhood [5] and can be associated with profound deleterious psychological and socio- logical consequences, often not directly related to the clinical fea- tures of the disorder such as seizures. These consequences include stigma, limitations on daily activities, and the fear of impending seizures leading to feelings of insecurity, which in turn can adversely affect healthy social development. In childhood epilepsy, relationships can be compromised by overprotective parenting preventing the skill acquisition necessary for a full and indepen- dent lifestyle [6]. Children with epilepsy have been found consis- tently to be more behaviorally disturbed, with lower self-esteem, and to experience poorer academic attainment than children with diabetes or asthma [7,8]. These findings indicate that children’s health and development are enmeshed with their psychosocial environment. With so many potential negative consequences in all areas of life, it is crucial to investigate children’s perceptions of their epilepsy and of themselves. Such evaluation of quality of life in children with epilepsy could highlight the need for addi- tional professional resources and lead to early intervention. People’s perceptions of their QoL are unique. Eliciting concerns directly from the individual, and not through proxy informants, is therefore paramount to obtaining a comprehensive account of pa- tient experience [9]. Few QoL articles are relevant to children and most use proxy informants to report children’s QoL [10]. In order to meet the needs of children it is essential to understand the child’s perspective of the limitations imposed by his or her illness. The children themselves can complete few QoL measures, and of those available, most are suitable for children over 8 years of age. Many chronic illnesses affect children before this age and early 1525-5050/$ - see front matter Ó 2008 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2008.09.025 * Corresponding author. Address: Fraser of Allander Neurosciences Unit, Royal Hospital for Sick Children, NHS Greater Glasgow & Clyde, Scotland G3 8SJ, UK. Fax: +00 44 0 141 201 9270. E-mail address: liam.dorris@ggc.scot.nhs.uk (L. Dorris). Epilepsy & Behavior 14 (2009) 179–189 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh