Youth With Epilepsy: Development of a Model of Children's Attitudes Toward Their Condition

Abstract

A model of children's attitudes toward their epilepsy was tested in 173 children (9-14 years) with epilepsy and their parents. Predictor variables tested were child characteristics, family mastery, child worry, child self-efficacy for seizure management, child psychosocial care needs, and seizure variables. Data were analyzed using structural equation modeling, leading to a revised model in which less child worry, greater family mastery, and greater child seizure self-efficacy were directly related to more child positive attitudes. Discussion focuses on potential targets for psychosocial interventions aimed at improving attitudes toward epilepsy.Epilepsy, or recurrent unprovoked seizures, is the most common serious neurological disorder in childhood (Hauser, 1994;Shorvon, 1996). Children and adolescents with epilepsy are at risk for mental health problems such as poor self-concept and depression (Ettinger et al., 1998;McDermott, Mani, & Krishnaswami, 1995). Our past research has suggested that children's attitudes toward having epilepsy might influence their psychosocial adjustment. For example, we found more positive attitudes toward epilepsy to be associated with more positive selfconcepts (Austin & Huberty, 1993), greater use of adaptive coping strategies (Austin, Patterson, & Huberty, 1991), and fewer behavior problems (Austin, Smith, Risinger, & McNelis, 1994). Child attitude toward illness was conceptualized as an important influence on adjustment in a recent study of children with chronic arthritis (LeBovidge, Lavigne, & Miller, 2005). In that study, children's attitudes toward their condition were found to moderate the relation between stress and child adjustment. These authors proposed that a positive attitude buffers the impact of increased stress (LeBovidge, Lavigne, & Miller, 2005). These findings suggested that identifying variables that might predict child attitude toward illness would provide a foundation for the development of psychosocial care interventions to enhance positive attitudes and, ultimately, psychosocial adjustment in children with chronic illness (Lavigne & Miller, 2005). CHILDREN'S ATTITUDES TOWARD THEIR CONDITION: PRELIMINARY MODELAttitude theory and past empirical research influenced our selection of concepts for a preliminary model to predict children's attitudes toward having epilepsy (see preliminary model in Figure 1). A goal was to include predictive factors in the model that might be amenable to psychosocial interventions (Lavigne & Faier-Routman, 1993). In the preliminary model, six factors were identified as either direct or indirect predictors of child attitude: child characteristics, family environment, child worry about having epilepsy, child self-efficacy for seizure management, child psychosocial care needs, and seizure variables. Child worry and Correspondence should be sent to J. K. Austin, Indiana University, School of Nursing, 1111 Middle Drive NU492, Indianapolis, IN 46202-5107. E-mail: joausti@iupui.edu. self-efficacy were proposed to be mediating varia...

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Can an epilepsy nurse specialist-led self-management intervention reduce attendance at emergency departments and promote well-being for people with severe epilepsy? A non-randomised trial with a nested qualitative phase

“…Recent evidence shows, however, that those PWE who feel most stigmatised by their condition are more likely to be worried about the possibility of having a seizure, but at the same time have a smaller network of friends and family to support them, such as to accompany them on trips outside of the house in case a seizure occurs. 157,158 This might explain why participants in our study's intervention group who felt most stigmatised were less willing or able to stay in the study. Providing such people with the possibility of free travel by taxi to the intervention might lead to more of them staying in the study.…”

A model for internalized stigma in children and adolescents with epilepsy

“…Our research team developed a model for internalized stigma that builds on our previous work on children’s attitude toward having epilepsy (13). We used our attitude model as a foundation because we found perceptions of stigma to have a moderately strong positive correlation with negative attitudes toward having epilepsy (r = .60) (10).…”

“…Key variables from our attitude model that were included in the stigma model were: fear and worry related to having epilepsy, family mastery, self-efficacy for managing seizures, and need for information and support related to having epilepsy. Other variables that were included based on prior research were: age, gender, age-of-onset, seizure severity, and having a seizure in the past year (13). Specifically, we anticipated that the following variables would be associated with greater perceptions of stigma: greater fear and worry related to having epilepsy, lower family mastery, lower self-efficacy for seizure management, and greater need for information and support.…”