Caregivers of school children with epilepsy: findings of a phenomenological study

Abstract

Epilepsy is one of the most frequently diagnosed neurological disorders among children. Epilepsy is continuously linked with academic underachievement and social challenges. Despite the implications that these difficulties have for a child's educational success, little is known of how children with epilepsy experience school. Understanding how to best support and accommodate these children can contribute to their positive adaptation and quality of life. The purpose of this phenomenological study by Jillian Roberts and Cheryl Whiting of the University of Victoria, British Columbia, Canada, is to understand the school experiences of children with epilepsy. Data was gathered through open-ended, semi-structured interviews. The caregivers' narratives were transcribed and analysed to elicit the essential experiences of school children with epilepsy. Five categories were elicited from the families' narratives: (1) health-related issues, (2) family coping, (3) academic experience, (4) social belonging, and (5) awareness. This information will be particularly useful for teachers and allied professionals serving the needs of children with epilepsy -as well as those with other chronic health conditions.

Parent perspectives of the challenging aspects of disclosing a child’s epilepsy diagnosis to others: Why don’t they tell?

“…Disclosure of their child's epilepsy diagnosis to others is an important QoL issue, and source of stress and concern for parents. [20][21][22][23] However, prior to this study, limited evidence was available on parents' perspectives of navigating the disclosure decision-making process. This study offers unique insights into the challenges parents experienced when deciding to disclose the child's epilepsy diagnosis to others outside the family unit.…”

“…A number of parents perceived non-disclosure as a protective mechanism to guard against their child experiencing what they viewed as unnecessary feelings of differentness, different treatment, restrictions, stigma and others' negative reactions. While parents' protective intentions for their child have been reported in prior research, [22][23][24][25][26][27][28] the consequences of parents concealing a child's epilepsy diagnosis has not been evaluated to any great extent.…”

Teachers' perspectives of supporting pupils with long-term health conditions in mainstream schools: a narrative review of the literature

“…, Amillategui et al . , Roberts & Whiting , Nurmi & Stieber‐Roger ). Pupils report feeling disappointed and frustrated with teachers' lack of knowledge, believing that school rules and teachers' attitudes limit their capacity to self‐manage their condition (Hayes‐Bohn et al .…”

Are the health needs of children with disabilities being met at primary schools?

“…On the other hand, it is important to bear in mind that these evaluations were subjective as they involved perceptions of the families. When we look at the literature, several studies with families have demonstrated that teachers are not sufficiently educated about health problems such as chronic illnesses (Amillategui et al, 2007; Nurmi and Stieber-Roger, 2012; Roberts and Whiting, 2011). Many studies in the literature highlight that teachers need more knowledge about engaging with children with chronic health conditions (Clay et al, 2004; Mukherjee et al, 2000; Nabors et al, 2008).…”