Abstracts

Rationale: Chronic illnesses, such as epilepsy, impact the quality of life for the individual and their caregivers. For children, their parents' quality of life is important to examine. Little literature exists regarding the parents' physical, psychological and social well-being as a primary caregiver. Even less is known about the parents' quality of life caring for children with medication refractory epilepsy. The Stress Process Model provides a theoretical framework for understanding concepts which impact quality of life. The purpose of the study is to gain insight into the experience of parents caring for a child with medication refractory epilepsy and better understand their physical, psychological and social well-being.Methods: Semi-structured interviews were conducted to provide an in-depth understanding of the phenomenon of interest. A purposeful sample of parents of children with medication refractory epilepsy was selected from a large epilepsy practice in the Northeast region of the United States. After obtaining IRB approval, a total of eight parents from four families participated in the study and shared their experiences regarding care giving. Each interview, lasting approximately one hour, was recorded and transcribed verbatim. Analysis of the data was performed initially case by case and then cross-case to identify emerging themes. Sensitizing concepts were used initially to facilitate discussion, with the primary investigator remaining open to all other possible patters and themes.Results: Three general categories were identified through analysis; child-centered concerns, parent-centered concerns and family-centered concerns. Within each category, several themes emerged. Child-centered concerns included 1) the need for supervision 2) the uncertainty of the illness and 3) the ability to fit in. Ten themes emerged within the parent-centered concerns category: 1) parental stress 2) use of schedules 3) being present versus future focused 4) coping strategies 5) use of support systems 6) parental self-concept 7) information seeking 8) the extended parental role 9) acceptance of illness and 10) quality of life. Family-centered concerns involved 1) concerns for the siblings and 2) normalcy.Conclusions: This study examined the experience of parents caring for a child with medication refractory epilepsy. Parental quality of life, stress, coping, social support and self-concept were all identified. Previous studies provided quantitative results regarding parental issues. This current study provides meaning to previous quantitative data. Little is known about the father's perspective as well as the impact of medication refractory epilepsy on siblings. The current study generated more questions to be explored in future research; including the experience of siblings and additional focus on the fathers' experience.