Parents’ need for information and support following their child’s diagnosis of epilepsy

Abstract

Research on childhood epilepsy suggests that a diagnosis of epilepsy is a challenge for both the child and parents. Children with epilepsy and their parents are faced with a multitude of medical, developmental, social and emotional issues that can place additional demands on the rearing of child with epilepsy requiring comprehensive, continuing health care. Many studies exist concerning parents of children with chronic illnesses, including diabetes (Hatton et al, 1995), asthma (Hayes and Knox, 1984), cystic fibrosis (Coyne, 1997) and parents’ need for information and support. In comparison, research which has focused on parental essential needs for both information and support to assist them in caring and coping when their child has epilepsy are notably lacking internationally. This identified gap in the nursing literature concerning parents’ needs for information and support following their child’s diagnosis of epilepsy provided stimulus for this literature review. The purpose of this paper is to highlight the findings of this literature review and to inform paediatric nurses and allied health professionals of the importance of the provision of information and support to parents when their child is diagnosed with epilepsy. In this paper, the incidence, causes of epilepsy and the treatment of epilepsy in childhood are discussed. Parental fears and concerns about their child’s epilepsy are explored. Parents’ need for information and support when their child has epilepsy provides the main focus for this paper.