Understanding the Impact of Epilepsy on Family Members

Each year an average of 15,500 people learn they have epilepsy. 44% are diagnosed before the age of 5, 55% before the age of 10, 75-85% before age 18 and 1% of children will have recurrent seizures before age 14. Epilepsy often affects young families. The demands on parents of young children with epilepsy can be many as they learn to manage the sometimes unpredictable events or episodes that can arise, particularly with seizures as part of the condition. Emotions can range from anxiety and stress due to the additional demands of medical appointments to a sense of helplessness when a child is experiencing a seizure. Epilepsy also develops in adulthood and therefore affects individuals and families at later stages of family life. In this instance the role of caregiver, primary breadwinner or parent changes depending on the timing and severity of the condition. The lack of awareness and knowledge about epilepsy in our society can lead to social isolation, work barriers and relationship issues for those with epilepsy. Families too need information and guidance as they try to provide support for their family members who are dealing with epilepsy. People need a better understanding of the impact of epilepsy in order to properly care for those living with the neurological disorder. In this video, Suzanne Nurse, a specialist in neuroscience and a consultant on epilepsy, helps the viewer better understand the concerns experienced by individuals with epilepsy and family members of those with the disorder. Distress centre call responders can apply this knowledge as they work to support callers on the helpline. An awareness of community resources and supports is a key tool for providing direction to someone seeking assistance. Questions for Further Consideration: What kinds of concerns do parents have when their child has been diagnosed with epilepsy? Anxiety is common and parents may have a number of overwhelming worries: Will my child die? Will he be brain damaged or experience problems with development? Can I let my child play by himself? Can he go to camp or play hockey? What will my family and friends say? What do I say to my child? Along with these concerns, parents also struggle with the unpredictability of seizures and often feel they have no control over what will happen. They worry about whether their child is safe while away from home. They worry that teachers or other adults will mishandle seizures or will make the situation worse by overreacting. Parents also worry about the potential side effects of their child’s medications or the impact of missing school due to seizures and medical appointments. What parameters can be set by parents to help the family cope with the issues associated with having a child with epilepsy? How well a family copes with this new situation will affect the epilepsy care of the child. Factors that can help the entire family to cope well are: parents setting an optimistic tone family sharing of health care responsibilities everyone feeling involved little conflict between family members Since children often take their cues from their parents, healthy family attitudes are very important in helping children adjust. Demonstrating acceptance of the situation and making epilepsy part of the daily routine will help the children act accordingly. When parents are consistent in their expectations and agree on the approach to epilepsy management, the child is more likely to follow the routine. How does care and the family routine change as the child with epilepsy grows and gets older? Each age and stage of life brings a different set of challenges. It might seem that as soon as the family has found ways to negotiate the rocky course of one stage of development, the next stage has arrived. Parenting an infant or toddler with epilepsy can be very different from parenting a school-aged child or a teen. As teenagers reach adulthood, they are faced with new issues, both physical and social, that further affect their epilepsy care. While the child with epilepsy is young, their well-being depends more on the parent and their ability to cope and manage the epilepsy. As the child gets older they will begin to depend more on themselves. Both the family and the epilepsy care team can help smooth the child’s road to adulthood by understanding the child’s concerns, problem solving with them to address these concerns, and helping them develop coping strategies that they can take with them into their adult years. Glossary: Seizures: transient episodes caused by a disturbance in brain activity that cause changes in attention, behaviour or perception Epilepsy: a brain disorder in which a person has repeated seizures. A diagnosis of epilepsy is made by a healthcare professional typically when a person has experienced 2 or more unprovoked seizures. SUDEP: is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found when an autopsy is done. Respite Care: is the provision of short-term care outside the home provided for one who requires specific care. This provides temporary relief to those family members who are caring for the individual on a regular basis. Respite programs provide planned short-term and time-limited breaks for families and other unpaid care givers of children or adults that require unique care. Respite also provides a positive experience for the person receiving care.