The consequences of ontological insecurity for caregivers of people with epilepsy

Among the world's most serious neurological conditions, epilepsy is the most common. Although its prevalence is not known with accuracy, it is estimated at between 0.5% and 2% of any population. Despite this there are few sociological studies of epilepsy and even fewer sociological studies of caregivers of people with epilepsy. In existing studies the caregiver is assumed to share the same understandings of the condition or illness as the sick person. Further, researchers report that caregivers experience emotional stress as part of the burden of caring. This is similar to results from studies of other chronic illness and caregiving, and is usually associated with the significant physical work associated with caring for a sick person, as well as the demands upon time and the lack of support services for caregivers. Participants in this study were interviewed in order to understand the meaning of epilepsy for caregivers of people with epilepsy, to determine whether the meaning was the same for caregiver and cared-for, and whether the stress of caregiving was entirely physical. This thesis demonstrates that caregivers have a different understanding of epilepsy from the person with epilepsy. The experience of caring for a person with epilepsy threatens ontological security. In their attempts to reinstate order, caregivers use strategies to impose predictability but find their normative expectations of the supporting social world are no longer valid. When such social expectations are breached, caregivers experience fear, uncertainty and anger. The clear connection of emotion and social structure means that policy makers can act to reduce such negative emotions by modifying the social structuring of the illness and caregiving experience.