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The consequences of ontological insecurity for caregivers of people with epilepsy
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Abstract
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supporting social world are no longer valid.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.
Item Type: | Thesis - Research Master |
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Authors/Creators: | Hutchinson, Helen Elizabeth |
Keywords: | Caregivers, Epileptics, Epilepsy |
Copyright Holders: | The Author |
Copyright Information: | Copyright 2002 the Author - The University is continuing to endeavour to trace the copyright |
Additional Information: | Thesis (M.A.)--University of Tasmania, 2002. Includes bibliographical references |
Item Statistics: | View statistics for this item |
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