Burden and Perceptions Associated with Epilepsy: Caregivers' Perspectives
Journal Title: Journal of Disability Management and Rehabilitation - Year 2015, Vol 1, Issue 1
Abstract
Background: Neuropsychiatric diseases which are mental, neurological and behavioural are growing causes of morbidity, and epilepsy is prominent among them. Epilepsy is a disease of uncertainty and disappointment and is the most common disorder of brain. It has neurobiological, cognitive, psychological and social consequences. With its increasing disease burden in all societies, the role of caregiver has been increasingly recognized as an important one, both functionally and economically. The stress associated with unsupported care for chronically ill family members may result in a condition commonly referred to as caregiver syndrome which is the emotional, physical and financial demands and responsibilities of an individual's illness that are placed on family members, friends or other individuals involved with the individual outside the health care system. Objectives: Present study attempts at exploration of caregiver burden and associated psychosocial perceptions of primary caregivers of patients with epilepsy. Sample: 30 participants who were primary caregivers of patients with epilepsy were selected from Child guidance clinic and neurology OPD, IHBAS-Delhi. Design: Present study was an exploratory study which aimed to elicit quantitative and qualitative data on caregiver burden in primary caregivers of patients with epilepsy and their perceptions about epileptic illness. Tool: The data was collected with the help of Zarit Burden inventory and a semi structured interview schedule. Results:Study indicates moderate to severe levels of caregiving burden and various stigma, anxieties and misconceptions about epileptic illness. Conclusion: Present study strongly indicated the need for comprehensive and integrative health care system focusing psychoeducation, support group and awareness initiatives designed for public to reduce the stigma and anxieties associated with this illness. It also stresses the need for shift from medical model to biopsychosocial model of treatment.
Authors and Affiliations
Nidhi Singh
Keywords
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