Advisory Committee Chair
Advisory Committee Members
Jerzy P Szaflarski
Joseph D Wolfe
Date of Award
Degree Name by School
Doctor of Philosophy (PhD) College of Arts and Sciences
Objective: The purpose of this study is to explore the relationship between affiliate stigma and the levels of burden experienced by individuals caring for family members with intractable epilepsy and to examine how levels of burden may vary between those caring for children and those caring for adults. Methods: This cross-sectional, quantitative approach utilized a self-administered survey offered to caregivers of family members with confirmed diagnoses of intractable epilepsy in a southern state. Caregiver burden was measured using the 30-item Carer’s Assessment of Difficulties Index while levels of perceived stigma were assessed using a six-item scale. Demographic data concerning both the caregivers and their family members were obtained as well. Four nested OLS regression models were estimated using Stata 13.1 software package. Results: Demographically, respondents (N=136) were primarily female (75%), White (83%), and married (69%) with an average annual household income of just over $80,000. The family members with intractable epilepsy ranged in age from 2-82 years and were evenly split between males and females. Each of the OLS models yielded a positive and statistically significant association (p<.001) between caregiver burden and perceived stigma. Additionally, the age of the family member with epilepsy moderated (p<.05) the effect. Conclusion: Results from this study strongly support the argument that as levels of stigma perceived by a caregiver increases, their perception of burden also increases. As well, the relationship between stigma and burden is stronger when the caregiver’s family member is an adult. It is important for medical and social service providers to take these results into consideration when determining services to best meet the needs of families.
Hansen, Barbara, "Intractable Epilepsy: Does Perception of Epilepsy Stigma Affect Levels of Caregiver Burden?" (2017). All ETDs from UAB. 1864.