The Association between Caregiver Burden and Affiliate Stigma Among Caregivers of Persons with Intractable Epilepsy

Objective: This study explored the relationship between affiliate stigma and the levels of burden experienced by family members caring for relatives with intractable (uncontrolled) epilepsy and examined how levels of burden may vary by patient age. Disability rates in this epilepsy population are high (~80%) with care typically provided by unpaid family members. While evidence of epilepsy stigma has been firmly established in literature, affiliate stigma experienced by these familial caregivers has not been examined. Caregivers may experience family stigma, i.e. discriminatory attitudes based on their being related to a person with a stigmatizing feature (Goffman 1963). Affiliate stigma occurs when that family member internalizes those negative societal views with resulting psychological responses (Mak and Cheung 2008).

Methods: This cross-sectional approach utilized a self-administered survey offered to caregivers of family members with confirmed diagnoses of intractable epilepsy in a southern U.S. state. Caregiver burden was measured using a 30-item index while affiliate stigma was assessed using a six-item scale. Four nested OLS regression models were estimated.

Results: Respondents (N=136) were predominantly White (83%), female (75%), and married (69%). The family members with epilepsy ranged in age from 2-82 years and were evenly split between males and females. Each OLS model yielded a positive and statistically significant association (p<.001) between perceived levels of caregiver burden and 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 perceived stigma increase, perceptions of burden also increase. As well, the relationship between caregiver burden and affiliate stigma is stronger for caregivers of adults. Measuring caregiving activities in epilepsy across a stress continuum was unique in this study, providing a way to identify specific needs, which when met, may improve physical and mental health for caregivers.