Authors :
Presenting Author: Sarah Prieto, PhD – Alpert Medical School of Brown University
Elaine Kiriakopoulos, MD, MPH, MSc – Dartmouth Health
Emma Larracey, BS – Bridgewater State University
Madeline Rahilly, PhD – Brown University Health
Geoffrey Tremont, PhD – Brown University Health
Sarah Kaden, BA – Dartmouth Health
Jennifer Davis, PhD – Brown University Health
Seth Margolis, PhD – Brown University Health
Rationale:
Affiliate stigma occurs when care partners internalize societal stigma directed at their loved ones and may negatively impact mental health and family dynamics. This study examined associations between care partner burden, family functioning, and affiliate stigma in care partners of people with epilepsy (PWE). Then, we sought to identify which dimensions of affiliate stigma (cognitive, affective, behavioral) predict care partner burden and family role functioning.
Methods: Forty-eight care partners of PWE (mean age = 48 years, 77.1% female) from 18 U.S. states completed the Mak Affiliate Stigma Scale, Zarit Burden Interview, and Family Assessment Device. Regressions were conducted to examine relationships among affiliate stigma, burden, and family functioning, adjusting for the age of the care recipient (pediatric vs. adult). A subsample with at least mild affiliate stigma (n = 7) underwent qualitative interviews to explore coping strategies and perceived barriers to managing affiliate stigma.
Results: Most care partners were family members (66.8%) and provided an average of 105.7 hours of care per week ranging from physical assistance and emotional support to financial aid and advocacy. After adjusting for care recipient age, higher care partner burden (
β = .68,
p < .001) and worse family role functioning (i.e., care partners’ perceptions of how effectively the family defines, assigns, and fulfills responsibilities) were associated with greater affiliate stigma (β = .52, p = .002). When the components of affiliate stigma were entered into a separate model to predict family role concerns, how people think about the care recipient with epilepsy (cognitive domain: β = .392, p = .027) and how the care partner approaches social relationships because of their involvement with the care recipient (behavioral domain: β = .341, p = .029) were uniquely related to family role concerns. By contrast, the affective domain of affiliate stigma, or the degree to which the care partner feels sad, angry, afraid, or ashamed because of their loved one with epilepsy, uniquely predicted caregiver burden (β = .348, p = .016). Qualitative interviews revealed themes of lifestyle disruption, chronic emotional distress, and hypervigilance tied to caregiving. Coping strategies included stress management, adjusting expectations, seeking support from others, pursuing education about epilepsy, and spirituality. However, less adaptive behaviors like alcohol use or social withdrawal were also noted. Care partners expressed a strong need for more caregiver-specific resources tailored to their needs, that are cost-effective, and accessible.