Exploring Provider Practice Patterns for Addressing Epilepsy Stigma in Clinical Encounters
Abstract number :
2.138
Submission category :
17. Public Health
Year :
2025
Submission ID :
170
Source :
www.aesnet.org
Presentation date :
12/7/2025 12:00:00 AM
Published date :
Authors :
Presenting Author: Kathryn Giordano, MPH – Dartmouth Health
Suzanne Lenz, MA, CCRP – Dartmouth Health
Sarah Kaden, BA – Dartmouth Health
Elaine Kiriakopoulos, MD, MPH, MSc – Dartmouth Health
Rationale: Stigma profoundly impacts people with epilepsy (PwE). Approximately 50% of all prevalent epilepsy cases report epilepsy-related stigma. Unaddressed, stigma can foster feelings of isolation, discrimination, inability to access healthcare resources, and worsen mental and physical health. While non-medical interventions exist to address the effects of epilepsy-related stigma, it is unclear how stigma is routinely addressed by healthcare providers (HCPs) in clinical encounters. In an effort to better understand which stigma-addressing methods are most frequently used and to identify gaps in current practices, this survey aims to explore how HCPs assist their patients to manage epilepsy-stigma.
Methods: A 17-question voluntary and anonymous digital REDCap survey was crafted and electronically distributed to HCPs. Survey questions gathered respondent demographic information, frequency of stigma interactions in clinical encounters, strategies used to address stigma, current gaps in resources provided, and interest in the provision of a stigma specific self-management resource. Results were calculated as percentages to allow for standardized comparison across survey responses.
Results: HCP responses (n=43; Table 1) were received from 14 states, inclusive of epileptologists, RN/NP/APRN, and neuropsychologists (female 69.8%; White 76.7%; not Hispanic/ Latino 86%). The majority of respondents (88.4%) practiced within Academic Medical Centers/Epilepsy/Neuro /Neuropsychology Clinics. Of HCPs surveyed, nearly half (48.8%) noted >75% of their patient panels were PwE; and 65.1% of all HCPs reported between 25%-75% of their patients reported epilepsy stigma. During clinic visits, providers described “Always” (7%), “Frequently” (39.5%), “Sometimes”(39.5%) or “Rarely”(14%) exploring stigma-related concerns (Fig. 1A). To navigate concerns regarding epilepsy-related stigma, 90.7% of HCPs sought to facilitate an open dialogue on stigma. Others frequently employed methods included support group referrals (60.5%), psychotherapy counseling (55.8%), and social service organizations for community support (72.1%) (Fig. 1B). Even though various methods were utilized among surveyed HCPs, approximately 69.8% indicated uncertainty regarding resource efficacy, noting patients “sometimes” (67.4%) followed through on stigma management resources (Fig. 1C). All (100%) HCPs indicated interest in sharing self-management resources dedicated to helping patients identify, cope and manage stigma and (97.6%) indicated they would be interested in having an online self-paced stigma focused self-management program available to offer patients.
Conclusions: Survey data highlights the high prevalence with which multidisciplinary HCPs encounter patients experiencing stigma. Supplemented by the uncertainty regarding resource efficacy and follow-through, the survey data presented underscores the need for accessible stigma resources easily shared with PwE in clinical settings to better address patients’ epilepsy-related stigma concerns.
Funding: None.
Public Health