Annual Meeting Abstracts: View
(Abst. 3.409), 2017
Commonalities Among Marginalized Subgroups of People with Epilepsy
Authors: Demetrius S. Geiger, Morehouse School of Medicine; Ashley Tolbert, Morehouse School of Medicine; Robin McGee, Emory University; Martha Sajatovic, Case Western Reserve University, School of Medicine; Kendra Hearn, Morehouse School of Medicine; Peter Scal, Medical School, University of Minnesota; Tanya Spruill, New York University School of Medicine; Nancy Thompson, Emory University; and Rakale Quarells, Morehouse School of Medicine
Content: Rationale: Across the globe, people with epilepsy (PWE) face stigma and discrimination that is influenced at multiple levels (e.g., individual, intrapersonal, and institutional). Although epilepsy is ubiquitous, some subgroups of PWE (e.g., African Americans [AA], Hispanics, PWE and co-morbid serious mental illness, and youth with epilepsy [YWE]) are further marginalized and poorly served under the traditional healthcare system. Methods: Pooled qualitative data were analyzed from guides and transcripts from four studies in the Managing Epilepsy Well (MEW) Network Integrated database: Project UPLIFT (“Using Practice and Learning to Increase Favorable Thoughts”) for AAs at Morehouse School of Medicine (MSM), Project UPLIFT for Hispanics at New York University School of Medicine (NYU), Targeted Self-Management for Epilepsy and Serious Mental Illness (TIME) at Case Western Reserve University, and Youth, Epilepsy and Successful Self-Management (YESS) at University of Minnesota. Content analysis of the qualitative studies identified barriers and facilitators of self-management experienced by PWE. Participant characteristics varied across the four studies. Self-reported descriptions of the participants in each study are as follows: MSM UPLIFT (n=35, PWE=22, support persons=13, 100% AA, PWE age range 20-83 years), NYU UPLIFT (n=16, PWE=14, support persons=2, 100% Hispanic, age range 26-51 years), TIME (n=22; PWE=9, support persons=5, healthcare providers [HCP]=8, 22.2% Caucasian, 55.6% AA, 22.2% other, age range 32-69 years), YESS (n=48, YWE=24, parents=24, YWE age range 13-24). Initially, a codebook was developed based on the discussion guides and thematic analysis was conducted to compare themes across the various subgroups of PWE. Subsequently, Dedoose qualitative data analysis software was used to finalize unifying key themes across the studies. Results: Based on the qualitative analysis, five common themes were identified across the PWE subgroups: stigma, self-management behaviors, barriers, support, and mental and emotional health. Some unique themes were discovered in UPLIFT, TIME, and YESS that include: self-efficacy, gender disparities, and healthcare logistics. Conclusions: The data from four qualitative studies show consistency in the stigma PWE experience, self-management behaviors, barriers, social support, mental and emotional health. The unique themes in each study could be used in future interventions that are relevant to PWE in marginalized groups. The innovative pooled qualitative analysis amongst the studies provides insight into subtle differences various groups of PWE experience. A future direction for research is to investigate dual perspectives from PWE and others (e.g., HCP and support persons) and whether adaptations should be incorporated in specific interventions. Funding: The above studies were supported in part by funding from the CDC (MSM UPLIFT #U48DP005042 [SIP 14-007]; NYU UPLIFT #U48DP005008 [SIP 14-007]; TIME #U48DP001930 [SIP12-057]; YESS #5U48-DP005022-03S6).