Abstracts

Rationale: Limited research exists to describe cultural attitudes about epilepsy in the Hispanic community and the influence of these attitudes on health outcomes. Hispanic CARE is a multi-phased program of research to better understand the experience of Hispanic people living with epilepsy (HPwE). This phase of the research project aimed to explore HPwE gaps in care hypothesized by health care providers (HCPs) in previous research and identify the cultural drivers, health care barriers, and persona dimensions for HPwE of Mexican heritage living in California or Texas.

Methods: Research was conducted in 2020 in Hispanic adults 18–70 years of age living in California or Texas who reported Mexico as country of origin and speak mainly Spanish at home. Using phone survey screening, 27 individuals in total were recruited for 9 groups across 3 cohorts: HPwE (n=12, 4 groups of 3), Hispanic caregiver of HPwE (n=9, 3 groups of 3), and general Hispanic community member (n=6, 2 groups of 3). Group meetings were conducted online (duration: 90–120 mins) with moderator-led discussion in Spanish (and real time English translation for observers). Before each session, participants were asked to complete and share a 1-page collage that told their epilepsy story (patients/caregivers) or how they approached their health (general community member). A thematic analysis of the insights was conducted to identify cultural value drivers for Hispanics, describe how Hispanics approach health care, identify health care barriers for Spanish-speakers, and identify persona dimensions that influence HPwE engagement in epilepsy care.

Results: Thematic analysis revealed these cultural value drivers: family, faith, optimism, showing strength, social acceptance, success, pride in hard work, integrity, and respect. Primary themes in health care experience of Hispanics were that HCP dominates the relationship, and human connection is possible when the HCP speaks Spanish. Barriers to care for Spanish-speakers were that most health information online is in English, translation options are not optimal, and illness is tied to feelings of guilt and shame. Eight persona dimensions for HPwE that define their approach to epilepsy care were identified: acculturated vs non-acculturated, open about epilepsy vs closed, proactive vs avoidant, productive vs disabled, strong vs weak, medication as integral to control vs avoided, strong HCP relationship vs lack of trust, and collective Hispanic vs individual society lens.

Conclusions: Results confirmed that the HPwE gaps in care hypothesized by HCPs are influenced by cultural drivers and health care barriers specific to HPwE of Mexican heritage living in California or Texas. This research can inform the development of culturally relevant solutions to improve health outcomes for this subpopulation. It is important to note that Hispanics living in the US are not a homogenous group. Further research is needed with non-Mexican Hispanics to identify important commonalities and cultural differences across countries of origin.

Funding: Please list any funding that was received in support of this abstract.: UCB Pharma-funded.