Access to Care and Hispanic Cultural Attitudes Regarding Epilepsy

Research on attitudes and perceptions toward health care amongst diverse groups of people is required to address social determinants of health that lead to health care disparities in the US. Findings from virtual focus groups of people with epilepsy, living in Texas and California and reporting Mexico as their country of origin, were presented at the American Epilepsy Society (AES) Annual Meeting, held December 3-7, 2021, in Chicago, Illinois and virtually through AES 2021 Digital Select.

Themes about the health care experience that emerged include the primacy of the clinician in providing information about epilepsy and medications, and many did not seek information from other sources. There is a preference for personal connection with their physicians and a desire to have a physician who speaks Spanish. Lack of eye contact or feeling that a clinician does not make an effort to understand the patient's culture were complaints, and some returned to Mexico for health care. Many layers of emotions and cultural perspective influence their experience, including a sense that illness is the fault of the individual with a disease or a punishment. 

Many Hispanic/Latinx patients are bilingual and often will evaluate translators' performance, particularly around nuances of language and culture, but also regarding knowledge of epilepsy which was felt to be lacking in many translators. Spanish-language educational resources for epilepsy are largely unavailable. 

Grant Simic, BMedSci, CPHQ, executive population health partner, US Neurology UCB Pharma, and coauthor on the study noted, “The most important finding for us is that the journey for a patient with epilepsy who is Hispanic is not the same as everybody else in the US. There are nuances of culture and family context that make it different. Sometimes these are related to language barriers and sometimes they are related to health beliefs and culture and personal values”. 

Key cultural drivers affecting the health care experience were identified: 

•  The family plays a large role with decisions being made in consideration of how it affects the extended family, with whom spending time is highly prioritized 
• For many, faith is a constant presence with both good and bad events attributed to God, this can result in burdens of judgment and guilt
• Optimism is a core cultural value, with believe in putting on a brave face to weather the storm; this may result in keeping conflicting emotions hidden
• Strength and an ability to work toward achieving a better life are highly prized and whereas women hold the family together, men felt a need to provide for the family and may see health problems as a sign of weakness
• Social acceptance is a core component of culture, with "what will people say," or "El quédirán" tied to being perceived positively and as strong
• Success is more often equated with time with family than material goods
• There is great pride in being hard working and reliable
• Making sacrifices for others, social justice, sharing, and helping others are key features of Hispanic culture

This research with people with epilepsy originating from Mexico is in the context of other research that shows the Hispanic/Latinx population is not homogeneous, and the country of origin is often more important than shared language. Implications of this research for health care and clinicians include the need to create Spanish-language epilepsy education that focuses on the family with a friendly tone and a positive and optimistic outlook in which knowledge is power, not fear. Patients from this community are likely to benefit from an approach that encourages active engagement in their own care, asking questions, and arming themselves with knowledge.