Objective:

 To describe community-level knowledge, attitudes, and practices regarding seizures in a Tzʼutujil Mayan population.

Background:

Epilepsy is the most reported neurological disorder worldwide[1], yet its prevalence in Guatemala is unknown. In Latin America, people with epilepsy face a higher mortality risk than the general population. To expand equitable access to care for patients with seizures, it is necessary to understand how they are perceived in underrepresented regions.

Design/Methods:

A pilot qualitative study of twenty-five interviews was conducted in Spanish with a Tz’utujil interpreter in the Atitlan region of Guatemala. Community members were identified through a snowball sampling method with the help of a trusted local hospital. Interviews modeled on the Kleinman explanatory model of illness assessed knowledge, beliefs, and attitudes surrounding seizures. Recorded interviews were transcribed and translated into English. Two reviewers analyzed and coded each interview using a consensus-based coding framework.

Results:

Almost 80% of participants were familiar with epilepsy or seizures. Most of the interviewees describe seizures as loss of consciousness and bilateral limb shaking. In Tz’utujil, this is called Rex kimik, which translates to muerte verde in Spanish, or green death in English. Some interviewees attribute seizures to the brain, while others to strong emotions. Many participants fear seizures but do not believe they are contagious and would not avoid people with seizures. Some consider natural remedies and prayer as treatment options, choosing to offer comfort when witnessing a seizure instead of seeking emergency services. Many participants stated that high cost and limited access are barriers to seeking medical care.

Conclusions:

The Tz’utujil community was found to have strong cultural-religious beliefs about seizure etiology and treatment despite some Western medical knowledge. More cross-cultural investigation is needed to better understand how people in rural Mayan communities approach seizures. This can enable community-hospital partnerships to improve knowledge about seizures and other neurologic disorders.