Characterizing Cultural Influences in Care Delivery Patterns in Epilepsy Around the World
Abstract number :
3.471
Submission category :
4. Clinical Epilepsy / 4C. Clinical Treatments
Year :
2023
Submission ID :
1456
Source :
www.aesnet.org
Presentation date :
12/4/2023 12:00:00 AM
Published date :
Authors :
Presenting Author: Rakhi Das, PhD – Dell Medical School at University of Texas, Austin
Daniel San Juan, MD – • Instituto Nacional de Neurología y Neurocirugíav; Jorge Vidaurre, MD – Nationwide Children hospital; Jane Von Gaudecker, PhD – Indiana University School of Nursing; Dave Clarke, MD – Dell Medical School at UT Austin; Valerie Cuellar, MS – Dell Medical School at UT Austin; Karla Robles-Lopez, PhD – Dell Medical School at UT Austin; Kendra Koch, PhD – Dell Medical School at UT Austin
Rationale:
Epilepsy is estimated to affect approximately 70 million people with family and caregivers also affected (est.500 million). The historical meaning of epilepsy carries a stigmatized related term, “the falling sickness,” which may create pause for identification and management in cultures. The sociodemographic background of those who have traditionally classified epilepsy, seizure types, and epilepsy syndrome have been globally restrictive to persons from countries with similar cultural backgrounds and higher health care cost and delivery, and it is unclear if this is translatable to other cultures and ethnicities. Therefore, we collaborated on a questionnaire (in French, Spanish, English and Mandarin), requesting information about epilepsy related medical (traditional and non-traditional) management across the Caribbean, Latin America, Africa and Asia, many of whom are less well health resourced
Methods:
An online survey was administered to health care professionals caring for epilepsy patients in resource-limited countries. The survey link and QR code was sent to HCPs in multiple countries by the International Equity in Epilepsy Group (IEEG) country leaders via professional email lists for local distribution. Responses were collected electronically via QR Codes - REDCap. Researchers have begun preliminary quantitative and qualitative analysis of 95 collected surveys to characterize the cultural influences in care delivery patterns in epilepsy.
Results:
Results presented in this abstract reflect the surveys collected thus far. A comprehensive analysis will be completed for presentation. We have received 95 surveys from 17 countries from across, Asia, Africa, Central and Latin America, and The Caribbean. Th providers were asked to list the common beliefs by the patients. Brain injury and genetic cause were the most common reason for epilepsy. Spiritual/Religious cause was followed by something the patients did. Reason for believing in complementary and alternative treatment by the patients and mostly because of their belief in CAM. Side effects of modern medicine and financial and religious beliefs were the other reasons for alternative therapy. Alternative treatments for epilepsy included using herbs, varied rituals, shamanism, and other religious or spiritual practices. The final analysis will characterize alternative treatments in detail
Conclusions:
The purpose of this study is to better understand the impact of the different beliefs towards epilepsy and its management. We aim to explore how epilepsy care delivery is managed across different countries with different cultural and religious backgrounds. Urban and rural populations display different education, information access and health practices. Therefore, we think there may be a diversity of knowledge, attitudes and practices towards people with epilepsy and how they are treated. One of the goals is to improve reciprocity and equity in clinical care, education, research and advocacy among countries with different cultural and religious backgrounds, address potential issues and disparities in care.
Funding: NA
Clinical Epilepsy