Epilepsy-Associated Stigma in Zambia EASZ

1. Epilepsy-Associated Stigma in Zambia (EASZ) M Atadzhanov, GL Birbeck, E Chomba, A Haworth, E Mbewe, P Ndubani University of Zambia Chainama Hills Hospital Chikankata Health Services Monze Mission Hospital

2. Background Epilepsy is the most common chronic neurological disorder among adults and the second most common among children in Zambia Prevalence rates are 4-5 times that in the developed world (Birbeck & Kalichi, 2000) Prior health services research and epidemiological studies suggested stigma contributed significantly to the morbidity and mortality of epilepsy in the region

5. Purpose To understand epilepsy from the perspectives of diverse populations (people with condition and important socio-cultural subgroups) to develop a comprehensive understanding the social, psychological and economic context of epilepsy in Zambia. This contextual framework will facilitate the development of effective, interventions aimed at decreasing stigma and its sequelae

6. Methods Focus Group Discussions Adult males, adult females, youths, parents Ethnographic Study of Traditional Healers Knowledge, attitudes, beliefs, and practices (KABP) survey Clerics, teachers, police, employers, health workers Composite scores for knowledge, personal proximity, and tolerance Role-specific practices as enacted stigma Case-control Study of the socioeconomic status matched by healthcare source, age and gender to people with a non-stigmatized chronic condition

7. Results-Focus Group Discussions Identified potential moderators/mediators of stigma Teachers, police, healthcare workers HUGE burden of stigma noted particularly enacted stigma aimed at women Human rights issue? Traditional beliefs systems Treatment gap often due to problems in drug availability Virtually all aspects of an individual�s life is impacted

8. Results-Ethnographic study of traditional healers (ng�anga) Healers interviewed were universally familiar with signs/symptoms of seizures and epilepsy They initiate treatment after first seizure and are very willing to refer �intractable� cases to clinics Perform important �immunization� ceremony that may decrease contagion fears among family members Referral process established at Chikankata Very helpful in the management of psychogenic seizures Work with urban ng�anga now in progress

9. Results-KABP Surveys Knowledge gaps are substantial, even for healthcare workers Generic composite scores (tolerance, proximity, knowledge) scores associated with reported role-specific practices (i.e. enacted stigma) Stigma within subgroups appear to be mediated by different factors Clerics=attribution (fail to recognize biomedical etiology) Teachers=personal familiarity/proximity to condition associated with more tolerance and less enacted stigma

10. Results: Case-control Socioeconomic Study (n=338)

11. Results: Case-control Socioeconomic Study (2) Greater wealth was associated with decreased forced disclosure of being a person with epilepsy No single variable among people with epilepsy predicted stigma scores however!

12. Barriers EASZ Study Team encountered� Too few social scientists Cultural issue? Zambian investigators with extreme demands on their time already Grants administration woes both in US and Zambia

13. Future Plans R01 application May 2006 Expand to nine sites Outcomes pre-and pos-intervention (some R21 pre-) Multi-pronged intervention program Structural improvement in care EASZ advocacy team to district health teams Education programs (community health workers, healers), healthcare workers Stigma reduction program with teachers Women with epilepsy Empowerment, community activism

15. Many thanks! NIH/NINDS R21 NS48060 Fogarty International Center Kathy Michels University of Zambia EASZ Administrator Stella Mayeya Chainama Hills Hospital Monze Mission Hospital Dr. Kennedy Malama Chikankata Epilepsy Care Team Fridah Kamwenda, Charles Mabeta Michigan State University Kimberley Rockwell, Jamey Hardesty, Natalie Organek