In some low-income countries, cultural and spiritual beliefs surrounding epilepsy often cause delays in seeking appropriate treatment, sometimes leading to dire outcomes. But even when patients seek treatment, they don’t always seek it in the right way, asserts Angelina Kakooza-Mwesige, an associate professor and child neurologist at Makerere University in Kampala, Uganda.
“Some patients will combine traditional medicine with western medicine, and this can have detrimental results,” Kakooza-Mwesige said on during a Duke Global Health Institute event titled, “Epilepsy: A Model of Care Embedded in Culture.”
Kakooza-Mwesige was one of four panelists at the October 13 seminar, part of DGHI’s Think Global series. The discussion, moderated by DGHI associate professor Deborah Koltai, focused on a joint effort by researchers in Duke’s Global Neurosurgery and Neurology (DGNN) division and Makerere University to improve education and access to epilepsy treatment. The panelists emphasized the necessity of working with local stakeholders when designing research, training and capacity building projects.
Dr Kenneth Kalani Okware, a senior medical officer at Uganda’s Ministry of Health, acknowledged that efforts to address epilepsy in the country are limited by other challenges, such as workforce shortages and low budgets for medicines and supplies. Pratamesh Ramasubramanian, a Duke undergraduate student who was part of a Bass Connections project on epilepsy in Uganda, also explored the importance of cultural sensitivity when communicating health messages in communities.
The researchers agreed that cultural sensitivity towards patients’ beliefs as they sought treatment was crucial for successful management of epilepsy.
Watch the full discussion below or scroll down for highlights.
ABOUT THE SPEAKERS
Deborah Koltai (moderator)is a tenured Associate Professor in Psychiatry & Behavioral Sciences, with joint appointments in the Department of Neurology. She also directs the Duke Clinical Neuropsychology Service, and the Department of Neurosurgery, where in the Division of Global Neurosurgery and Neurology (DGNN) she directs the Epilepsy program.
Pratamesh Ramasubramanian is an undergraduate student at Duke University studying biology and global health.
Dr. Kenneth Kalani Okware is a Master of Medicine in Psychiatry at Makerere University and a Senior Medical Officer at Uganda’s Ministry of Health.
Angelina Kakooza-Mwesige is an Associate Professor and Child Neurologist in the Department of Pediatrics and Child Health at Makerere University in Kampala, Uganda
HIGHLIGHTS
On why culture cannot be ignored.
Deborah Koltai
“Two out of three people in Uganda believe spiritual causation to be a sole or mixed contributor of seizures. Coupled with the belief that epilepsy is contagious, stigma and discrimination against those who suffer from the disease is incredible.”
Deborah Koltai
“When you have people who are largely untreated, are having seizures and are also regarded as being contagious, the discrimination will keep them from getting the treatment they need and this will increase risk of injuries, morbidity and even mortality.”
Angelina Kakooza-Mwesige
“There is an average two-year delay before patients get appropriate treatment. These two years are very important because of the complications and injuries that arise from the seizures.”
Pratamesh Ramasubramanian
“When healthcare providers, listen keenly to patients’ stories and are culturally sensitive while interacting with patients, they will have better success in keeping the patient engaged with treatment.”
Pratamesh Ramasubramanian
“As an outsider going into a community to conduct research, I have found that adapting to their language instead of expecting them to adapt to yours will make for a more productive partnership.”
Importance of more research on epilepsy
Kenneth Kalani Okware
“Research is critical for development of policy options that support epilepsy treatment in the country. If we have evidence that shows that prevalence of epilepsy is high, or the struggles and attitudes surrounding epilepsy treatment, then recommendations can be well- received by policy makers at the ministry level. Lack of data is a big problem.”
Challenges facing epilepsy care
Kenneth Kalani Okware
“There is a big treatment gap due to inadequate numbers of neurologists or even mental health care professionals to care for epilepsy patients. As a country we recognize the challenge and while we have done some additional training, there is a problem with follow-up and supervision.”
