Studying Barriers to Epilepsy Care in Uganda: The First Days

Studying Barriers to Epilepsy Care in Uganda: The First Days

Friday, July 14, 2017 - 8:00am

By Erica Onuoha, rising senior, biology major and global health minor

Last Friday, we arrived to Entebbe, Uganda, at midnight after a lengthy 27-hour flight, and after our drive to our apartment, we took a long and fitful sleep. The next day, we were ready to explore our home for the next two and a half weeks, so we went to visit the rest of our team, Nadine and Payal, at Acacia Mall. 

They were relieved to see us, especially because of their extensive IRB process, causing their study to be delayed for over a month. We discussed our hopes and plans for our study over a Mediterranean lunch accompanied with tropical juices. Our study is focused on determining the barriers to epilepsy care in Uganda, including in-depth interviews with pastoral healers, traditional healers, psychiatrists and neurologists, as well as people with epilepsy and their families. 

Once we felt we had a good handle on our goals, we said goodbye to Nadine and Payal, and headed to our apartment, where we enjoyed a spectacular view of Kampala from our balcony. 

Sunday morning, we found ourselves gazing in awe at the Gaddafi mosque. It was easily the most beautiful building we’d seen in Kampala so far. Our guide, Ali, showed us where people pray on special occasions, and he explained the origins of the stained glass (Italy), the carpet (Egypt), the chandeliers (Morocco) and the wooden doors (Congo). It was a beautiful representation of religious unity. 

After bargaining with Ali, he agreed to show us the popular markets around the city. It was a stark and startling difference of shopping, compared to the United States. They sell everything you can think of: furniture, shoes, cow’s intestines and vegetables in sizes I didn’t think were possible. Some of our team members were interested in testing local cuisine and decided on Rolex—a flat bread with egg and tomatoes. 

The next day was the first structured day of our trip, and we had a full day planned. In Uganda, the majority of patients seek treatment for epilepsy through psychiatrists because of the way epilepsy is interpreted here. 

We first met with Dr. Nolean, chief of psychiatry at Mulago National Referral Hospital, who was very receptive to our study and agreed to participate in our focus group with psychiatrists and neurologists. Then we headed to the psychiatry ward waiting room, where we’ll be recruiting our future participants for in-depth interviews. It was a very sobering experience because there were only three functioning exam rooms for more than 20 patients. 

We then took an Uber to our next meeting with Dr. Kajumba, the head of the department of Mental Health at Makerere University, and Juma, a recent graduate of Master of Sciences in Clinical Psychology. He walked us through what to expect during our pastoral healers’ interviews and the best ways to conduct ourselves. We left the room excited to start our research the next day. 

The next day, at 5pm, we found ourselves driving back from our last pastoral interview, excitedly discussing everything we learned that day, like how they believe spirituality interacts with illness, especially epilepsy. It became evident that Western medicine works to heal the body, but there are equally important parts that too often go ignored, such as a person’s psychological well-being. 

It was also fascinating and saddening to hear about the stigma attached to people with epilepsy and their family members. For instance, people will not touch plates or forks that people with epilepsy have used. 

All four pastoral healers had different but complex explanations of spiritual and physical interactions that may take place in seizures as well as what will be necessary to treat people with epilepsy. Furthermore, they had distinct ideas of what and who is capable of healing people with epilepsy. 

However, the most important thing we’ve learned from all our interviews is that some pastoral healers are interested in collaborating with biomedicine to help treat people with epilepsy. It’s only been four days, but I think we are on our way to having substantial and potentially life-altering research findings.

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