Social work in epilepsy: Closing the treatment gap and improving quality of life - Dr. Rugare Mugumbate

Closing the epilepsy treatment gap relies heavily on social and cultural acceptance of epilepsy as a brain disorder that can be managed with medication or other therapies. Dr. Rugare Mugumbate discusses the five disadvantages faced by people with epilepsy, as well as the important role of social workers and the need to focus on lessons learned from previous pilot projects and awareness campaigns.

Dr. Mugumbate's book - Epilepsy in Resource Limited Settings: Managing Quality of Life - provides a thorough examination of the impact and understanding of epilepsy in resource-limited areas.

Aimed at a wide variety of health practitioners and stuents, The book is available in multiple formats.

Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.

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The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Instagram, and LinkedIn.

Transcript

Nancy Volkers:  Many Sharp Waves episodes focus on the biomedical aspects of epilepsy, but without social and cultural acceptance of the biomedical model - that is, epilepsy is a condition of the brain and it can be treated - people with epilepsy will not seek and follow medical advice. Our guest today will discuss the importance of an integrative approach to epilepsy diagnosis and treatment, particularly in lower resource areas. He's recently published a book on the topic with a focus on the global south.

Dr. Rugare Mugumbate: Thank you.

Thank you, Nancy, for welcoming me to Sharp Waves. It's one of the podcasts that I go to when I want to listen while I'm driving, when I want to get information on epilepsy, and I've enjoyed episodes from Africa as well as other countries. So my name is Rugare Mugumbate. I am from Zimbabwe. I am primarily a social worker, so I'm trained as a social worker.

I was trained in Zimbabwe, then finished my training with a PhD in Australia. Currently, I work as an academic at two different institutions. The first one is the University of Wollongong, where I am a university lecturer in the School of Health and Society. I'm also a senior researcher with the University of Johannesburg in South Africa, where I do research that touches on several things, but today I'm focusing on my work on epilepsy.

One of the products is a book that was recently published by a global publisher. And the book, as Nancy said, is on epilepsy in resource-limited settings. There's a lot of focus on social management of epilepsy, but it also touches on initiatives to manage epilepsy the regional level, but also at the global level.

Nancy Volkers: So the book is called “Epilepsy in resource-limited settings: Managing quality of life”. What motivated you to write this? 

Dr. Rugare Mugumbate: Yeah. A number of factors motivated me to write the book. Of course, the major one for me is the lack of adequate literature in resource-limited settings. There is literature that I've used before, but it largely takes a biomedical approach, where the biological or the physical is emphasized.

But when we also talk about the literature, also important for us to highlight the quality of the literature itself. You rarely find current books that talk about the social management of epilepsy, particularly in the Global South. I've also seen some books return in the Global North. And covering both the north or the south, or being global in focus.

But there are things that I think those books miss, especially on the spiritual aspect of epilepsy. They often write about it, but just briefly. In this book, I emphasized two broad approaches to the management of epilepsy, which I think is important. That's the biomedical and the spiritual, and I then talked about the competition that exists not only in the Global South, but also in the Global North. There is competition between the implementation of the spiritual approach to managing epilepsy and the implementation of the biomedical approach to managing epilepsy. So for me, that became a huge motivation of writing this book. 

In most cases in the Global South, we are relying more and more on literature projects in the Global North. While the distinction between Global North and global South is at times vague, because we find pockets of resource-limited settings in the Global North, but you also find pockets of resource-rich communities in the Global South. But in between you realize that most of the literature that is used in the Global South comes from the Global North in academia.

It causes what we call epistemological imbalance, where we are listening to a single voice. And we think what we're getting from that single voice is adequate for to represent all voices. All voices should be heard, all voices should be on the table. It's about bringing all those together. And when you put those together, you come up with a comprehensive package of managing epilepsy without neglecting knowledge from the Global South and without overemphasizing knowledge from the Global North.

Nancy Volkers: Excellent. Thank you so much. So your book is centered on five disadvantages that people with epilepsy face. Could you discuss each of those? 

Dr. Rugare Mugumbate: The first disadvantage is fear. 

So back in 1998, my sister started having seizures. She went on for eight years without a treatment. One thing characterized how we experienced the epilepsy as a family. It wasn't an individual issue. It was how we experienced it as a family. So fear: fear of seizures happening at any time. It disrupted our way of life. It disrupted the work that we were doing. We are primarily farmers. It disrupted our schedules, it disrupted our ways, it disrupted our schools and everything else. 

So that fear is a major factor when it comes to epilepsy, but that fear applies at different levels. It's not just at the family level or individual level, even in the community, people with epilepsy are feared. Some interpret it as witchcraft. So as a family you are feared, or as an individual you are feared. 

Then the second disadvantage people with epilepsy face is stigma, and that has been written about whether in the Global North or in the Global South. There is a stigma and it results in several other disadvantages. So stigma relates to labeling or characterization of people with epilepsy as being inadequate, as being less than human. 

Another one which actually was the main theoretical basis of my PhD research that culminated in several chapters in this book is injustice. Injustice is also broad, but I want to look at it from different angles. In Africa, where I come from, we talk about ubuntu injustice. Ubuntu injustice is a situation whereby other people in the community, for example, people with epilepsy, their situation is not recognized or their situation is interpreted in a way that disadvantages them.

That's injustice. You go to other communities, they interpret injustice differently. You go to Asian communities, they talk about karma, when they talk about dharma, it relates to how individuals are perceived and what capabilities they have in the community. Then you talk about in religion, Abrahamic religions, for example, in Christianity or even in Islam, the concept of social injustice there is also different from African interpretation, but also from the Asian interpretation. The focus is more on are you right in the eyes of God or in the eyes of Allah. In terms of religion, they put people with epilepsy in a position where they are regarded as less human, and when they are less human, it means there is less recognition for them.

I do like this view of injustice that talks about three things, and that's what I emphasized in the book. The first one is being excluded from the economy, which is economic injustice. For example, if you don't have the medication, if you don't have a job, you are being excluded from that. And if you don't have a job because of your condition of epilepsy, it means the situation becomes even more severe. You've got a condition, you don't have a job, you can't afford medication. So that's economic injustice. And there is a writer who is credited with that thinking. She's Nancy Fraser, she's French. 

The second point she talked about is cultural injustice, and I would want to call it philosophical injustice. That's when people look at you as less human because of what you are, because you've got a seizure that can't be explained, then you are less human. So that's philosophical injustice and it fits very well with the different philosophical interpretations that I talked about, the African, the Abrahamic, the Asian. There's also the Latin American, there are different interpretations of epilepsy. So that's the cultural, but I call it the philosophical. 

Then the third one. This is when as a person you experience social injustice. What it means is that in society, in the community, the community looks at you as if there is no space for you in that particular community.

At the end, what happens? There are no laws to protect you, which becomes political injustice. There are no policies to protect you. There are no policies to say, we need medication for this person. There are no policies to say, we need more doctors for this. We need neurologists who can manage this. There are no policies that say when disadvantage happens in employment because of your condition, what happens? 

Then lastly, there are two other disadvantages that people with epilepsy face. One is the predisposition to disability. So if you are having epilepsy, there are chances are actually, if you are not on treatment, the chances increase that you experience disability. You are unable to work. Or you are even unable to walk, you are even unable to use your intellect. This happens temporarily in epilepsy, but people with epilepsy are predisposed to those situations where their body becomes disabled. 

Then lastly, and this is a sad one, and the reality in the Global South, especially: predisposition or the disadvantage of death.

People die because of burns. People die because of drowning. People die because of not getting attention, not getting first aid and first guidance when they're experiencing a seizure. People die due to occupational accidents when they are working with epilepsy and there is no full support or they are not fully controlled. That predisposition of to death is a big disadvantage for people with epilepsy in the Global South. 

To sum up these five disadvantages, that's fear, stigma, injustice, disability. And lastly, predisposition to death, which for me is a reality and I've experienced that when I worked with people with epilepsy in Zimbabwe. I lost people I was working with. But also in my interactions with people with epilepsy in different African countries as part of my work with the Epilepsy Alliance Africa.

So this was long. 

Nancy Volkers: That's okay. It's important. 

Dr. Rugare Mugumbate: Yes. And it's, it's actually the core of the book and was also the core of my research, and it's also the core of the work that I keep doing as an advocate globally. 

Nancy Volkers: Exactly. Exactly. So what can be learned from initiatives in the Global South about ways to improve quality of life in people with epilepsy?

Dr. Rugare Mugumbate: Yeah, thanks. Thanks for that. So there are many initiatives that have taken place in the Global South, and they are many that are continuing today, and there are major lessons from there that could be of benefit to everyone. 

Zimbabwe and Senegal were part of the Global Campaign Against Epilepsy. That campaign started in 1999 and Zimbabwe and Senegal did demonstration projects in 2000. So that was a huge learning point in terms of what needs to be done in terms of epilepsy. By the way, the demonstration projects were also done in China, but also in Brazil. And the purpose was to find out better ways of managing epilepsy in the in the Global South. So I'm talking about Asia, I'm talking about Latin America and Africa. It means three regions where these demonstration projects happened. 

The major lesson was that to improve management of epilepsy in the Global South, we need to capacitate health workers, including nurses, with low-cost training and when they are capacitated with training and education, we need to make medicines available.

When you capacitate people and they provide health education and awareness, people are going to come out of their homes and communities to seek treatment, but when they get to the clinic and there's no medication, you are putting them in a quandary. They are there. They want the treatment. You made a promise that epilepsy is a treatable condition. That's what the nurses and doctors have done in the communities. Then people come out, you are unable to provide the medicines to them. That becomes a challenge. Or if you make the medicine available in one month and not the following month, it means people are going to default treatment. And when they default treatment, they're going to say, “This is not working,” and they're not going to rely on medical treatment for their management of seizures.

That was a major lesson from the pilot project. So it's known what needs to be done: Ensure that the health workforce is there, is capacitated, not only focusing on the doctors, but also I said the nurses, primary care, health workers, those that interact with people in the villages, in the suburbs, in the communities.

More of them are capacitated, they get the skills they need to manage epilepsy and for health awareness. People come, they're treated, they get medicine. That way the treatment gap is reduced. And indeed it was reduced significantly in research that happened in Senegal as well as Zimbabwe, but also Brazil and China. Those basic interventions reduced the treatment gap and also increased awareness, which is what we want to achieve. So that was a major lesson. 

Further, I think around 2015, pilot projects happened in Ghana, but also in Mozambique. They also happened in Myanmar and other countries outside Africa. And again, the results pointed to the same thing. More awareness. attendance to clinics for medical treatment. Then there are several other interventions happening  in Latin America, in the Pacific region, in the Asian region, that are all focused on improving the management of epilepsy. And as you know, the current one is the Intersectoral Global Action Plan on epilepsy, and there are activities happening in all countries of the globe to lessen the burden of epilepsy. 

So what we have learned in summary is that in primary healthcare workers are important. We have also learned that making medicines available is important. One thing that has come out from all of this research that has not received maximum attention is, What do we do with this research? I think China has done better than Africa. Where I come from, we've just heard the research, we've piloted the results, but it sort of ended there. We've not gone further to say, what do we do with this finding? How do we translate this into policy and practice? How does this change the way we manage epilepsy? How does this change the way we fund epilepsy programs? 

So we've not gone back strongly to look at that and use it as a foundation of our programming on the African continent, and it's something that we need now instead of having more and more pilot projects. In my view, we need to implement and we need to use the evidence that is currently there to ensure that we are improving epilepsy management.

And where do I see a gap when it comes to the policies? I'm Secretary General of the Epilepsy Alliance Africa. We've got multiple organizations in 40 different countries, but these are non-government advocates doing work at their local level. In a country of 20 million, maybe close to 20 million like Zambia, and you have got one or two organizations, they can only reach less than a hundred thousand.

What happens to the rest of the population? Government has to be doing that. So these public policies, they ensure that government funds epilepsy programs, they ensure that epilepsy is recognized as a disabling condition, as a condition that can predispose people to death, as a condition that results in stigma. That results in fear. That also results in injustice. 

So that's what I think is required at this moment to ensure that governments take epilepsy on board. They have epilepsy strategic plans, they've got epilepsy policies, they also have got laws. They can be specific laws on epilepsy, but it's more feasible to integrate them into other policies. Like it could be a law integrated in disability law, it could be integrated for other countries, even in mental health law. It can be integrated there or it can be integrated in the law on non-communicable conditions. 

So it's really important that that gap of government policy and programming is addressed if we are to realize the goals set by different organizations, including the World Health Organization through the IGAP that we are currently working on. 

Nancy Volkers: Could you talk about the role of social management of epilepsy and why that is so important for reducing the treatment gap?

Dr. Rugare Mugumbate: We focus on the medical side, but we forget another more important side, which is the social management of epilepsy. And this is where I come in as a social worker. As a social worker in the Global South, you are not only concerned with the medical management of epilepsy, but you are also concerned about how it is interpreted and how that is impacting treatment.

Your role as a social worker is not to stop or to act as a barrier to how people interpret epilepsy or how people seek intervention spiritually or biomedical, but you still seek to understand and see how that is impacting on the quality of life, and you then work with the people to maximize the quality of life without becoming a barrier to their culture, to their interpretations, to their understanding, but focusing on the quality of life.

Now for our governments, they focus on the medical. They neglect the social, the psychological is also neglected, but we very well know that people with epilepsy experience severe psychological challenges, issues of stress, issues of depression, suicidal ideation. They are very common among people with epilepsy and their families.

So instead of focusing on purely clinical interventions, it's really important for governments, even when they put policies and programs and plans for epilepsy in place to also consider the social management. 

One key function of a social worker or a community worker is to ensure that people access resources that are available within their communities and or within their welfare system. Some people don't know that government has got resources to support people who are in need. Even when people know that, they may not have the means to travel to go to the social welfare office where this is processed, or they may not have the know-how or the recommendation that is required to say that I've got this condition, it is disabling me in this way, and the like.

And more so for people with epilepsy, you'll find that epilepsy in other cases is not considered a disabling condition. You are expected to be like anyone else. But besides it being disabling, you need medication. You need that medication for life. A few people will be medically withdrawn from medication, but for mostly people they live with that medication because it's a chronic condition. So focusing on the social is really also important. Focus on the psychological is really also important. Focus on the economic is important. 

As I said before, my study focused on epilepsy in the context of disability and employment, and a key finding was that without support, most people with epilepsy will find it hard to succeed in the job market. There were a few cases, a few case studies where people did well. But I attributed this to individual resilience as opposed to them having no barriers. So there were multiple barriers. These people were very resilient. They succeeded. But if we were to remove those barriers, then those people would have done much, much better than they were doing.

So economic is really important. Supporting people in training, in education, addressing the economic barriers is really important. Then the last one is the police level, ensuring that the police environment is adequate, is supportive of people living with epilepsy in terms of ensuring that medicine is available, ensuring that this discrimination or injustice is addressed using available laws both at the community and societal level.

I do think a focus on the clinical aspects of epilepsy while neglecting the social management—it doesn't help us a lot. It gives people a reason to default medication because they don't have the money, because they are facing challenges in society, because they don't have a job. It also ensures that we don't integrate.

Going forward, I would want to see a situation whereby the divide between the social and the medical is not there. When we look at the social medical divide, it takes us back to the question about the two broad perspectives of epilepsy that are dominant in the Global South. But as I said, they're also found in the Global North. That's the spiritual perspective and the biological perspective.

The major difference, of course, is in terms of the management of epilepsy, is can you cure epilepsy or not? In the spiritual realm, there is a conviction that epilepsy can be cured. It's curable. In the biomedical perspective, there is a conviction that epilepsy can be managed, it can be treated, but there isn't the cure for epilepsy yet.

Now, in the spiritual realm, people go there because people are promised a cure. “Come here, I'll give you holy water, I'll give you holy seeds, I'll give you herbal medicine and you'll be cured.” And people go there for that, for that cure. So there is that divide between the medical, the biomedical and the spiritual.

But I believe the role of social management in both, in both biomedical and spiritual I think is really important. It can bridge the gap between the spiritual and the biological or physical perspective.

I do believe though that to increase the quality of life, we do need to ensure that we take that integrative approach. That integrative approach acknowledges people and their spirituality, and in the same context, it also emphasizes the biomedical treatment to manage the seizures. So when we look at the integrative management, which is the last chapter in my book, it says, acknowledging people and their cultures and their beliefs and their interpretations, that's number one. That contributes to the social management. And as social workers, that's what we say. If you take away someone's family, someone's spirituality, someone's community, social management does not exist. So that's why integration becomes important.

We are acknowledging that to manage epilepsy we need to deal with the social and the biomedical. To deal with the social, we need to acknowledge the spiritual, the family, the community, and people's values. For the biomedical to succeed, people have to have to attend the clinic, and when they attend the clinic, they need to comply. Compliance requires the social management. 

If I say I'm successful with an epilepsy patient as a social worker, I've made them comply with their medical treatment. And for me to be able to do that, I need to understand them as a person. What is it that is ending up in them, not complying, and how do I address it without acting as a barrier to their spirituality? Without acting as a barrier to their interpretation of the world, their worldview or their philosophy? So the two, they need each other. As social workers, we acknowledge that medical treatment is important, but we don't provide it. It's provided by the doctors. The doctors acknowledge that social management is important. It ensures that people keep coming for their medicine. They keep coming for tests that are required. So the two, they need each other. 

Nancy Volkers: Very well said. So you've mentioned an integrative model a couple of times, the integrative model for managing epilepsy. Can you talk about the details of that and what the, what gaps it addresses and how it could be used? 

Dr. Rugare Mugumbate: Yeah, thanks. Thanks for that. So the integrative model for managing epilepsy, IMME, it sort of brings everything together. In the beginning of the book, I talk about the two broad perspectives of looking at epilepsy, the spiritual and the biological. The spiritual says epilepsy exists in the spirit of people and to manage it, we need to deal with people's spiritual side or spiritual beings. That's how we manage epilepsy. The biological says epilepsy exists in the body. To manage it, we need to deal with the body, either through surgery, through dietary, through medicine, or through herbal medicines. That's the biological side. 

So in short, the IMME model has got three recognitions and four responses. The recognitions are economic, philosophical, and political. These are the things that we should not neglect or we should recognize. Then there are four responses: Let us be preventive. And let's focus on capabilities in Global South communities, families, and individuals. Then family and community is really important and taking an intersectoral approach. 

Nancy Volkers: Thank you so much.

Dr. Rugare Mugumbate: Just want to emphasize that the book is suitable for both the Global South and the Global North. I hope people in medicine, people in health, people in community work, people in social work, including students and practitioners, find this book useful. The book is in different formats: paperback, hard cover, also e-book. And it's also a small book. It's not a huge book. It’s about 10 or 12 chapters. And that was done for a purpose to ensure that we reduce the cost. So hopefully people will find this book useful, particularly in the social management of epilepsy in the Global South to improve quality of life. 

Nancy Volkers: Excellent. Thank you so much for joining me. I really appreciate it. It's been very informative and I hope that people do seek out the book.

Dr. Rugare Mugumbate: Thanks again and thanks for your time too.