BACK HOME REPORT: The 'Silent Killer': Diabetes Mellitus in Uganda Health Seeking behaviors and perceptions of diabetes among diabetic patients

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1 BACK HOME REPORT: The 'Silent Killer': Diabetes Mellitus in Uganda Health Seeking behaviors and perceptions of diabetes among diabetic patients 1. The purpose and focus of my study in Uganda I conducted my fieldwork in Uganda from the 17th of September 2012 to the 3rd of December The aim of my study was to examine Diabetes Mellitus (DM) as one of the most common non-communicable diseases (NCDs), which is rapidly increasing to a global health concern. It is estimated that 346 million people are affected worldwide - more than ten times as many than in 1997 [World Health Organization (WHO) 2011]. There is evidence that the numbers will increase further in the following years. Especially in newly industrialized and developing nations such as Uganda diabetes is on the run. But why is this? Is the number really increasing? Is it a change in lifestyle, like many health professionals claim? I can already say here, that I did not find a clear answer to this question during my studies, but one possible answer could be that there was more focus put on infectious diseases, such as HIV/Aids or Tuberculosis and that in the past centuries non-communicable diseases like DM were neglected. This made it interesting for me not only to examine DM as a multi-layered problem perhaps emerging from and produced by society itself but also to see it as a 'new' disease among the Ugandan population. The main interest of the study was to shed light on the actual ways in which people affected by DM in Uganda understand and conceptualize the disease especially in rural settings. What does being affected by diabetes mean for them? What do they think why they are affected, where does diabetes come from and how much has and is this chronic illness influencing their lives? What effect does DM have for instance on daily routines? And where do they initially seek for help? Those were some of the questions I asked the patients during the fieldwork. I mainly carried out my study in three rural districts of Uganda and additionally the capital city Kampala: Kayunga (see ill.1: red arrow), Wakiso (see ill.1: blue arrow) and 1

2 Kampala (see ill.1: purple arrow) belonging to Central Uganda and Iganga (see ill.1: green arrow) belonging to the Eastern region of Uganda. I wanted to draw attention to individuals affected by DM in rural Uganda, one of the African countries with a fast increasing number of DM cases. On the one hand it was essential to look at the attitude of political economic and global forces towards DM and to contrast them against individual Ugandan experiences with and beliefs about diabetes on the other hand. A growing body of research in the field of diabetes has shown, that the Ill.1: Map of the districts in Uganda "prevalence and distribution of diabetes closely correlates with economic development within and between countries and that diabetes is a 'disease of modernization', urbanization and industrialization, but also changes in lifestyle shifting from traditional healthy and active lives to modern, more sedentary, stressful lives with a tendency to over-consumption of energy-dense food" (Hjelm/Mufunda/Nambozi/Kemp 2003: 424). I wanted to critically examine whether this is the case in Uganda too or not, especially with focus on the rural. 2. Before and during fieldwork After I had been quite unlucky with the previous field sites I had chosen before and therefore also the topic I primarily had thought about working on (first Nigeria, where three Europeans had been killed in Sokoto, the city I wanted to conduct my fieldwork; then Guinea Bissau which had become too unstable due to a military coup) it turned out that Uganda after all had been the best alternative option I could have chosen. During my internship at the Max Planck Institute for Social Anthropology in Halle/Germany I luckily met a professor at a conference there who came from the Makerere University in Kampala. This made it easier for me to find accommodation or 2

3 deal with practical issues such as Visa or doing research in the country in general. It was also good to know, that if I would have had a problem, I could have contacted him for help. But during the whole fieldwork I was very lucky in finding contacts. During the flight from London to Uganda I sat next to a Ugandan lady, Catherine, with whom I had a long chat during the flight to East Africa. Since it was quite a long flight we had a lot of time to get to know each other a bit and among other things she told me, that she owns a chicken factory in Kampala and that she had been travelling through the US during her 3 weeks vacation. She asked me, what I was planning on doing in Uganda and I told her, that I was a student on my way to do a research project on diabetes. When she heard that, she began to laugh and told me, while pointing at a lady, who was sitting 2 rows next to ours, that this lady was working with diabetes and that she wanted to introduce me to her, when we had landed in Entebbe, the International Airport of Uganda. That is how I came to meet Phibby, a woman who is, among other activities, working together with the Parliament of Uganda, and is the initiator of an NGO called Hands of Hope, working for the prevention of cervical cancer in rural communities in Uganda and also working with Non-communicable-diseases such as diabetes. This coincidence from the airplane turned out to be a great chance for me to get into corners of the field quite fast, which perhaps otherwise would have been blocked totally. For example I was introduced to the Minister of Health in Uganda, whom I also interviewed during my stay. Or generally being able to meet officials within the health sector would have been hard if not impossible without the help of Phibby. My plan was to first orient myself before I get started with the actual work. But that turned out to be difficult. From the third day I was in Uganda I basically was involved in my field. Or perhaps I must say I involved myself. I was way to excited and enthusiastic to not start working. I started with introducing myself to diverse clinics; I attended a conference, which took place in the first week of my stay in Kampala dealing with the Health Care System of Uganda, which was a perfect platform to meet potential informants. It was so exciting for me and of course in the beginning it was more about getting to know how things work in Uganda, how the health system works, who is responsible for what, which clinic is private, which is governmental. All those were small but essential things I had to discover for being able to 3

4 enter the field properly. What I have done the first perhaps 2 weeks was to just walk on the peripherals of my fieldsites before I really knew what was possible to do and what I actually wanted to do. I had decided to carry out my research at the National Referral Hospital Mulago in Kampala as a governmental establishment to which all patients, no matter which social status and economic standing, hat access. However it wasn't as easy to access the hospital as I had thought it would be. And so it was not until the last two weeks where I had finally paved a way to access the hospital. For this reason I had to be prepared that my original plan of doing a rural-urban study might not work out and I cautionary decided to shift my study and only examine rural hospitals, which were much easier to access. So I after doing preliminary inspections, I chose the three hospitals I already mentioned (Kayunga, Iganga and Wakiso) where I did my observations and conducted the interviews with my informants. Each I did 7 interviews with diabetes patients without putting emphasis on gender or age and one interview with the head of the diabetes clinic. Additionally I visited private establishments in Kampala, to also get the focus of private and urban patients into my study. I was also lucky to attend the World Diabetes Day in Tororo (3 hours East of Kampala), where I could gain insight on how diabetes is dealt with and how awareness campaigns function. I came to participate in the organization and preparations of this event, where I got to work with the team as a part of it and not as an unknown intruder, asking many questions and keeping the people away from doing their work. 3. My role as 'researcher' During my fieldwork I often thought about how my informants could see me, what effect I might have or more generally what my role is within the field as a researcher. I also wondered whether my dark skin color would have any influence on how I would be perceived. Would it perhaps be an advantage or maybe even a disadvantage? One thing became clear pretty fast: I was seen as the European researcher, who was thought of having knowledge of basically everything. The people, even though they knew that I was only a Master student, thought of me as a person who has to be treated with respect and subservience. Often I felt that this is not the way I want to be seen, and of course I also knew, that I am not the almighty European who can change their situation by only 4

5 appearing there once and giving attention to their problems. But in the end it was simply easier to not justify myself the whole time. And I realized that it might not even be necessary and that it was more for my own satisfaction to be seen as a student still in practice and probably doing a lot of mistakes and often not knowing if I was actually on the right track. And it actually began to feel quite good and made me confident that my informants didn't question my role as much as I did myself. I was Arlena Liggins from Germany studying in Sweden and I was doing my research on one of my informants greatest burdens. So they were simply thankful for that. And that I was not one of them only because I had darker skin than a 'real' white person became pretty obvious since they often spoke of me as the 'mzungu' 1. What was a very awkward situation for me was, that I was often asked for advise. Not only the patients wanted to hear my recommendations in what medications would be the best for them or if I thought they would become healed etc., but also health professionals or Phibby asked me things that went beyond my capability. Most of the time their questions had to do with where to get funds for their projects or how to write an applications for funding or such. It made me stunned when it happened the first time and I have to admit it made me also sad. Not because I didn't know how to answer or how to help, but it made me sad because I had -perhaps naive? - expected professionals to know such things. I thought if they didn't knew, who else did in this country? But it also showed me, that there was this gap between knowing what to do as a professional and actually not having any clue at all. But what I told myself was that I was a student in the field facing all these kinds of incidents, which actually gave me a picture, and a feeling of how the society was working. I was every day in the process of gaining new little insights on the one hand and on the other making myself clear I was not there to change their situation but simply observing in which situation they actually are. 4. Themes emerging for the thesis One thing that stunned me from the start was the fact that not one of the 25 diabetes patients I had interviewed actually knew whether they were affected by type I or type II 1 mzungu is a term used in East Africa for people of foreign decent 5

6 diabetes, not to mention that they had never heard of the distinction at all. I had to throw my initial plans of only focusing on people affected by type II diabetes, as the type seen caused by lifestyle changes, overboard. The question arose, what do the patients actually know about their disease and where do they know it from? I had the feeling that many of the patients actually adopted and accepted the position of being a victim, hardly questioning their illness or asking questions to the doctors or nurses at all. However I have to say, that on a diabetes day with patients there would have not been room for many questions at all. The roles were reverse: In all the rural hospitals the head of the diabetes clinic were nurses or clinical medical officers with similar qualifications, and not doctors. So from the diagnosis up to the prescription of the necessary medication, the nurses were responsible. Doctors were often not even available at all. What we have here is a shift in responsibilities, which I want to have a closer look at during my thesis writing. The nurses functioned as doctors and the patients sometimes functioned as nurses by being responsible for their fellow patients informing them about diabetes. A position which on the one hand was meant for the good but on the other hand I experienced that this often caused misunderstandings and the flow of false information about diabetes. My interviews showed that there were often irregularities about what was known about diabetes amongst my informant groups of one hospital, especially then, when a patient had the task to health educate the fellow patients. Another thing is that before I went to the field, I must admit, I had expected to encounter many different beliefs and perceptions of why a diabetes patient in Uganda is affected. Also I thought the patients will have experience with different treatments, for instance traditional medicine. In fact it turned out that the minority firstly had thought about why they are affected. They seemed not to have an interest in actually knowing why they were affected. What I experienced here was what I call patient-passivity, since the majority of my patient informants were just doing what they were told to do and never questioned why. Most of the patients initially sought for help in health centers or hospitals and never consulted a traditional healer. This stands in contrast to the statements of the health care workers, like the nurses and the doctors I talked to, who nearly without exception mentioned that a major problem in treating diabetes is, that most patients come too late to the hospitals due to the fact, that they first went to traditional healers or witch 6

7 doctors. Of course 25 patients is not a representative number to actually refute this, but I do think it shows certain tendencies. What I experienced was a discrepancy in what the patients thought and did and what the health care workers thought their patients thought and knew or were doing. A further interesting point could be to look at diabetes as a what I call now 'pseudostigmatized' disease. What I mean here is that diabetes itself is not stigmatized in Uganda. It is a disease that, if know, is accepted by society (different than in other countries where diabetes is sometimes seen as self-caused). But what I have observed among my informants is that diabetes can lead to a more or less enormous loss of weight. Especially in rural communities a person who loses a lot of weight is often considered as being HIV positive. So even though the person in question does not suffer from HIV/Aids but from Diabetes this person can be falsely stigmatized for the wrong disease. On a theoretical ground I want to have a closer look on how discourses arise. Here I will definitely have to think about Foucault and his discourse theory. This is important for my thesis since I was wondering, why of all things there is now attention drawn to NCDs such as diabetes, even though they have always existed and it is not even clear, whether the numbers are really increasing due to lifestyle changes or if the numbers are increasing because it is now more in the focus. It will be interesting to compare different discourse theories with each other and discuss them against the backdrop of my example of diabetes in Uganda. Another interesting aspect will be to look at the prioritization of diseases. How are illnesses prioritized and why? Hereto I will use interviews with professionals in official positions and use some of the patients statements what their impression is. I see the discourse of NCDs and the prioritization closely linked to each other. In how far I want to investigate in my study. 4. Résumé I enjoyed the time in Uganda very much despite all the ups and downs I was going through, never really being sure, whether I was actually doing the right thing or not. But I did figure out, that it might not only be about doing everything in a perfect way right from the start or doing it perfect at all, but that it is part of the learning and research 7

8 process to learn from the errors or missteps from previous actions. And that often even missteps lead to a result which is able to shed light on a certain problem. I developed a critical and reflective way of thinking, trying to improve my interviews and my observations to gain the best possible result for my study. Overall when I look back now, a few weeks after being back home, some things that happened seem unreal now. For instance that I consider myself having had a lot of luck. I ask myself whether doing fieldwork isn't also a big part of being at the right place the right time, because that is how it feels now. I had great moments together with my Ugandan friends, whom I met during my fieldwork. It was the celebration of 50 years of Independence on October the 9th, where I became witness how a whole nation 'goes mad' and I was in the middle of it being part of that very special moment for so many Ugandans. Yes, I do have to say it was one of the best experiences in my life to do my fieldwork in Uganda. And when I look at the pictures, I just shake my head thinking: "this is me in the middle of the field." References Hjelm, Katharina/ Esther Mufunda/ Grace Nambozi/ Joan Kemp (2003): Preparing nurses to face the pandemic of diabetes mellitus: a literare review. Journal of Advanced Nursing 41 (5), WHO (2011) Diabetes fact sheet. (September 8th 2012) 8