I began part II of my research plan this week. Part I involved interviewing 4th and 5th year medical students at Makerere University to understand the ethical challenges they’ve faced during their clinical rotations at Mulago National Referral Hospital. Part II involved observing wards at Mulago to better understand the context for the stories I had heard and to observe any other ethical issues that students did not address. I decided to focus on pediatrics wards because of the many stories I had already heard about ethical situations involving informed consent, rationing of medicine, and patient autonomy.
So, I addressed up (tie included) and went to a pediatric ward that I had been given permission to observe. I was required to wear a white coat (as all doctors do) on the ward while observing despite the fact that I was only there to observe, not treat. This white coat turned out to be more trouble than I had ever anticipated. I still don’t know whether it was because I was wearing the coat, am a mzungu (white person), or because of severe under-staffing that I was asked to help diagnose and treat patients. It’s probably a combination of all three reasons. From the moment I was introduced to the person I was shadowing I was perceived as having medical skills that I in fact do not. It took 5 minutes and many different attempts before I successfully explained to my guide that I was not qualified to help and that I really only wanted to observe despite the fact that she would allow me, if I had agreed, to help diagnose patients by listening to the heart and lungs, taking medical histories, etc. After talking with many interns and master’s students, it is evident that the idea of “just observing” seems silly and unproductive to them. Why would I not want to learn how to treat patients? Why could I not help them? Why was I there if all I wanted to do was watch? Why should they take the time to talk with me if I couldn’t provide some help in return? These were all the questions that I was directly and indirectly asked throughout the day.
As someone who is interested in ethics, I felt strongly that it would be unethical to try to treat patients without proper training despite the fact that it would have been much easier to simply take basic diagnostics to appease the staff. At the same time, I had to question whether my presence was causing an undo burden on the staff and on the patients. I kept asking myself, “Am I taking away from time the staff could be using to treat patients? Am I indirectly harming the patients?” This was particularly hard when I went to the acute pediatrics ward as I felt even more in the way and less prepared to handle what I saw.
Location: Kampala, Uganda
Showing posts with label project. Show all posts
Showing posts with label project. Show all posts
Thursday, May 27, 2010
Thursday, May 20, 2010
Week 7- Waiting... for Interviews
I sat waiting in a cafeteria at a medical student dormitory for an hour before calling it a day. Every time a door would open I would turn around to look. I would sigh, as it was a worker coming in or leaving the kitchen. I had laid out all of my materials- notebook, audio recorder, consent forms, pens. I had been waiting for interview participants for my research project. I had been told that a group of five 5th-year medical students would be gathered when I got there so we could have a focus group session. I got to the medical school early and waited for my contact to pick me up. He was 5 minutes late but I wasn’t concerned because nothing here starts on time. On our walk up to the dorm he told me that he hadn’t actually spoken to any students but he was sure I could gather enough people at the dorm. Finals were starting the following week so I was doubtful that I could persuade anyone. As we walked up to the entrance of the dorm, my contact introduced me to several men that were there. Half way through my “hello, my name is” speech, my contact said he thought I would be okay so he was leaving. Feeling a bit nervous, I went on with my speech, asking if anyone would be interested in being interviewed.
No one volunteered. One guy asked me where my research office was. I explained that I was a student so I was interviewing participants in a variety of locations based on their convenience. Apparently that wasn’t a good answer. The same guy told me I should get my contact to organize people for me (I thought I had?) and come back. I told them I’d sit in the cafeteria adjacent to us if anyone would be interested in being interviewed. I thought, “So much for the focus group idea. At this point, I just need data whether in a focus group or individual interviews.” So, I sat and waited. One student who was in the group I spoke to came in to be interviewed. I got the feeling that he agreed out of pity for me. After our short interview I waited around. I texted my contact that no one else had showed up. He assured me again that people would once dinner started. Once dinner started? I felt like an ambulance chaser on the hunt for interview participants. However, I waited for another hour thinking dinner had to be soon. It was already 6pm by this point. Unfortunately, no one else came. Dinner must be served late. So, after an hour of waiting, I packed it in.
Interviewing participants has been incredibly difficult given students’ time constraints and the unreliability of people to show up. In the United States I live my life by a calendar. I try to be no less than 15 minutes early to everything and have my life color-coded by type of activity: work, personal, school, etc. Here in Uganda, things don’t work this way. Unpredicted situations always seem to arise and estimated travel times are never a reliable estimate. Plans are never confirmed more than 12 hours in advance because situations are constantly changing. This had made the process of gathering interviews difficult given our own limited time schedules. Despite being here 7 weeks now, I’ve still yet to adjust and plan for the delays.
Location: Kampala, Uganda
No one volunteered. One guy asked me where my research office was. I explained that I was a student so I was interviewing participants in a variety of locations based on their convenience. Apparently that wasn’t a good answer. The same guy told me I should get my contact to organize people for me (I thought I had?) and come back. I told them I’d sit in the cafeteria adjacent to us if anyone would be interested in being interviewed. I thought, “So much for the focus group idea. At this point, I just need data whether in a focus group or individual interviews.” So, I sat and waited. One student who was in the group I spoke to came in to be interviewed. I got the feeling that he agreed out of pity for me. After our short interview I waited around. I texted my contact that no one else had showed up. He assured me again that people would once dinner started. Once dinner started? I felt like an ambulance chaser on the hunt for interview participants. However, I waited for another hour thinking dinner had to be soon. It was already 6pm by this point. Unfortunately, no one else came. Dinner must be served late. So, after an hour of waiting, I packed it in.
Interviewing participants has been incredibly difficult given students’ time constraints and the unreliability of people to show up. In the United States I live my life by a calendar. I try to be no less than 15 minutes early to everything and have my life color-coded by type of activity: work, personal, school, etc. Here in Uganda, things don’t work this way. Unpredicted situations always seem to arise and estimated travel times are never a reliable estimate. Plans are never confirmed more than 12 hours in advance because situations are constantly changing. This had made the process of gathering interviews difficult given our own limited time schedules. Despite being here 7 weeks now, I’ve still yet to adjust and plan for the delays.
Location: Kampala, Uganda
Thursday, April 29, 2010
Week 4 - Good things come to those who wait
This week I had what I would call my first real run-in with "Uganda Time." I arranged to accompany a team from Butabika National Mental Referral Hospital on an outreach activity. I knew that I wouldn't be able to make it to Butabika in enough time to leave with the group to the outreach location, so I figured that I would meet them at the site. Centurio was gracious enough to accompany me so that I didn't get lost. We made it all the way to Old Park (a crazy-busy parking lot full of mutatus going all over Kampala) before figuring out that it would be easier for me to get picked up by the team half-way to the site.
So Centurio figured out how to get me to Ntinda, where the group from Butabika would meet me, and left me there to wait for their arrival. At this point, I called my contact from the outreach program, and it sounded like she said they were waiting for a driver. Now Butabika is on the far eastern side of Kampala, so I had a feeling that I would be waiting for awhile. Sure enough I stood in the sun in Ntinda for about an hour and a half before the Butabika truck pulled up and I jumped in the front seat. (They picked me up about two hours after the time that the outreach event was originally planned to begin.)
The outreach experience was definitely worth the wait, though. I went with the outreach director, two psychiatric nurses, and a psychiatric clinical officer to a health center in the northern part of Kampala. The health center was located within a school complex that was associated with an orphanage. When we pulled up, there was a small room full of people waiting to meet with the clinical officer. While the outreach director went to resettle a rehabilitated patient in his home, I sat in as the clinical officer interviewed patients briefly and updated their prescriptions.
Once again, I was alarmed by the amount of access I had to the patients' personal information. The clinical officer conducted the meetings in Luganda, but often he turned to me and explained what was happening in English. Through his comments and those of the health center nurse, I learned that many of the patients who came to the outreach event suffered from epilepsy.
Before coming to Uganda, I knew that epilepsy was often treated as psychiatric illness, even though it is treated more strictly as a neurological disorder in the United States. Thus, it struck me as odd that epilepsy would be categorized as a psychiatric issue. I learned, however, that epilepsy in Uganda affects many children, and psychiatric complications often accompany seizures. Because of these psychiatric complications, epilepsy is treated with other mental illnesses. There was also a mention of the tie between epilepsy and malaria, which is something I would like to investigate a little bit more.
The story of a young girl attending the outreach event for the first time provided the most striking example of psychiatric complications related to epilepsy. The health center nurse and adoptive mother of this child described how this girl would hallucinate during her epileptic episodes. As a result, the child would try to run away, jump from high places, and become violent. The mother thought that her daughter was possessed or cursed. When the girl was not having an episode, she was very calm and well-mannered. Luckily, someone convinced the mother to bring her child to an outreach event, and the young girl received medication for her condition for the very first time during my visit.
Overall, I learned a great deal about different conditions that affect people in Uganda and the way that illnesses are categorized differently depending on the manifestations of symptoms. As a result of my visit, I am thinking about working with the outreach team from Butabika or another group on a presentation that would raise awareness about epilepsy. Without an understanding of epilepsy, patients and their caregivers may be confused and not seek medical support as early as they could. Furthermore, stigma is often attached to anyone who suffers from a mental illness, and this need not be the case with sensitization.
I'm sure that Butabika and the health center do a great deal to educate the public about epilepsy and other conditions. Because we were running late on the day that I accompanied the outreach team, I was not able to view the presentation that the group normally gives in the community before personally meeting with patients. I look forward to learning more about the outreach program and epilepsy in Uganda in the coming weeks. My experience with the outreach team was certainly worth the two-hour wait in the sun.
Location: Kampala, Uganda
So Centurio figured out how to get me to Ntinda, where the group from Butabika would meet me, and left me there to wait for their arrival. At this point, I called my contact from the outreach program, and it sounded like she said they were waiting for a driver. Now Butabika is on the far eastern side of Kampala, so I had a feeling that I would be waiting for awhile. Sure enough I stood in the sun in Ntinda for about an hour and a half before the Butabika truck pulled up and I jumped in the front seat. (They picked me up about two hours after the time that the outreach event was originally planned to begin.)
The outreach experience was definitely worth the wait, though. I went with the outreach director, two psychiatric nurses, and a psychiatric clinical officer to a health center in the northern part of Kampala. The health center was located within a school complex that was associated with an orphanage. When we pulled up, there was a small room full of people waiting to meet with the clinical officer. While the outreach director went to resettle a rehabilitated patient in his home, I sat in as the clinical officer interviewed patients briefly and updated their prescriptions.
Once again, I was alarmed by the amount of access I had to the patients' personal information. The clinical officer conducted the meetings in Luganda, but often he turned to me and explained what was happening in English. Through his comments and those of the health center nurse, I learned that many of the patients who came to the outreach event suffered from epilepsy.
Before coming to Uganda, I knew that epilepsy was often treated as psychiatric illness, even though it is treated more strictly as a neurological disorder in the United States. Thus, it struck me as odd that epilepsy would be categorized as a psychiatric issue. I learned, however, that epilepsy in Uganda affects many children, and psychiatric complications often accompany seizures. Because of these psychiatric complications, epilepsy is treated with other mental illnesses. There was also a mention of the tie between epilepsy and malaria, which is something I would like to investigate a little bit more.
The story of a young girl attending the outreach event for the first time provided the most striking example of psychiatric complications related to epilepsy. The health center nurse and adoptive mother of this child described how this girl would hallucinate during her epileptic episodes. As a result, the child would try to run away, jump from high places, and become violent. The mother thought that her daughter was possessed or cursed. When the girl was not having an episode, she was very calm and well-mannered. Luckily, someone convinced the mother to bring her child to an outreach event, and the young girl received medication for her condition for the very first time during my visit.
Overall, I learned a great deal about different conditions that affect people in Uganda and the way that illnesses are categorized differently depending on the manifestations of symptoms. As a result of my visit, I am thinking about working with the outreach team from Butabika or another group on a presentation that would raise awareness about epilepsy. Without an understanding of epilepsy, patients and their caregivers may be confused and not seek medical support as early as they could. Furthermore, stigma is often attached to anyone who suffers from a mental illness, and this need not be the case with sensitization.
I'm sure that Butabika and the health center do a great deal to educate the public about epilepsy and other conditions. Because we were running late on the day that I accompanied the outreach team, I was not able to view the presentation that the group normally gives in the community before personally meeting with patients. I look forward to learning more about the outreach program and epilepsy in Uganda in the coming weeks. My experience with the outreach team was certainly worth the two-hour wait in the sun.
Location: Kampala, Uganda
Thursday, April 22, 2010
Week 3- project update
Location: Kampala
In the quarter preceding our departure to Uganda, we each had to develop an idea for some sort of independent project that we would carry out during our quarter here. This being a program with a focus on public health and performance, I decided to do a project that would explore this theme.
Uganda has been one of the most successful African countries in combating HIV/AIDS, and much of this success can be attributed the effectiveness of performance – music, dance, and drama – in sensitizing the public on important HIV/AIDS related health issues. I decided to use this as a premise for my project, and put together a Hip Hop album addressing social issues, focusing on the experiences of HIV/AIDS in Uganda. My plan was to collect stories of HIV/AIDS related experiences throughout Uganda, in the slums, clinics, on the streets, and portray these stories through a Hip Hop album, in order to shed light on the issues dealt with in the album.
Of course, I was initially very uncertain as to how this project would unfold once I reached Uganda. Much of the success depended on help from people here, because I was depending on them to introduce me to artists, producers, recording studios, instrumentalists, and so on. I was nervous, because if I did not receive help, it would be impossible for me to network with so many people during such a short period of time.
I am happy to say that my project has been very successful thus far, and though I do not want to prematurely say that it is going to be a success, I am optimistic that it will. Almost immediately upon my arrival in Kampala, I met with two people who my contacts in the States put me in touch with, and they have been so helpful in introducing me to people and showing me around Kampala, and we have also become good friends. With their help, my project has taken off faster than I ever imagined it would, and I have met so many interesting people, made many friends, and become comfortable and familiar with the city. I have even been able to meet some of the more famous artists in Uganda through the people I have met.
I am excited to continue working on my project, meeting new people, and familiarizing myself with the city. There is still so much to do (on top of my classes), but I am optimistic that this project will turn out well.
In the quarter preceding our departure to Uganda, we each had to develop an idea for some sort of independent project that we would carry out during our quarter here. This being a program with a focus on public health and performance, I decided to do a project that would explore this theme.
Uganda has been one of the most successful African countries in combating HIV/AIDS, and much of this success can be attributed the effectiveness of performance – music, dance, and drama – in sensitizing the public on important HIV/AIDS related health issues. I decided to use this as a premise for my project, and put together a Hip Hop album addressing social issues, focusing on the experiences of HIV/AIDS in Uganda. My plan was to collect stories of HIV/AIDS related experiences throughout Uganda, in the slums, clinics, on the streets, and portray these stories through a Hip Hop album, in order to shed light on the issues dealt with in the album.
Of course, I was initially very uncertain as to how this project would unfold once I reached Uganda. Much of the success depended on help from people here, because I was depending on them to introduce me to artists, producers, recording studios, instrumentalists, and so on. I was nervous, because if I did not receive help, it would be impossible for me to network with so many people during such a short period of time.
I am happy to say that my project has been very successful thus far, and though I do not want to prematurely say that it is going to be a success, I am optimistic that it will. Almost immediately upon my arrival in Kampala, I met with two people who my contacts in the States put me in touch with, and they have been so helpful in introducing me to people and showing me around Kampala, and we have also become good friends. With their help, my project has taken off faster than I ever imagined it would, and I have met so many interesting people, made many friends, and become comfortable and familiar with the city. I have even been able to meet some of the more famous artists in Uganda through the people I have met.
I am excited to continue working on my project, meeting new people, and familiarizing myself with the city. There is still so much to do (on top of my classes), but I am optimistic that this project will turn out well.
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