A research pilot study: stories, sickness, sputum samples and a stampede

After discussing with Dr. Chris Whalen and Dr. Juliet Ssekandi, my mentors, a possible research study, I wrote a concept outline for a pilot study to see if the study would be tenable as a project for my remaining time here. For about two and a half weeks, Hassard (health home visitor for the parent study) and I interviewed previous participants in that study for my follow-up questionnaire regarding chronic cough. (If you are more interested in the research project itself, please email me. Very basically it is follow-up study looking at chronic cough and tuberculosis that may have been missed or not evident during the initial study.) Needless to say, my survey was the simplest part of the whole pilot study process.

Most time was spent trying to relocate the participants while navigating the congested parts of town to which we traveled. As a result of the pilot, I had the unique opportunity to travel to zones and parishes in Kampala that foreigners do not visit unless they are doing community work of some type.

Rather than talk about my research as such in this post, for now I am going to tell some of the stories associated with the research. The first participant we saw worked at the edge of Busega parish in the Rubaga division part of Kampala. A Rwandan refugee from many years ago, we had only her mobile phone number for contact (the case for all of the participants). We found her at the home of a woman for whom she cleans. We interviewed her and then collected sputum for analysis after finding out she continued to have chronic cough. We forgot to give her the second vial for a sputum for the subsequent morning and did not realize it until after the 10 minute walk back to the vehicle. We walked back to the project vehicle to get another vial, but by the time we walked through the swamp’s clearings to get to the house, she had left to try and find more work. You see, the woman of the house said that the participant had just left in order to leave the city to find more work to support her and her children. Vial not delivered. Transient, struggling participant ailing. I shall come back to her full circle.

Bars are great places to find certain participants, especially men. Bars in the communities are not what one would picture in the U.S. They are wooden shacks with benches and do not have the overwhelming feeling a crowded bar in Chicago can have. Hassard and I met with inebriated men and women in them. One of the previous participants interviewed for my follow-up study ended up having tuberculosis. He had refused sputum collection a few months before when he was interviewed for the initial study but accepted this time.

The men were kind to me and quite the jokesters. One woman in one of the bars had declined participation in the parent study months ago but wanted inclusion now since her husband had died since then. She realized that her health might have been impacted – he died from tuberculosis, possibly co-infected with HIV. That day, thankfully, Joyce, another health home visitor accompanied Hassard and me. They had a woman’s heart-to-heart. The thing is that with one person sitting there with Tb in such close quarters, they were all vulnerable, not to mention the possible effects of alcohol on the immune system that may increase susceptibility to Tb.

Thankfully, the gentleman came in for Tb treatment. The next hurdle for him is that of medication adherence. I am worried about his ability to adhere to the medication schedule for his Tb given his use of alcohol. It is difficult enough for a sober person with an organized, stable life to adhere to such a regimen! It would take the combination of a good support system, personal desire, and structural support for him to treat his illness.

At another bar in a different zone, we came across a man not in our study but who had been known to the home health visitors. (He was enrolled in another study of the Tb Research Unit. He was not improving after having been on 2 months treatment. I think a fear of multi-drug resistant Tb jumped into all our minds, and when we went back to Mulago hospital we found his pharmacist to determine in which study he was enrolled so we could let the appropriate person know. As we left visiting this man in the Nalukolongo bar, another man came out. He looked me in the eyes and said, “we’re sick, too. We need care. Why can’t you give us care?” Of course, he was right. Again, this is another situation where the research and clinical domains of the medical field collide. I told him I understood that he needed care and where he could go. In a way, it was the politically-correct, ethically defensible health care answer. But a lot of people in these infrastructure-poor communities need more active access to care. I knew even before I said it that my answer was grossly insufficient. But I needed to say something. He smiled, stopped smiling, and then watched me even until our project vehicle left his view. Whether I created it or whether it was imparted on me, I felt as if a global challenge I keep feeling over the years hit me through the voice of this one man.

In another part of Busega parish, Kigwanya zone, we interviewed for follow-up a Rwandan man (refugee from the 1994 genocide) who was living HIV. He spoke French, English, Kinyarwanda, and some Luganda. Hassard conducted the interview in English, a rare occurrence. This gentleman is sero-discordant with his wife, meaning he is HIV+ and she is HIV-. There are a number of interesting issues biologically and socially with discordant couples, beyond the scope of this post. Suffice it say, they use condoms to protect themselves and he takes his anti-retroviral medications on schedule, thus decreasing his chance of passing the virus to her.

His neighbors started laughing and yelling in Lugada to Hassard while we were leaving. They were done having children and needed condoms to use with their husbands. According the UN World Population Prospects Report of 2006, Uganda ranks 8th in the world for population growth with a rate of 3.24% – meaning the country would double its population in 21.6 years. Uganda’s current population is 30.9 million (2007), up from 24.4 million in 2002.

Fertility is such an important cultural value here, as it is in so many places. Uganda has numerous expensive fertility clinics, here in a country with thousands of orphans and an upwards spiraling population. There are fertility planning campaign billboards around the city and countryside but such campaigns are only so effective. One inn owner here feels that the president likes the increased growth rate and expansion of cities that such a growth rate produces. His subsequent analysis delves into some interesting theories I’ll spare here. Needless to say as I finish this tangential paragraph, we came back during another visit with condoms for the women and their husbands.

Hassard said I should take pictures of the places we were going to show people back at home how adventurous I am for going in these parts of town. It’s not adventurous. And I do not and have not in other similar settings feel comfortable taking pictures unless I have a really compelling and personal story to tell. The places we go to should not be allowed to have the infrastructure they have (or lack really). But there was an adventure for sure in Nalukolongo. And it involved steer and cattle. And I definitely wished I had a camera that day.

We were talking to some funny women in hopes of locating a former participant. (We ended up not being able to go to her because a cess pool-type flood washed the path out.) The women offered me a girlfriend in the community after a disturbing Q&A session on HIV. I politely declined. We were in an alley this whole time, no more than the width of 2.5x my body width. All of a sudden a long-horn steer peeked its head around the corner.

The women started running into feeder alleys to this alley. I laughed. It’s just a steer. Then I saw a second. The women started yelling and Hassard already around the next alley corner said calmly that I should move. Then a woman yelled, “Mzungu, run!” The last time I heard that exclamation police aimed tear gas canisters at our section of the stadium. I rounded the next available alley corner and moments after, the steer stampeded down the alley. And about a dozen of them. Any of us could have been gored. The women yelled at the herder right behind them. Apparently, children have been injured badly when these herders do not watch their cattle close enough. I learned my lesson. When a Ugandan says, “Mzungu, run!” you just listen. I will have it down by the third time I hear that line.

People who are poor are transient and hard to locate. People who are poor and sick may even be harder to locate. Some women participants with HIV left town. It could have been stigma or a number of other things. One HIV negative woman that we had located by phone and location ran away moments before Hassard, the community guide, and me had arrived. Apparently her neighbor, a HIV-positive woman, told her we were coming back to do more tests. The community guide said the HIV-positive woman told a story that we lied and the participant was really HIV+ and that we were not going to tell her and instead do some more tests or delay telling her a HIV diagnosis. The participant would not answer our subsequent calls.

Here’s another somewhat related tangent. Poorly done research sensitization in these zones can be a huge hindrance for our research. In one zone, Wakaligga B, apparently previously researchers did interviews and tests but never returned with results or explanations. This created mistrust for our home health visitors in our study, which I believe is well-explained, transparent, and comprehensive for participant concerns. Myths and bad experiences set up what we experienced with the woman who ran from us.

To move on to a different domain, I had another research-clinical divide experience in Kigwanya. As we were searching for a participant for the follow-up survey, a wife approached us about her husband (both NOT participants in our research study). We went to their delapidated mud home and he came to the doorway with swollen eyes and an extremely suppurative exudative leakage from a swollen, erythematous right eye. (=pus) His left eye was crusty and also shut. The right eye and orbital facial area looked absolutely AWFUL. I had my Washington Manual of Internal Medicine with me randomly on this day but found nothing on orbital or periorbital cellulitis. My concern was about blindness and this infection going throughout his body. Already he was febrile, photophobic, and with headache. They could not go to the hospital until they received money from a relative the next day. Well, I wanted to give money on the spot. It was ridiculous that he had not been to a doctor yet. Hassard really emphasized to me why I should not give money, all for sensible reasons. Everyone around watched quietly how Hassard and me were handling the situation. I was clearly upset but we spoke in low voices.

I regret not giving the family money, although I understand the issues it could have created in the community. The next day when we came back here to continue interviewing other participants, the husband and wife had left for the hospital. I do not know the man’s fate. Role-playing and compartmentalizing in medicine does not come without its costs. Sure, had I not been there at all there would have been no burden of knowledge of this and other situations where a person can do something to address a particular injustice or illness. But I was there, and in the amoral march of time when someone’s life is in the balance, time does not care about good intentions or deliberation about how to handle a situation.

As I wrap this point up, I come back to the first participant. Driving around the city to find people, like one man in a truck yard where I was then offered to buy a truckload of sand or a lumber yard where men swarmed around us thinking I would buy something, I saw people at work, home, and in bars. I saw aspects of everyday life in a new way. We found the Rwandan woman sweeping a newly constructed road. Certainly she was not making enough money for her children and her from this, miles from her other place of employment. And she looked and felt very sick. The second sputum sample was now an after thought and 2 weeks since collecting her first sample, she did not have a chronic cough anymore anyhow to necessitate it according to protocol.  We drove her to a clinic, the last action on the last day of our pilot. It was the right thing to do.

Now I am writing up the pilot for inclusion into the parent study. It will be one of my projects for the remainder of the year after it gets the necessary approval from the regulatory bodies. What I like about it beyond its scientific and hopefully clinical/public health value is where it takes me. To the community. My little Luganda language skill gets me far with people as does playing with their children when Hassard is interviewing. I will continue to blog more stories that touch me along the way.

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One Response to “A research pilot study: stories, sickness, sputum samples and a stampede”

  1. How to Get Six Pack Fast Says:

    My fellow on Facebook shared this link and I’m not dissapointed that I came here.

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