Rakai Community Cohort Study (RCCS)
Yesterday was the first day of our one week in-depth tour of the Rakai Health Sciences Program. Essentially, we started at the beginning of the Project by spending the morning with the Rakai Community Cohort Study (RCCS) team, which was established in 1994/1995. The Study currently enrolls all resident, consenting adults (ages 15-49) who are followed annually with surveys and biological samples for the detection of HIV, STDs, and other infections. It is an open cohort—enrolling new immigrants and new age appropriate residents at each annual survey visit. There are around 12,000 participants under surveillance on an annual basis. The RCCS has provided an important framework within which multiple studies are implemented without much added cost. Through the prospective cohort study design, the Project has conducted everything from large-scale randomized trials to studies of molecular epidemiology. The cohort has also provided a mechanism for evaluating the impact of ARVs on HIV epidemiology and risk behaviors at a population level. In other words, the RCCS is the “mother study” of the RHSP…..
Currently, the RCCS team is conducting annual census evaluations of households in the cohort. The census teams collect comprehensive family and household information that allows subsequent survey teams to appropriately target study participants. Jake and I were escorted into the field to observe census teams in both an “urban” or “town” area and in a rural area. It was pouring outside when we finally located the first team of 8 interviewers moving in a big group under the cover of umbrellas. We were taken to the first home, a structure partially hidden behind a large matoke tree, made of cement with a corrugated metal roof. We were invited inside….I have spent many hours inside homes in the rural areas of Uganda, but this was Jake’s first experience in a typical Ugandan home….It can be quite shocking. It is one thing to speed by homesteads in a car and mentally note the poverty, imagining what it is like for people to live in such conditions, but it is totally different to step through the door and into a domestic world that is so different, so unbelievable, so upsetting…..It was dark inside the home, the sound of the rain on the metal roof making it difficult to hear the interview being conducted with the head of the household, a fifty year old man who had 6 other household members, all under the age of 27. The walls were decorated with great pride with a dirty water-stained calendar from 1999 and a portrait of Museveni. I am not sure why I described the calendar as dirty—the truth is that the entire home is caked in a layer of red dirt, dust, and animal feces despite the presence of a cement floor. The head of the household was very welcoming and made room for us to sit on the two other wooden chairs in the front room. We observed awkwardly, trying not to look around us in disbelief. The reality is that the home that I am describing is actually the home of a family with greater than average resources….cement homes with cement flooring signify a great (and expensive) improvement over traditional mud thatch homes. This particular household head has participated in multiple Project research studies, as evidenced by the informed consents that he carefully pulled out of a plastic bag that he retrieved from a safe place in smaller back room of the home. For some reason, I found this man’s continued participation in the research of the Project fascinating….does he know that he participates in research that has changed the way we approach HIV prevention and treatment across the world…….Immediately following the completion of the household census, the interviewer hands over the paperwork to the editing team, a team of reviewers who sit in a truck in the field, combing through each and every question looking for errors and inconsistencies. It is the first level of quality control in this research process. The census forms are then taken to the data management center at the Project where the data is entered twice by two different data entry employees with random error computer cross checking. It is quite a meticulous and impressive system. Our morning spent with the RCCS, the “mother” research study, was very valuable in terms of understanding the overwhelmingly impressive research machine that is the RHSP. It is like an army of researchers that has been (as far as I can tell) successfully integrated into the communities of the Rakai District. The teams of researchers and trucks just seem to be part of the landscape…..
VTC Department
Today, Jake and I spent several hours with the coordinators of the voluntary testing and counseling department. It was quite informal and both of us found it to be a fascinating conversation. The main objective of the VCT department is to offer psychosocial support to cohort participants. The department provides counseling for circumcision patients, discordant couples, and children with HIV. They also partner with the ARV department to provide follow-up counseling of HIV+ clients in the biweekly community clinics where patients are introduced to ART and treated for OIs. I focused my questions on child counseling…..According to the coordinators, the introduction of ART through the Program created a immense need for counseling around HIV status and treatment among children. Until a child reaches the age of 8, all counseling is directed towards the child’s biological parent or guardian. After age 8, trained counselors begin to assess the child’s understanding of HIV and their own status. The counseling becomes a continuing dialogue between a child and a therapist, focusing on how and when to reveal HIV status and deals with issues of medication adherence. I must admit that I am disappointed in myself for never really thinking about all of the complicated psychosocial issues associated with being an HIV+ child in Uganda during this new era of freely accessible ART. Prior to ART, HIV+ children in Uganda would spend their short lives fighting death one opportunistic infection at a time. It is very different now…..with life extending ARV drugs, these children must learn to process the meaning of their lifelong disease through different developmental and life stages. They must learn to negotiate a very adult world in which there are unspoken expectations and rules about disclosure of HIV status. Most importantly, during adolescence, they must learn to understand their sexuality in the context of their disease. That is one of the many things about HIV that makes it so different than living with another lifelong, life-threatening medical condition—it has a profound effect on sexual intimacy which can effect the way that love is perceived and experienced and that would be especially hard to understand and deal with as an adolescent. For the first time in many years, I talked to the coordinators about the research project I piloted at Rakai way back in college (they were actually really interested). At the time (2002), I was trying to explore the impact of being orphaned by AIDS on the sexual behavior patterns and mental health status of adolescent boys. Although the research itself was primarily a learning exercise (well, an extraordinarily stressful crash-course in international research really), I do think I was asking some important questions that are still relevant today…..In any case, this morning’s meeting brought up a lot of very interesting facets of HIV treatment and care that I have not yet contemplated and I left very impressed by the staff and scope of practice of the counseling department at the Project.
Globe Napper 