For my summer practicum, I am working at PHEAL-ED, a nonprofit research collaborative between UNC and Mbarara University of Science and Technology (MUST) based in Western Uganda. The collaborative is on the site of a government funded health center (think of something between an overnight clinic and a full hospital).
In 2018, PHEAL-ED received 200 Sickle Cell rapid testing kits as a donation from Biomedomics, in Durham, North Carolina. While the individuals who received the tests were not gathered from a statistically random sample, the results of the testing showed a significantly high proportion of individuals with Sickle Cell Disease (SCD) or Sickle Cell Trait (SCT), in some cases 2-3 times higher than has been found in the surrounding region. So, the government health center and PHEAL-ED began thinking about the possibility of starting a dedicated Sickle Cell Clinic, where individuals with SCD or SCT can come and receive treatment, counseling, and education on the disease.
To assess the need for such a clinic and the feasibility of providing those services, PHEAL-ED needed some background information on the situation in Bugoye subcounty (the community this health center serves). My job is to assess the community and provider awareness of SCD and the current services available to those with SCD (clinics, drug shops, traditional healers, etc.). Then using this information, propose what is needed to conduct a monthly Sickle Cell Clinic and the community’s receptiveness to the service / likelihood of service utilization.
So far, my work has been based around assessing SCD awareness through household surveys in the 35 villages of the subcounty. As of this week we have surveyed 21 of the 35 villages. We have also visited 3 healthcare facilities in the subcounty to provider awareness of SCD, and then 5 healthcare facilities in the nearest large town to collect data from each of their Records Departments on the number of SCD cases each facility has received in the Inpatient, Outpatient, or Laboratory Departments.
The practicum challenges so far are mainly centered around the location. This area is right on the equator, and the strength of the sun here can sometimes be unbearable. Additionally, this subcounty includes portions of the Rwenzori Mountain Range and the valleys between the mountains. So much of my day in this survey portion of the project has been hiking up and down the mountains to reach each village. While I don’t know the main local language, this community also speaks and understands Rutooro, the language used just north of our location. Being able to communicate with the community as I travel and survey villages has been an enormous aid in the efforts of the project. Additionally, PHEAL-ED has graciously hired a research assistant for my practicum project to further aid me in more accurate translations and the establishment of community trust.
What I am most excited about is pulling all the information together and getting to present a case for a full Sickle Cell Clinic (or referral to other nearby SCD service, if one is found). We’ve already discovered dozens of children with SCD and the community is has expressed such a demand for this clinic. Since the project began, the word has spread like wildfire, and every evening when I return to the hospital compound (where my house is), they tell me that even more people have come, traversing the long distance to reach the hospital and inquire about this SCD Clinic. The community understands the dangers of SCD, its prevalence in their district, and are desperate for solution.
So I’m going to keep hiking and gathering data, doing whatever I can to finish this first step towards their solution.