Category: Tiffany

Hello again!

I hope everyone’s summer went well. Ours was … honestly… a bit chaotic, but it taught me a lot of patience and “on my feet” adaptation skills! While I was always safe and cautious, we did encounter some challenges with COVID-19 during our Sickle Cell Awareness Survey and Community Needs Assessment in Western Uganda. The national policies on travel were changed a few times, and usually with little notice – which made planning our daily work nothing short of challenging.

– However-

I’m really really proud of the work that we did and am very thankful for the help and support that I had along the way!

We [surprisingly] were able to interview ALL 35 villages in the sub-county. This ended up being a little over 200+ individual household interviews. It was not an easy feat but was extremely important, as we wanted to establish the baseline awareness of sickle cell in the area. So far, we are finding an unexpected spatial distribution of sickle cell awareness, which will be interesting to dig into later.

To estimate the current burden of disease, and service utilization in the nearby municipality we visited the records department of four different hospitals and mapped the five-year trend of in-patient, out-patient, and laboratory visits for sickle cell – a bit of grunt work, digging through a lot of loosely-organized dusty papers, and broken binders, but the recovered information is really going to give us some great insight into the current situation in the area.

Most importantly, we got a good look at the service availability and challenges for families with sickle cell from 19 family interviews, and visits with local and national stakeholders in sickle cell care. We looked more deeply into resource availability by surveying 23 area drug shops and traditional healers.  And identified some gaps in provider knowledge and awareness of sickle cell, areas for improvement, through 51 health provider surveys.

Overall, the last three months have been really busy – but really rewarding – because I know the efforts of that work won’t end here. We expect this Community Needs Assessment will lay the groundwork for a future monthly clinic day dedicated exclusively to sickle cell. A day where individuals in this sub-county can come to test for sickle cell and where those with Sickle Cell Disease or Sickle Cell Trait can receive regular health visits and support within their own community.

– Tiffany

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.

– Tiffany