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.
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.