Things you never think about

After arriving back in Cape Town from Zanzibar, I had one day to pack and unpack and then head off to East London with Johannes, the new DSITS Operations Research Specialist. We spent 3 days working with Nzwaki on another round of data abstraction from the sites for a giant report due to Johnson&Johnson in May. As always, I love the opportunity to get out in the field, experiencing the clinics and meeting with site staff.

We started off the trip by having a meeting with all the Site Coordinators for the 10 sites that were involved in the Innovation Center study that we recently completed. We wanted to share the final study findings with them, as they are obviously the ones most affected by the outcomes and also the ones who put the most effort into making the study a reality. It was fun to be in a room with them all, especially when they were clearly so interested to learn the results. And they are such smart, dynamic women. They really want to use data to improve their services, so it’s exciting to see the DSITS department evolve within m2m and come into a position where the organization is able to focus on self-improvement through data use and identification of weak areas and engaging site staff in these issues. When we started talking about how none of the clients liked the home visit aspect of the study because they were afraid of involuntary disclosure and being associated with HIV, one of the SCs immediately said “Well this is very good because it tells us we need to help our clients more with disclosure,” though that wasn’t part of the study goals at all. It sounds silly to say, but sometimes it’s just not that easy to connect the dots, so it was really fun to watch the Site Coordinators take everything to heart and get excited about new areas to focus on. They really are so passionate about their work.

A couple of other things struck me during the days we were there – things you (or more specifically, I and probably many other westerners) just never think about but that are really important when it comes to developing ways for people to access the best possible care, and not only that, but make strides in getting ahead.

At one point we had to make a trip out to a huge tertiary facility – an extremely large hospital serving lots of people in the East London area. Nzwaki was going to meet us there, so Johannes and I planned to use the GPS navigator, assuming it would definitely have this enormous hospital as one of its landmarks. It didn’t...and we really couldn’t figure out how that could be. We had to just head towards the neighbourhood we knew it was in, and then stop at gas stations along the way to keep asking for directions. Well, this huge facility was in the center of a very large township and primarily served that population alone...which is, I’m sure, why it wasn’t on the GPS machine – no one with enough money to have a GPS would ever possibly need to go to that hospital or stay in that area.

Anyway, it was really interesting talking to the Site Coordinator from there. We were asking her what she liked and didn’t like about the data collection tools used to keep track of clients, and one thing she mentioned was how they didn’t really make it very easy to record information for cases where the “Granny,” as she put it, brings in young kids asking m2m for help. These are of course grandmothers who are now responsible for being the primary care-giver for kids whose mothers have died from the virus. It was just a very big reality check for me to flip through the logbook and see just how many of these cases do show up at that particular clinic. Sometimes, when all the women I interact with in the office or out in the sites are healthy and able to access ART that allows them to live normal lives, it’s easy to forget that for many people, this is still not the reality. And it’s easy to forget just how different service is, depending on where you live. Running a large facility like that in such a resource-poor setting...it’s just so different from all the doctor’s offices I’ve ever been to in South Africa. So hard to believe it’s all the same country sometimes.

Another thing I found really interesting was the cultural traditions I learned about talking to Johannes and Nzwaki and the impact on poverty in the era of HIV. Somehow the topic of African funerals came up, and Johannes (from Sierra Leone) and Nzwaki (Xhosa) explained to me just how big of a deal funerals are to many African cultures. Of course you can’t lump ever African culture together in terms of having one common burial system, but there are many commonalities. Apparently funerals are often week-long events, with feasts each day involving everyone in the community. No one can be turned away from the feasts, no matter who you were in the community and what your relationship to the family was, and the family of the deceased is expected to pay everything. In addition, the family is expected to buy very expensive caskets, etc. for the actual burial. To not spend all that money would be extremely socially unacceptable and make you look very bad in the community. For people who often live day-to-day and who do not earn relatively much money over the course of a year and who have little ability to save, being faced with paying for a funeral on that scale is very problematic. As Nzwaki and Johannes explained, this often means going into debt, which is a terrible situation for people living on those amounts of resources. I had no idea, but apparently all the banks in South Africa cater to this scenario, having special loan programs for funerals. You can imagine the money the banks make off of that! To make matters worse, in the era of HIV/AIDS, the cost of funerals is a very, very real roadblock in allowing families to get ahead. I honestly had just never thought of this issue, but Nzwaki was saying it is quite significant. She also talked about how now there is starting to be a community push for the richer members of society to have very low-key funerals, to set the example that not spending tons of money on burying the dead is not an implication of your class status, inability to do so, or lack of desire to bury the dead respectfully.

I am constantly so amazed at how much I overlook in everyday life here – things that are so relevant to one culture but not at all to another, but that have huge implications in the long run.