m2m updates

Work has been really busy lately (hence why I’m having a hard time finding time to write in the blog), so don’t think I’ve been doing nothing but having fun! Don’t feel too sorry for me though – work has actually been quite “fun” in its own right, as I’m really enjoying the projects I’m working on at the moment.

Immediately after returning from Christmas break, Nzwaki, Monica, and I set to work on preparing to submit abstracts to various conferences regarding our Early Infant Diagnosis Study which has now wrapped up at the Innovation Center in East London. We are submitting abstracts to an annual conference on Perinatal Priorities in South Africa, to be held in March, and also to the International AIDS Conference, to be held in Vienna in July. It’s nice not to be completely removed from the research world while working at m2m. Actually, despite not being in a lab, it has been a very valuable experience for me to take part in such different research based on public health, community, and social issues. The study has been really interesting, and right now I’m managing our database of client information and translating it into trends and findings about the success of Active Client Follow Up in helping encourage mothers to return to clinics to have their babies tested at 6 weeks post birth. I won’t go into too much detail about the study background at the moment, since I’ve described it before.

Beyond the quantitative data analysis I’m doing, I’m also gaining a new appreciation for qualitative data. I helped Monica and Nzwaki design Focus Group Discussion guides, and then Nzwaki conducted focus group discussions with the various m2m study participants (Mentor Mothers, Site Coordinators, and Provincial Managers) to try and better discern things like testing barriers, client attitudes towards being called and visited at home, staff acceptability of ACFU practices, etc.

The barriers to having a child tested are much more complicated than simply not understanding the importance of early diagnosis (FYI the reason it’s so important is that if a child is HIV+, starting medications early on greatly influences their health outcomes), and not at all related to what most people are used to dealing with in the U.S. Some barriers occur on the mothers’ end, ranging from mothers who are too scared to test their babies and not ready to deal with the results, to mothers who have not disclosed to anyone in their family and are afraid to admit to taking their child for testing, to mothers who simply cannot get to the clinic on testing day because of transportation costs or work schedules, etc. There are also a number of clinical barriers, including clinics that only do infant PCR tests on certain days of the week, clinics that have to cancel testing services when the nurse who usually runs the test service is sick or takes extended leave, etc., to clinics that run out of PCR test kits. Additional issues arise over receiving results (I myself was very surprised to see how many records we have indicating people had their babies tested but do not yet have the results). Often clinics are not equipped to run the tests in-house and therefore must ship off blood samples to other labs, and it’s understandably challenging for some mothers to keep checking back at the clinic for their results for weeks on end.

Yes, as you can see, accessing services like infant PCR testing is a complex matter. There are so many things we don’t even think about (“we” referring to a Western-oriented mind, in this case). m2m developed a lot of new measures during this study to try and get women to test their babies, including adding an extra employee at each site responsible for calling clients (and doing home visits at certain sites); having all site staff go through extra training to learn more about the importance of PCR testing and how to emphasize it to clients; creating a new wheel calendar tool that staff can use to easily determine the 6 week post delivery date (when babies are supposed to be tested), since it can be difficult for clients to calculate 6 weeks time on their own; and finally, giving clients an information sheet filled in telling them what day and which clinic they need to go to for testing, based on their address and available services in the area. After all of these additional measures were taken, the focus group discussions indicate that the favorite new tool of the site staff and clients is the simple 8.5x11 card with a picture on one side showing a baby being pricked in the heel for a blood sample and a couple of important talking points on the back for mentor mothers to cover when discussing PCR testing with their clients. The mentor mothers said having a printed card with a picture not only made them seem more professional to mothers, but also mothers were very grateful to see how the PCR testing worked. Simply seeing a picture of a baby pricked on the heel and thus knowing what to expect turned out to be very helpful to mothers – apparently a lot of mothers who take their babies for regular immunizations at six weeks don’t take them for PCR testing despite being at the clinic already because they don’t like the idea of their babies being poked, prodded, and made to cry and do not know anything about what is going to occur during collection of the test sample. So in the end, sometimes it’s the simplest of things that matter the most! It’s the perfect example of how easy it is for those of us who grew up in the Western world can have a very hard time predicting how to effectively reach a population coming from a completely different culture. It’s obviously not that any one group is stupid or wrong, we all just have such different perspectives, learned behaviors, and expectations.

(I see constant reminders of this kind of thing all of the time. Walking into our office building every morning, it’s not uncommon to see someone waiting for the elevator who has not yet pressed the button. Of course when you think about it, it might not be intuitive for everyone in the world to press a button to make an elevator come get you. Once I was at the gym and the woman on the elliptical next to me said hers was broken, and since I had just finished a 20 min. period on mine (we’re only allowed 20 min at a time on machines at our overcrowded gym – don’t get me started!), she asked if she could use mine. I obliged and decided to try hers, since it didn’t look broken and I didn’t want to stop working out yet. Hers worked fine, but when I looked over at the machine I had been using, once again, she was completely struggling and unable to move the legs or arms on her machine at all. This didn’t surprise me because she had the resistance set to 100%, as made clear by the lit up dots on the screen that went all the way to the max highest point. Of course she didn’t realize this (and unfortunately I didn’t have the time to tell her before she got off in frustration and walked away), and once again, if you think about it, if you have never been to a gym before, you might not know much about how exercise machines work. It certainly is interesting to be reminded of how much your culture influences you – and how long those influences have been shaping your mind. And this is also one of the reasons why I’m gaining so much being here in Cape Town and working for an NGO, learning to think outside the laboratory box I was trained in and the culture that shaped me.)

Another interesting aspect that came out of the focus groups was how important it was and how grateful clients were for m2m’s discreetness during all contacts outside of the clinic. For example, mentor mothers don’t disclose who is calling unless the client themselves answers the phone – a lot of families may share phones and it would be disastrous to tell a partner whom a client has not yet disclosed to that an HIV-related organization was calling. That is partly why the home visit testing aspect of this study does not seem to be successful – clients aren’t keen to have mentor mothers show up at their houses, and in turn mentor mothers really don’t feel comfortable going out and doing home visits in neighborhoods they aren’t familiar with. On the positive side, the phone call interventions seemed to be a really effective way to reach clients. Over 90% of clients enrolled had access to a cell phone, and site staff talked about how clients often didn’t want a sheet of paper telling them when and where to get their babies tested (sometimes related to the fact they didn’t want evidence around the house showing they were HIV+) – they much preferred to just type the date into their cell phones and set a reminder. So you see how technological Africa is getting in its own respects – cell phones certainly have changed things around here!

Another really encouraging note coming out of the focus groups was how clinics in which the study was conducted began changing their services. As m2m emphasized PCR testing to their clients and women subsequently began to request the test more and be less fearful about the process, then some clinic sisters (sister = nurse here) began to notice m2m’s efforts and worked to not just accommodate the study in their facilities but make extra effort to provide more testing services and increase the testing rates facility-wide (beyond m2m clients). It’s really inspiring to hear about m2m not only changing the attitudes of clients, but the nurses and facility staff as well.

Unfortunately, the Focus Group Discussions were conducted in Xhosa, so I couldn’t actually take part in that side of things, but it’s been really enlightening to see the data coming out of that type of research. It has certainly served as a good reminder that it’s all too easy to overlook important points from the planning/policy perspective – getting on the ground and figuring out the realities of the situation is crucial. I think that theme applies to NGOs and aid work on a much larger scale, in terms of looking at how foreign-run institutions effectively deliver services to a local population with such different perspectives and needs.

Anyway, we’re still in the process of analyzing all the data and putting together a report on the baby study, but there are certainly a lot of interesting observations that have been made and I’m very grateful for the opportunity to participate in the project.

Aside from working hard to write up this Early Infant Diagnosis Study report, one of the other exciting work project we have going on in DSITS is an evaluation of our Malawi country program. This is going to involve Monica, Ilan, and me traveling to Malawi for 12 days starting this weekend. We will be working with the in-country team, traveling around to sites to collect logbook data and have focus group discussions with m2m staff there. I’m really excited to learn more about Malawian culture (of which I know very, very little, I’m afraid) and take part in a country evaluation, and I’m sure I’ll have more to report on that soon enough!