Reports from Swaziland

Wednesday night, I arrived home in one piece after four exhausting flights from Matsapha. I had the opportunity to watch the women’s world cup final match with my family yesterday afternoon, where a grieving Japanese team beat the US to win their first ever world cup title. Though I have not had a chance to really follow the women’s world cup from Swaziland, I read about both teams to get a better picture of the matchup. It seems that Japan was really not a spectacular team, having lost to this same US twice before. They came in to the match the underdogs, yet in the wake of their nation’s troubles, they rallied to win a game that has become a beacon of hope to Japan.

Watching the match, I could not help but think of the kids in Swaziland where, even a year after the world cup, kids (and adults) still wore soccer jerseys and every once in a while, played vuvuzelas which we could hear across town.

Working at a pediatric AIDS clinic, I saw many children living through horrible conditions over which they had no control. While in country, I wondered how they could come to teen club and smile despite being handed an unfair shot at life. They did not show any outward bitterness, even though I knew many of them had a difficult time coping with the fact that they had HIV in a society where such people are regarded as second-class citizens, or even cursed. With so few opportunities afforded them, they still had their dreams and their faith. One of the boys I met wanted to be a pilot; another, a chef; and yet another, a teacher. I realized it was the same inner strength and the spirit that I watched in the teams today that was within these kids that kept them going.

I am so thankful for having had this opportunity to go meet these kids and to show them a little of God’s love in whatever small way I could. Amidst the economic crisis in Swaziland, I hope that the projects we worked on will be able to improve the quality of life for at least a few of these children and families even now that we are no longer there.

Thank you for following my blog. I hope you have been able to experience Swaziland with me through it.

Mantanga Falls

Having finished our last full week in Swaziland, we presented our work before the Baylor Clinic staff during the Friday Healthtalk. We explained that the COE was going to start using the dosing clips alongside the CHAI sponsored clinics and taught the staff how to insert and remove clips from the syringe. We will be working with the Baylor doctors this week to develop an ordering and tracking system for clip and syringe distribution in the clinic. Hopefully, the clinic will soon procure syringes so that clip distribution can begin. We will also try to determine what should be done with the extra Nevirapine and Kaletra syringes that come with the medications and will need to be removed before the medication is given to the patient with a syringe and dosing clip.

We will also be piloting the liquid medication dipsticks this week. During the presentation, I had one of the expert clients in charge of performing adherence come up and demonstrate how to use the stick and reading card, which she did with no problem. Hopefully, this will make her and the other expert clients more receptive to using them in clinic.

The extended charts are ready to go in case we get an appointment with the MoH. If not, we are hoping to submit them to the SNAP materials coordinator for further submission after we leave. Once we finish creating job aids for them, our projects will ALL have reached some level of completion!

Yesterday, we had the opportunity to see some cave paintings that were 4,000 years old – certainly the oldest paintings I have ever seen. The tour guide was a girl about my age who lived in the hills where the paintings were. She led us down a ridiculously steep path covered in loose rock in flip-flops! After explaining the paintings to us, she started asking us questions about ourselves. In turn, we wanted to know a bit about her. She was the first person I had ever met from a polygamous family: her dad had five wives. We found out that she had applied to go to the university and wanted to become a teacher. It was a pleasant surprise to hear that someone from such an outlying chiefdom even had the opportunity available to her. I really hope she is able to fulfill her dream.

Here is one of the paintings that shows something rare to find painted – a wildebeest:

While the past few weeks have consisted mainly of presenting our work before countless organizations, we had quite a change of pace yesterday. We finally had the chance to go out to some of the more rural ART (antiretroviral therapy) clinics and see how things are done there. On our way out to the sites, we came to a halt on one of the rural roads where three little piglets were following their mother across the road!

I spent my time yesterday at Mankayane Government Hospital with a representative from ICAP. We were able to train about six expert clients on how to use the tablet adherence charts that we have been working on during our time here. At the end of the day (which happens around lunch time), I asked for feedback on the charts and was surprised to see how receptive the expert clients were to using them. They did not seem to feel that the charts were too complicated and they wanted to have some made for 60-day and 90-day visits as well.

I have to admit that while we were working on the charts from the Baylor clinic, I was a bit skeptical about how much of a difference they would actually make on calculating adherence in rural facilities. But actually seeing them used in clinics (where adherence monitoring was not consistently done before), I realized what a powerful tool these charts can be – if providers are properly trained on how to use them and they are used consistently – in improving the quality of care given to patients.

Using the feedback we were given from the facilities, we created extended charts which could be used for 60 days and 90 days as well. We were able to present these charts to the director of SNAP (Swaziland National AIDS Program) just this afternoon and should have them on their way to the Ministry of Health (Forms Committee) soon, even though this is likely to happen only after we leave the country.

One very interesting thing about adherence that I did not previously think about was the support structure needed in order for a patient to have good adherence to ARVs. Many of the patients we saw had much better adherence to their morning tablets than their evening tablets because they would often fall asleep before the time designated to take them. Living alone, these patients did not have anyone to wake them or remind them to take their pills before falling asleep, exhausted from a full day at work. There was even one patient who broke down in the clinic because she felt so alone, without any real friend with whom she could even share the fact that she was HIV positive. This comes back to the barrier of having such a large stigma against HIV in the country, an issue that requires some creative thought indeed.

Finally, at the very end of our hectic day, we had our first opportunity to try some authentic Swazi food. From the cornbread-type cakes to the colorful wild vegetables to the stewed oxtail, the food was incredible, a welcome break from cooking our own meals!

Below are some of the expert clients being trained on how to use the adherence charts:

It has truly been an exciting couple of days. We had three meetings today, two of which were at the same time. Deepika was able to present our adherence materials to ICAP while I spoke with members of the Ministry of Health about the final versions of the family planning brochure and poster. The really exciting part is that I was able to speak with them about the adherence charts and the liquid adherence dipstick and reading card, and they gave initial approval to of them!

We also received an encouraging response from ICAP who asked that we extend the pill adherence charts to 60 and 90 days! We will be piloting the materials at the Baylor COE this week and be gathering feedback just before we leave.

While I was waiting at the Ministry of Health office for my driver to pick me up, I had a chance to speak with one of the members of the Health Promotions Unit. Since it was an unusually cold day, she invited me to wait in her office. We spoke about our families for quite a long time. She told me about how she was one of five children. When I expressed surprise at having such a large family, she told me that it was actually quite a small family. In a polygamous society like Swaziland, families may have up to 50 children!

One other thing she said really hit me hard. In the US, a family with two children is fairly common. But she made a conscious decision to only have two children. The reason was that had noticed during apartheid, when many South African families fled to Swaziland, and now with the influx of refugees from Zimbabwe, how difficult it was for large families to be able to carry the young children with them.

Even though Swaziland has been fairly stable, she and her husband decided that just in case they would have to uproot their family, they should keep it at a manageable size. This is definitely something I had never thought of when thinking about what size family I’d like to have. Listening to her, I realized how different people’s mindsets are in many other parts of the world where war and unrest are never that far away. An appropriate thought for the 4th of July. Happy Independence Day, everyone!

It seems incredible that we are starting our final week here in Swaziland – just as things are getting interesting! After a second meeting with the Ministry of Health, we have secured at least some level of funding for our family planning brochures from World Vision. We also developed a color version of the brochure and a poster version for clinics, just in case funding runs out for the brochures. We will be presenting these finalized materials before the Ministry on Monday

Also, our dipstick project has reached its (initial) conclusion! We have a finalized reading card ready to hit the clinic this week for testing! Also, we made edits on our liquid adherence charts and are going to be making a presentation about them (and the pill adherence charts) at ICAP this week.

The SOP is also coming along splendidly. I was a bit worried that we had no idea how to write an SOP and thus create something useless for the Ministry, but as it turns out, it is merely a starting point. Generally in Swaziland, people are fairly opinionated. But they need a starting point from which they can make changes and tailor documents to meet their needs. So, to aid in this process, we drafted an SOP of the process of job aid development. Hopefully, this will be a stepping stone to getting educational material in the country standardized.

Next, we will be meeting with World Vision, the Ministry of Health once again, and ICAP to get our materials printed and hopefully distributed – even if this does not end up happening until after we leave.

Over the weekend, we had the chance to go to Mkhaya Park. There, we had one very adventurous driver who took us right into the middle of a family of elephants. It was pretty intimidating to see them all up close and personal, especially this huge male who kept rubbing his foot and edging toward us. Here he is:

On the adherence methods front, we finished the liquid adherence method. We showed our tools to the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) and they said that this would be of great use for them. They suggested a couple modifications on our liquid adherence method to make it more robust, which we have since made. However, although they were willing to distribute our materials to all of their sites, they were unsure about funding the printing costs. Additionally ,we set up a meeting with World Vision this coming Monday to pitch our project to them. Finally, we have been taking to the International Center for AIDS Care and Treatment Programs (ICAP) about the adherence tools, and we will be giving a 30 minute presentation at their technical meeting this coming Monday, upon which they will decide whether they will fund the project!

Back to our family planning materials- we met with the Ministry of Health again at the end of the week and they had multiple suggestions for the brochure, as to more closely align it with the national family planning guidelines. However- good news: WORLD VISION IS FUNDING THEM! We were very excited!! They said that we need to submit all of our family planning material to them and they will get a quote and fund a certain amount. We showed the Ministry our poster as well, which they also liked. We will make all the corrections which they suggested and we are meeting with them on Monday again to finalize the brochure and poster!

Now moving to the dosing clips- they have been distributed to about 11 sites in Swaziland. We created a short survey of questions which we would like to use when we visit sites, which we will hopefully get to do next week. The Clinton Health Access Initiative (CHAI) also asked that we create job aids for the clinics as well as for the patients and get them printed as soon as possible, so that we can distribute them to the sites we visit next week. Its so exciting to see everything come together! As for the dosing clip study, we have been doing mock runs to iron out all the potential problems while we wait for the final IRB approvals. It looks like we may be able to make a presentation to the Swaziland IRB this coming Friday, so by the time we leave, we may be able to have fully prepared the study for execution!

As we are finishing up our projects, we have been to think about the sustainability of them once we leave. For this reason, we began to seek funding and distribution options for the family planning brochure and the liquid and pill adherence charts. This week, we had a series of meetings to explore these options. First, we met with the Health Promotions Unit and the Sexual Health and Reproduction Unit in the Swaziland Ministry of Health about our family planning brochure. They took immediate interest as they said that they did not have such a government approved material in the country. They said that they would look over the brochure as well as the SiSwati copy of the brochure which we submitted to them and get back to us by the end of the week with corrections and suggestions. They also said that they would talk to World Vision to ask for funding them.

We also met with Mothers 2 Mothers (M2M), which is a organization which encourages HIV+ mothers to talk to other HIV+ mothers to share their stories and give their support. They said that this is a tool that they can definitely use but were unsure about whether they would be able to fund it. Next, we met with the Family Life Association of Swaziland (FLAS) which is the major organization for promoting family planning in Swaziland. They have a lot of family planning materials, but they only distribute them at their 2 FLAS sites, one in Mbabane and one in Manzini. Our brochures are geared towards PMTCT (Prevention of Mother to Child Transmission) sites, which FLAS is not involved with. FLAS Mbabane directed us to FLAS Manzini’s marketing division, but after getting to Manzini, our meeting was unfortunately cancelled for unforeseen reasons. One of the suggestions we got from talking to these organizations though was that family planning posters would be very useful… if clinics ran out of brochures to distribute, patients would still be able to get the information through the posters in waiting and consulation rooms. Thus, we created a poster for family planning as well!

Time for a short break from work: we have been having some fun weekend adventures, including going ziplining at Malolotja Nature Reserve and seeing awesome animals in South Africa’s Kruger National Park and Swaziland’s Mkhaya National Park! The landscape is absolutely beautiful and very unique, and we’ve had excellent and rather close animal encounters!

UNFPAFLASICAPCHAIWVM2MEGPAFSRPUHPU. Grammatically incorrect? Perhaps, but these letters have been the essence of our past few days (and will continue to be so, hopefully).

Our family planning brochure has successfully been translated and approved by the Ministry of Health! They want to be able to use it throughout the country at all PMTCT sites. The problem is that they are not going to be able to fund the printing of them. This is where all those letters come in.

We have been busy arranging meetings with several of these groups to gauge interest in the brochure. We really feel it would be beneficial to have this information disseminated throughout the country, as 40% of women of the age of having children are HIV positive.

We have also finalized a prototype version of the reading card to be used with the liquid adherence dipstick and should be testing it out on the expert clients soon! Job aids for this and the adherence chart we designed to accompany it are underway.

One new project that has come to our attention is through CHAI. The status of job aids in Swaziland is astounding. There is no regulatory body that maintains a list of what kinds of job aids are out there or how many of any given kind are in circulation. An effort is currently going on to create a database of all job aids in the country. We have been tasked with a branch of this project to create a Standard Operating Procedure for how to develop job aids in the country – quite a large task indeed. It is probably apparent by now how our work load has increased exponentially as the end of our trip approaches.

Last weekend, we crossed the border into South Africa to go to Kruger National Park. The park is about the shape and size of the country of Israel and has all sorts of wild life. In our time there, we only covered the southernmost quarter of the park, but we saw so many animals there in just two days, including what are known here as “The Big Five.” They are the lion, the leopard, the rhino, the elephant, and the buffalo. The park was mostly covered in low, brown grass, so we were able to see animals at greater distances (yay, winter!).

We also got stopped by the South African police multiple times to check our “boot” for, well, illegal booty, you might say. The whole trip was quite an adventure. Below is a picture of a friend we made along the way!

Suddenly, all of the projects that we have been trying to get rolling for the first half of the internship have swung into action! We have been trying to finalize the measurements for the liquid adherence measurement cards. We finished making liquid adherence charts (similar to the pill adherence charts), so that when the amount of liquid medication used is found by the dipstick, they can easily determine the patient’s adherence. Additionally, we have also been developing a job aid for the liquid adherence charts and finished the ones for pill adherence. Soon after finishing the pill adherence job aid, we got it translated into Siswati and dropped off a copy at ICAP for the Siswati to be proofread and checked for clarity. We hope to have the translated version sent to the print shop and printed for use as early as Monday.

Also, some of the English copies of our family planning brochure that we left out in the waiting room of the Baylor COE were used by the end of the week! Hopefully, when we get the Siswati version out, the information about family planning will spread even more quickly.

We also got a chance to sit down with a member of CHAI, who we have been in communication with regarding job aids. All the NGOs in Swaziland develop job aids for their technologies, such that there are repeats of job aids, job aids don’t get out to all of the clinics in the country, the jobs aids in the clinic are not updated when new regulations come out, etc. There is a real need for the organization of job aids created by NGOs, and CHAI is helping the Health Promotions Unit (Ministry of Health) create a database for the job aids and facilitate communication amongst the NGOs regarding the same. They are still at the beginning stages of this endeavor, and she asked us to help make a SOP. We hope to help with this in the coming week.

It seemed like Dr. Kortum and Dr. Oden just whizzed through Swaziland… in our one day together we had multiple productive meetings, including meetings with CHAI, EGPAF, ICAP, and Baylor. They brought a number of technologies that we all believed would align with the goals of these respective organizations. We are going to meet with EGPAF again next Monday as they expressed interest in pill and liquid adherence methods. Also, we delivered the 30 sets of pill adherence charts to ICAP- our next steps on this front are developing a job aid for the pill adherence chart and getting the job aid translated into Siswati. Overall, it was a great visit , and we really enjoyed seeing them here!

In other news, we finally put the English version of our family planning brochure out in the clinic for use! We also gave the family planning brochure to some of the expert clients and nurses for translation into Siswati, but they said that some of the concepts were slightly difficult to convey in Siswati. The nurse manager said that she would help translate the difficult parts, and she also said that it would be best to have the Siswati version of the brochure get reviewed by the Health Promotions Unit (HPU) of the Swaziland Ministry of Health before giving it out in the clinic (she already started talking with them about this). We also have been in contact with CHAI about these brochures and with their help, we set up a meeting with HPU on Monday.