Day 10: More student reflections on a difficult day of learning

This year’s students have been phenomenal about sending in reflections for the blog!! Here are two more about today!!!

From Ellen:

Today was much different than other days we have had in Zambia this trip. We went to the Pediatric Center of Excellence (PCOE) in Lusaka, which is an “advanced” hospital in Lusaka that focuses on treating children that have been diagnosed with HIV. I use quotation marks around advanced because it was not what you would expect from an advanced hospital in the states, but it works for them and PCOE is a model for other Zambian hospitals. They are still using paper charts at this hospital, and I spent an hour and a half with “Captain Jerry” and Liz getting the patients charts ready for tomorrow’s appointments – and we didn’t come close to finishing. We put in the papers that would be filled out at the next appointment in the file and we also made sure previous test results were in the file. I would say at least 50% of the test results were not in the file where they should be. We started out completing the files that were “ready” and then we went back to the files with missing paperwork. After some consulting with Jerry’s co-workers, they were able to find some of the missing test results and more files were complete and ready for tomorrow! I had to leave (and just as I was getting a hang of the system) to go to my next rotation, but I am assuming they found and completed the rest of the files. When I initially walked in, my thoughts were “this is a complete disaster,” but as we were leaving everything was working out. It was just a completely different system than I am used to, but it works for them! The “flow” of this hospital is also very different compared to hospitals in the US. They are given an appointment date with no time, and they are expected to be there early in the morning, and they stay until they are called back. It is on a first come, first serve basis. They start with triage, then they go to adherence, they see their doctor and nutritionist if necessary, and then they will pick up their drugs at the pharmacy. I don’t know if I, or the rest of American citizens, could get used to this. In the US, we are angry if the doctor is a half hour late to our appointment, and every single patient here clears their whole day to get their treatment. The whole concept of timing in Zambia is different. They are much more relaxed, and everything seems to move slowly compared to what I am used to. It has definitely taken some patience and adjusting!

After my rotation in the filing room, I went to sit in on an appointment with Sister Ornella, a neurologist at PCOE. At this time, she was seeing an 8-year-old boy who had severe epilepsy and developmental delays. He was there for a 3-month appointment, so Sister Ornella was just checking on his overall health. The mother stated that her son’s seizures had slowed down, but that he had recently gotten a cough. They discussed the medications that were prescribed, and we learned that he was prescribed a dose for an infant at a clinic in Lusaka, and Sister Ornella stated this was doing nothing to help him. The dosage is not common knowledge, so it was in no way the mother’s fault, but it was just sad to see that whoever prescribed this medication was so negligent. It is very important that children are given proper health care, especially when they are HIV positive and it was evident that this wasn’t happening at some smaller clinics in Zambia. Sister Ornella stated that she is no longer surprised when she sees mistakes like this, and that was hard to comprehend. I think in the states we often take for granted that quality health care we do receive, and I didn’t realize how different it could be in other countries.

The other rotation I did was the most eye opening. I was observing adherence, which is where patients go to speak with a counselor who will determine if they are using their drugs correctly. I have only read and heard about the HIV prevalence and actually seeing these young children today who were all HIV positive was heart breaking. We had learned a little bit about HIV before coming to PCOE, but I don’t think anything could prepare us for this experience. I observed three different children today, two who didn’t know they had HIV. They were both still taking their medications regularly, and they were able to explain how many pills they took, what time they took them, and what would happen if they didn’t take them. One of the kids was fourteen and didn’t know why the was taking this medication. All he knew was if he didn’t take his medication he would “get sick and die.” It was hard to hold back tears when he said this, and at first I was kind of angry that he didn’t know why this was happening to him, but after seeing the caretaker’s emotion and talking to the counselor I understood a little bit better. The mother was scared to tell the child, which I understand. The counselor told the caretaker that they needed to tell him as soon as possible, and she told her about support groups and techniques to make it easier for everyone. The workers in the adherence room were excellent support for these caretakers and patients!

Overall, today was a lot more learning than doing and it didn’t directly relate to our field, but I feel like I learned so much. I didn’t truly understand this situation in developing countries, and it really opened my eyes to the problem. I am so glad there are places like PCOE that work these patients and families and try to make this heartbreaking experience better for all involved. After our rotations, Dr. Krishnan and Ms. Masters gave a presentation on hearing loss and speech and language delays, and it was clear the attendees were very interested and thankful for the information.

From Liz:
We spent the day at the Pediatric Center of Excellence where the majority of patients have HIV. I learned a lot, but it was hard for me to see the prevalence and sad stories of families having to tell their young children that they have this infection and will have it until they die. They usually tell the children by the age of 10 that they have HIV, but the youngest person they have told was 71/2. I started the day in Adherence, which is where they ask the patients questions about how many pills they take, what time a day they took their pills, the expiration dates, among other things. The first patient was a girl and her grandmother, and the grandmother was not watching the girl vigilantly. Some of the pills had been put in a different pill bottle, and the counselor explained that this is not acceptable and to never do it again. She took the bottle away and very sternly told the grandmother the proper ways to make sure the child swallows the medicine and that everything stays in its original container to make sure the expiration date is still valid and that the child is taking the correct pills.
My next observation in Adherence was a mother with her 2 kids, a 10 year old boy and an 8 year old girl. The counselor first asked the boy why he was taking the medicine, and he replied that it was because he has HIV. She then asked him what will happen if he were to stop taking the medicine, and he promptly responded, “I will die.” She explained that first he would get very sick and not be able to go to school, and he eventually would die. But she also reminded the young boy that we all will eventually die. The counselor also inquired who the boy has talked about HIV with, and he stated “no one.” She praised the boy for being so smart and disciplined. At the same time, my heart broke that society has this negative stigma surrounding HIV, and kids often lose friends and are made fun of. I appreciated this though, in the sense that PCOE stresses that they do not want HIV to define the patient. Yes, they are open to ask questions to the PCOE staff and their family members, but they do not want the stigma to negatively impact their emotional well being and social lives. The counselor asked these tough, yet realistic questions multiple times, Next, the counselor asked the younger sister the same questions, and she did not know why she was taking the medicine. The counselor then turned to the mom and told her that it is time to tell her daughter and that she will have a brother to support and encourage her so that she did feel alone. The mother’s eyes welled up with tears and she slightly shook her head, as she was trying to deny that this day would come. I had to compose myself because I almost started to cry right there, but I cannot imagine that the hardest days for these parents and children are yet to come. I felt very uneducated and unexposed to HIV, as I do not feel like we talk about it much in the U.S., but it was a humbling experience to realize that my illnesses are so minor compared to how much these skids and parents have to be monitored. These kids are so young with so much life ahead of them, and I pray that places like PCOE will continue to educate and support families to raise awareness and reduce the prevalence of HIV here in Zambia.
The next rotation was the filing room, and then I observed a physio session. A young girl with cerebral palsy was unable to told her head up, and the entire time she screamed and cried. It was interesting that the mom was not very responsive and did not attempt to calm the child. It took everything in me to not just get up and start soothing the baby or singing to her help her feel comfortable. I was just there to observe, so I learned to accept that culturally parents do not interact with their children as much as parents in the U.S. Parents do not realize that language begins at birth, and all types of interactions shape the child in their first 3-5 years of life. Ms. Masters and Dr. Krishnan did a great job explaining those parenting styles and strategies in the presentation to make known what children need and what parents can do to make sure they are reaching milestones. Parents and staff seemed to be very responsive and appreciative of the presentation. I just could not believe that parenting strategies that are second nature to most of us, they have never heard before! I enjoyed observing and being exposed to new things today…it’s safe to say that this was the most eye-opening day so far for me.

 

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