Home-based care

Every Monday I travel with Sister Mary, the home-based care coordinator for Philanjalo. Senior nurses are called Sisters here, though Mary is actually a teacher by training. Philanjalo is the NGO next to the Church of Scotland Hospital. It runs the Hospice that I described previously as well as a robust home-based care program. Yale has a long partnership with Philanjalo; I am looking forward to seeing Mary back in New Haven when she visits the nursing school in March.

Home-based care is a necessary part of treating TB and HIV in rural areas such as the KwaZulu-Natal region, since strict adherence to medications is important to avoid bacterial and viral resistance. The Zulu patients in this region live in very isolated areas, with tremendous barriers to care. Philanjalo oversees about 160 “home-based carers”, voluntary caretakers who look after people in their communities. Their role is largely social, serving as a link between the healthcare system and patients. Each carer visits anywhere from one to a dozen patients, depending on the number in the area. They visit monthly to make sure patients have sufficient medication and are tolerating it well. They also help with community education, distribution of donated food and supplies, and working to reduce stigma.

The South African Department of Health also hires Community Health Workers – full time paid employees who do similar work as the home-based carers. They oversee larger areas and work every day seeing patients. The recent news is that Philanjalo will soon oversee this program for DOH.

The first week I went with Mary and a few others to distribute donated food to a group of patients. We drove about an hour along dirt roads, and were met by ten women sitting on mats in a traditional Zulu round, one-room structure, called a rondavel, which was being used as a school. We had been expecting 35 patients, and quickly realized that only the healthiest had been able to walk the distance to collect the food. In fact, some of the women were friends who came to help, so not all were even patients. We sat with the home-based carer from the area, listening to how the patients were doing. Other patients drifted in. At one point, a male patient walked into the rondavel. The home-based carer ceded her seat to the man and sat on a mat on the floor. Betsy, an American who has lived in Tugela Ferry for years and speaks very good Zulu, whispered in my ear, “In Zulu culture, the men sit in chairs, and the women sit on Zulu mats.” I remained in my chair with the nurses.

After distributing the food, the women sang a thank-you song. Their voices were deep and strong, filling the air with emotion and joy. Sister Mary led them in a chant, “Away sickness, enter health.” Since then, I have witnessed Zulu people breaking into song for various reasons – welcomes, thank-yous, prayers for food. I close my eyes and let the music resonate in my bones.

The women then loaded the bundles of food – simple mealie, cook oil and beans – onto their heads. The frail ones struggled, and sought help to lift the parcels. They walked up the path and toward their homes, some with large distances to cover.

My second Monday I accompanied Mary and some nurses and counselors to a very remote community for “Awareness.” We drove for an hour and a half, for much of it along a road that could barely be considered a road. Mary has very impressive driving skills, though I felt sorry for the people bouncing along in the back of the truck. We eventually stopped alongside an open field on top of a hill. A group of people were gathered under the shade of a wide tree. They helped us unload the truck, and then we joined them to lead the educational session. There were about 20 women and children on the left side of the tree, and 10 men on the right side of the tree. Since there was more room on the right, I sat on the grass in front of the men. Two of the counselors and nurses sat with me, and others sat on benches in front.

The first speaker was Cindy, an energetic young woman with a great sense of humor. She described how she was very sick with TB and HIV, decided to get tested, and now is healthy after being on treatment. Another counselor then described the details of the HIV virus – how it is transmitted, how to protect yourself, and how it is treated. The nurses fielded questions from the group. Mostly women had questions and stories to share. One older, muscular man stood up at one point and asked a question that generated a lot of discussion. Later, I got the translated story: he said that men always get blamed for getting the virus, often when they are away working, and then giving the virus to the women. Is it true that only men can give the virus to women? Or can women also give the virus? The nurses clarified that, yes, women can give the virus to men.

The nurses then dispersed to several tables set up privately under trees. The first person to stand up and walk over to receive voluntary testing and counseling (VTC) was the older man who asked the question. Later, the nurses told me that they were very impressed with this gesture. Apparently it is rare for men to be interested and take responsibility for preventing HIV. This man was a valuable leader in the community, setting an example for others.

The most amazing thing about this day was that everyone we tested was negative. Either the positive people did not get tested, or the community was so remote that HIV has not yet found its way there. This latter idea is a possibility, since the women said they have to climb over a mountain just to get their mealie from the store. Usually, however, 10-15% of these kinds of remote communities are positive. The overall prevalence of HIV in the region of Kwazulu-Natal is 40%. In any case, it felt good to get the Awareness to this community before the virus.

My third Monday I finally went with Sister Mary to do home visits, this time joined by Monica, my roommate and Tufts internal medicine resident. We picked up a home based carer and visited her patients with her. The calls were mostly social – sometimes the patients were not even there (for example, the HIV positive children were at school). But we chatted with the families and found out how everyone was doing. Knowing there was a doctor in our group we were brought to an elderly gentleman who was complaining of new swelling in his legs. He had never seen a doctor, so the differential diagnosis was very broad – heart failure, kidney failure, low protein…

After examining him, we advised him to go to the local clinic 200 meters away to get his blood drawn. If his measures of kidney function were abnormal, we told him he MUST go to see a doctor. He was very reluctant to make the trip to the hospital, which is why he had been living with the swelling for a few months with no diagnosis. The local clinics, staffed by nurses, are really good at basic and preventive healthcare such as STD screening and treatment and prenatal care. When we visited the clinic, I noticed that the entire waiting room was filled with women and children. No men. I thought of the man at Awareness day who took responsibility to be the first to get tested for HIV. Considering that the current health system does not seem to be serving men very well, it was an even more extraordinary act that he decided to participate.

Our last visit that day was to a Gogo (grandmother-type figure) who was caring for a group of children, some HIV positive. We found her lying on a mat in a dark rondavel with no windows. She complained of classic TB symptoms – cough, night sweats, weight loss and lack of energy. She was having a hard time caring for the children, never mind getting herself to a hospital. We left her with advice to go to the hospital for TB treatment as soon as possible, and also to avoid sleeping in the same space as the susceptible children. I surely hope that our advice was heeded, but knowing the barriers, I wish we could have taken her to the hospital with us in our truck.