welcomed in


If a family allows you the privilege of entering their home, they crack open a window into understanding a bit more of their lives. Mary seemed like a mother who didn't really care that her HIV-infected 5-year-old was not getting her medications every day. At first, she claimed that the girl was getting all of her medicines every day. When questioned about her daughter's repeated pneumonias, Mary admitted that sometimes she had a problem getting home in the evening in time to give her daughter the medicines, but she shrugged off the rest of the doctor's questions with a blank stare.

We made the journey out to Mary's house in an ancient Toyota Corolla taxi with smoke rising up from somewhere around the shifter. When I first saw the small, 6 foot by 8 foot mud shelter with straw sticking out from the walls, I thought it was a place where animals were kept. I did not realize that this structure was home to Mary and her three children. But despite the mud, despite the cramped quarters, despite the mice that ran across my feet as we talked with Mary, the home was clean and neat, with pieces of fabric draped over the single wooden couch and a lace doily covering the small wooden table on which the family eats and works.

In Mary's house, I learned about her two hour walk to work at one of the AMPATH farms and her two hour walk back home and how these long hours mean that she often arrives back after her youngest child has fallen asleep, at a time that is too late for her to take her medicines. I learned about how Mary's husband died after his HIV made his body sicker and sicker, eventually wasting away into nothing. I learned about the TB and the pneumonias and the hospitalizations that Mary and her daughter went through before they were finally diagnosed with HIV and started on medicines. I saw how Mary stores the medicines for herself and her daughter tucked away in a basket, that she hangs on a nail high up on the wall of her one-room house so that her mentally challenged 12-year-old cannot get into the medicines and make himself sick accidentally by trying to take them.

After we shared a cup of tea, I heard the story of how Mary's husband's family "chased them away" from their home on the family compound after it became clear that the husband had died from HIV and that Mary was sick too. Mary lives in fear that she will be chased away again. She struggles to keep secret this disease and the medicines that keep them alive. Her need to keep these medicines a secret is so strong that she does not tell anyone else about them, and there is no one that she can enlist to help with the medicines if she is away from home. She wants her daughter to get her medicines every day, she knows that her daughter's survival depends on the medicines, but some days the challenges are too many for Mary to make sure that this happens.

Over the past week, I have been working with my study team on a protocol for how exactly we will do home assessments to evaluate the treatment challenges for HIV-infected children in Kenya. While we have traveled to the homes of some families, like the day we met with Mary, we do not systematically go to families' homes or use a home visit to investigate how well they are doing with taking the medicines. In the new phase of research I have been trying to get started over these last 3 weeks, we are going to be going to the homes of many of the families seen at four different clinics. We will ask them questions about how it is for their child to take the HIV medicines, about the challenges they have with the medicines and about lots of the details of their lives that go into whether or not the children are able to get the treatments that they need. Still learning to ask the right questions….

Posted at 15:30


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