Yesterday I was talking with one of the pediatric nurses (Yasmin) with my research advisor about some of the patients in our study. As a reminder, this study recruits women when they were pregnant, a bunch of tests are performed to determine if they have various infections (i.e. HIV, malaria, schistosomiasis, hookworm, etc.) and then follows their children every six months after birth with medical checkups. We were curious about the dropout rate in the study, as it seems to be pretty high. We asked Yasmin if she knew why patients stopped coming, and she said that it’s because of the high divorce rate among the Digo people. Apparently when a couple has children, if they divorce, the children automatically go to the father, and the father then generally hands them off to his mother, which is often far away from the hospital, and even if they live nearby, it is usually not communicated to the grandmothers that the children are in the study, so they stop going.
The research project has been going on for over a decade, and this is the first time my research advisor has heard about this. I have a feeling that the Kenyans conducting the research here knew about this, but it was normal to them, so they never thought to bring it up. Goes to show you how you can’t take anything for granted.
Another not-so-fun fact:
About 5% of mothers in this study are HIV positive, and obviously one wants to reduce the risk of transmission to the unborn child, which can be effectively done by giving the mother a drug called AZT in the later stages of pregnancy. However, it was found that 30% of children born to the mothers at this hospital were HIV positive, when with proper AZT treatment, the rate should be less than 5%. Yasmin said that even though AZT was free, the mothers often didn’t take it. Apparently they can’t be picked up at the normal hospital pharmacy, or be dispensed by Yasmin in the privacy of the clinic, but rather there is a separate window where all HIV medications are picked up, and only after several other tests. The stigma of being seen at that window prevents proper care.
The drugs are dispensed by the CCC, or Comprehensive Care Center, which is a country-wide program set up to treat HIV/AIDS, funded by PEPVAR and USAid. It is definitely a well-intentioned program, but like so many others run by the government, it is bloated and inflexible. They have their template for how they set up shop in a hospital, and they don’t deviate from that. One would think that once told that their location is preventing patients from getting the proper care, they would figure out another solution, but no, they are how they are. So, about 10 babies have been born with HIV over the course of this study due to bureaucracy. Really sad.
E is still up in Nairobi helping out with the kiddos, but I'm happy to report that she's returning on Friday!
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Hmmm. I wonder if Yasmin (or someone) could pick up the medicine at the stigmatized window and give it to the women privately? Seems like there should be some way to outsmart the bureaucracy.
ReplyDeleteAnd isn't that weird about the kids going to their grandmothers - maybe because the mothers would be unable to support them? I don't know what they have in the way of alimony over there. . .
love you,
McMom
There you go using common sense again, Mom! The bureaucracy here is so thick that it's crippled most people from even thinking about trying to get around it. Changing the system is not Yasmin's job, so she is not going to do it.
ReplyDeleteThe reasons for the kids going to the paternal grandmothers are, 1) This is primarily a Muslim population, and very patriarchal, so the father owns the kids, and 2) Kids would be kind of a drag on working and meeting a new wife, so they go to the Grandma.
Love,
M
M, good for you to ask the question in the first place, and also for the clarification in the comments above. Two things come to mind: religion plays such a HUGE part in the culture (good and bad) and bureaucracy is a worldwide issue. As they say, the road to hell is paved with good intentions -- and so it is...
ReplyDeleteYou are certainly gaining a worldview that while attainable by reading, would not resonate so deeply without this experience. So many of your writings have shown the incremental shifts in thinking that will make you an even better, smarter, and more compassionate physician.
We're so proud of you and E for absorbing this experience and sharing it with us. I know that it's even changed my own habits and worldview; thank you for that. Welcome home to E, and I'm sure that being together will be a great thing for you both.
Much love,
Linda/Mom