What is it like if you are Kevin?

The problem with antiretroviral therapy -- the medicines that fight HIV -- is that if you don't take theses medicines almost perfectly the HIV virus can become resistant to the medicines and then they won't work any more. You have to take the medicines every day, at the same time each day, and you have to keep doing that for the rest of your life. Adherence to therapy (taking the medicines the way they are prescribed) is central to the long-term management of this disease. This is the focus of much of my research work.

First, I am really trying to figure out how better to measure children's adherence to HIV medicines. We need to find out which families are REALLY having problems so that we can then figure out how to improve their adherence. And we need to learn how to do that in this very particular setting in Kenya - and in other poor places like Kenya. The context really matters here. We need to ask: What is it like to take these HIV medicines every day when you live in one room of this mud structure?  What is it like to take these medicines every day when you are Kevin?

Kevin _outside House

Kevin is 6. His father and his mother have died, and he lives with his uncle and auntie in far room of this mud complex.  Kevin's auntie gathers water from the stream in that yellow bucket, and she does her cooking over a small fire in the wooden structure attached to their house. Inside the one room, Kevin lives with his auntie, his uncle, and his two small cousins.  Kevin is not the only one in the family with HIV.  His mother and father died from HIV, but his uncle, his auntie, and his two small cousins are all infected too.  This is their big secret though.  They keep the medicines and their diagnosis as hidden as they possibly can - even though they live in this compound with 20 other people.  They have seen their neighbors react to others who are known to have HIV.  They have seen them refuse to share their food, move away from them on the bus, and prevent their children from playing with those who are known to be infected.  Kevin's family is ashamed of this virus in their blood.  And in the midst of this stigma and isolation and the grinding poverty, it can be pretty hard to make sure that a small boy takes 4 different medicines twice a day, every day.  So, how do we best help Kevin and his family take these medicines every day for the rest of their lives?

The challenges to keeping up with these medicines are one of the hardest things caring for these families for the long haul. So that's the kind of thing I work on. I have done research work to gather their stories, to create a conceptual model of how children's adherence functions in a place like Kenya, and now I am working on a great measurement project to figure out which families are having problems with their medicines.

Posted at 18:47

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