Less Fear

woman carrying water

Nancy is scared every month when she takes her son to the HIV clinic.

She is scared that one of her neighbors will see them on the way to the clinic and figure out that they have HIV. She is scared that her boy might get sick again and that the next battle for his life in a rickety bed on the hospital ward will not end well. She is scared of the doctors at the clinic with their big words and judging eyes and explanations that she does not understand.

Nancy wants nothing more than for her son to be well. She wants her six-year-old to laugh and eat and run down the road from school with his friends. Even though she can barely afford to buy a small hunk of meat for a stew once a week, she wants her son to outgrow his school uniform, his one pair of shoes, his two pairs of pants. She wants to have to buy Matthew new clothes.

When Nancy looks at all of those bottles of HIV medicines that she is supposed to give to her son, she sees them as bottles of hope. Bottles that fight down her fears. She remembers how Matthew looked in that hospital bed before the medicines, how sick and how small he was. When the doctors gave her these medicines, they gave her back her son.

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When Nancy goes to the HIV clinic, she is scared that the doctors might take away these medicines. As much as she tries to give Matthew these medicines every day, she is not always sure she does it right. She is not sure that she gives the right amount when the dose changes every month. She is not sure what to do when Matthew has those sores in his mouth and is spitting out the medicines. She does not always give the medicines when there is no food in the house and Matthew's stomach is empty, sore and aching.

But Nancy does not bring up these concerns to the doctors because she is scared. She wants her son to be well. She wants to take good care of him. She is scared they will take the medicines away because she does not have the answers.

Some of the work that I presented last week at the International AIDS Society meetings in Malaysia was our antidote to Nancy's fears. Our idea has been that, if we could ask patients like Nancy the right sorts of questions, we could figure out whether they were having trouble with their HIV medicines. With the right questions, Nancy might feel comfortable talking about her concerns. We were hoping that we could make those scary doctors in clinic a little less scary.

And it worked! We have been able to identify a set of really important questions that we can ask in all of our clinics, questions that actually help mothers and grandmothers and fathers and uncles to talk to us about the challenges they have giving their children HIV medicines. The answers to these questions match up with who struggles with the medicines (even when we measure their medicine-taking using special bottles that record electronically whenever they are opened.)

Our clinics across Kenya are starting to ask these validated questions -- and to start these important conversations -- with Nancy and all the caregivers like her. Even better, presenting our work at the international meetings helps us to share these questions with other sites like ours around the world. We will look at families' adherence to medicines in a global collaboration of HIV care programs around the world.

Now that we know that these questions work, more and more places will be using them. More conversations about what it means to have a child taking HIV medicines every day. When we know who is having problems, we can help. Less fear, more hope.

Posted at 06:13

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