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Child tuberculosis: Ochen’s preventive therapy story

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Ochen, five years old, and his mother both live with HIV. As part of a research project, led by The Union, Ochen has taken tuberculosis (TB) preventive treatment to reduce the risk of TB infection and improve his quality of life. This is his story told with help from his mother, Kenyangi.

Ochen being examined by clinician

Kenyangi explains: “After Ochen was diagnosed with HIV he started to take antiretroviral therapy (ART). A few months later, I was told he should start taking TB preventive therapy (TPT), but I was worried about him having to take more medicines and the potential side effects.

“But when I saw Jovan’s life improving from the ART and thanks to the healthcare workers explaining the benefits of TPT, I thought it would be good for him to start TPT. I didn’t want to lose my son to TB.

“At the beginning of treatment, there were some difficulties in taking medication, because of all the pills he had to take on top of the ART. With help from me and the healthcare workers, Jovan started taking his medicines well, and has not had any side effects.

“It was also hard to attend all of the health facility appointments because of work, but later we were able to streamline the schedule and medical appointments.”

There is still a challenge of stigma and Kenyangi doesn’t want neighbours to know their HIV status. She doesn’t want healthcare workers to visit her home. If they need to see her, communication is always through telephone and she makes visits to the health facility for appointments.

Ochen and Kenyangi’s names have been changed to protect their identity.

The ‘Evaluation of Adherence, Completion, Events for Tuberculosis Preventive Treatment (ACE TPT) among PLHIV, including CLHIV, in Uganda’ project is exploring how TB preventive treatment can be improved for people living with HIV, including children living with HIV, in Uganda.