"What would make it easier for you to reveal your HIV status at boarding school?"

The session ended with the question, “What would make it easier for you reveal your HIV status at boarding school?”  Participants’ answers focused largely on education, with many revealing that they learned very little about HIV and AIDS from their school curriculum.  When asked how many of them learned about HIV in school, only 6 of 10 responded that they had.  The ones who had HIV education in school indicated that it was limited and that there was only a short paragraph explaining HIV/AIDS in the chapter under Sexually Transmitted Infections (STI).  They also reported that many of their teachers did not have adequate knowledge on the subject.  They emphasized that the school curriculum did a poor job of explaining the difference between HIV and AIDS (“being sick from HIV”).  They said that their classmates, friends and family often did not understand that people could live successful, healthy lives even if they were HIV positive.  The participants’ recommendations for this, aside from including more information about HIV in the school curriculum, was to have school representatives lecture briefly about HIV/AIDS at morning parade or in the dorm rooms to supplement their learning.

In addition, many participants agreed that telling at least one trustworthy school representative, whether it was a teacher, headmaster or matron, about their HIV status was important to remaining adherent.  School representatives could help provide safe spaces and times for students to take their HIV medication. In addition, when students needed to ask for time off from school to pick up their medications from clinic (since they are currently only able to get a one month’s supply), these representatives could allow them permission.  Other participants recommended telling friends at school so that they could remind and help them to take their medication.

Hiding ARVs

One of the things that we asked Focus Group participants about was their strategies for taking ARVs privately while at boarding school.  They described a wide range of tools and methods for doing so. Here is a comprehensive list:

• Wrap in paper (notebook paper, magazines, newspaper, etc.)
• Hide it in your food during meals.
• Hide it in chewing gum packet.  If people ask, say that there is only one left.
• Hide in your pocket until you have to take it.
• Put a blanket around your bed (saying that you don’t like the sun) and then you can secretly take it whenever you need to.
• Let it dissolve in juice or water.  Carry around the same bottle and refill it as necessary.
• Disguise in Eflagen box (a common medication for headaches.
• Put on the edge of a cup on the handle and then take it while you are drinking.

We also discovered that about half (6/10) of participants need water to take their ARVs while the remainder (4/10) were able to swallow the pills without water.  This meant that about half the students had more flexibility with how they could take their medication since they didn’t need clean drinking water to be readily available.

While these solutions are applicable to the long-term reduction of stigma from HIV, they are short-term solutions to increasing ARV adherence and therefore, health outcomes while participants are still in boarding school.

Stigma and Dropping out of Boarding School

Another participant in our first focus group described a traumatic experience when his classmates found out that he was HIV positive.  When his friends saw him taking his medication and asked what it was, he would tell them that it was for a headache.  One day, one of his friends had a headache and went into the participant’s belongings and took one of his medications.  Afterwards, his friend felt dizzy and reported it to the headmaster.   The headmaster assumed that he had taken illicit drugs and asked where he had gotten the medication.  Then, the headmaster took the bottle of medication from that participant’s belongings and held it up in front of the entire school, asking who it belonged to.  The participant didn’t speak up but many of his classmates knew that it was his and some identified it as medication for HIV.  Soon, the whole school knew and the participant was humiliated and depressed.  He refused to leave his bed or go to class for several days.  When he finally did, he discovered that he was being barred from entering the classroom by school security until he turned over the rest of his medication.  He tried explaining what the medication was for and that he needed it, but the headmaster refused to let him return to class until he gave him turned in his medication.  So, the participant went to the police station and told them and the situation, disclosing his HIV status to one particular police officer.  The police officer told him that he would come to his school soon.  Three days later, a different police officer showed up at school and took him back to the police station.  During this time, many people in the police office also became aware that the participant was HIV positive.  Eventually the headmaster came to understand the participant’s situation, however, due to this experience and the discrimination that the participant was faced at his boarding school he transferred soon after.  Ultimately, he dropped out of boarding school and no longer attends school due to the extreme stigma that he faced from having HIV.

First Focus Group

The first focus group largely addressed how participants took their medication privately, how they hid their medications and who they were able to trust at their school.  All the participants had told at least someone in their family about their status. One participant had disclosed his status to his girlfriend after having attended a support group on disclosure hosted by WE-ACTx.  A few told a “school representative” which included either a teacher, school matron or headmaster/headmistress.

When asked about the challenges that participants faced when hiding their status, they began describing the difficulties of needing to take their medication in private.  Many of the participants had revealed their HIV status to at least one school representative who helped them to take their ARVs each day.  One participant would tell her classmates that her parents were worried about her and that she needed to talk to them on the phone (in the headmaster’s office) each day.  Because students in boarding school are banned from using their cell phones, they are only allowed to make calls in the presence school representatives.  Another participant would tell his classmates that the headmaster was calling him into his office each morning and evening to deliver a bottle of water.  He would bring his headmaster a bottle of water and then use that bottle to take his medications in his office.  While he was doing this, other HIV positive students would also be in there taking their medications.  This would become a time when his classmates and him would get to know each other, but they never discussed their HIV status even though they knew that they were each positive.