"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.

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.

Our QI Project Design

We held two focus groups over a period of two weeks focusing on HIV stigma at boarding school for children ages 17-24.  The idea to hold focus groups with boarding school students developed after several meetings with the clinical staff including the medical director, Dr. Gilbert, and the psychosocial counselors, Edmund and Laetitia.  We were assisted by the research team, Charles, Josette and Aíme.  A list of increasingly open-ended questions was composed and translated into Kinyarwanda prefaced by an introductory paragraph explaining the purpose of the focus group and asking for verbal consent.  The participants were reminded multiple times that their names and answers would remain private and only be shared with healthcare providers within WE-ACTx.  The facilitator also explained how the information shared during the focus group could help improve the care of their peers at WE-ACTx For Hope clinic.

The first focus group was held on July 10^th, 2016 at Sainte Famille Primary School in Kigali and consisted of 10 participants with an average age of 18.5 and included 6 males and 4 females.  Each of these participants had been previously enrolled in boarding school.  Stephanie was the facilitator with Leontine and Aíme serving as Kinyarwanda translators.  The entire session was held in Kinyarwanda and translated into English for Stephanie and Lizzy.  Lizzy took notes in English and Augustin took notes in Kinyarwanda. 

The second focus group was held on July 20^th, 2016 in the conference room of the WE-ACTx For Hope clinic in Kigali.  There were 4 participants with one having previously attended the first focus group on July 10^th.  Of the participants, the average age was 20.25 with 1 male and 3 females.  Stephanie once again served as the facilitator with Aíme translating and assisting in facilitation where possible.  Both Aíme and Augustin took notes in Kinyarwanda while Lizzy took notes in English.