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.

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.