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.

Stigma and Suicide

Why should we investigate stigma among Rwandan youth at boarding school?

Despite stigma reduction campaigns in Rwanda, the stigma of HIV is still highly prevalent and affects the patients at WE-ACTx For Hope clinic in Kigali.  Stigma can reduce HIV medication adherence if patients are unable to hide their ARV’s, can’t find private locations or times to take their medications or have no one to provide support for their adherence.  One particularly vulnerable population is youth in public boarding schools.  Due to the close quarters, the tightly monitored environment and strict school schedule, it can be difficult for students to remain adherent while away at boarding school.  Additionally, in Rwandan culture, if classmates saw someone taking medication, they would be more likely to openly inquire about it or request to use some themselves.  Shirking answers or denying to share medication can be construed as disrespectful and interfere with personal relationships between fellow students in boarding school. 

The primary indicator of adherence rate is viral load and at WE-ACTx only 70% of patients aged 13-24 are virally suppressed compared to 84% viral suppression within the entire clinic population.  In order to investigate this trend and discover methods in which current youth are battling stigma, we organized focus groups of students who were either on break from boarding school or had previously been in boarding school.

There was another account that reinforced our idea to investigate this specific area within HIV treatment when the WE-ACTx research team came in contact with a student who experienced stigma while in boarding school.  One patient’s story, relayed by her mother, started when she was accused by her classmates of stealing money.  The girl’s teacher demanded to search her belongings and began rummaging through her things in front of her classmates.  While she was searching, the teacher accidentally pulled out the girl’s HIV medication and the tablets spilled all over the ground, scattering everywhere.  Her classmates knew the purpose of the medication and the girl was mortified.  After a few days, because of her embarrassment and the stigma that she felt, she decided that she wanted to commit suicide.  In the meantime, one of the girl’s classmates who was also HIV positive and taking ARV’s, began monitoring her for any indications of self-harm.  When her classmate saw her trying to commit suicide, she stopped her and showed her own ARVs, telling her that it was okay and that her life was valuable.  The girl changed her mind and is currently alive and in contact with WE-ACTx.

Therefore, the realities of stigma are all too real and can take situations that are challenging yet manageable and make them seem hopeless.  This is why we wanted to investigate how we could further support the youth as they faced these issues and what mechanisms they already had in place to remain adherent and confident in the face of stigma at boarding school.