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.

Kigali Convention Center

"We die of hunger while they build this....place." -Serafine

From my limited experience here, I have learned that Kigali is a city of facades.  Tall fancy hotels, paved roads with hand-painted curbs and colorful murals line wazungu-ridden areas.  The nightlife is booming (and expensive).  The coffeeshops come in multiples as one asks "Which Bourbon are you going to? Which Camellia?"

However, for many of Kigali's residents, the fancy facades may only remind them of the extreme dicotomy of their lives and the ones that swirl around them, spending more on a meal than they may make in a month.  When Lizzy and I first walked to the Genocide Memorial, we passed down some of the first streets that I'd seen in Kigali with dirt, deep divets and dingy signage.  This was the East Africa that I knew.  Where you buy detergent in "one-serving" little packages hanging inside a small shop.  Where the storefronts and inside counters are decked with clear plastic containers packed with fried balls of dough (mandazi) and sambusas.  Where the children look like they've worn the same pants for a month and they stare at you bug eyed as their fear prevents them from exclaming "Mzungu!"  Or perhaps it doesn't and you are ushered past to a sing-song choir of "Hello mzungu!"  While this isn't all of Kigali or even Rwanda, it feels more real than the $2 take-away latte that I buy across from my work.  And, while it may not be the most attractive by Westernized standards, I find these streets gorgeous.  There is color.  There is slow conversation.  There is phsyical activity.  There is life.  What is more beautiful than real life?

This shrouded side is easy found and plenty visible outside the bustling city.  However, espeically in Kigali, there are sad developmental undertones.  Many of the houses that we pass are covered with a red "X" spray painted haphazardly onto their front.  This "X" symbolizes that the house is not up to the modern standards which the Rwandan government set for the "beauty" of Kigali's future.  Therefore, the house will be destroyed in the upcoming years.  You have to make room for more fancy hotels after all.  

One shining example of this dichotomized society is the newest, hyped addition to the Kigali skyline: the Kigali Convention Center (pictured above).  While trying to make Rwanda a site for regional and international conferences isn't bad, the fact that the government is pouring billions of dollars into building a fancy-ass building while people still struggle to provide basic needs for their family is more than sickening.  Guess which roads are the quickestly paved in Tanzania and Rwanda? The ones that tourists and the President use most often.  It's not all that different from when the bike lanes in Chicago feed mainly into Oak Park and Lincoln Park, basically ignoring the poorer, minority neighborhoods.  In this disgustingly condescending video, you can see how Rwanda is being portrayed to investors and foreignors alike.  

In calling Rwanda "unafrican" by being clean and economically viable, it insults every stereotype that African countries are trying to fight against.  When Westerners assume Africa is only poor, disorganized and dirty, the are denying Africans the respect and dignity that they deserve, seeing them only as people that need to be "helped."  

This is why campaigns like "Africa is Not a Country" have been started.  They want to showcase the amazing range and depth of talent that is not shown enough in our perceptions of this continent.

"Africa is Not a Country" Campaign image.

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.

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.