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.

MeraNeza

On Saturday morning, we reunited with the beautiful Judy and Marie-Eve, two 5^th year medical students at the University of Rwanda in Kigali.  We met them several weeks ago through a friend of a friend of a doctor and instantly fell in love.  While both are Rwanda, Marie grew up in the Congo (Goma!) where her family still lives.  Judy was part of Medical Students for Choice, the same group that we have at Rush and we all bonded over conversations about the need for safe, legal abortions in Rwanda (and the States!).  It is currently illegal to perform an abortion in Rwanda and as such, during her rotation at the Kigali teaching hospital (CHUK), she saw a saddening array of complications and outcomes due to women trying to perform their own abortions.  

Needless to say, they are both amazing, inspiring women! 

Therefore, we decided to attempt a second summit of Mount Kigali, this time aiming for the fabled outlook of Mera Neza, which apparently translates into “Be good!” in Kinyarwanda.  The hike was exponentially faster than last time, with us reaching the pine tree ridden outlook of Mera Neza in less than 25 minutes.  Aside from the more direct route and fact that Judy and Marie could ask for directions, we are also beast of hikers. :)

Here are some videos from the hike and our adventures:  

Two Meetings and a Football Match

This week we had 2 meetings about our next steps with the Family Needs Assessment for the children under 18.  Our first one was discussing how to organize the focus groups and the approach that we should use when addressing the children.  We sorted out things like when to hold the focus groups, how many children will be in each group, what age ranges should we use, who will be participating, how will we explain the focus groups to the patients, how should we document what is being said and what form of consent do we need.  Since this took quite a while, we held another meeting the following day with our pyschosocial counselors, Laetty and Edmond, to translate the questions and an introduction paragraph for asking patients to participate.  Lizzy was an invaluable resource by typing out all the meeting minutes and giving her input.  Also this week I was able to skype with Dr. Cohen, the founder of this clinic, and get her input on our progress thus far and next steps for the future.

The agenda for the first meeting is listed below:

Here are examples of the questions that we would like to ask children (ages 12-21) in the focus groups with the translations following:

• Status Disclosure Guhishura uko uhagaze
• How many people know about your HIV status? Ni abantu bangahe bazi uko uhagaze?
• Who have you told? Ni bande wamenyesheje?
• Have they told anyone? Explain. Hari uwo babibwiye? Sobanura.
• When? Why did they reveal this to them? Ni ryari? Ni mpamvu ki yatumye babibamenyesha?
• Who have you not told about your status?  Why not? Ni bande utabwiye uko uhagaze? Ni mpamvu yihe?
• Describe a time when you were at risk for someone discovering your HIV status. Sobanura igihe byari bigiye kuba ko umuntu amenya/avumbura uko uhagaze.
• How did the situation end? Ese byarangiye gute?
• What would make it easier for you to reveal your status?
• In boarding school? Ku ishuli wiga urarayo?
• In your home?  Mu rugo?
• Boarding School Kubaba ku ishuli/ku biga barara
• How do you go about hiding your HIV status (keeping it private)? Ese ubigenza ute kugirango uhishe uko uhagaze.
• In boarding school? Ku ishuli wiga urarayo?
• In your home?  Mu rugo?
• How do you experience stigma from HIV? Ese witwara gute mu guhabwa akato
• Ask for details, stories. Baza asobanure mu magambo arambuye
• When have you missed ARV doses?  Why? Ni ryari utafashe imiti? Ku yihe mpamvu?
• What are solutions for avoiding this? Ni ibiki byafasha mu kwirinda iki kibazo?
• How does the stigma that you experience at boarding school affect your ARV adherence?
• How could this be prevented?
• Self-Confidence Kwigirira ikizere
• Do you feel appreciated at school?  At home? Wumva ushimwa ku ishuli? No mu rugo?
• Are your strengths applauded/rewarded? Ese imbaraga zawe ubona zishimwa?
• How are you disciplined? Ese uhanwa ute?
•   Do you feel that it is deserved? Wumva guhanwa biba bikenewe?
• When do you feel confident in yourself?  Ni ryari wumva wiyizeye wowe ubwawe?
• How does Self-confidence affect your ARV adherence?
• Miscellaneous
• font-family: "arial" , "helvetica" , sans-serif; text-indent: -0.25in;">How can the people in the clinic improve your medication adherence? Ni gute abaganga bagufasha mu gufata imiti neza? 

In other news, Germany lost in the semifinals of the Euro Cup.  So that was sad.

DRC

or...as it's known in Rwanda: the Congo.

Despite what I'm sure are wise U.S. travel warnings, a few friends and I marched our way into the Democractic Republic of the Congo (DRC) and up the top of an active volcano.  It was called Nyiragongo Volcano and it was located at the southern edge of Virguna National Park (for a phenomenal documentary by the name of "Virunga", check your brother's pilfered Netflix account.)  After a night in Gisenyi, we stampeded our way to the Congolese border, cold weather gear in tow.  After 4 lines and 2 hours, including many people shoving their way in front of us, we paraded into the Virunga National Park office in Goma to grab our park receipt and snag (a very expensive ride) to the park.  

Jostling along the civil-war beaten streets to Kibati, we took in the lava-darkened, impoverished landscape.  With a volcanic eruption that covered half of Goma in 2002 and rebel fighting that spurred the UN to construct a military base there in 2012, the Congo's unrest remains resound and palpable.  

One indicator?  I didn't see a single metal bicycle but, instead, plenty of large wooden bicycle-like contraptions that functioned as both a method of transport for people and kilos of goods.

You can see the wooden bike in the bottom right corner.

Our hike to the top of Nyiragongo took about about 5 hours and was accompanied by a slew of porters and park rangers welding AK-47's.  Classy!  

The landscape transformed from jungle forest to pine trees to rocky terrain as we followed switchback after switchback.  With plenty of rest time and a reasonably fashioned path, the hike wasn't too bad.  At 3,470 m, we reached our goal (selfies in front of lava!) and proceeded to document the night with Iphones and my crappy digital camera.  After sipping on a lukewarm Tusker as a reward, I stared for hours at the kaleidoscope of molten lava as conversation tinged with Irish, Chinese, French and American accents filtered through my ears. 






As the sun ducked behind the Western edge of the crater, the sparkling red lava shown up from the hole in the very center of the crater accompanied by somewhat disconcerting "pops!" and "cracks!" as the volcano churned beneath our feet.  We heated up our stashed of food over a charcoal stove, roasted some rouge marshmallows and curled ourselves into balls of heat as we slept at the edge.  It was glorious!  Albeit freezing cold...

For the YouTube playlist on our adventures up the volcano, you can watch my completely ameteur videos here.

Another exciting fact (for me!) was that I could finally use my ancient Swahili to a fuller extent.  While Congolese Swahili is heavily mixed with French and the time-tested Tanzanian saying like "digging for medicine" for going pee in a bush were non-applicable, I was ecstatic to pick up phrases and eaves drop on conversations again.  The Congolese are louder and rowdier than their Rwandan counterparts as well. 

Till next time!

Focus Groups Update

After looking at the data from the 181 patients surveyed during the Family Needs Assessment that focused on children under 18, we discovered that 1/3 of the patients never reported their viral load during the survey.  This meant that we would not be able to correlate their health outcomes to their management of HIV since ARV adherence is determined via viral load per the most recent WHO guidelines (2015).  Therefore, I compiled a list of patient names and our data analyst helped me to search the national EMR and WE-ACTx for Hope's paper records to fill in the gaps.  While about 1/4 of them were not on ARV's as of yet, the addition of this data was still important.  Now, instead of 67% response rate, we have an 85% rate of data that we could correlate to ARV adherence.

Another concern was the duplication of one patient name on the list in addition to not all the survey results being translated into English.  Therefore, I sat down with one of our bilingual employees that assists our data analyst and spent several hours finished translating.  Initially we were translating from Kinyarwanda and conversing in English, but when we discovered that Swahili was a better method of understanding each other, we switched to that.  He would translate the Kinyarwanda written responses into Swahili and then I'd write them in collouqial English.  Additionally, we discovered while doing this that many of the "Comments" sections which were filled in were not done so in legible Kinyarwanda.  Therefore, some of the results still remain in Kinyarwanda since they weren't legible to a native speaker.  Alas!

After these strides, we planned to sit down on Thursday with the doctor and one of the trauma counselors to discuss the details of our next steps: organizing Focus Groups.  We needed to determine things such as which age groups we'd group together, how many children would be in each focus group and how to supportively word the questions to encourage responses.  While at the Nyacyonga clinic with Edmund, we discussed his impressions of the focus group draft of questions.  He pointed out that he wasn't clear on what a focus group was since he's never done one before.  I explained that focus group sessions would allow for more specific information and for us to ask more questions and hone in on responses as to what and why these factors are affecting HIV adherence.