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.

Liberation Day

Yesterday, July 4th, was a holiday in Rwanda: Liberation Day.  It celebrates the defeat of the previous regime (Interhamwe or Hutu Power) by the RPF army, subsequently ending the 1994 Rwandan genocide. One hundred days before Liberation day, Rwandans begin their time of remembrance, when posters similar to the one below are put up all over the city to commemorate the time of reflection of the horrid past events and death of loved ones.  It also serves as a way of helping to prevent was is termed "genocide ideology" or the growth of hatred based on ethnicity or specific affiliations.  This year was the 22nd that has passed since the end of the Rwandan genocide.

Here is an article that describes the celebration that took place 2 years ago, for the 20th anniversary of Liberation Day in Rwanda. 

In honor of both the American 4th of July and Rwandan Liberation day, Lizzy baked banana pancakes and I ate them:  

10 Fast Facts about Rwanda

1. Plastic bags are banned here.  They will even search your bags at the border and make you remove any that you try to bring into the country.

2. You can walk alone at night.  Kigali is relatively safer than its East African capital counterparts (Kampala, Nairobi, Dar) where I would never attempt to walk alone after the sun goes down.  

3. French is more widely spoken and written then English.  Thank you, Belgium.

4. The coffee is phenomenal.  Full stop.

5.  Tea is only drunk in the morning with breakfast.  No mid-day chai break here.

6. When trying to get your attention, Rwandans will "hiss" at you. No joke.

7.  Overcrowding is rarer on buses.  In Kigali, traffic police actually police the streets, especially around rush hour, and pull buses over if there is even one person more than there are seats.  Even the bus conductor, the guy collecting the money and hollaring out the bus's destination, must have a seat to himself.

8. While health insurance isn't mandatory, however, the government provides cost-effective, subsidized plans (called "Mutuelle de Sante," or "Mutuelle" for short) that range from free to $6/year and upwards, based on Income Level Category.

9.  Rwanda is in the UTC +2 time zone, or Central African Time.  Daylight savings time is not observed.

10.  Rwandas tell time in the "African way", adding or subtracting 6 to the time, depending on the hour.  Eg. 10am would be said as 4 o'clock in the morning in Kinyarwanda/Swahili while 12am would be said as 6 o'clock at night.

Clinic-wide Meeting

Last week, we had our scheduled meeting led by Dr. Gilbert, Edmond and myself with all the nurses, Abel and the psychosocial team to discuss the Family Needs Assessment.  My main agenda for the meeting was to get clarification as to why this data was collected and try to tease out nurses’ and counselors’ ideas on what information could help them practice better.  I know that we could make correlations from the data that we already had, however, I wanted to gain the team’s perspective to better direct my analysis and suggestions.  They answered my questions patiently (although it was 2:30-4 on a Thursday, so people were ready to go home) and we were able to determine several areas of focus for small group sessions.  These areas included substance abuse, child abuse, HIV stigma and being an orphan.  Edmond presented an explanation as to the current state of the government-funded social services in Rwanda and we discussed whether or not WE-ACTx would benefit from using these.  Since it looks like the funding is limited and most social services are only for temporary problems, there is not much support.  One option is to search for NGO’s addressing social issues preventing ARV adherence in Kigali and forming relationships with them.

In addition, we discussed whether or not it would be valuable to organize small focus groups of children under the age of 18.  It was agreed that children are more honest without their parents present and asking them about our four areas of focus in this setting could be very beneficial.

We all agreed that the next steps for the remaining 4 weeks are to determine children for the focus groups and perform the sessions in Kinyarwanda.  To do this, we will need a psychosocial counselor, either Laetty or Henriette, present in addition to a translator. 

Since all the counselors are off work this week for a training, I spent my time composing a list of Focus Group questions, translating the remainder of the speadsheet data with Augustin and arranging a meeting for next week.  In the meantime, I began working with our data analyst, Jackie, to gather data on patients that we still need viral loads for in order to use it for any correlations or deductions regarding ARV adherence.

Happy Independence Day, Rwanda!

This is the agenda I composed for our meeting.