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.

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.

Laundry

I tried to wash my own laudry this morning.  Josie, one of our housemaids, was out visiting the doctor for her cough.  Going on a long hike this weekend, I needed my clothes washed and dried by tonight in order to pack them.  With the sun as the only form of a dryer, I knew that the clothes needed to be washed and hung by midday in order to dry in time.  As I paraded my clothes through the kitchen and dumped them into the cement basin, Serafine (our cook) followed curiously.  No sooner had I turned on the water and made my way towards the shed in search of laundry detergent than I heard my name repeated in haste.  

"Stephanie!  Stephanie!"  Serafine called out.

"Abey?" I inquired back in Swahili.

"I will do it."  She said and without asking her what, I knew exactly to what she was referring.

"No, no, no. I can wash my own clothes," I insisted.  "I know how to do it," I said as I wandered back over to the tub filled with my clothes.

"Oya!" she exclamed, switching to Kinyarwanda to emphasize the "no!"

"Serafiiiiiiiine..." I pleaded.

She went in search of the laundry detergent as I placed my clothes in the basin and let them soak up the cool water.  After finding no detergent, Serafine sprayed in dish soap instead and I swoshed it around with my undies, shirts and bras.

"Leave it.  I will do it," she repeated.

I tried again to wash my own clothes, begging and explaining to her why I wanted I was insisting on doing Josie's job.  As I began scrubbing one of my orange sports bras, she put her arms around my waist, pulling me in for a hug.

"Leave.  We will do it."  A victim of her loving embrace and relentless insistance, I pulled my hands from the soapy water and back away.

"Okay.  Thank you."  Slowly, I walked guilitily away.

She is certainly a wonderful mother and the most strong of women, so I had to respect her commands.  Later, when I asked her for a picture to add to this story, these resulted(per her idea...):

I promise that I'm laughing...not scared. :)

Climbing Mt. Kigali

On Sunday, Lizzy and I decided to be explorative.  We set our sights on climbing to the top of Mt. Kigali, a pretty little bump in the wavy landscape surrounding Kigali town.  Seen here in the background from our clinic, it was about a 20 minute bus ride from the bus station in the middle of town, Mimoji, which is about a 30 minute walk from our house.  After hopping off somewhere close to the base of the mountain, we began winding our way through narrowing streets, eventually walking next houses (or sometimes into them).  Children would wander after us and peter off after a few minutes.  Eventually a teenage girl jokingly offered us some of the corn that she was eating and, sticking my hand into her yard, happily accepted it.  Munching and meandering, we made our way up and up and up.  After about 45 minutes of attempting to find a path to the forest that topped the mountain, we came across a promising one.  Barely visible but still frequently trodden, we crunched our way through the leaf-covered ground, sliding backwards on the tiny rocks and layers of leaves. 

View just after passing by the last of the houses.

 As we climbed, the herd of children and teens following us morphed into only two boys (11 and 12 years old) and one kid named Erik (22 years old).  Between our blind intuition and the three of them, we pieced together a path to the peak.  As the top, we crossed a dirt road, passing by some guys leaned against tree trunks and another chatting it up on his phone.  After 50 meters, the forest opened up into a vast, cascading plain allowing glimpses of the mountains that sprung up between the road to Gisenyi in the West.  Barely visible along the skyline was a double peaked mountain that contained a volcano in Virunga National Park in the DRC.  We relaxed, shared some biscuits and took some jumping photos.  We are wazungu after all!

The hike down took about an hour and was punctuated by Lizzy's first taste of sugar cane.  We bought a whole branch for 100Rfr (15 cents) and gave some to the boys, Erik, and one of his friends that passed by.  The mama selling it laughed as we attempted to eat the sugar cane as readily of our Rwandan company and agreed to take a photo with these highly  incompetent wazungu.

The day ended with us exhausted, a bit sunburnt and hopping on motos as we waved goodbye to our new friends and sped home for water and libations.  

Worthwhile random adventure!

Umuganda

Saturday, June 25th, was my first (and only) Umuganda day in Rwanda.  Umuganda is a national-wide morning of community service that occurs on the last Saturday of every month.  You can read about the fascinating history and meaning of Umuganda here. 

John, our gardener, woke us up with his booming voice and fervent gestures that morning, insisting that we join in the work being done.  Happy to see another side of Kigali, I threw on clothes and harassed Lizzy and Kerrlene into coming with (just kidding, they actually volunteered quite readily).  We hiked down the winding road for 15 minutes, led by two Rwandans John had arranged for us, before encountering a group of 20+ Rwandans and wazungu lined up along a brightly painted wall outside a coop and one of our favourite cafes.  The wall was being painted with a massive with the more complicated portions already sketched or painted in.  We picked up plastic cups full of varying colors of paint and washed off some paintbrushes.  After a few hours of painting triangles, rhombuses and frilly swooshes, in addition to a plethora of conversations in Swahili, we hiked back up to the house.  In other places of Rwanda, people were picking up trash, shoveling clay and trimming bushes.

From about 8am until 11am on Umuganda, all buses cease running in addition to any form of transportion.  If you are caught on the road without a valid reason, such as catching a flight, you will be stopped and fined.  The city was mysteriously quiet as people either wandered down the road in search of work to do, or hid in their houses and performed the Umuganda for themselves and their families.

Lizzy, Kerrlene and I next to a mural that we didn't actually paint.
Our colorful, albeit basic, additions are further down the wall.

WE-ACTx Vs. WE-ACTx For Hope

After three weeks here, I was finally corrected on the difference between the terms that I'd been using interchangably: WE-ACTx and WE-ACTx For Hope.  Here's the difference:

WE-ACTx

WE-ACTx is an international NGO started in 2004 that currently raises money and awareness about HIV/AIDS in Rwanda.

WE-ACTx For Hope

WE-ACTx For Hope is a local NGO that branched off from WE-ACTx to serve as its own entitity and continue to provide clinical and psychosocial services to HIV positive patients in Kigali and Nyacyonga in Rwanda.

Ineza Cooperative

Ineza is a women's cooperative in Kigali selling handmade items ranging from backpacks to bookmarks, elephant dolls and table runners.  Their quality is amazing and these women really know how to work the foot pedal sewing machines like nobody's business!  Kerrlene and I went for a visit to their workshop in Remera this week after work.  Here is what I saw, including their room full of bags, purses and ties.  Kerrlene was even shown hwo to sew, since she recently had the women make her teddy bear a full outfit, hat included.  Now, she had a matching handband.  Yes, we are most certainly grown ups.  :)  Ineza cooperative partners with a local NGO, Hands of Mothers (Manos de Madres) to help sell their beautiful things at shops in Kigali and fairs in the States.

Wazungu buying some of the beautiful handmade stuff.

Here's their website: https://inezacooperative.wordpress.com/

Nyacyonga Again

Nyacyonga Clinic

Yesterday was my second visit to Nycoyonga, the slightly less urban clinic that WE-ACTx For Hope partners with to assist in providing care once per week.  I traveled with Edmund, our trauma counselor, and Dr. Gilbert, our clinic doctor.  It was my turn to shadow Dr. Gilbert was he finished some patient consultations.  He saw 6 patients in total, with concerns ranging from chlamydia to pelvic inflammatory disease (PID).  His adviced also ranged from giving antibiotics (Deoxycycline) to going to the closest hopsital for X rays and blood work.  

One of the HIV positive patients came in because he recently had a Rapid HIV test at a different clinic that came up negative.  This man had been HIV positive for 10 years and on ARV's for 8 years.  His wife was HIV negative, so they are considered a discordant couple.  He wanted to talk to the Dr. Gilbert because he wanted to stop his ARV's since he had now tested negative for HIV.  His wife was also encouraging this.  Dr. Gilbert was explaining the mechanism of action of HIV and why, even though he still have HIV and needed to take ARV's, the test had said he was negative.  Thus, he left choosing to remain on his medication and glad that he had consulted the doctor.  Smart man.

Dr. Gilbert setting up in one of the offices.

Edmund, me, Dr. Gilbert and Chantal.

Random fact about Dr. Gilbert:  While working in Partners in Health (PIH) in Rwanda before he joined WE-ACTx, he worked alongside Paul Farmer multiple times, who also taught him how to perform a lumbar puncture at one point.

Random fact about Edmund: Before becoming a trauma counselor, he was a self-taught professional photographer.  He used to photograph weddings and other events (which explains why the lighting on this photo is way better than my others - he helped us figure it out!).

To cry

My morning at the clinic was started with some somber faces, perhaps in light of the theft that Chantal experienced yesterday.  However, as I sat down outside her office to wait for her, a women exited from the trauma counselor's office in tears.  Wrapped in kitenge and clutching a black, fake-leather purse, she heaved herself into the white plastic chair outside his office and let her head fall into her hands.  As her shoulders heaved from the tears that were springing forth, I fetched a napkin from my purse and brought it to her. "Morakoze" she uttered and I felt helpless, not even knowing the correct response in Kinyarwanda.  Leaving her privacy to cry and be sad, I stared back at my computer and recalled the disappointing news that has surrounded the last 24 hours.  Lizzy's bitten feet, Chantal's stolen computer....and I remembered that while our pain can heal with some medicine and the purchase of a replacement computer, hers was springing from a much deeper place of hurt and sadness.  As Chantal arrived, she floated to the crying woman's side and placed her hand on her back, guiding her into her office.  The woman shuffled in slowly and with the weight of a heart that holds more grief that I would wish upon my worst enemy.  The things that these women have experienced.

Stealing

Sadly, stealing is all too common in developing countries.  No matter what the situation, it's hard to not feel violated, upset and angry.  What's harder is to forgive and move on.  Within my first week in Tanzania, I lost 2 Ipods and a set of headphones.  I was devastated and confused as to why no one seemed to know who snuck into my home.  Later, after a mutiple stolen phones and lost cash, you come to realize that items and money are transient and worse things can happen.  Nevertheless, that doesn't take away the pain and frustration you feel each time it happens and, without doubt, it will happen.  Travelers learn this painful lesson right off the bat.  However, what can hurt the most, is when something is stolen from a space that you thought private and secure.  Our clinic director, Chantal, experienced this today when her computer was stolen from inside her office.  Despite me sitting outside working on my computer, someone managed to sidle inside and take her laptop.  Her heartbreak was palpable.  While she is a strong, patient and wise women, she couldn't help but be hurt.  The words that she uttered right before leaving were "what hurts the most isn't the missing computer, but the lost documents and the disrespect."  Unfortunately, too many of us can empathize with this pain.

Our house

Here is a quick tour of the wonderful house that WE-ACTx has rented out for us to stay in.  It is located in Kiyovu, one of the fanciest, if not the fanciest place in Kigali.  The President of Kigali, Paul Kagame, is basically our neighbor.  My housemates include Lizzy, a pre-med undergrad from Pennsylvania, Kerrlene, a graduate student at Tufts (Fletcher!) and Cari, a Peace Corps Response volunteer.

Downfall of such safi digs?  The moto taxis always try to charge way too much.  Le sigh. #WazunguProblems 

African Child's Day

We were blessed enough on Sunday to be invited to WE-ACTx For Hope's celebration of African Child's Day (or International Day of the African Child, as Wiki calls it).  African Child's Day is a holidy on June 16^th that celebrates the rights and importance of children in Africa.  While it was started in honor of the children injured in the Soweto Uprising (in South Africa), it is celebrated all throughout Africa to bring awareness to the need for children's education and services.

We arrived just as the band was setting up (and rehearsing a phenomenal cover of “All of Me” by John Legend) and chatted with many of the Musicians Without Borders staff, including their community leaders that serve as teachers here and in farther villages.  As the ceremony commenced, our eyes was blessed with an onslaught of singing, dancing, poems, skits and even a fashion show.   The videos and pictures will do a much better job telling the story of the celebration than I ever could. Enjoy!!!

Here are some videos of the phenomenal dancing and singing that was performed: 

Kigali Genocide Memorial Museum

On Saturday, Lizzy and I walked to the Kigali Genocide Memorial Museum.  It was about an hour walk from our house but a great excuse to meander down the dirt streets that are so frequently avoided by wazungu in Kigali and snoop around MiniMarts that sell the million types of buscuits I was addicted to in Tanzania.  

Upon reaching the museum, we were guided into a 5 minute movie with brief interviews of Rwandans who had experienced the genocide and their feeling behind the construction of a memorial.  Kigali Genocide Memorial Museum(called Kigali Memorial by the locals) was built in 1999 to explain the genocide, provide a final resting place for those who were victims of the genocide and, serve as memorial that friends and family members could visit for prayer and peace. 

Although the museum is free to enter, you need to pay to take pictures ($20) or listen to a guided recording ($15).  Well-organized and staffed, the museum leads you step by step through the events and propoganda that brought about neighbors killing neighbors, friends killing friends and entire families being wiped up over a span of 100 days.  The numbers are staggering - some 2,000 people per minute were murdered.  The international community not only failed to act, but when they did, they inadvertently (or some may argue advertently) exaccerbated the situation.  More than 250,000 victims are buried at the Memorial Museum.

As you move from display to display, you see quotes, pictures, stories, videos and remains of the casualties that lost their lives in the tradegy.  One room consisted of hanging clothes, rows of skulls and piles of bones (not unlike the museum at Auschwitz) that provide even a meager glimpse into the sheer horror and magnitude of what happened in 1994.  The current belief is that over 1 million people (mainly Tutsi but some Hutu's as well) were slaughtered during the genocide.  Today in Rwanda it is illegal to say the words "Tutsi" or "Hutu" or identify people based on their ethnic group.

Family and friends gather around the coffins and pictures at a service of several
 genocide victums who are about to be buried at the Memorial Museum.

Lizzy and I recorded our reactions to the museum in this brief video.

Family Needs Assessment

In 2014 and 2015, counselors from WE-ACTx for Hope administered a Family Assessment Survey to individuals who were parents of a child under the age of 18 who was being treated at the clinic.  The counselors orally administered a paper survey in Kinyarwanda, the national language, and the data was input into an Excel spreadsheet for analysis and utilization. The clinic wanted to survey HIV positive parents about their children who were 18 years of age and under to determine what familial or social factors they find amongst participants and possibly draw correlations between these components and ART (antiretroviral therapy) adherence.

I spent a large portion of Tuesday reviewing the data with 2 counselors at the clinic.  It is compiled from a massive Excel spreadsheet into organized graphs based on different components of the survey, including demographics, family and income level.

In other programming...

Here is our self-narrated video of what it's like learning from our amazing cook, Serafine.  Enjoy!

Patient Visits

Today was spent shadowing a nurse while she went through her patient consults (encounters) for that day.  I'm finally starting to figure out the whole process!  Here's what I've determined so far:

1. Patient checks in to the Reception area with their HIV Tracking booklet and insurance card.

2. Patient is given a number and their chart is pulled.

• Each patient chart (Fr: Dossier) contains a colored dot that corresponds to one of the nurses.  Each patient has the same nurse each visit (unless their assigned nurse is on leave).

3. Nurse is given stacks of patient charts in the order that she should see them.  She then calls patients in one by one.

• Depending on the number of nurses present (there are 4 but on average 3 are present each day) and the number of patients, nurses see anywhere from 20-40 patients per day.
• WE-ACTx averages about 1,800 patients per month.

4. Nurse screens for TB and STI's and takes the patients weight to monitor BMI.

• A positive screening for TB is indicated if the patient reports any of the following:
• Productive cough
• Fever
• Weight loss
• Decreased appetite
• Vomiting
• Fatigue

• A positive screening for STI is indicated if the patient reports any of the following: 
• Gential discharge
• Genital itching
• Lower abdominal pain

5. Nurse evaluates patient's adherence and educates them if necessary.

6. Nurse records patients visit in their chart (Dossier).

7. Nurse also records current visit date and next visit date, in addition to any changes in medications, in each patient's HIV Tracking Booklet, Kubonana na Muganga (see below!).

This is where HIV positive patients track their current
medications (prophylaxis, ARV's) and appointment dates.

8. Nurse gives patient a prescription for their ARV's, Bactrim and any other complaints.

• Patients today also complained of sinus infection, cough and possible pregnancy.

9. Patient goes to lab for any tests, pharmacy for medications (including ARV's) and reception to check out.

10. Patient completes a guided research assessment with one of the staff about their family members and whether or not they've all been tested for HIV.