Expect the unexpected

Due to my stare-down encounter with our room gecko last night (a story for another day), I bolted awake at the sound of my alarm this morning, eyes wide, ready to escape if the gecko was in site. But from my observations so far, they seem to retreat behind the AC by morning and do not come out until the evening, around dinner time. And yes, not just ‘it’, but ‘they’! We are at 3 room geckos and counting.

But back to life beyond my gecko troubles. Over the past two days, we have sunk into the rhythm of facilitating focus groups and began to accept the inevitable wet stickiness of our bums soaked in sweat after each session in 38 degree weather. The thoughts and ideas the community has shared with us are invaluable! Just from a cursory review of the information we have gathered, it is clear that there are large gaps in knowledge that we had not anticipated. After a night-long meeting, we decided it is time to accept that our trip will not be unveiling as planned (just as last year’s team had warned us of, although we were keen to over-prepare and prove them wrong), and to face the unexpected and make new plans. Originally, we only planned to teach schools and general community members in the villages about sickle cell disease. But because it is young children in their first few years of life who are most effected by the symptoms of sickle cell disease, we feel the need to put a focus on educating mothers about screening not only themselves but their children too. Partnering with Creating Possibilities (CP) Nepal could not have been a more perfect fit to take on this challenge of reaching out to the mothers of this community!

CP does amazing work to empower the women of Dang, and they have graciously agreed to help us tackle this sudden change of plans. Among the various programs CP runs, they hold Mother Groups which are a gathering of 40-60 mothers, during which we were granted a chuck of time to introduce sickle cell disease. Until late last night (and by late I mean 10pm, for in Nepali time, my bedtime is 9pm), we huddled around in bed and pumped out a new education module specifically for women in the Tharu community with little or no education background. It is our hope that these sickle cell education session will continue to be run by the CP staff leading Mother Groups 4-6 times a year.

The amount of help we have received from the CP staff and others in the community is beyond incredible! Many of the staff came around to help as we sprawled our dust covered bodies across the floors of the dinning hall to make posters in Nepali for the Mothers Groups. This was no fancy poster designed on PowerPoint and printed on glossy paper; we did it old-school style with newsprint paper, markers, colour pencils, and laminated them with masking tape! It took us all back to our arts and craft days, or at least some of us. Vikas was quick to recruit Spandan to his aid and Mike wasn’t far behind searching for Barsha to be his artistic counterpart.
As we dotted our I’s, crossed our T’s, and packed up for the day, we experienced the coolest air we have had in days! The wind was howling, bringing with it endless dust but also thick clouds that blocked the blistering sun. We are in for a night of rain with our geckos.

– Sophia

New Project Directions

May 12^th marked our third day of focus groups with the community. At this point, we now had open discussion with a variety of groups within the community including female health post workers, individuals currently living with sickle cell disease (SCD) or sickle cell trait, and those who had gone through either the screening process or both the screening and diagnosis process for SCD. As Vikas mentioned in his prior post, the focus group questions were focused primarily on the process of screening and diagnosis and identifying any barriers to gaining access to these, as well as community education around SCD that existed and ways in which this could be improved. Needs assessment questions were also asked of every single community member, to identify their general health care goals going into the future. Needless to say, we learned new valuable information that would ultimately change the project going forward.

After thorough debriefs within our team, we reminded ourselves of the final end goal for all of these Nepal SCD global health projects that happen each year: to lobby the Nepal government to create a nation-wide screening program for SCD for every infant that’s born in Nepal. With this end goal in mind, and the new information learned from focus groups, two new project directions have emerged that we are now currently working on. The first is the fact that infants and young children should really be our main population of focus. SCD is after all, more severe in children, and if we are to provide data to the Nepali government in the hopes of producing a screening program for children, then it would make sense to generate pilot data on children. This fact, in conjunction with a new found need for SCD education among mothers of the community, led to our decision to create educational sessions specifically for mother’s groups, because after all, what better way to encourage the screening of SCD in young children than through educating their mothers. Working together with Creating Possibilities (CP), we’ll be running 4-6 educational sessions with mothers groups throughout the community each year, with a focus on encouraging the screening of young children. Our team will run the first one on May 15^th, and CP will run the other 4-5 sessions.

The second new direction is related to the methodology of educating the community on SCD. We’ve learnt that a favourite pastime to pass along information within the community here; is through the use of drama and performance. So putting our best DiCaprio and Stone faces on, we set out to produce the most memorable SCD play these villages have ever seen. Wish us luck!

– Michael

Focus Groups Galore

Kevin here. Today marked day two of our needs assessment and focus group sessions at Unako house. As with yesterday, our knowledge of the local Tharu community’s health concerns greatly multiplied with each focus group session. Qualitative interviews were gold mines of information. Every group provided us with a unique point of view and helped me observe important realities that I have overlooked in the past.

Prior to embarking on this global health trip, one of my biggest concerns was whether we will be able to create a sustainable project that truly improves the quality of life for the local community. Realistically, each cohort is only able to spend around a month’s time in this region of Nepal to help implement changes. What I am unsure of is whether during the remaining 11 months, our project results in long-lasting positive changes for the community. Given this, a major learning objective for me was always understanding how our team can ensure that we are creating a truly sustainable health project that improves the quality of life for those with sickle cell disease. The focus groups and needs assessments became great ways for us to work towards this learning objective. We looked to identify gaps in healthcare in the Tharu community and their understanding of sickle cell disease. We asked them about potential projects and whether they would find them truly beneficial.

With one focus group we found that many do not understand the difference between the screening and diagnosis process. Here in Dang, to get a diagnosis, you have to travel 3 hours to Nepalgunj, a city that provides electrophoresis, which is needed for sickle cell diagnosis. Furthermore, others do not understand the difference between sickle cell disease and trait. This gap in knowledge became quite problematic. One individual who has already been diagnosed with sickle cell trait looked to once again return to Nepalgunj for another diagnosis process, thinking that their trait has worsened and progressed into the disease state.

With many members of the Tharu community lacking essential knowledge about sickle cell disease and difficulty obtaining diagnosis after the screening process has led our group to examine our project objectives. Our overall objective is lobby the Nepali government to screen every Tharu neonate at birth for sickle cell, and we still very much want to work towards this goal. Working towards this goal will create a sustainable future for the local community, empowering those with sickle cell disease to take action towards alleviating many of its symptoms. However, the foundation of this goal is built upon the local community having the necessary knowledge and understanding of sickle cell disease.

Thus, our team has decided that the focus of our project is to create more education modules and to teach those who will be leading the modules for the upcoming year. It is definitely an ambitious goal and with the days counting down now faster than ever, our team is really working hard to achieve it. Will update soon.

Needs Assessment

Today marked the start of the needs assessment portion of our research project. The needs assessment is a new focus this year and is a critical component to better understand the barriers to healthcare (with a focus on sickle cell) that the Tharu community faces and will help shape the future direction of the project. Each day we will be conducting focus group interviews with a number of community members, including individuals who have experienced the sickle cell screening process, have been diagnosed and/or screened positive for sickle cell and healthcare workers and authorities. Today, Creating Possibilities (CP) organized 24 healthcare workers and managers from a nearby Health Post to come to Unako House to commence the first batch of focus groups. Our team split up into four groups to hold 4 simultaneous focus groups consisting of 6 participants (healthcare workers) in each. Because most participants spoke only the native Tharu language or Nepali, each group had a translator (a member of the CP team, to whom we are so very grateful for making these interviews run smoothly). 

The intent of the focus groups was to ask the participants questions related to healthcare access, resources and availability in the community and then encourage a lively discussion among them. A large theme that emerged in relation to sickle cell disease and healthcare in general, was the need for an increase in community awareness. For instance, they reasoned schools should place a larger emphasis on educating students about sickle cell disease. This would hopefully encourage them and their families to get screened. Further, having a proper understanding that sickle cell is a genetic disease and non-communicable may help decrease stigma, such as the incorrect belief among some that the disease is communicable and contractable through contaminated food. An increase in awareness is needed not only to encourage screening, but for also for those that already have been screened. Several participants noted how individuals screened positive for sickle cell disease are not properly informed of their options afterwards, including where they can receive treatment, how it will be funded, etc. 

After all the focus groups were completed for the day, our team got together to go review our first day of the needs assessment, the answers we had received and how it could be improved. It is safe to say that the themes we elicited during the interviews will be extremely valuable in helping identify gaps in Tharu healthcare and where resources should be allocated to bridge these gaps.

– Vikas Sharma

Zoom Zoom

Written to the tunes of the song  “Let’s Go” by Khalid.

Rumrum! (hello in Tharu)

Our second full day in the district of Dang was another beautiful, blistering hot 35 degrees. We left for the day as the heat began to settle in and humidity enveloped us until we would return to our air-conditioned rooms in the evening (for which Sophia and I are still endlessly grateful). Today was our first day visiting local schools and teaching lessons about Sickle Cell Disease to the group of people whom it might affect. We were excited and nervous on our now-to-be daily bus ride through the rural villages and farmlands of the Tarai (Nepal’s flat region). As the dust began to build up and the rural scenery of farmers herding cows and goats and girls in uniforms riding their bicycles to school passed us by, we prepared ourselves for a challenging day with 10 classes to teach in the morning and 8 in the afternoon.

The first school we visited was a government school in which classes were divided into English Medium and Nepali Medium. As we got off the bus, we were greeted with confused stares from a group of young children playing in the playground. They were perplexed by the site of 8 foreigners in matching T-shirts and kept a distance, but we were hoping we would warm up to them, and we did! The teachers enthusiastically received us and seemed excited for us to teach as many classes as possible, specifically the Nepali Medium classes. We were lucky to have with us four incredible CP workers and friends who would translate for us: Sam, Deepa, Barsa, and (sweet baby angel) Spandan. Kevin and I set out to teach our first class of the day- a Grade 8 Nepali Medium class. It was certainly a challenge! But, Kevin and I were ready to learn how to navigate the language barrier as we’d been trying to learn a bit of Nepali and Tharu in the previous days (shout-out to Kev for practicing his Nepali in his room before bed for the past few nights, and an even bigger shout-out to Vikas for putting up with Kevin speaking to himself in makeshift Nepali for hours. He’s been really trying and I think it’s certainly paid off! He even got called cute today by a few girls while conversing in Nepali!).

Barsa, who is a Grade 12 student on her summer vacation before college and one of the students sponsored to attend school in Kathmandu who was living in the CP house, has accompanied us since the beginning of our travels from Kathmandu to Dang. She was a true gift to Kevin and I today as she helped us translate to Nepali while we tried to explain what is an infection, how Sickle Cell Disease is inherited, and antibiotic resistance to a group of students who barely understood any English. After learning a few key words in Nepali (red blood cells=rato rocta cos, infection=sanskraman, germs=kitanu, and a few others I’ve forgotten and Kevin probably still remembers) and teaching the kids a few parts of the human body in English (which they were extremely enthusiastic about, especially knees…), we felt the positive feedback from the students and managed to bring across our key points. Despite the heat, exhaustion, and occasional stomach cramp (apparently ‘Dal Bhat power, 24-hour’ is challenging for my digestive system), it was a rewarding feeling to earn the children’s enthusiasm and teach them something that may make a difference for them, their families, or friends. As we continued on from Nepali Medium Grade 8 to Grade 9, and eventually Grade 10, we had gotten the lesson plan down pat and Barsa had become an expert translator on Sickle Cell Disease.

Meanwhile, Vikas (pictured), Natasha, Jesse, and Sophia taught the younger kids about hand-washing using the glow in the dark gel provided by the Do Bugs Need Drugs program.

As we moved up the grades, class size grew larger and it became more challenging to engage all students, especially when there were a couple of dominant students whose English was better than the rest of the class. We found it particularly difficult to engage the female students. When we asked the class questions, it tended to be the male students who responded quickly and participated most, and although we tried to specifically engage the female students sitting in the back of the class, it was often a challenge. It seemed the girls were less confident in sharing their answers and would often mumble something under their breaths instead of raising their hands and sharing their answers out loud. I hope the continuous work of groups like CP as well as our school visits managed to empower at least a few female students to speak up and be proud. Later, I learned from Alice and Mike that a few of their female students were engaged and participated lots, so it was encouraging to hear that low female participation is not uniform across the board at the school. However, I still hope that continued female student empowerment will encourage increased participation of girls in school.

After a brief lunch break of roti, shrimp crackers, and refreshing watermelon, we returned to work and headed off to a private school in the area. The heat and heavy food made it difficult to get off our buttocks, but as soon as Spandan and Deepa said ‘zoom zoom’ (=Let’s go in Nepali), we sprung up and got ready for an afternoon of teaching. We learned that the majority of the schools in the area are private schools as their level of the education is much higher, and CP helps sponsor children to be able to attend these schools. The difference between the level of English in the private and government schools was enormous. Kevin and I taught grades 8 and 10, and we didn’t even really need Barsa to translate. The students understood everything we said- we even taught them about the relationship between Malaria and Sickle Cell Disease and they were incredibly enthusiastic to learn! When we asked the students about the consequences of Red Blood Cells being sickled, one student even shouted “low immunity!” and later exclaimed that we can prevent infections by “increasing our immune power”. The higher level of enthusiasm from the students in the private school could have been partly due to the fact that they understood us better, but they were also thrilled to watch us attempt to speak Nepali. We even got a bow-warranting round of applause for our introduction in Nepali from the Grade 10 class. As we were leaving the school, a group of girls stopped us with huge smiles on their faces and asked for our names so they could say goodbye. Overall, in both schools we visited today, both the staff and students were incredibly welcoming making for an extraordinarily humbling experience teaching the students and learning from them.

At the end of a long day, as the sun began to set, we headed back to our hotel on our beloved bus, watching the beautiful rural scenery as girls in uniforms passed us on their bikes on their return home from school. The last layer of dust settled on our sticky bodies and we danced to the tunes of the Nepali Top 40’s we have become very familiar with over the last week. Here’s to another amazing day tomorrow – zoom zoom!

– Maya

Unako

May 7^th was the first full day our team got to spend in Dang after travelling by plane and bus from Kathmandu. The previous day of travelling in the hot sun(… extremely hot…!) left me quite worried for what was to come.. That being said, it was actually quite a nice morning seeing the team and enjoying a nice weekend breakfast consisting of eggs and toast (+ coffee!!!).  After breakfast we tossed on our sunscreen (a lesson learned form the previous day) and headed on our way to the Unako House in Ghatawa to be part of a celebration of life/memorial for Unako Chaudhary.

Who is Unako and why is her name the same as the house? Well for starters, Unako means “a place for her” in Nepali, and the Unako House is the center of operations for IWEN, which supports women and girls of that area. In 2014, Kevin Edgecombe and Dinesh Sapkota encountered a little girl during their work with IWEN in Nepal who did not have a name. This little girl made quite an impact on them, and when they realized she did not have a name, they gave her the name Unako… after the house. However, in 2015 Unako passed away due to an infection which was preventable at the tender age of 3. While talking with Kevin Edgecombe (president of IWEN) today, he said that the Unako is not unique in her preventable passing and she is a big motivator in what drives IWENs work today.

Now that we talked about who Unako is, I hope we can understand why her memorial service is quite a big deal. It was a remarkable experience to see so many Nepali people come to the service and pay their respect to the young Unako (the entire floor was packed). A number of touching speeches to honour Unako were made, from family members to our own team lead… Alice (who gave a remarkable speech on behalf of our team towards Unako and the affect she had).

After the speeches had commenced in the service, two beautiful girls came forward and danced in celebration of the life of Unako, followed by another who actually brought our entire Sickle Cell Team onto the floor to dance with loud Nepali music over the speaker. I can’t say we were the most fluent Nepali dancers, but we tried our best and had a great time on the floor… After we were pulled up, more and more people from the crowd started coming in to dance, and pulled some of the members of our team from the fringes of the “dance floor” to the centre. To be welcomed onto the floor to celebrate the life of Unako (a girl I, nor any of my teammates had ever met) was an honour and something I will never forget. After the dancing came the food (yes the house made food for all those in attendance, quite a large order… but they made it work in a delicious way). Our team ate and shared laughs side by side with a group of Nepali women who ended up singing us a song (a capella I might add) for us to dance to before heading down to the office to tighten up loose ends of our project for the next few weeks. All in all, it blew me away that one little girl could bring so many people from all over the world together to enjoy a brief amount of time together to share the spectrum of emotions.. from sadness to happiness all within a few hours.

-Jesse Spooner

(Also saw this cool little guy just outside Unako house)

Rural Nepal – Here We Come!

Hey to all the lovely humans following along with us on our project!

The last time I was writing one of these bad boys the team was in the thick of exams and it felt like a lifetime away from this day. But as time would tell, here we are sitting on a lovely 38 degree weekend in about 2L of our own sweat after only an hour in Lumbini’s heat and humidity.

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We left Kathmandu early this morning and headed for our weekend adventure to Lumbini. We spent the morning touring around the birth place of Buddha with the help of our sweet baby angel Spandan guiding us around. While this experience was incredibly beautiful, I’m going to refer you to Lonely Planet to read up on all of the culture and heritage that this amazing spot held – because there’s no way I could do justice – and because I wanted to share a little bit about how this first experience in a more rural area of Nepal affected me. When we first entered the area with the many temples celebrating the birth of Buddha, we were surrounded on either side by Nepali mothers and their children pleading for water, food and support. Whether it be with our Global Health training or small team meetings, we’ve had the conversation time and time again about how we believe is the best way for us, as visitors, to support a country – not by providing and leaving, but rather by working towards creating sustainability in the communities. But having said that, it hadn’t prepared me to see the need in these individuals lives, and it felt especially so as a small boy only up to my knees followed me with desperation – arms wide open asking for help for him and his mother.

As we continued past the young family, there were more stories like this – men with legs too weak to stand folded on the dirt ground, and women earning their daily pay requesting visitors to pay for outhouse use. These small stories of lives continued and stick out clearly in my mind – I won’t speak for anyone else on the team with this, but for me it was the first time I’ve seen such a divide and contrast of need between people living in such close quarters and the first time I’ve felt so unsure and helpless with respect with how to help. I don’t mean to share these this experience to mean all bad, or to cast the light on what was a beautiful, cultural and growing experience, but only to share what was for me, the first time seeing that true need for support in these rural communities of Nepal. I’m really grateful for having this experience..

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As we left Lumbini for Lamihi, where we’ll be spending the next two weeks, we hopped our sweaty selves – and I mean straight of the shower sswweeeaatttyyy – onto a 4-hour au-natural window AC bus ride. We passed along families building houses, mothers carrying for their newborns, men carrying fresh cut wood from the nearby forests on their bicycles, and women carrying fruits on their heads. We passed small rivers where women washed clothing while their children swam in the heat, and markets where local vendors were selling their crops. All to the what I imagine was some authentic Nepali music chosen by our driver, sometimes overshadowed by the oh so familiar and frequent honking of the Nepali drivers. When we got to Lamihi, Dinesh greated us with his incredibly welcoming friends (as usual), amazing food, glorious rooms with AC (to which I truly don’t know if I’ve seen Sophia more stoked), and we’re looking forward to getting to Dang for our first day tomorrow where we’ll be getting to the know the rest of the Creating Possibilities team here in rural Nepal.

ALL MY LOVE, ENJOY THE PHOTOS XXOXOXO

Tash

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A Farewell to Kathmandu

As we piled into our van this morning with our unofficial tour-guide / babysitter / saviour, Spandan, I was impressed by the routine we had established in our short time in Nepal. Another day of class teaching? Just another chance for Vikas to “forget” to wear his team T-shirt to lessons :). It had seemed we had all settled in and were comfortable. However, I was quickly reminded that you can discover new things everyday. Our entire team was fascinated when, out of nowhere, Jesse applied eye drops by squeezing the bottle ferociously at a 90 degree angle to his face.

After some lively discussion about how Jesse’s eye drop method may not be the most efficient, we arrived at Kavya School with the help of Maya’s extensive use of Google Maps. We quickly fell into the rhythm of moving around classrooms, and I found myself again impressed with how easily the students picked up the sickle cell material. The level of interaction in our lessons so far has been amazing – and the kids bright and lively. We capped off our 8 sessions by playing some games with the students and discovered that the unofficial UBC FoM sport of ping pong is truly universal (Kevin even found a new BFF with a young student at Kavya who lived in Delta for years!).

After a delicious late lunch at Spandan’s family restaurant, we headed off to Patan Hospital.  There we met Akhanda, a connection from last years team, who showed us Patan’s facilities and discussed the medical education in Nepal. While there were some notable differences, such as us learning that people in Nepal can get direct access to specialists at hospitals without a family doctor involved, there were also some incredible similarities between our schools. From PBL cases to Heartfelt Image competitions, it was interesting to see how our schools have been linked (mostly through the work of Dr. Carol-Ann Courneya). Although, I will say I think our team realized we no longer have any right to complain about OSCEs – who knew the standard 38 stations at Patan was even possible?

Unfortunately, our time in Kathmandu is coming to an end and we’re heading off to our last dinner in the city (with Jesse ready to dad-dance the night away until our flight to Dang tomorrow at 8 am). We’re excited to get to the bulk of our project and to experience rural Nepal. But, I speak for everyone when I say, we are sincerely thankful we had the chance to meet the incredible people in this city.

We came, we saw, and we will not forget the life harrowing experience that is driving around Kathmandu streets.

– Alice

Holy hail

This morning I woke up to the usual ray of sunshine peeking through the window cracks and was greeted by the now familiar cool damp morning air. With eyes still half open, casually scrolling through notifications that have accumulated over the night, came the first of several surprises of the day: Dr. Santa Ono, president of UBC, shared the Penticton News article on our project! It is amazing to learn that our project has reached the eyes and ears of those outside of our usual friend and family circles and have touched people we never thought we would. It is so exciting to see that we were able to increase awareness about our cause and that the information continues to be shared throughout different communities.

Excited and inspired by this pleasant surprise, our team gathered over a lengthy breakfast to reflect upon our first few teaching sessions. I personally have been been blown away by how interactive and eager the kids are to learn and amazed by the level of understanding they are able to walk away with from these hour-long sessions. Even in the youngest grades we taught, classes of grades 5 and 6 (or as they call it here in Nepal standard 5 and 6), children challenged us with complex questions such as “how did sickle cell disease first start” and “why is there more sickle cell disease in Nepal”. I have to admit, explaining genetics to children who have only just learned about red blood cells for the first time 30 minutes ago is no easy task. Nevertheless, we put our heads together and ironed out some kinks in the teaching sessions in preparation for the bulk of our education sessions in Dang next week.

The afternoon was dedicated to exploring the culture of Nepal. We set out to the Kopan Monastery, where we learned the teachings of the Buddhist Bhavacakra, the circle of life, and caught a glimpse into serenity and calmness that is practiced by those who live there. Then we ventured to the Patan museum where we briefly learned the history of Hinduism through the art on display. While admiring the central courts of the museum, we found ourselves caught in the midst of a hail storm, with ice the size of gumdrops! But that was not the end of our surprises for the day. As we ventured into the exhibit in the attic of the museum, the power went out, leaving us in the darkness of narrow halls and nervous chuckles. By the time we found ourselves back out in the open, rain was pouring and magnificent bolts of lightening split through the sky. We were soaked in seconds. And this is said to be only a slight preview of the anticipated monsoon season to come.

– Sophia

Monkeys and Morality

Today was an unreal day. May 3^rd marked our second round of school visits, visiting the Reliance Residential Higher Secondary School, a private school in Kathmandu. This educational session was certainly different from the one yesterday. This time we split into groups of two per classroom, teaching grades 7-10. Sophia and I taught the grade 10’s and I couldn’t tell if we had slowed down our pace from yesterday or if we simply had less time for the session, but either way it seemed to go a lot faster than the sessions yesterday. The children were incredibly respectful and well mannered: standing up as we walked into the classroom, raising their hands for questions, participating fully. The grade 10’s level of knowledge around basic biology was impressive to the say the least as well, asking very complex questions about SCD at their level.

An interesting character that we met today who I believe was a key reason for the success of the school was their principal and founder, Mrs. Anita Dong. Anita, or “Ma’am,” as the students address her by, was an endearing woman who emphasized the value of teaching morality to her students as a cornerstone of their education as human beings. You could tell that these moral values had been materialized through the very workings of the school itself and I truly believe that the children attending Reliance Residential will benefit immensely from this.

Following the school visit we took a pit stop for a late meal at a local Indian restaurant where we dived into what was possibly the greatest paneer butter masala of life. We then capped the day off by visiting the famous Monkey Temple of Kathmandu. This temple offered an incredible view-point overlooking Kathmandu, filled with vendors, Buddhist prayer flags and of course monkeys upon monkeys. To me this has been the most beautiful spot that we’ve visited so far and my personal favourite place to visit in the city. Did I mention you could get prayer flags there for 200 rupees? Talk about a steal Durak.