What Rural Africa Can Teach America About Healthcare

By Wendy Leonard, MD, AAHIVS

This post was first featured on Seeds of Hope on February 28, 2014. Seeds of Hope is the story blog by our dear friends at Skees Family Foundation. You can find it, along with more photos, on their website: Seeds of Hope

 

Strengthening Health Care Delivery from the Bottom Up

DSCN0076Imagine that you are Sarafina, an HIV+ mother of a daughter who has been treated for moderate malnutrition three times. The health care providers in your rural African village went through the steps required by government protocols at each visit, and say little when you return for the fourth time, as your child continues to be malnourished. This time your daughter is diagnosed with severe malnutrition and hospitalized. Despite being in the hospital for two weeks, she loses her battle to survive. You believe that the health care providers did not act quickly enough, and did not truly care about you or your child. In contrast, the health care workers felt helpless to change the situation and quietly believed that a fast death for this child may not be worse than prolonged suffering from malnutrition and poverty that would ultimately have the same deadly outcome.

Imagine now that you are 9,000 miles away and working as a health care provider in the United States. A scruffy-looking man comes into your office complaining of abdominal pain. He tells you that he drinks a six-pack of beer a day, although you suspect that he drinks more. The next step should be to refer him for treatment, but you have little faith in the resources within your community to address these issues. You decide not to further pursue these topics, and choose instead to focus on his original compliant—his stomach pain. You do an exam, prescribe some pills, and send him on his way. Sadly, this man passed away three months later from complications of alcoholism. Me and DadThe second scenario describes my father’s last few months of life. He was an aeronautic engineer who could sit for hours and draw me diagrams of the latest cool wind tunnel he was designing to test supersonic aircraft. I worshiped him—not only because he was brilliant, but also because he believed that I was bright enough to follow along. Yet, even as a child, I had a sense that he did not understand his own capacity. Although he joked freely, he had a sadness to him and a sense that he was not worthy of self-care. I was so sure that if he could see the amazing being that I saw, he would realize that he had the strength to stop drinking. Unfortunately, my father died before he was able to realize this. I suspect that his physician had felt a similar sense of hopelessness as the health care provider in Africa about his ability to influence the outcome of his patient’s health. This sense of hopelessness in health care occurs around the world every day. Even in the United States, health care providers often feel incapable of treating conditions exacerbated by vulnerability such as substance abuse, mental illness, or lack of access to healthy foods. Governments and global agencies have developed protocols to guide health care providers in these settings, but on-the-ground health workers must believe that they are capable of carrying out efforts that will lead to improved outcomes. Even the most evidence-based health care protocols will fail to reach the desired outcome if those who carry them out do not understand or believe in the interventions.

DSCN0058Now, let’s imagine a different situation. Oliva, an HIV+ mother living in rural Rwanda, gives birth. She is referred to the health center’s Nutrition for HIV-Exposed Infants (NHI) program, where she is personally provided with fortified porridge while she breastfeeds; the same porridge will be available to her six month old infant when complementary foods are introduced into her diet. Oliva is advised of what she can expect from her health care provider over the next 24 months, as well as what will be expected of her. She is encouraged to join the local farming cooperative so she will continue to have access to food after the program ends, and is referred to the artisan skills training program to learn marketable skills. Each month, she brings her baby to a health assessment where her child is evaluated for malnutrition and HIV, and she is offered health education sessions with other HIV+ moms. The nurses are confident, thorough, and engaging. When barriers to quality care are identified at the health center, Oliva and all of the HIV+ mothers in the program are encouraged to contribute their ideas to improving the system of care.

The difference in the quality of care received by Sarafina and Oliva is clear. In Oliva’s case, her health care providers have found a way to bring Ministry of Health protocols to life. They understand the rationale behind the protocols and believe that their actions will lead to improved outcomes despite their limited resources. At The Ihangane Project (TIP), we believe that self-efficacy is an essential component of successful health care delivery. Self-efficacy describes the extent to which a person believes in her/his ability to carry out tasks and achieve goals. Success depends upon front line health care providers’ capacity to provide care and to inspire community members to implement healthy changes in their daily lives. What motivates local health care providers to decipher the intent behind cumbersome health protocols and foster innovation in a setting of extreme resource limitations? This is where The Ihangane Project comes in. We believe that individuals who are living and working in their community are most likely to have thoughtful solutions. We work closely with health care providers and recipients of care to understand the existing health care infrastructure, current resources, and barriers to their ability to fulfill the spirit of Ministry of Health protocols. We consider patience and empathy to be essential qualities needed to foster engagement and long-term sustainability and weave these concepts into our four key strategic concepts as we work with communities: Partnership, Capacity Building, Data Quality, Sustainability. Partnership to Encourage Engagement & Ownership 20131223_121758The foundation of our work is based upon the development of long-term relationships with our partners in the field. One example involves HIV testing for HIV-exposed infants. Health centers are expected to do regular HIV testing at particular intervals, but we found that this was not happening consistently. In order to get context for this issue, we reached out to nurses and HIV+ mothers. Through this process we discovered that some women are fearful of learning the HIV status of their infants. This contributes to delays in testing. To counter this fear, our participants have created a Testing Log that they manage together. Within each group, a participant leader has volunteered to reach out to women when their child is due for testing, and helps to support her through the process. Their motto is “Together, We Can”.     photo7

Capacity Building to Improve Skill Sets and Increase Confidence

Every four months, TIP holds a collaborative NHI program meeting for nurses from our seven partnering health centers. Our staff introduces key concepts that explain the reasoning behind Ministry of Health protocols, and incorporates fun, interactive activities to reinforce the information. For the subsequent three months, we work with the nurses during NHI health assessments to strengthen their skills. Nurses have hopeful reactions: •“By the end of our training session, everyone was trusting that if we correctly intervene on time, we can successfully achieve the elimination of HIV transmission!” •“I was afraid to diagnose malnutrition before- I didn’t know if I was correct, and I was not sure that it would matter. Now I feel very comfortable making the diagnosis!”

Improving Data Quality to Foster Sense of Impact At Ihangane, we love data! We believe that it is an inspiring way to show that efforts have an impact. We utilize a Continuous Quality Improvement model to demonstrate the benefits of accurate, consistent data for training, staff engagement, quality patient care, and program improvements. Our staff attends health assessments, and use an objective checklist to assess skill sets in clinical care, compassionate care, data management, health education, and logistics. After receiving their scores for our initial Observational Check List, the nurses chose three areas to focus efforts to improve. We worked with the nurses to strengthen skill sets and modify their systems of care to reach their goals. For example, Ministry of Health protocols recommend that all HIV-exposed infants with severe malnutrition be tested for HIV regardless of their age. This was not happening in part because of nurses lacked confidence in their ability to diagnose malnutrition. Four months later, here are their exciting results! •150% improvement in nurses’ ability to calculate nutrition scores •100% increase in nurses’ communication of health data to mothers •300% increase in HIV testing for HIV-exposed infants diagnosed with severe malnutrition 2013-01-16_04-22-32_139 Sustainability of Programs & Health Care Recipients: We want Oliva and her daughter to continue to thrive beyond graduation from the NHI program. For this reason, TIP provided the start-up costs to establish a farming cooperative associated with each health center. All HIV+ community members are invited to participate. These cooperatives provide an essential opportunity for ongoing food security and income generation. These farmers work together to grow a combination of crops that can be taken home to their families or taken to the market for sale. Although some crops have been taken to market, the majority of cooperatives have chosen to begin by providing food to their most vulnerable members. TIP’s agronomist provides ongoing training and support to foster success. We are now working with 500 HIV+ farmers via 7 health centers!coop farming In our NHI Program, HIV-exposed infants are provided with fortified porridge for the first 24 months of their lives. This provides short-term relief for families while we are working together to strengthen their long-term food security. To foster sustainability, we are learning how to make our own fortified porridge! The farming cooperatives are donating the soya and maize needed in exchange for their start-up costs, and we are working with experts like Catapult Design to produce a quality and low-cost product. Within three years, we hope to produce enough of the porridge, or sosoma, that the health centers will be able to absorb the cost of the NHI Clinical Program. What can we learn from this experience in the United States? From scarcity comes great opportunity. Rwandese understand this and are open to new ideas that will help them reach their goals. In the United States, we suffer from a health care system that exists in silos, and is often torn between expectations of payer sources and patient needs. Interventions are often linked to funding requirements, and local health systems are strictly regulated to such a degree that ownership and innovation can be discouraged. Even more frustrating, socioeconomic barriers like substance abuse, mental illness, and lack of access to healthy foods can disrupt our ability to have any real impact. The concepts we’ve used in Rwanda are equally relevant to the United States. To truly succeed, we will need to give local communities the flexibility to rethink our response to health. I would challenge local communities in the United States to follow Rwanda’s lead by thinking innovatively about how we can work together to address the health care needs of our community.

Duteraninkunga Association in Nyange

The recent report from the Duteraninkunga Association in Nyange inspired me to pull up some photos from my last visit in January 2012.  This past winter, I had the pleasure of working with this association.  Over the past year, they have worked very hard to grow a kitchen garden on site at the Nyange clinic and this winter, they expanded to include the cultivation of farmland in the community as well.  The lessons learned and successes they have had with the kitchen garden will certainly help them as they continue to expand their project.

Association leadership standing next to the keyhole kitchen garden at Nyange Health Center:

Cabbage growing at the Nyange Clinic kitchen garden:

Duteraninkunga Association just days before beginning cultivation:

Duteraninkunga Farming Association:

James Radawich, a horticulture specialist and TIP volunteer, worked with the association to improve on cultivation techniques and expanding the project:

Dr. Avite, Ruli Hospital Director, and Michella, TIP Assistant Director of Programming. Working closely with Dr. Avite in expanding the projects and improving the health status of the Ruli District:

Updates From the Farm!

We would like to share a recent email that we received from our pilot farming cooperative in Nyange…..

Report of activities of DUTERANINKUNGA Association

 

       Hello Wendy; how is your news? For us we are well.

        DUTERANINKUNGA Association wants to wish you the good Labor Day.

       We wish to send you the report of activities DUTERANINKUNGA Association.

1.      We already finish cultivating the Ground and on the photos, you find that the culture are well because we have the rain season.

2.      We still prepare the materials to build the cow House.

We didn’t build it because we have the rain season, it rains a longtime the reason why to build in this season became difficult, on the photos you find the briquettes for building and photos of cultivated ground.

We hope that we will have sufficient  harvest because we had the good time.

Now the Project is well, we didn’t have the problems

Thank you; you will Great our Friends.

GOD bless you for your Help.

 

 

This is our onions….

 

 

This is our Eggplant and other vegetables in the ground…

This is our cabbages…

Our soybeans in the ground…..


And Our Mango Tree….

Community Nutrition – an update from the field

The following blog is composed of excerpts from a progress report written by current WDI intern Sean Morris.  It describes one of the many projects he is working on and some of what he has learned thus far.

CNW Program progress: I have assessed the community nutrition worker (CNW) program through direct observations of their work in the field, and through surveying large samples of CNWs from various health centers in the Ruli District Health System. My partner, Huriro Uwacu Theophila, is a biostatistics student at the National University of Rwanda.  We have worked to produce surveys in Kinyarwanda for both CNWs, and participants in the malnutrition program. So far, we have surveyed two of the seven Ruli Hospital CNW networks, and I plan to schedule transportation to the remaining five CNW monthly meetings as they take place in July. The information gathered in these CNW surveys includes: each individual’s satisfaction with the program; identification of resources necessary to perform their work; description of the food security situation in their villages; an assessment of the knowledge required to perform their work; and their current outreach to people living with HIV.  I will use the data from these surveys, along with the observations that I record in the field to see how far the CNW program has come in implementing the Rwandan community based nutrition protocols (CBNP), and to identify gaps in their effectiveness in combating malnutrition in their communities. After gaining a full understanding of the CNW program, I will work to determine cost-effective approaches to meet their material needs, and provide them with focused training and education opportunities related to nutrition. This survey has the potential to act as an on-going worker satisfaction and knowledge tool for the CNW program.  Such a tool would allow the CNW network and its administrators to continually, and accurately improve the program, monitor the success of any recommendations that we implement this summer, and foster collaborative problem solving within the CNW groups.  Improving the CNW program will advance the nutritional status of the villages in the Ruli catchment area, and will lead to reduced resource constraints, funding dependencies, and operating costs at the malnutrition center.

Satisfying moments and compelling experiences: One very encouraging aspect of the CNW assessment has been the enthusiasm and creativity I have witnessed among the CNWs themselves.  When they begin the surveys, or if I ask them directly about the improvements they want to see in their program, they tend to become very excited.  I sense that they are reminded of how important their work truly is in the fight against malnutrition in the district, and they relish the opportunity to share their opinions with someone who is genuinely committed to strengthening their program.  The survey results will be very useful in identifying points of intervention and improvement to their program, but the very act of asking them what should be done seems to inspire a strong pride in their work, and an increased stake in improving the nutrition situation in their villages. Apart from the responsibilities of my internship, I have been able to participate in the monthly community workdays – umuganda.  On the last Saturday of each month, every community member in Ruli will meet together to endeavor in a public works project.  Most recently I witnessed several hundred people working together with hoes and shovels to level a half-acre area of land, the future site of a new school building.  Such a project would have required a bulldozer, and an afternoon’s time in the US, but it would have lacked the social phenomenon of many people coming together to improve their community.  People would work, then take breaks to converse with their neighbors, and to point out the hilarity of the one American struggling to keep up with their work!  This communal connection to the development of Rwanda is not only vital to the growth of the town; it is also enormously beneficial to the social wellbeing of Ruli.  This idea is one that I will certainly take home with me, and work to include it in my future community. 

Saying Goodbye to a Friend

Today was a very sad day. Today, one of our participants in the Nutrition for HIV-Exposed Infants, Daphrose, passed away at the age of 39. To meet Daphrose, you would never know of the traumas she faced in her life. She was always smiling and laughing. The joy with which she played with her daughter was so very touching. She jumped at the opportunity to learn how to make baskets and banana leaf cards, although her true dream was to return to secondary school.     IMG_2891.jpg

What is not clear from meeting Daphrose are the losses that she carried with her. The first hint is within her home. She lived with her two brothers, and her sister next door, in a relatively new ‘umudugudu’. The home is large and well-made, although strangely lacking in furniture. There are wires that travel up the wall to an imaginary light bulb, but no electricity. The story is that her mother died when Daphrose was young. Her father lived in this home with his children, until a few years ago, when he packed all of the furniture (as well as the family’s lone solar panel) and moved to another community to begin a new family. Through this experience, the brothers and sisters became even closer and supported one another through the challenges that they faced. 

When Daphrose became pregnant for the first time, she thought this would be the opportunity to give her daughter what she had lacked. Sadly, this child was born with HIV and died shortly after she was born. She celebrated when her second child was HIV-. But, in a terrible twist of fate, her second child also died. This time, the cause was unclear but thought likely to be due to malnutrition after Daphrose stopped breastfeeding. When her third child was born, she was absolutely determined to avoid the tragedies of the past. She took her HIV medications diligently, followed all of the recommendations for breastfeeding, and joined our pilot group to ensure that her daughter would not develop malnutrition when she stopped breastfeeding. Indeed, her daughter thrived! She is HIV-, and did not suffer the complications of malnutrition as her other child had.

Life was looking good for Daphrose and her young daughter! Tragically, in January, Daphrose became very ill. She went to the hospital, where she was found to have an invasive form of pelvic cancer that is caused by the wart virus (HPV) and is stimulated by HIV infection. She was sent to the referral hospital in Kigali, only to be sent back to Ruli with the news that nothing could be done. Daphrose was in the hospital for 3 months before passing away from this aggressive cancer. Throughout her hospital stay, her sisters of the Ihangane Artisan Association visited her daily to provide food and emotional support.

 Her terrible loss is a reminder that there is still so much work to be done. Her passing weighs very heavily on our entire team, her family, her fellow program participants, and co-workers at Ihangane Association. Especially for the Rwandans who must watch these tragedies every day, it feels as though when they find a way to “plug one hole”, they lose someone to another hole. Despite this, their faith and perseverance carry them through and they continue to do their best. In Rwanda, I often hear “you must try” and “you can do your best”. For those like Daphrose and her daughter, we must try and continue to do our best.

Written on May 17, 2011 and posted later due to lack of internet access in Rwanda.

IMG_2892.jpg

 

Buhoro, Buhoro…..

Part 2: This is the second entry in the blog series by Michella Otmar about the Nutrition for HIV-exposed Infants (NHI) home visits during the Summer of 2010.

Climbing a steep dirt path, we approached a newly build house with a stunning vista of the valley below.  I stopped for a second to catch my breath and take in the view.  We were in Coko, visiting Olive, one of the participants in the NHI program.  She walks two and a half hours each way from her home to Ruli District hospital to participate in the NHI program.  She does this in her flip-flop shoes, her infant child strapped to her back and her toddler in tow.  Though petite in stature, she is a strong and resilient woman.  At the time of our visit, she and her mother had just completed the construction of their new home, a project they completed by hand and on their own.  They built this new house to replace the home they lost in a landslide just a couple months before.  Though the house was cold, without a floor and built on yet another potential slide area, it was a vast improvement to the alternative.  This scenario was not unique to Olive.  Another participant also had lost her home in a landslide and was living in a new home, adjacent to the first house. In both cases, there was concern about damage that could come with the next rains.  One woman lived with her infant in a single windowless room no bigger than a walk-in closet.  Most of the women cook over an open flame indoors where they are exposed to the exhaust of the fire.  All the women dedicate hours to collecting water and preparing it for their children.  None have access to electricity in their homes.        

Completing home visits with NHI program participants was perhaps one of the most important components in helping shed light on the growing complexities of health as it relate to our patients.  Taking medication, receiving formula for one’s infant and food supplementation, is only one small part of improving or maintaining health for our participants and their children.  For many of them, access to the basic resources such as clean water, heat, shelter, food, and medical services, presents a profound challenge.  And yet these basic resources are instrumental in maintaining physical and emotional health. 

In working with NHI participants, one cannot simply look narrowly at just one aspect of health and ignore the rest.  And taking on all aspects of the problem at once would be impossible.  As we assess and address one area, we see a dozen more that need attention.  It seems that this is the heart of the challenges faced in global health and what can seem to be an overwhelming situation.  Completing the home visits certainly exposed “the dozen” additional issues, but is serves as a reminder to keep evolving the projects to include the interweaving factors of health.  They truly are interdependent.  At the year mark of the NHI program, participants were grateful to have been included and eager to continue with The Ihangane Project.  Many of them began a training program in basket weaving and handcrafts with TIP’s Women’s Association & Reinvestment Program.  This not only provides income generation for this vulnerable population but also social interaction and community building. While traveling in Rwanda, Wendy and I would often be told (and then we would remind each other)……. “buhoro, buhoro” meaning ‘little by little’. 

~Buhoro, Buhoro each step makes a difference~

This video shares some of our experiences with Olive and her family:

Home Visits

by: Michella Otmar Part 1: This is the first entry in the blog series about the Nutrition for HIV-exposed Infants (NHI) home visits during the Summer of 2010. In the summer of 2010, Wendy and I traveled to Ruli, Rwanda to work on many of The Ihangane Project (TIP) programs.  One of our central focuses was to evaluate the progress of TIP’s Nutrition for HIV exposed Infants (NHI) program and assess for its potential growth.  At this point, the program had been distributing food supplementation in the form of Sosoma and formula for approximately one year to the 7 participants in the pilot group of this project.  Upon our first meeting with the group since Wendy kicked off the program the year before, it was clear by visual assessment alone that the program was benefitting the nutritional status of the infants. These seven infants appeared to be of age appropriate growth, development and socialization. One of our objectives was to really look at the requirements of the program and see how much of a challenge it presented to the participants.  It was evident to us that the pilot group was actively participating, but we did not want to assume that their enthusiasm translated to mean that the requirements presented no hardship.  Some of the program requirements state that participants attend bi-monthly meetings with the VCT team, obtain a sippy cup for their infant and use boiled water when preparing the infant’s food.  But what did that mean for the group?  How far were people traveling to attend meetings and by what means did they get there? What sources of income did they have?  Where did they collect water and how was it prepared? Where did they collect firewood and how long did this take?  We had many questions about they way they lived and so we asked the group at our first meeting, “Can we come visit you at your homes?”  Everyone agreed and so over the next month, we visited the homes of each of the women.  This was perhaps the most insightful experience of the entire trip. Life has presented many circumstances in which the phrase ‘things aren’t always what they seem’ has been an appropriate statement, but at no other time in my recent memory has it been more apparent than it was during our home visits.  It was during our first meeting at the hospital that I had begun to formulate my judgments and opinions about the women and the program. As the women assembled together for our first meeting, I saw women dressed in bright African cloth.  The vivid colors covered their bodies and crowned their heads.  Children strapped to their backs, cleaned and primped in what seemed to me to be their Sunday best.  Based on my first judgments, it seemed to me that most if not all of the women had running water and perhaps even some electricity.  I had already seen some houses around Ruli and I was now imagining household scenarios for each of the women. Had I only met with the participants during our scheduled health center meetings, I would have kept my first judgments intact and maintained a blissful ignorance to the challenges these women faced.  I would have never learned that two lost their homes in the past year to landslides and both rebuilt their homes by hand.  None of them have electricity or running water for that matter.  All but one have dirt floors, all but two cook with an open flame in an enclosed space. Four of them have other children who have suffered with malnutrition in the past.  None of them are married and four of the women are heads of their household. And one participant walks 2.5 hours one-way to attend meetings at the health center. The shock of the situation was felt not only by the American team, but also our Rwandan counterparts. Karekezi Sylvere, the HV nurse who coordinates the program, explained, “Each of our patients comes to clinic clean and well dressed. They all do everything we ask, and they always arrive on time. I was very surprised to discover the ways that they are living. With each home visit, I saw a new and sad reality of what it means to be poor”.  The home visits exposed the true reality of hardship endured by rural Rwandan poor and has shed light on the numerous needs of our participants.  Click on the photo below to get a glimpse into our experiences: