By Cameron Ehsan
Featured photo credit: Praekelt.org
As a community health worker (CHW), Chikondi is viewed as a beacon of health and wellbeing in his community. He is tasked with administering primary health services and educating community members on preventative health measures.
In rural Malawi, where Chikondi lives and works, health facilities are often far removed from rural areas, making him one of just a handful of individuals who can provide basic primary health care. With the nation’s high infant mortality rate and HIV prevalence, and the risk of major infectious disease, giving CHWs the tool to execute their mission has never been more critical.
But despite the critical role that CHWs play, they are often overloaded and underprepared to care for their patients. Chikondi faces these challenges on a daily basis. He often has to travel long distances to reach patients in remote settings to conduct home visits.
“There’s a transportation problem,” Chikondi said. “We are not using motorbikes, we are using bicycles and traveling distances of 20 to 30 kilometers — it’s very challenging.”
Even after reaching the patient, though, Chikondi and other CHWs are faced with another challenge: the lack of supplies, medication, and funds to support patients.
For Fatima, a CHW supervisor in Sierra Leone, providing health care goes beyond simply supplying patients with medication. The challenge, she said, is that “you can’t take the drugs without food,” which is often scarce in the region she serves.
“People always tell us, ‘You give us medicine but you don’t give us food. How can we take this medication without food?’” Fatima said, adding that CHWs are “defined by the community as caregivers, but sometimes we fail them. We cannot afford all of what they are expecting from us.”
Despite serving on the frontline of primary care services, Chikondi, Fatima, and the more than one million CHWs in service around the world are often excluded from discussions about health care in their local settings, causing a serious disconnect between what policymakers allocate to community health organizations and the realities on the ground. The barriers faced by CHWs not only affect the individual patients but also the community at large, precluding visions for universal health care from being fully realized.
In an effort to address these challenges, the Community Health Impact Coalition and the Stanford Center for Health Education’s Digital Medic initiative teamed up with CHWs from around the world. The product: A digital course centered around advocacy, storytelling and technology — core attributes meant to propel CHWs to take charge of their work and champion their own wellbeing.
Since launching in May, 205 learners from 23 different countries have downloaded the Digital Medic mobile app, where the training is hosted, and started the advocacy course that can be accessed offline. Of these learners, 106 (over 50 percent) are CHWs from 16 countries (Cameroon, Eswatini, Guatemala, India, Indonesia, Kenya, Malawi, Nepal, Nigeria, Rwanda, Sierra Leone, Somalia, South Africa, Thailand, Uganda, and the United States). Another 18 learners (9 percent) are other health workers (physicians, nurses, and medical students). The remaining learners hold various roles in ministries of health, NGOs, and other areas of global health and education.
The course has four objectives: to introduce CHWs to the history of community health; teach CHWs the basic steps of advocacy; help CHWs find and use their inner voices to tell engaging stories; and equip CHWs with information about technology tools to allow them to participate in global conversations.
CHWs from the CHIC network actively collaborated with storytelling and advocacy experts, Digital Medic researchers and designers, and CHIC health systems experts every step of the way. Throughout its development, CHWs offered key personal insights, giving feedback on the content and design of the advocacy course. The course’s development would simply not have been possible without the instrumental guidance of CHWs.
In advisory workshops, 25 CHWs and community health supervisors from South Africa, Kenya, Sierra Leone, Uganda, Malawi, Liberia, Nepal and Guatemala were asked to reflect on the systemic challenges they face and how they view their roles not just as community advocates, but also as advocates for themselves and for improving working conditions of all CHWs.
“The iterative feedback of the CHW advisors allowed us to identify barriers faced by CHWs of which we were previously unaware,” said Jamie Johnston, Digital Medic’s evaluation lead. “This has allowed us to incorporate teaching strategies into the course to help CHWs think about their role as advocates not just for their clients, but for themselves and their peers.”
From not having the appropriate medical equipment or medication to traveling miles on bicycle to reach remote communities, CHWs reported being overworked and under-equipped. And most said that their payments were often delayed while some were not even being paid. The COVID-19 pandemic only exacerbated access to personal protective equipment (PPE) and medication.
So, why would CHWs continue to work despite compounding barriers and lack of support? According to Nophiwe Job, a research analyst with Digital Medic, the CHWs interviewed understood the gravity of their roles.
“They were fluent in the language of advocacy for their communities, but they didn’t see themselves as the right people to advocate for themselves,” Job said. “There was an internal conflict — and it seemed like, ‘How can I fight to get paid when my patients are suffering so much?’ And actually the battle had been won because they had chosen to advocate for their communities over themselves.”
A CHW in the focus group described it as a clash between better pay and empathy for their patients: “We took on the job of knowing that we are not paid much so we have empathy,” they said. “That empathy is directly for those people that we care for.”
For Job, CHW advocacy is personal. A nutritionist by training, she worked directly with CHWs in KwaZulu-Natal province in rural South Africa. Even though her interactions with CHWs took place several years ago, Job noted that the issues the CHWs brought up are perennial, not just in South Africa but also in other countries.
“Lack of resources, lack of PPE, ill training, delayed stipends, lack of transport for remote areas — it’s the same song over and over again,” Job added.
Perhaps the most significant aspect of the workshops was tracking the transformation CHWs went through in a matter of weeks as they emerged from the advocacy course with an entirely different notion of their value.
For the first time, CHWs viewed themselves as the ideal candidates to advocate not just for the well-being of those they care for but also for themselves. Though they recognize the roadblocks that come with navigating bureaucracy and power structures, they still viewed CHWs as the ideal candidates to advocate for their welfare.
“If maybe we can make [CHWs] feel like they are very important in the society and on the ground, they will come up,” said a CHW participating in the endline focus group. “They will stand up. They will pull up their socks and they will start fighting for their rights.”
When CHWs began working on the course they were confident that they were engaged in discussions about their work. But as they progressed through the course, they realized that there are much higher levels of involvement they could reach — and they sought to use their advocacy skills to aim for them.
Not only did CHWs understand the importance of self-advocacy in theory, but also in practice. According to Job, there was a visible change in how the CHWs carried themselves. This lines up with previous research indicating that CHWs with advocacy training are two-to-four times more likely to advocate at the political, civic, and workplace levels than those without.
“People were so ready to participate they weren’t even waiting for questions in the endline focus groups,” Job said. “It was just amazing to watch them come out of their shell and actually believe that their opinion matters.”
As the course continues to be rolled out, Johnston said, investigators will continue to examine CHW engagement and feedback to pinpoint ways to increase the efficacy of the training. Job hopes that the course will one day be standardized training for CHWs.
“It will set the tone for them that you are important, your voice is important and your ideas are important,” she said.
While their identities are known to Digital Medic, CHWs have been given first name pseudonyms to protect their privacy. CHW quotes have been condensed and lightly edited for clarity.
Learn more and access the course here.
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