Applying Design-Based Research in Healthcare: A New Approach to Advocacy Among Community Health Workers
Community health workers (CHWs) are uniquely suited to be health advocates due to their distinctive roles, relationships, and understanding of the challenges their communities encounter.
However, the absence of institutional support—including limited supervision, insufficient financial remuneration, inadequate supplies, equipment, and training, along with feeling undervalued by healthcare colleagues—often leaves CHWs feeling powerless in their roles and work environment, making them perceive themselves as unappreciated members of the healthcare system. In certain low-resourced areas, CHW programs have collapsed due to high attrition caused by the insufficient support given to CHWs.
Research suggests that advocacy and leadership training may increase the likelihood of CHWs engaging in political, civic, and workplace advocacy. Inspired by this potential, we initiated a study within a course development project to look at how training in leadership and advocacy might change the way CHWs approach their roles within their communities and workplaces. In this recently published paper, we share our deep dive into our process, findings, and implications about how CHWs may become stronger and more confident advocates for themselves and their communities after going through these training programs.
How Design-Based Research in Healthcare Bolsters CHW Advocacy
Stanford’s Digital Medic and the Community Health Impact Coalition (CHIC) collaborated to develop a digital advocacy course for CHWs. Using a design-based research (DBR) approach, we recruited 25 community health workers from eight countries (Guatemala, Kenya, Liberia, Malawi, Nepal, Sierra Leone, South Africa, and Uganda) to serve as an advisory group throughout the course's development.
The final CHW Advocacy Training course consists of four modules:
- History and background of community health programs
- Advocacy skills for improved healthcare and working conditions
- Storytelling for change
- Use of technology and tools to participate in global conversations
The CHWs in our advisory group represented varying CHW roles, years of experience, and levels of supervisory responsibility. For six months, the CHWs engaged in course curriculum refinement and prototyping in a series of human-centered design workshops.
Design-Based Research: Unveiling Increased Confidence and Advocacy Among Community Health Workers
One of the key features of DBR is the collaborative involvement of research participants in the research. Thus, the CHWs were not only integral to the curriculum development but also provided us with the opportunity to observe how their perspectives on workplace advocacy evolved over six months of engaging with the curriculum.
This is what we learned:
1. CHWs entered the training with an understanding of the concept of advocacy and clearly perceived themselves as advocates for their communities.
Their understanding was rooted in the idea that one who advocates is doing so “on behalf of others”. Some described it as “giving a voice to the voiceless”.
2. CHWs experience a moral conflict between advocating for themselves and their working conditions and empathy for their community and employer organizations.
The CHW participants fully acknowledged that they require remuneration, and increased and timely pay, to sustain their families. However, at the outset of the workshops, they exhibited reluctance to address remuneration-related matters. As the workshops advanced, they revealed that their initial hesitation to discuss remuneration stemmed from their perception that advocating for compensation conflicted with their genuine care for their communities and dedication to their roles as CHWs.
3. As the course progressed, CHWs began to identify as part of a global cohort of professional health workers and recognize their ability to uniquely advocate for themselves and their communities.
Upon initially encountering the ladder of participation, the CHW participants identified themselves and their colleagues as situated in the lowest tiers, encompassing the bottom three levels, of participatory decision-making. Certain CHW supervisors acknowledged that the CHWs they oversee, particularly those operating at the village level, occupy even lower positions within the hierarchy, characterized by manipulation, decoration, and tokenism—the very bottom levels of participatory decision-making.
Additional barriers to self-advocacy included their lack of confidence stemming from what they perceived as inadequate training or formal education. However, after refining the initial module and gaining insight into the history of community health worker programs worldwide, they noted that it helped validate their work and conferred upon them a sense of importance within the health system. The course facilitated their recognition of the challenges they encountered within a global framework. This led to discussions regarding the levels of participation in community health decision-making, which served to strengthen the resolve of many CHW participants to become more proactive self-advocates.
4: By the end of the course, the CHWs embraced their role as advisors and reflected positively on their influence in creating the course.
All CHW participants noted that this was the first instance they had been invited to contribute to the development of a course. Some initially felt uncertain and hesitant to provide critiques or comments until they realized that their recommendations and suggestions led to actual changes in the content, which were shared with them in subsequent workshops. They reflected on past experiences where they were invited to meetings but found that their suggestions were seldom acted upon. Witnessing the integration of their recommendations into the course design bolstered their confidence to offer more candid feedback on the content and its relevance to their fellow community health workers across their respective countries. As they engaged more extensively with the course and its various components, the CHWs provided increasingly direct and detailed feedback.
DBR's Broader Impact on Health Worker Advocacy
Many CHW participants reported that this experience bolstered their confidence to engage in self-advocacy and fostered a stronger sense of interconnectedness among CHWs from diverse countries and regions. Our findings suggest that efforts to engage CHWs in advocacy must overcome systemic barriers and norms internalized by CHWs, particularly their moral conflict with self-advocacy.
Ultimately, exposure to advocacy principles and the use of a participatory approach like DBR heightened CHWs' awareness of the pivotal role they occupy in health systems.
Explore the published paper: Community health worker perspectives on advocacy: design-based research to develop a digital advocacy training course.
