Community Engagement and the Communication Response to Ebola

In this special issue of the Journal of Health Communication: International Perspectives, we present a series of articles that describe aspects of how communication research and practice responded to the outbreak of Ebola in West Africa that began in March–April 2014. By the time that international agencies began to mobilize to address the outbreak a few months after the first cases were confirmed, many communities had already been severely affected. Yet little was known about patterns of behavior, communication about causes and solutions in a rapidly changing environment, barriers and facilitators to individual and community response, or the capacity of health, social, and communication systems to address the challenges posed by the outbreak. Some communities already were organizing themselves to keep Ebola out, but these examples were few, they were done with little collaboration with national responders, and their experiences were not being documented or shared to benefit other communities. Communication researchers and practitioners were called in to support the crisis response and find the most promising, culturally appropriate, and feasible approaches that could be applied at scale. The role of communication went well beyond provision of health information and promotion of behaviors to prevent Ebola infection. Communication research and practice’s contribution focused on understanding cultural and social practices around health and well-being and key drivers of the epidemic and engaging and working with vulnerable communities to negotiate a locally acceptable response.

This collection of articles reflects some of that early work during a period of great uncertainty and urgent need, as well as research accounts and in-depth analysis of communication strategies developed and implemented throughout and towards the end of the outbreak. While the peer-review process for this issue was not guided by any particular organizing principle, the accepted articles nevertheless turned out to reflect stages of the research and practice response as it unfolded at the time: the early use of conceptual frameworks to organize thinking and analysis; conducting rapid formative research to understand the dynamics of the affected communities; understanding the role of local communication media; implementing strategies for community engagement, service delivery, and trust building; and applying lessons from the Ebola experience to other health issues.

In the early stages of a crisis, when chaos reigns and the need for action is high, key issues and actions highlighted in this collection of papers must remain central to the role of communication in disease outbreak response. The use of tested theoretical frameworks and models can help to focus thinking and shed light on possible forces and processes that affect the trajectory of the outbreak, while risk and behavior change communication theories and community-based approaches help foreground the interplay between community dynamics, local understanding of the disease and cultural practices around care seeking, and dealing with illness and death. While not deterministic, the use of frameworks provides structure to early stages of planning so that action can begin while additional research is developed and communication strategies are refined. Figueroa (2017) describes a transtheoretical social ecological model of communication and behavior that linked theories at individual, community, organizational, policy, and systems levels to frame localized research questions, begin to model behavioral response and identify potential communication strategies. Sastry and Dutta (2017) provide an analysis of the use of culture-centered, critical health communication theory to question prevailing assumptions, draw attention to neglected voices, and interrogate the relationships between indigenous culture and structural forces that may constrain the development of locally authentic and effective practices.

While rapid response is of utmost importance with Ebola, formative research with affected and at-risk communities plays a critical role in defining the situation on the ground and generating evidence to support decision-making. Berman, Figueroa, and Storey (2017) describe a study conducted using an SMS-based survey to rapidly assess basic knowledge of Ebola transmission and risky behaviors and the sources of information that are trusted in the community, in order to inform initial strategies for action—almost in real time. This produced localized insights into community dynamics around Ebola response in Liberia without putting data collection teams in danger of infection. As the disease outbreak curve peaked, traditional burial practices were identified as one of the ways that the Ebola virus spread rapidly within families and communities. Lee-Kwan et al.’s (2017) qualitative work with important community subgroups revealed prevailing knowledge and attitudes about risks and stigma associated with traditional burial rituals and what would make safer, but dignified medical burial acceptable to families.

The stigma associated with Ebola infection was so strong that many households and communities avoided reporting cases. Carter, O’Reilly, Walden, et al. (2017) report their qualitative community-based research in Sierra Leone on the barriers to and facilitators of treatment-seeking behavior, including fear of outsiders, limited access to services and availability of treatment, and lack of information about what happens inside treatment facilities where the infected were taken. Their work led to important recommendations for involving community members in the development of information programs, creating stronger community relationships with health facilities, and mobilizing survivors to inspire hope. Addressing the challenge of organizing local partners to design and implement social mobilization and community engagement (SM/CE) efforts, Pedi et. al. (2017) describe their mixed methods approach to developing standard operating procedures (SOPs)—principles, roles, and actions—for quality assurance, coordination, operations, and integration of SM/CE with other Ebola-related services, including quarantine and surveillance.

Mass media should be key partners in public health and emergency response and it is clear that they played important roles, both positive and negative, in the way the world community reacted to Ebola. Roberts, Seymour, Fish, Robinson, and Zuckerman (2017) studied almost 110,000 English language online stories over a four and a half month period and show clearly how widely misinformation circulates on the Internet and influenced global public perceptions of and responses to the Ebola epidemic. The WHO and CDC were the most cited information sources, followed closely by Twitter, but social media sources overemphasized largely unfounded fears of Ebola spreading to the United States rather than science-based news of what was happening in the most severely affected countries. Policy responses largely reflected (and reinforced) public sentiment about the outbreak. In contrast, Abramowitz et al. (2017) studied local news flow in Monrovia, Liberia, in August–September 2014 and found rapid positive changes in the accuracy of public beliefs about the source of the Ebola, modes of contagion, and infection prevention and control (IPC) practices, although changes in practices tended to lag behind the acquisition of knowledge, and some conspiracy theories and rumors persisted even as correct information spread.

Two studies in this volume examined specific intervention efforts for evidence of positive impact on the outbreak. Carter, O’Reilly, Frith-Powell, et al. (2017) investigated the introduction of Community Care Centers (CCCs) in Sierra Leone that were intended to increase treatment-seeking behavior and reduce community-level spread of Ebola by facilitating access to care closer to communities. Their analysis showed that involving communities in the design and operation of those centers increased familiarity with how medical facilities function and reduced fears—including fear of losing contact with loved ones taken for treatment—enhancing trust between medical services and the community. Another intervention aimed at reducing viral transmission drew on the community-led total sanitation (CLTS) approach to reduce open defecation. Capps, Njiru, and deVries (2017), in a mixed methods evaluation of this intervention, found far lower incidence of Ebola viral disease in communities that had been exposed to the CLTS initiative and were “open defecation free.” Both of these evaluations show that even under extreme conditions at the height of the outbreak, exposure to and previous engagement in community-led processes can contribute to collective action to prevent disease transmission at the community level that is both possible and powerful.

The last article in this volume jumps ahead to roughly a year after the outbreak in Liberia to determine if lessons learned from Ebola persisted and could be translated to other unrelated health issues, in this case a polio, measles, and de-worming campaign. Bedford et al. (2017) report that social mobilization and community engagement structures and processes that evolved to address Ebola were reactivated to encourage positive community perceptions of and community-based approaches to the utilization of routine immunization. This lends support to claims that community-based approaches can create sustainable change.

When the latest and most extensive Ebola outbreak to date emerged in 2014, public emotion, both globally and locally, was intense. Government health authorities and global health organizations debated and struggled to identify and organize appropriate responses. With no available vaccine against Ebola, few treatment options, and overwhelmed and under-resourced health service systems in Guinea, Liberia, and Sierra Leone, health communication about prevention, containment, care seeking, and community response was one of the few things that could be done locally and at scale to affect the progression of the disease. Communication was also critical to address fear and misinformation about the disease, mistrust between the communities and health providers, and severe stigma and discrimination that children, families, and communities faced. This collection of articles provides a glimpse into how communication science and practice can step into the breach to conceptualize challenges, describe existing conditions, investigate and test possible solutions, engage and mobilize stakeholders and communities, and communicate accurate and timely information to and with those who need it, even under difficult conditions. As the global public health community intensifies efforts to respond more effectively and predictably to future emergencies, we hope this volume will inspire policy makers, scholars, and practitioners to support preparedness efforts and enhance the evidence-based nature of the communication response for the next public health challenge.

Funding

The preparation of this Special Issue was facilitated by the U.S. Agency for International Development Cooperative Agreement #AID-OAA-A-12-00058 to the Johns Hopkins Center for Communication Programs through the Health Communication Capacity Collaborative (HC3) project and by the United Nations Children’s Fund (UNICEF).

Additional information

Funding

The preparation of this Special Issue was facilitated by the U.S. Agency for International Development Cooperative Agreement #AID-OAA-A-12-00058 to the Johns Hopkins Center for Communication Programs through the Health Communication Capacity Collaborative (HC3) project and by the United Nations Children’s Fund (UNICEF).