Communication in Neglected Tropical Diseases' Elimination: A Scoping Review and Call for Action

"This article is a call to action to consider the resources offered by the health communication field when researching, designing, or implementing NTD interventions."

In 2005, the World Health Organization (WHO) introduced the category of neglected tropical diseases (NTDs), characterising neglect as a complex problem involving multiple actors and interacting at different levels. Because social and environmental factors have been identified as important drivers of disease, anthropologists, sociologists, and economists have been invited to assist in NTD research and implementation. To illustrate how communication has been conceptualised and applied in the context of NTD elimination, these researchers conducted a scoping review focusing on lymphatic filariasis (LF) and Chagas disease (CD). One aim is to show how the broader sense of communication theories, methods, and actions offered by the discipline of health communication can support NTD efforts.

The paper begins by situating health communication as a discipline with distinct theories and research methods and by tracing its evolution from persuasion to dialogue. For instance, communication for social change, advocacy, and social mobilisation models flourished as part of a turn to community participation in the 1990s and 2000s, and, more recently, there has been a call for health intervention professionals to engage community members in authentic deliberation over goals, worldviews, and methodologies for attaining those goals. This scoping review is meant in part to answer the question of how extensively practitioners in NTD contexts have adopted the turn from top-down transmission of information to participatory co-creation of meaning, thereby adopting the theories, practices, and levels of change encouraged by contemporary health communication theory.

This scoping review identified studies published between January 2012 and March 2020 that implemented communication activities as part of LF or CD elimination strategies. A total of 675 articles were identified during the first phase of data screening; 43 of them, 18 of which were focused on LF and 25 on CD, were finally considered for analysis. The C-Change Socio-Ecological Model for Social and Behavior Change Communication was used as the main analytical framework for this review:

A summary of the results can be found in Tables 1 and 2 of the paper; manuscripts and excerpts included in this analysis are presented as supplementary materials (S2 and S3 Tables). The paper presents the communication theories employed, the level of change communicative activities targeted, and the communication activities employed for each disease. For example:

• Communication actions in LF elimination: More than three-quarters (n = 14, 77.7%) of communication interventions to address LF did not use a theoretical framework. In the remainder, 2 theoretical frameworks from communication theory were used in LF interventions. Information, education and communication (IEC) theory was used in 3 studies (16.7%). Community-based participatory approaches were used in the remaining study (5.6%). No study addressed the enabling environment as a level for change. The studies focused on LF elimination performed communication activities under a top-down approach in which the goal was to communicate information from health actors to the population. Dialogic communicators claim that top-down LF strategies too often neglect contextual, economic, and political factors.
• Communication actions in CD control/ elimination efforts: Use of specific theoretical frameworks in the design of communication interventions and activities was more frequent in CD than in LF interventions. The community level of change was the most likely to be addressed in CD elimination, followed by the individual level, the enabling environment level, and the interpersonal level. Although most studies on CD elimination performed communication activities as top-down activities, CD elimination used dialogic approaches more often than did LF efforts. The most extensive use of dialogic approaches was identified in interventions that employed the Ecohealth perspective. Ecohealth at the household level, for example, might emphasise collaboration among family members for home construction or reconstruction, waste management, and animal rearing practices. Advocates of this and other dialogic approaches also argued that, when compared to top-down approaches, dialogic approaches were associated with increased knowledge of CD and adoption of home-based triatomine control practices, as well as with improved sustainability, cost-effectiveness, and health outcomes.

Overall, the results "indicate that communication in LF and CD interventions has been largely used as a set of support tools and supplemental activities aimed at achieving biomedical objectives. Most of the use of communication follows a traditional, top-down and linear conception of communication. Although activities varied in channels and approaches, communication actions were mostly aimed at delivering information and amplifying pre-defined messages to increase knowledge and participation, promote individual behavior change, or securing some degree of acceptability for proposed control and prevention strategies."

However, by "generically promoting community participation or individual behavior change, regardless of the particular conditions of the intervention at hand", interventions risk ignoring larger dynamics and fail to account for the complexity of social life in their design and implementation, which - as argued here - is "likely create new forms of silence and neglect."

Although these trends were quite consistent, there were some standout examples. For instance, "CD researchers attempted complex forms of community involvement, partially in response to historically established close association between living environments and CD. This complexity also meant that CD researchers were more likely to use theoretical perspectives to design their communication activities. CD researchers were also more likely to include activities generating critical thinking and knowledge exchange between scientists and communities."

On the whole, NTD research seems to have maintained "a superficial involvement with health communication theory and science." The researchers "contend that a more complex understanding of the processes and capacities offered by the health communication field could help better attain the medical and social justice goals proposed in elimination strategies." They present 3 ways in which the field of health communication could further enhance NTD efforts:

1. Informing interventions with theory-based frameworks - "Dismissing refusers' arguments as irrational and opting for persuasion as the fastest route to move forward elimination goals will only limit interventions' response capacity in the long run..."
2. Exploring the political complexity of community participation in specific contexts - Activities conducted under this framing covered a wide range of schemes, from organisation of sensitisation meetings and provision of door-to-door information, to complex strategies requesting different forms of engagement from a wide range of actors. However, "interventions can go beyond populations' buy-in by focusing on communication processes rather than outputs and facilitating flexible designs that can adapt to local realities and contextualize programmatic demands....Lines of research such as communication for development, communication for social change and dialogic communication can provide vast references on the complexity of generating participatory processes that consider power differentials, as well as ideas on how to incorporate the political aspect of participation into programs design..."
3. Identifying conceptualisations of culture implied in interventions' design - There is a distinction between culture-sensitive approaches, which commonly pursue sensitisation and persuasion, and culture-centred perspectives, where local contexts and community perspectives inform intervention implementation and specific actions to foster critical thinking in study populations. "Considering the different reach and scope of these two approaches is necessary to more realistically inform the impact expected from specific forms of communication formulated under these perspectives."

In conclusion: "As concrete forms of social interaction, health interventions do not happen in a vacuum. NTD elimination efforts exist in contexts historically affected by multiple forms of political and socio-economic marginalization that exacerbate vulnerability to disease....The field of health communication...offers theoretical and methodological resources that can help articulate issues of power, representation, and meaning around health issues...", including NTDs.