Reflections how IEC can empower and integrate stakeholders to denormalise Chagas disease and drive care and prevention policy: healthcare system governance at the heart of Chagas disease neglect

The complexity of any human disease caused by a zoonotic pathogen, geographically restricted by its natural distribution in mammals and by its dominant mode of dispersal via a blood-feeding hemipteran, but capable of dispersing globally via other human-human transmission modes, is inherently difficult to dimension. The major burden of Chagas disease (CD) and its neglected status do not derive from secondary transmission modes, but rather from endemic geographic regions having a myriad of social, political and cultural vulnerabilities immersed in extreme environmental conditions, where there is a need to transition to sustainable development.

The article “The multidimensional comprehension of Chagas disease. Contributions, approaches, challenges and opportunities from and beyond the Information, Education and Communication field” reviews conceptual frameworks, and highlights CD determinants and which have been historically absent or only nominally included in different approaches. It reviews the semantic differences between approaches, at the same time as the need to incorporate local cultural, social and symbolic realities to adapt knowledge, incorporate information, and more effectively communicate among all stakeholders. Key issues such as gender and social governance continue to hinder dialogue, exchange, and knowledge construction. The authors target the bias of the traditional vertical “biomedical” approaches, although in fact, this approach has historically been inappropriately balanced environmentally, and has not included effective primary healthcare strategies for patients, in most countries. CD and human social conditions are immersed in the ecosystem, and ideally, by developing or maintaining a healthy environment, social management can reduce exposure and vulnerability.¹ Most sustainable development strategies also focus on the importance of information, education and communication (IEC) components, however by polarising either the ecosystem or anthropic components, in lieu of appropriate integration, common goals are difficult to achieve. Independent of the detail or complexity of dimensions included in conceptual frameworks, without appropriate operational elements which anchor who educates whom, who informs whom, who communicates with whom, or the more horizontal intercultural balance essential for successful interactions, social groups will continue to struggle to be key stakeholders in public policy.

IEC initiatives have been considered effective tools and interactions to resolve the historical bias of vertical vector-borne disease programs the lack of multi-dimensional approaches in public healthcare systems (PHS) since the Alma Ata. However, how they can contribute based on continued unidirectional experiences and without important shifts in governance, despite enabling environments, is questionable. Not all multi-dimensional conceptual frameworks for CD have operative capacity (as does the WHO tricycle) and may be difficult for PHS and prevention programs to include in systemic roadmaps. Resources such as the WHO “Beat Chagas” provide creative platforms to share and interchange the plethora of regional and cultural efforts to communicate, inform and educate among CD community stakeholders across countries, regions and ethnicities. The practice and implementation of IEC has taken on new paths and dimensions due to involvement and organisation by affected and patient populations through associations and Federação Internacional das Associações de Pessoas Atingidas pela Doença de Chagas (FINDECHAGAS), and their voices through novel communication expressions and mass media, as well as global efforts.

How IEC initiatives currently affect access to treatment and care, and operative efficacy to reduce CD risk, morbidity, and mortality has yet to be clearly monitored and evaluated. Making Chagas disease visible and ensuring active stakeholder cross-talk, have been key elements to motivate novel approaches and strategies required to transform and mold public policy. However, systematising appropriate tools to effectively implement knowledge transfer and construction, gather and make reliable information public, and develop unrestricted, unfiltered, and public domain communications requires social will and creative empowering conventions. In addition to these novel tools, future approaches need to incorporate a more holistic perspective of both spatial and temporal elements of healthy environments where CD occurs by using measurable risk components and key anthropic elements such as gender and social vs political policy are fundamental to appropriately dimension vulnerability, exposure, and acceptability of strategies to reduce risk of CD at individual and family levels. Most particularly, this will require novel social conventions in endemic countries where greatest resistance continues to impede evolution of public policy and governance for social equity. As we are reminded in the article, access to CD care, prevention and control has challenged PHS and prevention program management through activism, unconventional yet creative strategies, empowerment, and strong international and national networks. As long as these efforts evolve, expand, and experiment broader social actor inclusion, key dimensions (determinants) can be incorporated into CD medical care and transmission prevention, and provide effective IEC tools to ensure appropriate continuous operative direction.

Comments on the article: Sanmartino M, Forsyth CJ, Avaria A, Velarde-Rodriguez M, Gómez i Prat J, Albajar-Viñas P. The multidimensional comprehension of Chagas disease. Contributions, approaches, challenges and opportunities from and beyond the Information, Education and Communication field. Mem Inst Oswaldo Cruz. 2022; 117: e200460.

REFERENCES

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  Valdez-Tah A, Huicochea-Gómez L, Ortega-Canto J, Nazar-Beutelspacher A, Ramsey JM. Social representations and practices towards triatomines and Chagas disease in Calakmul, México. PLoS One. 2015; 10(7): e0132830.

Publication Dates

• Publication in this collection
  01 June 2022
• Date of issue
  2022

History

• Received
  06 Dec 2021
• Accepted
  17 Dec 2021