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Towards a Theory of Sustainable Prevention of Chagas Disease: an Ethnographic

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Towards a Theory of Sustainable Prevention of Chagas Disease: an Ethnographic Towards a Theory of Sustainable Prevention of Chagas Disease: An Ethnographic Grounded Theory Study A dissertation presented to the faculty of Ohio University In partial fulfillment of the requirements for the degree Doctor of Philosophy Claudia Nieto-Sanchez December 2017 © 2017 Claudia Nieto-Sanchez. All Rights Reserved. 2 This dissertation titled Towards a Theory of Sustainable Prevention of Chagas Disease: An Ethnographic Grounded Theory Study by CLAUDIA NIETO-SANCHEZ has been approved for the School of Communication Studies, the Scripps College of Communication, and the Graduate College by Benjamin Bates Professor of Communication Studies Mario J. Grijalva Professor of Biomedical Sciences Joseph Shields Dean, Graduate College 3 Abstract NIETO-SANCHEZ, CLAUDIA, Ph.D., December 2017, Individual Interdisciplinary Program, Health Communication and Public Health Towards a Theory of Sustainable Prevention of Chagas Disease: An Ethnographic Grounded Theory Study Directors of Dissertation: Benjamin Bates and Mario J. Grijalva Chagas disease (CD) is caused by a protozoan parasite called Trypanosoma cruzi found in the hindgut of triatomine bugs. The most common route of human transmission of CD occurs in poorly constructed homes where triatomines can remain hidden in cracks and crevices during the day and become active at night to search for blood sources. As a neglected tropical disease (NTD), it has been demonstrated that sustainable control of Chagas disease requires attention to structural conditions of life of populations exposed to the vector. This research aimed to explore the conditions under which health promotion interventions based on systemic approaches to disease prevention can lead to sustainable control of Chagas disease in southern Ecuador. Using Healthy Homes for Healthy Living (HHHL) as reference, I conducted an ethnographic grounded theory study to answer the following research questions: RQ1. What are the factors that contribute or limit sustainable control of Chagas disease in the communities of Chaquizhca, Bellamaria and Guara under the model proposed by HHHL? RQ2. In what ways, if so, can these factors be addressed in order to scale up the model to other homes in these communities? The first three chapters of this document develop the proposal that was approved for this dissertation. They provide a general overview of the theoretical and methodological foundations that articulate this research as an interdisciplinary endeavor. 4 The literature review is extended in Chapter 4 through a systematic review that looked at communication approaches applied to NTD’s eradication, elimination and control. This systematic review established that behavior change through health education is the most common goal pursued through communication actions, but no major differences in media, messages and strategies can be observed for the specific infectious diseases studied (Guinea worm, lymphatic filariasis, schistosomiasis and Chagas disease). More complex approaches to communication based on differentiated goals, deep study of local cultures and deeper understanding of the role of participation in decision-making, are recommended. Chapter 5 elaborates on fieldwork conducted between 2016 and 2017 to analyze the experience of local families after implementation of the HHHL model. In here, I contend that sustainability of CD control under the model proposed by HHHL largely depends on the systemic capacity of home improvement to activate and sustain agency in partner families. Agency is explained in this case as the confluence of three factors: systemic improvement of families’ quality of life, consistent use of protective measures by partner families, and adaptation to emerging dynamics in communities at large. Finally, Chapter 6 presents ideas to scale the HHHL model by applying lessons learnerd in the pilot phase of the project and brosdening its scope to a larger public health strategy. 5 Dedication To my parents, for telling me the first story. A mis padres, por contarme la primera historia. 6 Acknowledgments My gratitude goes, in first place, to the communities of Chaquizhca, Bellamaria and Guara. Thanks for receiving all these years of endless questions with an honest smile. My heart will always admire and be inspired by the courage of those families that decided to believe in us when we presented the idea of Healthy Homes for Healthy Living. That act of trust opened multiple avenues for our personal and scientific growth. Gracias. Thanks to my colleagues at ITDI and CISeAL for creating spaces of social change where multiple perspectives and worldviews are welcomed. It has been an honor working with you all. Special thanks to Darwin Guerrero, Guillermo Gomez, Esteban Baus, Sylvia Jimenez, Sofia Ocana, Anita Villacis, Cesar Yumiseva and Maria Jose Carrasco for your lessons of creative and critical thinking. The Healthy Living Initiative is a life changing experience because you all have invested the best of your energy in making it so. Thanks to my committee members for their constant support along this process. Mario, thanks for trusting me with your ideas, for offering me a challenging and inspiring path through graduate school, and for always setting the highest professional standards as reference for our group. Thanks for believing in my work and motivations. Thanks for your economic, scientific and personal support. I am very proud to be called your mentee. Ben, thanks for your willingness to listen to my ideas and your patient reading of this and previous versions of this manuscript. Thanks for giving me the ‘yes’ that started my PhD life and for guiding me in all those critical moments in which I could not see the end of the road. Tania, thanks for witnessing and shaping my trajectory as a graduate student. You saw my becoming from a masters student into a doctor and can only join other 7 Commdevers in thanking your presence at Ohio University as faculty and director. Thanks for always telling me ‘you got this’. To the three of you, thanks for literally traveling with me to experience that Ecuador that has so deeply impacted my career. I also want to dedicate some words of gratitude to the voices that constantly guide and inspire my decisions as scholar. Thanks to Karen Greiner, Adelaida Trujillo, Jair Vega, Warren Feek, David Mould, Silvio Waisbord, Arving Singhal, Austin Babrow, Amy Chadwick, Bill Rawlins, and Koen Peeters for modeling the practitioner I am, but first and foremost, for offering me your friendship in this path of learning. To Rafael Obregon for believing in me, for insisting every time that fears threaten with holding me back, and for that perennial hug that reminds me that we are making the road by walking. My deepest gratitude to the amazing women I have been lucky enough to cross paths with to understand that there is not solitude in our fights. To Cynthia Hannah, Karen Greiner, Belen Marco, Diana Marvel, Sofia Ocana, Maria Fernanda Pena, Zulfia Zaher, Katy Kropf, Piper Kropf, Sharon Casapulla, Adriana Angel, Piedad Mendoza, Yira Zafra, and so many others sisters I have been reunited with along the way. Finally, I want to thank my family for embracing my absence with their loving presence: To my parents, for patiently waiting in the multiple occasions in which work took over my time and attention; to Camilo and Adriana for showing me the power of committed love; to my family in the US, for taking that first step that has opened the doors for many of us and for always offering me a home away from home; and to Achilles, my Compa, for saying ‘Yes’ to my ‘What if’ question. My gratitude to all the Gods I have found in the genuine human encounters I have experienced in these years of travels and learning. 8 Table of Contents Page Abstract ............................................................................................................................... 3 Dedication ........................................................................................................................... 5 Acknowledgments............................................................................................................... 6 List of Tables .................................................................................................................... 11 List of Figures ................................................................................................................... 12 Chapter 1: Introduction ..................................................................................................... 13 Neglected Tropical Diseases: The Need for a Paradigm Shift in Disease Prevention 13 Poverty and NTD ........................................................................................................ 18 Chagas Disease ........................................................................................................... 22 Healthy Homes for Healthy Living ............................................................................. 27 Research Purpose ........................................................................................................ 29 Chapter 2: Theoretical Foundations .................................................................................. 31 Living Environments and Health: A Health Systems Perspective .............................. 31 Implementation Research ............................................................................................ 37 Social Construction of Health ....................................................................................
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