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 ..................................................................................... 39

From Persuading Individuals to Dialogic Health Promotion ...................................... 44

Chapter 3: Methods Section .............................................................................................. 49

Methodological Approach and Research Questions ................................................... 49

Research Design: Ethnographic Grounded Theory .................................................... 50

Grounded theory. .................................................................................................. 50

Sustainability as sensitizing concept. .................................................................... 53

Study population. .................................................................................................. 56

Data collection. ..................................................................................................... 57

Data analysis. ........................................................................................................ 62

Final products. ....................................................................................................... 66

Ethics and informed consent procedures. ............................................................. 66

Justification of Methods .............................................................................................. 67

Positionality ................................................................................................................ 69

Chapter 4: Uses of Communication Strategies, Media and Messages in Neglected Tropical Diseases Eradication, Elimination and Control Programs: A Systematic Review........................................................................................................................................... 72

9 Introduction ................................................................................................................. 72

Methods....................................................................................................................... 74

Data sources. ......................................................................................................... 75

Data extraction and synthesis................................................................................ 77

Results ......................................................................................................................... 78

Eradication. ........................................................................................................... 99

Elimination. ......................................................................................................... 102

Control. ............................................................................................................... 106

Discussion ................................................................................................................. 114

References ................................................................................................................. 124

Conclusion ................................................................................................................ 123

Limitations. ......................................................................................................... 124

Chapter 5: Towards a Theory of Sustainable Prevention of Chagas Disease: An Ethnographic Grounded Theory Study ........................................................................... 139

Introduction ............................................................................................................... 139

Home improvement for disease prevention. ....................................................... 141

Systemic approaches to Chagas disease prevention. .......................................... 143

Methods..................................................................................................................... 146

Study area............................................................................................................ 146

Healthy Homes for Healthy Living model (HHHL). .......................................... 147

Data collection and study population. ................................................................. 152

Data analysis. ...................................................................................................... 155

Ethics................................................................................................................... 159

Results ....................................................................................................................... 160

Health impact. ..................................................................................................... 160

Emotional impact. ............................................................................................... 183

Economic impact. ............................................................................................... 187

Social impact. ...................................................................................................... 193

Discussion and Theoretical Development ................................................................ 198

Systemic improvement of families’ quality of life. ............................................ 199

Consistent use of protective measures. ............................................................... 201

Adaptation to emerging dynamics. ..................................................................... 205

Barriers. ............................................................................................................... 206

Conclusion ................................................................................................................ 209

10 Limitations. ......................................................................................................... 211

References ................................................................................................................. 211

Chapter 6: Towards a Theory of Sustainable Prevention of Chagas Disease: Scaling Up Proposal (White Paper) ................................................................................................... 218

Contents .................................................................................................................... 218

Introduction ............................................................................................................... 219

Chagas disease .................................................................................................... 221

CD epidemiology in Loja province. .................................................................... 224

Healthy Homes for Healthy Living Model (HHHL) ................................................ 226

Methods..................................................................................................................... 230

Data collection and study population. ................................................................. 230

Data analysis. ...................................................................................................... 232

Scaling Up Proposal .................................................................................................. 234

Summary of findings ancillary study. ................................................................. 234

Infrastructure improvement. ............................................................................... 237

Dialogic health promotion. ................................................................................. 262

Income generation opportunities. ........................................................................ 267

Conclusion ................................................................................................................ 272

References ................................................................................................................. 273

References ....................................................................................................................... 278

Appendix A: Interview Guide for HHHL Partner Families ........................................... 300

Appendix B: Socio-economic Survey for Communities at Large ................................. 303

11 List of Tables

Page

Table 1. Communication actions advised in articles classified as recommendations. ...... 78

Table 2. Communication strategies implemented in studies classified as interventions. . 82

Table 3. Anti-triatomine measures implemented as part of HHHL infrastructure intervention. .................................................................................................................... 148

Table 4. Health promotion actions developed during the implementation of the HHHL model............................................................................................................................... 148

Table 5. Interviewees in partner families by year and type of intervention (Group 1). .. 154

Table 6. Interviewees in non-partner families (Group 2). .............................................. 155

Table 7. Exemplar of process coding. ............................................................................. 157

Table 8. Exemplar of in-vivo coding. ............................................................................. 158

Table 9. Comparison of 2012 and 2016 decay analysis (summary). .............................. 238

Table 10. Demographic characteristics respondents socio-economic questionnaire. ..... 240

Table 11. Frequency table for quantitative component of socio-economic questionnaire.......................................................................................................................................... 240

12 List of Figures

Page

Figure 1. Flow of search for systematic review. .............................................................. 77

Figure 2. Exemplar of a local home previous intervention. ........................................... 150

Figure 3. Exemplar of a home after HHHL intervention. .............................................. 151

13 Chapter 1: Introduction

Neglected Tropical Diseases: The Need for a Paradigm Shift in Disease Prevention

From terrorism to global warming, current debates about risk are entangled in

complex analyses about the meanings of vulnerability and safety in a context of global

interactions. The last decades have expanded descriptions of risk strictly focused on

personal practices potentially leading to danger (Turner, Skubisz, & Rimal, 2011), to

more sophisticated conceptualizations about multidimensional political, economic, social

and environmental interactions that can threaten modern concepts of health and

wellbeing.

Structural relationships between political and socio-economic conditions and

health are at the core of the conceptualization of neglected tropical diseases (NTD).

Known as ‘the other diseases’ alluded to by the millennium development goal number

six in the Millennium of 2000 (Smith & Taylor, 2013), the NTD group is comprised of

seventeen infectious diseases that mainly affect people living in poverty in tropical

regions of the world (Crompton, 2010). Despite important biological differences

determined by their protozoan (Chagas disease, leishmaniasis, American tripanosimiasis),

bacterial (Buruli ulcer, trachoma, leprocy, yaws), helminthic (trichuriasis, lymphatic

filariasis, onchocerciasis, schistosomiasis), or viral (dengue, and rabies) origin, the World

Health Organization (WHO) decided to group these diseases together in a single category

with the purpose of highlighting poverty as the main risk factor for infectious diseases in

developing countries (Crompton, 2010). Among the political, economic, and social

factors shared by NTD, prevalence in rural or poor urban areas in low-income tropical

countries, high disease burden but low mortality, transmission patterns directly related

14 with habitation settings and productive activities of affected population, and limited

resources invested in their research, prevention, and treatment, are the most salient

(Hotez, Fenwick, Savioli, & Molyneux, 2009).

Since 2003 −year in which WHO coined the acronym NTD− researchers and

organizations have been involved in systematic efforts aimed at obtaining financial and

political support for strategies and programs aimed at preventing, controlling,

eliminating, or eradicating these diseases. The NTD movement has capitalized on the

success claimed by HIV and malaria advocates after the visibility obtained through their

inclusion in the MDG declaration of 2000, up to the point that NTD were included in the

new Sustainable Development Goals launched by the United Nations in 2015 (Engels,

2016).

NTD advocates have focused strategic actions that can facilitate access to

financial and political support for research on these diseases (Kariuki et al., 2011). The

Integrated approach for NTD control has been the main strategy promoted by WHO and

scientists affiliated to institutions in the global North, not only as model for disease

prevention and treatment, but also as a global model for poverty reduction (Allen &

Parker, 2011; Hotez et al., 2007). Since most NTD are endemic of similar geographic

areas, and seven of them show substantial overlap in Sub-Saharan Africa, the integrated

approach basically proposes preventative chemotherapy with antiparasitic drugs

(particularly albendazole, mebendazole, praziquantel, ivermectin, diethylcarbamazine,

and azithromycin) massively distributed to communities at risk in urban and rural settings

of endemic countries (Hotez et al., 2007; Hotez et al., 2006) as main control method.

Four of these drugs are currently donated by pharmaceutical companies (Barry, 2014),

15 which has led WHO and scientists to sustain that around 500 million people in Sub-

Saharan Africa could be treated at an approximate cost of US$ $400 million or less per

year (Hotez et al., 2007). Moreover, there are multiple vaccine trials being conducted for

at least four of these diseases, which has led some authors to think that it is possible to

envision a set of “antipoverty vaccines against all of the neglected tropical diseases”

(Hotez et al., 2007, p. 1025) in the near future.

In addition to preventive chemotherapy, WHO also recommends vector control

and improved surveillance for high-quality care as part of these integrated approaches to

reduce transmission (Daumerie & Kindhauser, 2003). Regional counterparts are

mandated to take these recommendations and adapt them to the specific transmission

dynamics of each disease in different geographical areas.

In Latin America, the Pan American Health Organization (PAHO) has turned

WHO’s general guidelines into a package of seven actions for integrated control of NTD,

including: Integration of preventive chemotherapy; intensive management of cases;

vector control, provision of water and sanitation; management of zoonotic elements of

the disease; community participation; and multisectoral integration (Holveck et al.,

2007).

In spite of minor differences among regions, NTD integrated models share two

main arguments in their conception: a ‘pro-poor’ and ‘rapid impact’ nature. ‘Pro-poor’

approaches have been defined as those in which political actions stimulate economic

growth specifically benefiting the poor (Hotez et al., 2006). A pro-poor approach is one

in which policy-makers work conscientiously to address the needs and priorities of

vulnerable populations such as women, children, small farmers, and informal producers

16 (Molyneux & Nantulya, 2004). Concurrently, the idea of ‘rapid impact’ is defined as a

strategic approach to health systems designed to produce “rapid reductions in disabilities,

improvement in well-being, and, in some cases, interruption of disease transmission”

(Hotez et al., 2007, p. 1022), which in turn can represent gains in productivity, lifespan,

and mortality reduction.

Important critiques against this model have been raised by sectors concerned with

the multiple dimensions of neglect faced by populations exposed to these diseases beyond

the economic limitations alluded by the pro-poor and rapid-impact approaches.

According to WHO’s first report on NTD,

Neglect occurs at three main levels: at the community level, fear and stigma can sometimes lead sufferers and their families to conceal their condition. At the national level, these diseases are often hidden – out of sight, poorly documented, and silent, as those most affected have little political voice (…) Neglected diseases lack visibility at the international level as well. Tied as they are to specific geographical and environmental conditions, they are not perceived as direct threats to industrialized countries (Daumerie, & Kindhauser, 2003, p. 6). This first document published by WHO demanded researchers and policy makers

to shift their implementation paradigm from a disease centered perspective to one focused

on the needs of affected individuals and communities. However, arguments referring to

the intricate relationship between socio-economic conditions and health seem to fade in

the midst of disease oriented narratives reproducing biomedical analytical lenses.

The ‘pro-poor’ and ‘the rapid impact’ approaches correspond with the idea of

economism in health as the determinant logic for resource allocation in health recently

promoted by international health institutions (Sachs, 2005). This approach emphasizes

the economic impacts of disease occurrence by stating that when people are healthy

enough to work, they are boosters of growth instead of burdens for their households; in

17 the long run, individual health is fundamental to the generation of healthy economies

(Leon, 2015). The idea of economism in health emphasizes the market principle of

comparative advantage in allocation of resources for health. Since health is seen as

investment, policy makers are called to prioritize their decisions based on empirical

evidence collected to support decisions about which diseases can generate higher margins

of return (Organisation for Economic Co-operation and Development., 2009). The NTD

strategy embraces this logic and through the London Declaration signed in 2012, gives

definitive support to financial investment in research as the main priority of WHO

advocacy actions until 2020 (Tarleton, Gurtler, Urbina, Ramsey, & Viotti, 2014). Drugs

development, access to medication, and research on new forms of treatment, are at the

core of this agreement between pharmaceuticals, donors, operational partners, and

national NTD control programs.

Critics have pointed out that this strategic approach demonstrates that the NTD

campaign is more effective in rhetorical power than in potential material transformation.

It has been argued that even though working on infectious diseases as causes and

consequences of poverty is an undeniable priority, WHO and its partners have

exaggerated on the real impact of the integrated model for NTD control, especially in

terms of poverty alleviation (Allen & Parker, 2011). From this perspective, institutional

priorities as well as funding issues, force researches to magnify the real impact of the data

collected, and in many cases, disfigure the reality of research sites. Although the

important progress that drug development and effective distribution represent for this

group of diseases is acknowledged (Molyneux & Malecela, 2011), it has also been

recognized that NTD strategy is substantially limited in the goal of effectively addressing

18 the structural issues that determine the specific characteristics of poverty in developing

countries.

Poverty and NTD

Approaching a multi-causal phenomenon such as poverty requires consideration

of diverse and complex human experiences implied in its occurrence. Poverty transcends

income levels to include factors such as education levels, participation opportunities and

living environments in intersection with specific health risks (Adjei & Buor, 2012). The

term NTD has opened a spectrum of research in which the impact of geographical,

demographic, cultural, and social factors can be thoroughly explored by public health

practitioners to arrive to more effective strategies for disease prevention. Deficient water

supply systems and poor sanitary practices, for example, contribute to the spread of

helminth infectious in a different way that urbanization and soil degradation due to

aggressive agriculture contribute to the transmission of vector borne diseases (Gazzinelli,

Correa-Oliveira, Yang, Boatin, & Kloos, 2012). Factors such as land ownership,

geographical conditions that reduce productivity, limitations to satisfy nutrition demands

within the household, and exposure to high temperatures in countries of sub-Saharan

Africa, Asia, Latin America and the Caribbean are also associated with survival

economies that limit people’s capacity to expand their opportunities for living a healthy

life (Franco-Paredes & Santos-Preciado, 2011; Hotez & Aksoy, 2011).

Age, sex and ethnicity have also been studied in relation to NTD transmission

patterns, demonstrating that women and children are particularly vulnerable to experience

the worst consequences of disease in regions such as Sub-Saharan Africa (Armah et al.,

2015). Household composition, social status and, in some cases, educational attainment

19 limit populations’ ability to assess their own health, which in turn affects their capacity

to access preventive treatments delivered through vaccines or antiparasitic drugs (Barry,

2014). Even more problematic could be the fact that once they have fully developed,

infectious diseases can reduce people’s ability to work as a result of the disabilities they

produce, including blindness for onchocerciasis, body deformation and impaired function

for lymphatic filariasis (LF), stunting and cognitive underdevelopment for soil

transmitted helminthiasis (STH), anemia for hookworm disease, and cardiac conditions

for Chagas disease (Gazzinelli et al., 2012).

Due to their reliance on livestock and agricultural production, rural families are in

closer contact with environments that favor transmission of infectious diseases when

compared with their counterparts in the city (Mableson, Okello, Picozzi, & Welburn,

2014). Reductions in agricultural productivity could result from loss of manpower and

rights-based deprivation, mainly experienced by landless tenant farmers, migrant

peasants, and pastoral nomad. Armed conflict can radically increase exposure to NTD

since people can stay under risky environmental conditions while trying to escape, hide

or find survival conditions in spaces that serve as dwellings for vectors as well (Barry,

2014). Migrants are particularly vulnerable to this kind of exposure when they are forced

to leave their lands and bring their belongings with them, which can exacerbate

cohabitation with animals (Bennett et al., 2011). Migrants are more often exposed to the

unsanitary conditions and overcrowding typical of refugee camps and temporary

settlements, increasing their risk of contracting intestinal parasitoses and helminth

infections (Gazzinelli et al., 2012). Moreover, health achievements are threatened during

armed conflict, which in the case of NTD, can result in inability to access chemotherapy

20 and interruption of treatment. This situation is especially troublesome in contexts

where MDA is administered through community health workers that work on voluntary

bases due to lack of opportunities (Hotez & Aksoy, 2011).

Economic, cultural, and social practices intertwine to increase risk-prone —or so

perceived— behaviors leading to disease spreading. The case of shoe wearing in Uganda

illustrates this point (Ayode et al., 2013):

Shoes were thought to confer dignity as well as protection against injury and cold. However, many practical and social barriers prevented the desire to wear shoes from being translated into practice. Limited financial resources meant that people were neither able to purchase more than one pair of shoes to ensure their longevity nor afford shoes of the preferred quality. As a result of this limited access, shoes were typically preserved for special occasions and might not be provided for children until they reached a certain age. While some barriers (for example fit of shoe and fear of labeling through use of a certain type of shoe) may be applicable only to certain diseases, underlying structural level barriers related to poverty (for example price, quality, unsuitability for daily activities and low risk) are likely to be relevant to a range of NTD (p.1). Also at a cultural level, malformations derived from NTD are considered

important sources of stigma and discrimination affecting people’s ability to access

employment and education opportunities.

On top of the isolation and emotional distress derived from these practices, NTD

affected populations face the risk of receiving wrong medical treatment as a result of

health personnel’s lack of training on the specific aspects of these diseases (Gazzinelli et

al., 2012). Dubious quality of existing sources and absence of data create additional

difficulties for accurately estimating population at risk, prevalence, incidence, and

duration of infection, among other critical epidemiologic information necessary to

support decision-making in NTD control strategies (Hotez et al., 2014). This lack of

epidemiological data often coincides with under-diagnosis derived from health providers’

21 poor awareness about NTD’s transmission patterns and treatment, as well as

inaccessibility or unavailability of diagnostic tests (Hotez, 2014). Underreporting, poor

infrastructure for veterinarian and human services, as well as NTD unspecific and

sometimes silent symptomatology also collude to challenge conventional approaches to

disease prevention (Okello et al., 2015).

Particularly, the MDA strategy faces operational challenges associated with

communities’ voluntary involvement, as well as effective monitoring and evaluation

(Prichard et al., 2012). Structural limitations faced by populations living in contexts of

poverty are consistently neglected by researchers’ approach to the underlying social and

economic causes of poverty. Preference for ethnomedicine, people’s tendency to save

drugs for the future, and conspiracy theories about the ‘real’ goals of preventive

chemotherapy distributed through MDA campaigns (Prichard et al., 2012), are some of

the factors previously associated with limited effectiveness of MDA strategies. Critiques

of this approach point out to lack of consultation with afflicted communities leading to

increasing gaps between decision makers and populations at risk, which in turn maintains

or exacerbate social inequalities.

Noteworthy is a consistent reference to issues of implementation in NTD

literature, particularly focused on advocacy for research and development of treatment,

elimination, eradication, and control measures. The so-called ‘vaccine diplomacy’,

consisting in promoting political collaborations between countries for vaccine

development (Hotez, 2010), is a concrete example of how the NTD research agenda has

pushed political interests beyond the specific realm of health. However, policies focused

on social inequalities themselves have been claimed to be more definitive for effectively

22 addressing the needs of health sectors in developing nations than the current influx of

inter-sectorial collaborations and aid resources promoted through the NTD campaign

(Gazzinelli et al., 2012).

The spectrum of risks posed by poverty to the spread and occurrence of NTD

surpasses the specific health challenges produced by infectious diseases themselves.

Epidemiological, economic, technical and environmental arguments are included in this

configuration of risk, sometimes to demonstrate the relevance of NTD for scientific

communities, sometimes to support or complement WHO’s advocacy purposes.

Chagas Disease

The case of Chagas disease (CD) exemplifies the complexities and intertwined

levels of neglect previously described. CD is caused by a protozoan parasite called

Trypanosoma cruzi (T. cruzi) that can be found the hindgut of blood-sucking bugs known

as triatomines. The most common route of human transmission of CD occurs in poorly

constructed domiciliary environments where triatomines can remain hidden in cracks and

crevices during the day and become active at night to search for blood sources.

Triatomines usually feed on people’s blood when they are sleeping; in order to make

room for larger meals, they defecate while feeding and leave the parasite on their feces on

people’s skin. Inadvertently, people bring T. cruzi to their system by rubbing the

punctured wound where triatomines have been feeding from or through the mucus

membranes of mouth and eyes.

Once the parasite enters the human system, it can invade cells and multiply inside

them. In some cases, this first phase of invasion expresses as a swelling of the area of

entry, known as chagoma. After multiplication in the cells, T.cuzi acquires a rounded

23 form called trypomastigote, which can easily circulate through the blood system and

reach vital organs (CDC, 2016). Once organs are invaded, people can experience

symptoms such as fever, headache, edemas, and in some cases, enlargement of heart,

liver and spleen. This period is known as CD’s acute phase. People can also remain

asymptomatic for a very long time, until they develop the next phase of T. cruzi infection

known as chronic. At this stage people can experience arrhythmias, palpitations, chest

pain, and develop severe cardiopathies (Gascon, Vilasanjuan, & Lucas, 2014).

Development of megacolon and mefaesophagus are also possible at this latter stage of the

disease.

No vaccine has been developed for CD. Medicines such as nifurtimox (Bayer)

and benznidazole (Roche) have been used to treat symptoms in the acute phase, but both

drugs have shown side effects that become more serious as a patient’s age increases,

including renal and hepatic complications (Viotti et al., 2014). Even though CD exhibits a

highly inefficient transmission cycle, ongoing contact between humans and vectors over

time increases the possibilities of contracting the infection and developing the disease.

Therefore, WHO has recommended control programs to focus on interrupting the

transmission cycle between vectors and humans. Selective or communitywide indoor

fumigation with deltrametine accompanied by information and education programs

constitute the core of the control measures currently promoted by WHO to control

intradomiciliary transmission (Gilson et al., 2011; Grijalva, Villacis, Ocana-Mayorga,

Yumiseva, & Baus, 2011; Grijalva et al., 2015)

CD has been classified as a neglected tropical disease because it mainly affects

populations in rural regions or impoverished areas in urban settings in the Americas.

24 Different species of triatomines have been identified in Mexico, Central America, the

Andean region (Colombia, Ecuador, Venezuela, and Peru), the Southern Cone

(Argentina, Brazil, Bolivia, Chile, Paraguay, and Uruguay), and the south of the US

(Hotez et al., 2012). The biology of these different species creates specific conditions for

control programs. For example, the South Cone Initiative, recognized for being highly

effective in vector control, directed most of its efforts toward Triatoma infestans, a

species mainly restricted to human created environments (Dias, 2007). Since this species

can only be found in natural environments in some Bolivian regions, vector control

programs in Argentina, Brazil, Paraguay and Chile were highly successful at controlling

triatomines’ domiciliary infestation with sustained indoor fumigation, which lead to

significant decrease in CD transmission in the region (Schofield & Dias, 1999). That is

not the case of Central America where the main vector, Triatoma dimidiate, has been

found in association with palm trees and other sylvatic environments surrounding

traditional homes in countries such as Guatemala and Mexico (C. Barbu, Dumonteil, &

Gourbiere, 2009; Bustamante, Monroy, Rodas, Juarez, & Malone, 2007). Since effective

control methods focused on the palms have not been developed, international guidelines

recommend multiple spraying of the homes, which usually derives in reinfestation after

the residual effect of the insecticide, has receded (Grijalva et al., 2011).

Control efforts in areas where the vectors are endemic require different, and in

most cases, complex approaches to disease prevention at multiple levels. In these cases it

is necessary to understand a series of associations between vectors, reservoirs, hosts and

natural environment, in order to propose alternative approaches that can more effectively

and sustainably interrupt CD transmission cycle. That is the case in Ecuador, where

25 sixteen species of triatomines have been identified (Abad-Franch et al., 2001). Given

Ecuador’s geographical diversity, these different species show particular patterns of

association with natural environments in coastal and mountainous areas. Some of these

associations are determined by geographical characteristics that allow settlement of

particular species, such T. dimidiata, Rhodnius ecuadoriensis, and Panstrongylus howardi

in domestic and peridomestic areas of Manabi (Abad-Franch et al., 2001; Grijalva,

Suarez-Davalos, Villacis, Ocana-Mayorga, & Dangles, 2012), and Triatoma carrioni,

Panstrongylus chinai, and P. rufotuberculatus in the highlands, particularly Loja province

(Grijalva et al., 2015). Other associations are determined by factors such as proximity of

human dwellings to the natural environment. In Manabi, for example, researchers have

identified squirrels’ nests, rodents, opossums, and a particular species of palm acting as

hosts and reservoirs of P. howardi (Grijalva et al., 2011). The interactions of these

elements facilitate an ongoing circulation of vectors from peridomestic areas and to the

natural environment and vice versa, which increases the likelihood of contact with human

beings.

In addition to these ecological factors, control programs recommend to attend to

socio-economic conditions, productive activities and cultural practices that could

constitute risk factors for disease transmission. That is the case of Loja province where

triatomines presence has been associated with traditional elements of rural life such as

pigs and goats breeding, as well as lack of latrines and storage units (Grijalva et al.,

2015). Considerations about home structures are also relevant in this case since

triatomines presence inside domiciliary areas has been particularly found in structures

built with adobe walls, clay tiles, and dirt floors (Grijalva et al., 2012).

26 Additionally, CD faces challenges associated with lack of awareness in affected

populations and government authorities, limited funds assigned for research, low access

to diagnostic tools and treatment, but main and foremost, sustained marginalization

determining the conditions of life of populations at risk (Viotti et al., 2014). All these

characteristics are present in the Ecuadorian context, where the cycle of poverty and

disease is exacerbated by the limited capacity of the national control program. These

structural issues are very likely to remain unaddressed since control programs very rarely

take scientific knowledge into consideration when designing interventions at local,

provincial, and national levels. Some progress has been made, but political issues

affecting resource allocation have to be taken into consideration in order to achieve

sustainable CD control (Dumonteil et al., 2016).

Contributing to the problem of CD is its slow-onset, which makes difficult for

individuals to detect and treat the infection in its early stages. This condition added to the

disease’s disproportionate occurrence in segments of the population that have limited

access to healthcare, limits the possibility of detecting the disease in early stages. Thus,

efforts aimed at disease prevention are pivotal to address the endemic issue of CD in the

rural Americas (Ventura-Garcia et al., 2013).

CD’s epidemiology is alarming due not only to its high prevalence and extended

under-diagnosis, but also for the significant health and economic difficulties that it brings

to affected individuals and families. Statistics suggest that a third of individuals with the

disease will develop gastrointestinal and cardiovascular issues, including heart disease

(Bonney, 2014), which is one of the leading causes on unemployment worldwide.

Considering that health implications associated with CD are cause of disability (e.g.,

27 heart disease), it is not surprising that there are also important economic consequences

associated with this disease. Research estimates that the annual economic cost of CD is 7

billion dollars, surpassing the annual GDP of 192 individual countries –based on GDP

estimates of the United Nations (Lee, Bacon, Bottazzi, & Hotez, 2013).

Prevention programs aimed at sustainable control of CD require serious

consideration of CD transmission cycle, as well as the socio-economic factors associated

to its occurrence. In first place, attempts to contain the spread of the illness through

eradication of bugs have proven successful only in the short term; once the residual effect

of insecticide goes away, triatomines are likely to recolonize fumigated dwellings

(Grijalva, Palomeque-Rodriguez, Costales, Davila, & Arcos-Teran, 2005). Additionally,

the issue of CD is relatively unacknowledged both at large and small scales. Lack of

awareness could be theoretically tied to the aforementioned slow-onset of the illness,

decreasing the temporal connection between infection with the virus and its associated

negative consequences. Due to this weak temporal connection, it should not be a surprise

that CD takes a back seat for affected communities when compared to issues perceived as

more salient or urgent. Therefore, preventative strategies capable to address

epidemiological risks while engaging in sustainable, enduring and effective efforts to

understand the dynamics of the disease in contexts of poverty are needed.

Healthy Homes for Healthy Living

The Healthy Living Initiative (HLI) is a health promotion program designed to

address socio-economic dynamics leading to CD in southern Ecuador. This initiative

emerged from entomological data collected by the Infectious and Tropical Disease

Institute (ITDI) at Ohio University (ITDI) and the Center for Research on Health in Latin

28 America (CISEAL) showing that traditional control strategies at the household level

are effective only for short periods of time but not enough to interrupt transmission in the

long run (Grijalva, Palomeque-Rodriguez, Costales, Davila, & Arcos-Teran, 2005).

HLI’s main goal is to create a sustainable model for CD prevention adapted to the

specific conditions of transmission in Loja province. Three premises support HLI’s

actions: a) poverty is a complex phenomenon underlying the dynamics of transmission;

b) as a complex phenomenon, poverty expresses in multiple forms of exclusion

experienced by local individuals and communities, including inequalities in their access

to health and health-seeking behaviors; c) working closely with local populations in the

definition of a sustainable model for disease prevention can facilitate the design of a

general framework that addresses not only risk factors for CD transmission, but also

social priorities for local populations.

An initial needs assessment conducted in 2010, as well as subsequent

reassessments formulated in 2011 and 2012, suggested three action lines that have

constituted HLI’s general framework: infrastructure improvement, income generation,

and health promotion. The communities focused by HLI, Chaquizhca, Bellamaria, and

Guara, are located in Loja province, an area characterized by high elevation, poor roads

and limited transportation alternatives, all of them factors that increase the isolation and

marginalization faced by local populations in relation to other towns. This situation also

restricts their access to larger markets and, consequently, their economic participation

and competitiveness.

Construction of drinking water systems, formalization of income generation

initiatives, and support of collaborative efforts aimed at strengthening negotiating skills

29 among local leaders in these rural communities have also been part of HLI’s efforts

from its inception. They are considered fundamental for understanding existing dynamics

of collaboration, as well as for generating stable and trustworthy working relationships

between local population and external actors.

HLI’s main project is Healthy Homes for Healthy Living (HHHL), a strategy

focused on designing, building, and promoting living environments conceived to deter

triatomines presence in intra and peridomestic areas of the homes located in these

communities. The project has worked to rebuild four homes and improve two more since

2013, with an equal number of partnerships established with local families. Once this

phase is completed, HLI expects to extend the current HHHL model to as many homes as

possible in this area via full reconstruction or improvement.

Research Purpose

After five years of implementation at small scale, HHHL has accumulated an

important wealth of knowledge derived from direct experiences of implementation that

could be systematically elaborated to advance knowledge on CD control and prevention.

Consequently, this research aimed to explore the conditions under which home

improvement can lead to sustainable control of CD in southern Ecuador. Using HHHL as

reference, I conducted ethnographic grounded theory to understand factors and dynamics

within the home space that could lead to sustainability of control measures in a living

environment such as the ones proposed by this project. I looked at the role that dialogic

approaches to disease prevention can play in accomplishing this idea of sustainability

when working with marginalized populations such as the ones participating in HHHL.

Finally, I provided ideas about how this theoretical construction of sustainability can

30 inform implementation of the HHHL model at medium and large scales in Loja

province. Finally, this study aimed to generate knowledge on how to translate

populations’ experience of poverty and marginalization into population-centered models

of implementation for NTD programs.

31 Chapter 2: Theoretical Foundations

Living Environments and Health: A Health Systems Perspective

In 1909, Brazilian scientist Carlos Chagas described the transmission cycle of

Chagas disease as follows:

[triatomines] inhabit human domiciles, attacking human beings at night after lights are turned off and keeping themselves hidden during the day in walls’ cracks, houses’ roofs, in general, in any place where they can find shelter (…) more abundantly in poorly built constructions, mainly in huts with unfinished walls and grass coverage (p.1).

This description depicted a panorama of complex interactions between human

beings, insects, and living environments potentially leading to disease. It also illustrated

a scenario of systemic dynamics in which changes in one factor could affect the final

result of the entire interaction. Ever since, CD’s preventive interventions have been

focused on interrupting its transmission cycle by preventing home infestation through

different routes.

The measure most strongly recommended by WHO to prevent CD has been

insecticide spraying with delthametrine (Bayer), a highly effective substance that

basically eliminates triatomines presence for periods varying from three to six months

depending on specific environmental conditions (Grijalva et al., 2011). However, once

insecticides’ residual effect disappears, sylvatic triatomines rapidly re-colonize housing

units. In order to improve systematic control, delthametrine has been used in combination

with other preventive measures such as improved sanitation and provision of high quality

and durable plastering materials (Bustamante et al., 2009); amelioration of ventilation

and illumination openings (Rojas de Arias, Ferro, Ferreira, & Simancas, 1999); and

community surveillance (Abad-Franch, Vega, Rolon, Santos, & Rojas de Arias, 2011).

32 The most recent roadmap for NTDs control programs states that the objective

for CD in Latin America is to interrupt transmission via intradomiciliary vectors,

particularly in peri-domiciliary areas. The idea of controlling transmission patterns in

intra and peri-domestic areas immediately takes control measures from organizational

spaces where technical decisions are made, to the very private spaces constituted by

houses of individuals and families in marginalized communities of developing countries.

This approach demands attention to systemic interactions occurring at the

household at multiple levels. WHO has identified four interrelated dimensions of housing

with influence over the physical, social and mental health of occupiers (Braubach, 2011):

the physical structure; the psychosocial, economic and cultural construction of the home;

the neighborhood infrastructure; and the communities constituted around the

neighborhood. Specifically for vector control, inadequate housing has been defined as

houses that do not meet the minimum requirements of low-income families, do not

comply with building regulations, and are pre-disposed to pest infestation and

inhabitants’ illness (Schofield, Briceño-Leon, Kolsprut, Webb & White, 1990). Extreme

weather, household air pollution, and lack of clean water and sanitation are also likely to

attract diseases of vectorial origin in low-income settings (Haines et al., 2013).

Additionally, a recent study conducted by the Schools of Architecture, Design and

Conservation at The Royal Danish Academy of Fine Arts established that housing

designs interested in vectorial control in hot humid tropical areas might consider low

thermal mass, light walls, light roofs, cross ventilation, buildings raised above the

ground, long facades, light or reflective colors, ventilated roof cavities, and vegetation

characteristics in order to maximize their use as facilitators of temperature control. In

33 order to avoid major investments that could probably fail in meeting cultural and

scientific requirements, it has also been recommended to build prototypes and evaluate

their effectives by creating mixed systems combining criteria such as feasibility,

acceptability, performance, thermal comfort, and entomological rates (Knudsen & von

Seidlein, 2014).

However, home improvement directly impacts socio cultural dynamics beyond

the physical elements of the construction. Aspects such as time constraints, lifestyle,

culture, family composition, motivation, social class, reference groups, and perception of

wellness have been suggested to assess housing preferences in resource-limited

environments (Gibler & Nelson, 2003). Similarly, it has been identified that availability

of construction materials, populations’ income levels, relationships with local authorities,

access to alternative models of housing, possibilities of collaboration between designers

and local populations, access to training, and the role of the state to secure tenure of land

for marginalized communities, are crucial elements for planning interventions focused on

creating safer environments for vector control (Hardoy, Cairncross, & Satterthwaite,

1990).

Considering the high impact that safer structures can have on the overall

environment of the house, it is not rare to find associations between infrastructural

interventions such as wall plastering and ceiling elevations and the control of one or more

vector transmitted diseases (Lindsay et al., 2003; Lucero et al., 2013). It has been

documented, for example, that malaria was eradicated in the United States and

substantially reduced during the construction of the Panama Canal through specific

infrastructural measures, including installation of screens in doors and windows (Lindsay,

34 Emerson, & Charlwood, 2002). Similarly, a recent study conducted in Uganda

demonstrated that home design is likely to explain some of the heterogeneity of malaria

transmission even in highly endemic areas (Wanzirah et al., 2015), as well as high

temperatures outside the house have been associated with contracting sleeping sickness

inside homes in Zimbabwe (Vale, Chamisa, Mangwiro, & Torr, 2013)

In spite of these important linkages between living environments and health,

housing improvement is a measure highly contested from a health finances point of view

(Haines et al., 2013). In first place, home improvement is a control measure that involves

multiple factors, some of them directly related with diseases targeted by prevention

strategies, but most of them only partially linked to them. This makes even harder to

isolate factors in order to establish causal relationships between home improvement and

better health (Vale et al., 2013), which has lead health economists to argue that more

specific, cheaper, and faster solutions for disease prevention might exist (Knudsen & von

Seidlein, 2014).

This is, however, an argument contested by systemic perspectives applied to

health interventions: technological solutions —such as mass drug administration—

provide an easy fix that is not necessarily effective and might not be sustainable in the

long run. On the other hand, it has been demonstrated that even small changes in

infrastructure can increase the perceived value of the dwellings and motivate owners to

invest additional resources in maintaining and improving the home space (Lindsay et al.,

2002). Moreover, it has been stated that since homes constitute a particular space where

multiple decisions about disease prevention and control are made, good quality housing

should be considered a structural element of any health system (Lindsay et al., 2002).

35 Systemic perspectives have been considered in NTD prevention when

attempting to include not only the biomedical conditions experienced as a consequence of

infectious diseases, but also the different forms of exclusion that constitute the experience

of marginalization for neglected population. Integrative models such as ecosystems

approaches to health, Ecohealth (Briceno-Leon, 2009; Dumonteil et al., 2013) and One

Health (Webster, Gower, Knowles, Molyneux, & Fenton, 2016) have been applied with

varied results for disease control (Gurtler & Yadon, 2015).

Ecohealth (Forget & Lebel, 2001) has been proposed as a way to improve

people’s health, while strengthening communities and promoting environmental

sustainability. Six principles guide research conducted under eco-health perspectives:

systems thinking, transdisciplinary research, participation, sustainability, gender and

social equity, and knowledge to action (Charron, 2009). Eco-health researchers

acknowledge that the practice of systems thinking generates important challenges for the

actual implementation of control measures, particularly because they require balance

between methodological flexibility and rigor, which in turn generates challenges for

evaluating their effectiveness both in terms of disease control and costs. When applied to

Chagas disease, Ecohealth approaches have been developed in projects interested in

improving infrastructure with specific variations according to the implementation

context. For example, educational workshops, improved insecticide spraying for tiled

roofs and walls, participatory rodent control measures, waste management, productive

household activities and participant based reflective process have been used in Guatemala

(Bustamante, De Urioste-Stone, Juarez, & Pennington, 2014); low-cost housing

improvement techniques, promotion of house cleaning activities, removal of chickens and

36 dogs from human dwellings, and community participation have been combined in

Bolivia (Lardeux, Depickere, Aliaga, Chavez, & Zambrana, 2015); and installation of

window screens and education workshops addressing management and cleaning of

chicken coops has been implemented in Mexico (Waleckx et al., 2015). Although

important improvements in the general health of the population were achieved in all these

cases, additional resources are required to follow up and appraise the sustainability of

these efforts. Comprehensive approaches including community mobilization,

interdisciplinary collaborations, and multi-stakeholder strategies might be necessary to

achieve sustainable vector and disease control (Gurtler & Yadon, 2015).

Similarly, the One-Health approach highlights the need for interdisciplinary and

comprehensive approaches to health promotion when addressing intersections between

health, cohabitation with animals, and ecosystems (Webster et al., 2016). This approach

has made visible synergistic dynamics facilitating infectious disease occurrence in

contexts of poverty by highlighting interactions between living conditions and disease

(Webster et al., 2016). The One Health approach advocates for understanding the

knowledge and values of populations at risk of NTD beyond the operative restrictions

that conceptualizations about their role as beneficiaries might suggest (WHO, 2012). One

Health heavily relies on systems thinking to propose potential routes of action and

evaluating interventions’ effectiveness under premises of sustainability by recognizing

the dynamic nature of all the constitutive elements of human environments: sustainability

not only refers to time, it also refers to space and the finitude of resources. One Health

proposes an ecological interpretation of disease in which both current and future

variations and effects of infectious diseases, including evolutionary factors driving to

37 drug resistance, change of hosts, hybridization and unexpected changes of infectious

agents resultant from particular control measures, are considered (Webster et al., 2016).

Implementation Research

The health systems perspective proposes implementation research as a

fundamental piece for addressing NTD (WHO, 2012). Defined as a scientific endeavor

interested in understanding processes and resources required for disease prevention and

control in real-world settings, implementation research is focused in context-specific and

evidence-informed knowledge (Peters, Adam, Alonge, Agyepong, & Tran, 2013). Given

that NTD occur in contexts determined by complex social, economic and political factors,

implementation research explores interactions between disease and larger social

structures with actual and potential consequences for affected populations (WHO, 2012).

Implementation research has been informed by pragmatic thinking focused not only in

the identification of barriers for the execution of plans, but also on creative ways of

defining effectiveness under real —instead of probabilistic— circumstances (Gilson et

al., 2011).

Implementation research expands narrow perspectives suggested by top down

disease prevention strategies and proposes complex approaches to question traditional

ways of conceptualizing and designing health interventions’. In spite of important

limitations for integration of concepts and methods in interdisciplinary work, as well as

divergent interests driving the values and priorities of funding institutions and local

populations, implementation research has been identified as a key instrument for bridging

gaps and developing more equitable partnerships between stakeholders, researchers and

populations involved in scientific endeavors.

38 Implementation research intends to understand organizational, social, and

political processes constructed through communication and management practices that

could affect the effectiveness of specific interventions (Sheikh et al., 2011). A recent

study conducted by the Center for Mental Health Services Research and the Institute of

Medicine identified ten elements defining allocation of resources for implementation

research based on conceptual and methodological gaps of the field in the US (Proctor,

Powell, Baumann, Hamilton, & Santens, 2012). One of those gaps is theoretical

development. According to the authors, theory has been largely underutilized in

implementation research, which in turn has limited researchers’ ability to identify

contextual factors and suggest specific implementation strategies.

These findings coincide with theoretical perspectives that have already identified

the value of systems thinking in health promotion. However, as complexity of the

proposed solution increases, new challenges associated with its implementation also

emerge. The lack of theoretical references is particularly problematic when trying to scale

up control measures for vectorial transmission in NTD (Colley, 2014; Okorie, Bockarie,

Molyneux, & Kelly-Hope, 2014). Considering that scaling up processes specifically aim

to bring the benefits of pilot or experimental projects for which enough evidence of

positive results exist (WHO, 2012), they are usually challenged by their capacity to

determine the specific breadth and depth of the intervention in which the proposed

solution will work and maintain those results (Mangham & Hanson, 2010). Additionally,

high costs associated with the distribution of solutions, lack of interdisciplinary work and

intersectoral integration, as well as important failures in access to health systems, have

been identified as particularly limiting factors when trying to take systemic models to

39 large sectors of population in Latin America and the Caribbean (Ault & Nicholls,

2010) (Ault & Nicholls, 2010).

All these concerns are of critical importance as they determine future questions in

scientific research, as well as the use of financial resources for disease control. However,

in this case the question for sustainability entails particular relevance because it alludes to

the long-term aspiration of poverty alleviation as main goal of the NTD strategy.

Social Construction of Health

But, how are these system perspectives implemented? How do these theoretical

constructions translate into programs and actions directly affecting populations’ health?

As a concrete form of social interaction, health efforts do no happen in a vacuum. They

are the result of specific conditions that alter the practices and resources framing our

understanding of disease and health as social phenomena. Babrow and Mattson (2003)

argued that health efforts are constructed in a complex interweaving between bodily,

emotional, cognitive and social experiences that allow specific levels of interaction

around the concepts of disease and wellbeing. In this sense, health promotion

interventions should address one or some of these levels of interaction in order to

generate context specific agendas that better interpret individual, interpersonal,

community and political circumstances of the different stakeholders involved in a

particular effort.

As an illustration of this point, the definition of household changes across cultures

by emphasizing specific elements of the system such as kinship, composition, activities,

structures, locations, and trajectories of change that define members’ belonging to a

concrete space (Sajeck, 1996). For example, for the Japanese culture a household is

40 defined by the concept of shotai, referred to individuals sharing a common budget,

while in the Hindu culture home is organized around the idea of zadruga, numerically

prominent social groups conformed by multiple households sharing a common kitchen.

However, Sajeck explains, a general agreement in the anthropological field is to consider

three characteristics to define membership to a household: sleeping, eating, or making

economic contributions. These three characteristics exemplify deeply entangled

behavioral, socio-economic and health related dynamics influencing decision making

within this social structure that can also be relevant when analyzing health issues.

The origins of health communication are located in post-positivistic perspectives

that looked at communication as a tool to facilitate the delivery of health products and

services. The underlying assumption in this perspective was that the evaluation of good

or ill health had to rely on assessments conducted under the lens of specialized/scientific

knowledge. Whether biological, psychological, or medical, scientific expertise concerned

with body functioning, and specifically with disease occurrence, was privileged. Under

this perspective, communication played a “support role” in unidirectional processes

mainly interested in spreading technical information about health. Media theories popular

in the 50’s and 60’s supported this perspective under the assumption that health issues

could be prevented if people were effectively informed and educated about the risks they

faced. Concurrently, psychological theories provided explanations about cognitive

functions underlying individual mental processes that informed the design of persuasive

campaigns and messages for behavior change.

The field of communication expanded in subsequent years through the

development of socio-cultural perspectives that questioned traditional transmission

41 models and proposed communication as the constitutive material of social life. With

this turn, health communicators were faced with profound questions about the factors that

influence and define individual and social conceptualizations of health. Processes and

actions carried out on daily basis to fulfill our expectations of wellbeing and deal with the

implications of illness are broad and complex, deeply entrenched in physical, political,

economic, social and cultural structures. Obtaining information, applying preventive

practices, measuring risk, looking for treatment, dealing with disease, and assuming

death, are all processes that reveal the conceptualization of health hold by individuals and

social groups, but more importantly, give meaning to human experiences in relation to

life beyond the individual body.

In this sense, the meaning of health, as any social issue, is determined by who

participates in its definition, under what role, and through which languages. As sustained

by Deetz (1996a), meaning is constructed based on epistemological orientations derived

from individuals’ relationships with larger structures. Our knowledge of the world is

produced, not simply transmitted, during that relationship. Since personal orientations are

determinant in that process, it is of the highest value to understand that multiple

interpretations can derive from the same event and that all of them can be equally valid

from specific points of view. Craig (1999) supported this thesis with the Constitutive

Model of Communication (CMC). The CMC states that construction of meaning is the

result of endless reflexive processes informed and maintained by everyday practice.

Consequently, communication is the fundamental human mode of explaining and being

in the world. Because of its symbolic character, communication lies at the core of our

definition of physical states in relation to spiritual, emotional, and ethical systems. As a

42 metalanguage, communication processes and resources allow us to name the world

considering embodied experiences, social relationships, and ideological expectations, and

in doing so, we are able to provide our existence with symbolic character.

Symbolic interactionism (Mead, 1934) explains meaning construction as a

fundamental element of human nature by emphasizing that people assign meanings to

their experiences and act in relation to those meanings. Consequently, meanings are not

fixed and are, instead, constantly constructed and reconstructed in social interaction.

Human beings cannot avoid the ongoing practice of meaning-making because it defines

our being in the world (Pearce, 1989); by connecting regular micro-practices with larger

ontological and epistemological structures, individuals are able to build their

interpretations of reality based on the constitutive patterns of their existence.

In this sense, health communication professionals are faced with challenges

derived from the interplay between practices at micro and macro levels fundamental in

the creation and recreation of human experience in relation to health. The simple act of

defining a health problem relies on ideological foundations and rhetorical constructions

that orient us to do so. What kind of discourses inform our definitions of good or ill

health, which factors should be considered to evaluate our susceptibility toward particular

risks, and what types of knowledge should be considered valid when making decisions

regarding healthcare, are expressions of how particular social orders are enacted,

transformed, and sustained through communication resources and practices.

In the reconstruction of reality, some level of coordination between the object as

constructed and the object as perceived is required. That coordination, however, is a

fundamentally challenging process: actions often do not derive in the results initially

43 expected for them, and even if executed as planned, can have counterproductive effects

(Pearce, 1989). As extensively studied in the field of health communication, unintended

consequences result from the fact that health promotion actions come into being in realms

of human experience that do not necessarily coincide with the ones that initially conceive

them (Cho & Salmon, 2007).

The NTD strategy, in particular has been criticized for adopting the idea of

‘bringing health’ to populations in need as its flagship project without consideration of

gender norms, social class, historical relations, language, and organizational systems that

more significantly determine the adoption or rejection of healthcare practices for specific

cultures (Manderson, Aagaard-Hansen, Allotey, Gyapong, & Sommerfeld, 2009). This

criticism coincides with positions put forward by communications specialists aligned

with the field of participatory communication that have pointed out the limited capacity

of information-education-communication (IEC) strategies to promote sustainable

behavior change and agency among marginalized populations (Airhihenbuwa &

Obregon, 2000; Obregon & Waisbord, 2010; Wakefield, Loken, & Hornik, 2010).

The study of culture in health promotion provides important arguments to

understand the contextual nature of communication in health (Airhihenbuwa, Ford, &

Iwelunmor, 2014; Dutta & Basu, 2008). Cultures are dynamic systems that create and re-

create themselves in the enactment of the relationship with the other. This recreation

limits and opens spaces to reformulate alternative ways of structuring health interventions

that could more effectively attend the situation of exclusion faced by populations at risk

of NTD. Health promotions strategies focused on reducing health disparities are called to

44 attend social exclusion not merely as technical concern, but also as lived experience for

neglected populations (Tacket, 2009).

From Persuading Individuals to Dialogic Health Promotion

The need for systematic approaches to disease prevention has been supported by

policy documents and resolutions published by multilateral agencies, as well as academic

actors involved in health research. While describing socio-economic dynamics leading to

disease occurrence, these policy documents also state the need to generate conditions for

participation of multiple actors, particularly affected populations, in health promotion

strategies. The Alma Ata Declaration, for example, claims that people have the right to

participate in planning and implementing strategies to promote their health care.

Subsequently, the Ottawa Charter stated that communities should be involved at all

stages of the health promotion planning processes: from setting priorities, to making

decisions about planning and implementation strategies. More recently, the “One World,

One Health” Declaration gave a step further to establish invite collaboration between

governments, local people, and the private and public (i.e. non-profit) sectors to address

global health challenges and promote biodiversity conservation. Although these

declarations recognize the interdependence of environmental, political and social factors

in the preservation of human health, as well as the need to create conditions to facilitate

individual and community involvement in decisions that directly affect their lives, they

do not suggest ways in which populations’ perspectives should affect programs’ priorities

and definition of future directions. Although significant as general frameworks, they do

not approach structural issues of power and culture that significantly limit programs’

capacity for social transformation.

45 Anthropological work conducted around the ideas of ethnomedicine and

medical pluralism have demonstrated that the biomedical model is rooted in Western

ideologies —such as individualism and empiricism— that fundamentally contradict the

realities of multiple social groups around the world. In very diverse contexts, social

groups have conducted what they consider a healthy life within the parameters of their

culture, even in the presence of disease and in absence of technical solutions for health

maintenance (Airhihenbuwa et al., 2014). A consequence of this imposition of Western

values in the design and implementation of health promotion programs has been a

conceptualization of culture as an aggregate of faulty individual behaviors, instead as a

system functioning under its own logics (Escobar, 1995). Socio-cultural perspectives that

questioned the traditional interest of communication models’ for diffusion of information

regardless of contextual factors, have pushed for a reformulation of the health

communication field towards more complex perspectives in which physical, political,

economic, social, and cultural structures could be more effectively considered and

addressed.

Dialogic approaches emerge in this context as a concrete communication stance

interested in questioning power relations traditionally existing in research contexts.

Arthur Frank (2005) describes dialogical research as an encounter in which both the

researcher and participants are subjects of change as a result of an unfolding relationship

that takes place in a unique time and space. In attempting to sustain the dialogical nature

of the encounter, researchers make conscious choices to overcome categorical definitions

assigned by the technicalities of scholarly work to research participants in order to

capture the multiple voices interacting between him/her and research participants. In

46 Frank’s words, “research is, in the simplest terms, one person’s representation of

another” (p. 966). Therefore, researchers assume a responsibility when exploring and

representing the complexities of life as experienced by research participants. Responsible

representation is understood as an ethical imperative to produce more accurate

knowledge about the issues at hand. Instead of assuming the position of a detached

external observer, the dialogical researcher fully recognizes his/her involvement in the

accomplishment of a particular site of knowledge articulated through research, and

commits him/herself to the generation of new dialogues and new learning.

Concurrently, dialogic social change ( Greiner, 2010) takes the ideas of dialogical

research to reclaim the communicative character of interventions’ design and propose

invitational rhetoric as a generative element of social transformation. Greiner (2010)

asserts that dialogic interventions are designed to invite rather than require action,

making possible for interlocutors in dialogue to meaningfully participate in processes of

change. From this perspective, facilitating agency and informed decision making should

be pursued as goals of any social change intervention, regardless of the specific social

issue intended to approach. However, when specifically applied to health, dialogic social

change sustains that communication could be misleading and ineffective when focused

on decontextualized persuasion. Greiner (2010) expands on this idea by sustaining that

individuals “cannot be developed, modernized, nor empowered” (p. 6); therefore,

interventions can render very different results if organized as perspectives being offered

to a community of autonomous individuals with valid criteria for decision-making, rather

than as a set of predefined messages strategically articulated to persuade masses of

people. Porous interventions are more suited to offer the options through structures that

47 require more pulling than pushing, being pushing the classic format of mediated

information campaigns and pulling the voluntary engagement of information seekers. In

Greiner’s words “Intervention designers with a dialogic orientation know that if their

intervention is well designed, interesting and accessible, they do not have to push their

ideas on others, the others will come to them” (p. 12).

Dialogic social change does not vilify persuasion as a rhetorical exercise; neither

does it dismiss its relevance at specific moments in health promotion efforts. What this

perspective actually proposes is that social change is an endeavor that requires profound

understanding of communication as a structuring social process beyond its rhetorical

capacity. Consequently, a common element on dialogic approaches is acknowledging that

behavior change is not the only outcome to be expected from health promotion

interventions, and even when possible, it is not necessarily positive. The specific and

complex contexts in which health decisions are made forces a deeper analysis of a wider

range of explanations for people’s behavior that more effectively could lead to

sustainable good health, as well as multiple routes of action in which behavior change or

maintenance are equally sound alternatives.

Historically, communities and individuals have been subject of characterizations

about their patterns of actions that do not necessarily consider their own understanding of

wellbeing, which can also be seen as another form of social exclusion. Social exclusion is

generally articulated through languages that marginalize, silence, reject, isolate,

segregate, and disenfranchise populations by reinforcing unequal relations (Taket, 2009),

a dynamic particularly true for the field of biomedical research, in which credentials and

formal expertise have been historically privileged over the lived experience and suffering

48 of patients and communities at risk (Kleinman, 2013). Dialogic social change proposes

that interventions communicate from the very first moment in which they are conceived

because that conception reflects ideologies underlying personal theories about the world

functioning, as well as positionalities assumed by program designers in relation to the

other.

HHHL has implemented dialogic approaches to research in an attempt to combine

scientific research and local knowledge to build living environments designed to deter

CD (Nieto-Sanchez, Baus, Guerrero, & Grijalva, 2015). By combining narrative and

assets-based research methods and traditional biomedical research, the initiative has

intended to reduce dynamics of marginalization by facilitating local communities’

empowerment as active agents in the design of solutions for their own health. Even

though it was not initially formulated under this premise, HHHL’s methodological

flexibility has allowed the initiative to grow in understanding the complexity entailed in

social phenomena such as poverty, and the enormous power of dialogue for reframing

knowledge about the impact of poverty over neglected diseases. In this sense, the

potential contribution of HHHL as an experience of dialogic social change relies not only

in their capacity to expand knowledge on NTD occurrence, but even more importantly, to

enhance the effectiveness of control strategies to improve the life of affected populations.

This research intends to understand the actual contributions of dialogical approaches to

NTD interventions’ design and health promotion efforts, as well as the viability of

applying this approach to medium and large-scale interventions.

49 Chapter 3: Methods Section

This research was formulated with the purpose of advancing knowledge on the

possibilities and limitations of implementing Healthy Homes for Healthy Living (HHHL)

as a large scale health promotion strategy for sustainable prevention of Chagas Disease

(CD) in Southern Ecuador. HHHL uses an interdisciplinary approach that includes homes

improvement, health promotion, and associativity as key elements to reduce social

exclusion affecting populations at risk of neglected tropical diseases (NTD). In doing so,

I looked at practices, rhetorical constructions, and relational dynamics (Ager, 2011) that

could support or undermine HHHL’s sustainability model in order to inform

implementation of the project at medium and large scales.

Methodological Approach and Research Questions

HHHL asserts that homes’ structural improvement, long-term health promotion at

the micro-level of the household, and community involvement in locally driven income

generation opportunities, are the basic action lines of a strategy that could potentially lead

to sustainable CD prevention. Actions in these three areas are articulated through

abductive analysis (Tavory & Timmermans, 2014) formulating that HHHL could inform

the design of interventions focused on prevention of CD, NTD, and other diseases that

are structurally connected with poverty. Even more importantly, HHHL designers state

that CD can be controlled in Loja province, and by extension, in areas where triatomines

are endemic and show sylvatic dynamics, using systemic rather than disease-centered

approaches to health promotion.

Consequently, this research aimed to address the following research questions:

50 RQ1: What factors contribute to or limit sustainable control of Chagas disease in the

communities of Chaquizhca, Bellamaria and Guara under the model proposed by Healthy

Homes for Healthy Living?

RQ2: In what ways, if so, can these factors (contributions and limitations) be addressed

in order to scale up the model to other homes in the aforementioned communities?

Research Design: Ethnographic Grounded Theory

Grounded theory.

Grounded theory (GT) is usually defined as a systematic approach to data

collection and analysis interested in generating explanations of social reality based on

emerging information grounded in actual data rather than in theory (Charmaz, 2014;

Glaser & Strauss, 1967; Strauss & Corbin, 1998). GT was initially proposed by Glaser

and Strauss (1967) while arguing that qualitative research has its own logics and capacity

to generate theories. By proposing the constant comparative method (CCM), Glasser and

Strauss developed a systematic approach to qualitative data analysis based on observation

of relationships between codes and categories that could be consistently used to develop

empirical explanations of social phenomena, as well as to assess analytical rigor in

qualitative research. CCM requires ongoing comparison of codes emerged from the data

and memo writing as basic activities leading to what they call developmental theories,

“theories of process, sequence, and change pertaining to organizations, positions, and

social interaction” (p. 114). In spite of later critiques, Glaser and Strauss are

acknowledged for moving forward scientific discussions about the reach and impact of

qualitative data with scientific purposes. Most importantly, both authors pioneered the

idea of developing middle range theories out of systematically analyzed data, and by

51 doing so, they opened the space to question generalization as only criterion to assess

the validity of emerging explanations about social phenomena (Charmaz, 2014).

Subsequent variations of GT departed from this initial formulation by

emphasizing the constructed nature of the relations observed in the data, as well as the

role of researchers and participants in the definition of meanings that could potentially

lead to theory development. Corbin and Strauss (2008), for example, emphasized the role

of the analyst in maintaining methodological rigor and making decisions about what is

relevant in a particular data set. In order to arrive to a theory, Corbin and Strauss

recommended making comparisons not only of incidents, but also of properties,

dimensions, and potential explanations (theories), as well as interrogating the data with

sensitizing, theoretical, practical and guiding questions that allow ongoing reflection

along the analytical process.

Constructivist approaches to grounded theory see both data and analysis as the

product of experiences co-created by participants, researchers, and emerging data

(Atkinson, Delamont, & Housley, 2008). Since constructivism is focused on how and

why participants construct meanings in specific situations (Deetz, 1996b; Pearce, 1989),

its extension to grounded theory looks at how, when, and to what extent the studied

experience is embedded in larger social structures in order to explain and represent

research findings (Charmaz, 2006). Constructivist Grounded Theory (CGT) claims the

main tenants of sociology as proposed by authors affiliated to the Chicago School,

particularly those alluding to the open-ended nature of social processes, the value of

human agency in meaning making, and the fundamental role played by language,

interpretation, action and temporality in research (Charmaz, 2014). Consequently,

52 ongoing reflections about data, linkages in coding structures, and researchers’

positionality, constitute basic inputs in theoretical elaborations emerged from this

perspective. Similarly, simultaneous analysis and data collection; emphasis on actions

and processes rather than dimensions and themes; use of comparative methods;

development of inductive analytic categories through systematic thinking; reliance on

theoretical sampling; and decisive interest in theory construction, are considered

minimum requirements for a grounded theory study to be considered constructivist in

nature (Charmaz, 2014).

It is the process of developing theory, not theoretical construction itself, that

concerns grounded theory. Middle range theories such as the ones proposed by GT value

the systematic effort for explanation considering the interpretive nature of the analytical

processes conducted by individuals (Suddaby, 2006). Theories developed through GT are

not intended at hypothesis testing but at generating alternative explanations to

phenomena by “accounting for what people do in specific situations and linking it to how

they do to it as contingent relationships” (Charmaz, 2014, p. 228). Different from grand

theories’ interest on explanation, middle range theories emphasize understanding of

phenomena and ongoing construction of meaning in social groups.

When coupled with ethnographic methods of data collection, GT receives the

name of ethnographic grounded theory. This method is particularly useful to

contextualize conclusions emerged from sustained involvement with the processes under

study. As such, social action is studied in its own dynamics across multiple sites and

actors. Ethnographic grounded theory is focused on the studied phenomenon or process

rather than in the richness of the context traditionally expected of ethnographic studies

53 (Charmaz, 2014). This means that research issues belonging to the realm of

ethnographic research (such as access to the context intended to study, involvement with

participants over time, direct observation, and ongoing search for diversity within the

data), get translated into the analytical requirements of grounded theory development

(Ager, 2011). Later on, this diversity of inputs facilitate constant comparison of data and

categories during the entire process of collection and analysis, as well as the development

of theory as a result of the emerging relationships between codes and categories

(Charmaz, 2014). While keeping the process open to emerging data, grounded theory

provides tools for systematic analysis and interpretation using ethnographic approaches.

Sustainability as sensitizing concept.

Sensitizing concepts can be defined as interpretive devices used to guide

researchers’ thinking in qualitative inquiry (Tracy, 2013). In GT, these concepts provide

initial ideas about issues to explore throughout the variety of methods included in a

particular researchavor. Rather than limiting factors defining the scope of inquiry and

analysis, sensitizing concepts should be treated as “points of departure for studying the

empirical world while retaining the openness for exploring it” (Charmaz, 2014, p. 30).

Considering HHHL’s interest in sustainability, I will use it as sensitizing concept.

Multiple definitions have been used in health literature to address issues of

sustainability. Some definitions emphasize elements of ownership and appropriation. The

Ecohealth approach, for example, suggests that sustainable initiatives are those capable of

effectively addressing local priorities, switching external perceptions and motivating

wider economic, political, or even environmental changes, while facilitating their

adoption (Charron, 2012). More popular are definitions that talk about sustainability as a

54 time-bounded concept. Terms such as ‘maintained’, ‘continued’, ‘durable’, ‘integrated’

or ‘institutionalized’ are popular in this perspective (Peters, Adam, Alonge, Agyepong, &

Tran, 2013). The health systems approach, for example, proposes that sustainability is

achieved when short, medium and long-term needs of health systems —and the people

they serve— are met in a balanced way (Adam & de Savigny, 2012). Finally, systems’

thinking reframes sustainability as a physical constant and a fundamental element of

resilient systems. From this perspective, a system is sustainable because it can respond to

the movements, changes, and behaviors of its constitutive elements and environment

(Bosschaert, 2012). These four elements (ownership, use of resources, temporality, and

systemic responsiveness) will be used for data collection and observed in the analysis

phase of this research (Hearld, Bleser, Alexander, & Wolf, 2016; Iwelunmor et al., 2016).

I am also interested in identifying ‘power or capacity claims’ for sustainability

(Cartwright, 2011). Cartwright asserts that notions of effectiveness in public health can

be positively impacted by the development of new theoretical perspectives departing

from the widely established notion of evidence under ‘ideal and perfect’ circumstances.

This perspective sustains that social scientists can significantly contribute to scientific

thinking by proposing arguments that can express capacity or potential beyond the

philosophy promoted through randomized control trials. Consequently,

For policy and practice we do not need to know “it works somewhere”. We need evidence for “it-will-work-for-us” claims: the treatment will produce the desired outcome in our situation as implemented there (…) Knowledge like this involves a third kind of causal claim, a power or capacity claim: the treatment reliably promotes the outcome, or reliably contributes across a given range of circumstances (Cartwright, 2011, p. 1401)

55 Similarly, characterizing the spectrum of intended and unintended

consequences derived from NTD control programs could be an important step towards

furthering notions of sustainability structurally connected with the idea of complexity

promoted by systems thinking. The unintended consequences of purposive social action

should not be considered necessarily negative, since their nature as unintended is not

axiological but overly humane in nature (Merton, 1936). Even under extreme

circumstances of rationality, human actions are co-constructed; therefore, they will

always bring unexpected results. Merton sustains that unintended consequences are often

ignored in organized action, as it usually demands an explicit set of goals to be achieved

in order to advance in the purpose of organization itself. However, Merton asserts, there

are important lessons to be learned when attention is posed not only on planned action,

but also on the unplanned actions occurring in wider interactions surrounding the

intervention or treatment. First of all, unplanned effects can inform new routes of action

derived not from the usual result of a known action, but from its unusual response. It can

also define errors in a particular context and generate arguments to question the

immediacy of results as preferred observation parameter in processes of social change.

The relevance of this element lies in the fact that “Public predictions of future social

developments are frequently not sustained precisely because the prediction has become a

new element in the concrete situation, thus tending to change the initial course of

development” (Merton, 1936, p. 904). This idea is relevant for the field of global health,

full of examples of interventions with often harmful unintended consequences (Guttman,

2000; Roberto, Murray-Johnson, & Witte, 2011). However, this continuous occurrence

56 also validates the needs to keep theorizing about pragmatic alternatives that allow

revaluation of existing theoretical models.

Study population.

I conducted purposive sampling for this research. Participants were selected from

inhabitants of the communities of Bellamaria, Chaquizhca, and Guara in southern

Ecuador that have directly or indirectly experienced interventions led by HHHL. The

study population was divided into three groups:

The first group included partner families, ergo, six families that have specifically

agreed to partner with HHHL to build or improve their homes by implementing anti-

triatomine measures. The term partner family refers to a specific conceptualization

developed by HHHL as an alternative to the term beneficiary traditionally used in

development interventions. HHHL adapted the idea of partnership that could be

explained as a means of addressing local needs through collaborative activities and

decision-making sensitive to local concerns and interests (Seddon, Billett, & Clemans,

2004). Interviews and participant observation during health promotion activities were

conducted. Family members older than 14 years old were included. In this case, minors'

assent and parents' informed consent was required.

Considering the principle of maximum variation (Lindlof & Taylor, 2011; Tracy,

2013) , the second group included an equal number of families (6) that have not

implemented an HHHL intervention. They were selected to closely match the decay

category of the homes and socio-economic conditions of HHHL partners. The purpose of

this part of the study was to observe the same criteria previously mentioned in families

that have not applied the HHHL model. Following the same methodology applied for the

57 partner families, members of these families were interviewed at different points in time

to address the questions included in the interview guide. Interviews lasted no more than

one hour and were conducted in participants' homes.

The third group included members of the communities at large. Current records

facilitated by HHHL register the existence of 35 homes in Bellamaria, 42 in Chaquizhca,

and 32 in Guara. Heads of household of all the homes in the communities were

approached to answer questions about the physical structure of their home, as well as the

socio-economic status of their family. These families were approached in their homes and

asked informed consent in case of being interested in taking part of this research. This

group also included community members that have worked directly in any HHHL

construction projects.

These populations guided the initial sampling, but as proposed by grounded

theory, sampling was not complete until reaching theoretical saturation. Theoretical

saturation occurs “when gathering fresh data no longer sparks new theoretical insights”

(Charmaz, 2014, p. 213), consequently, it was reached when the main theoretical

constructs were sufficiently rich and no more data was required.

Finally, considering the different characteristics of the families in this area, the

concept of household was defined based on verbal identification of a particular nucleoid

as ‘home’ and permanent inhabitation of a common house.

Data collection.

This research was conducted in three phases: Phases 1 and 2 were mainly focused

on issues included in RQ1, whereas Phase 3 addressed issues included in RQ2.

58 Phase 1: Construction of ethnographic cases.

Using an ethnographic perspective, I approached families that have partnered with

HHHL since 2011. As mentioned before, the concept of partnership has been defined by

HHHL as the result of multiple dialogic interactions leading to time bounded

commitment between the families and the project to adopt and implement the HHHL

model. In depth interviews, participant observation, documents review and informal

conversations were conducted to develop this ethnographic phase of the study.

a. In-depth interviews: In-depth interviews (Kvale & Brinkmann, 2009) were conducted

with partner families. In this case, I interviewed three members of the partner families

currently inhabiting the home. Interview guides were constructed to capture the factors

leading to decision-making within the family before, during, and after the intervention.

These interviews were conducted to explore appropriation of the space by different

family members, as well as the construction of the household as a physical and symbolic

microsystem. Themes explored in the interview guides at this stage included: Uses of the

space; human interactions with the natural environment; home-health relationship;

perceived value of the home; health seeking behaviors occurring within the home space;

income generation and micro-planning; perceived socio-economic development; pros and

cons of the construction; familial interactions conducted within the home space; and

future plans for the family and the home (see Appendix A).

In addition, I considered WHO’s specific recommendations for integrated control

of NTD transmitted by vectors (Holveck et al., 2007). For Latin America, the Pan

American Health Organization (PAHO) has turned WHO’s general guidelines into a

package of actions aimed at simultaneously addressing the circumstances of transmission

59 of the twelve NTD present in the region (dengue, rabis, buruli ulcer, leprosy, and CD,

among others). These actions include: Vector control; provision of water and sanitation;

management of zoonotic elements of the disease; community participation social capital;

and multisectoral integration. Interview guides were modified as new themes emerged

and new participants were identified.

b. Participant observation: The HHHL model proposes specific health promotion actions

designed to connect the ideas of home and health. These actions include post-

construction visits, follow up to a check-list of healthy practices recommended to avoid

insects presence in local homes, and regular meetings to address potential doubts in

relation to uses of the space. These actions occur in a process that combines families’

adaptation to the new house with practices traditionally conducted in the home space

before the intervention. In order to observe how this interaction evolves over time, I

conducted participant observation (Tracy, 2013) while accompanying health promotion

activities led by the HHHL local facilitator. I took part of this process by assisting the

facilitator in completing the check list designed by HHHL. This checklist was completed

while walking around the house with one of the heads of household to observe uses of

doors and windows, spaces used for storage, use of roofs and ceilings; location of

chicken, guinea pigs, dogs, and pigs, sanitary facilities, and debris and other materials

exposed in peridomestic areas.

I joined the team in their visits during three different periods: one from mid-June

to July 2016, other in January 2017, and the last one from May to June 2017. These

periods were chosen considering the different uses of the space registered during the dry

and rainy season of the year. Similarly, this participant observation complemented the

60 responses obtained through previous interviews in aspects such as uses of the space,

interactions between individuals and the natural environment, health related practices

conducted within the home space, perceived value of the home, maintenance and

cleaning practices, income generation practices carried out at the home level, perceived

economic development, and family dynamics enacted within the home space. Aspects

such as distance from the road, particular smells, and additions or modifications of the

construction were also considered for observation.

c. Documents review: Annual reports produced by HHHL were reviewed in order to

develop a wider understanding of the implementation process during the different phases

of the project. These documents were used as secondary sources to guide the

development of interview schedules (Lindlof & Taylor, 2011), but most importantly,

contributed to the immersion required to develop the ethnographic perspective proposed

in this study. Reviewed documents included research reports submitted in 2013, 2014,

2015 and 2016, as well as weekly reports produced by HLI’s field coordinator between

2013 and 2016.

Phase 2: Validation.

a. Socio-economic surveys for communities at large: I conducted domiciliary visits to

each of the homes currently registered in HHHL records (35 in Bellamaria, 42 in

Chaquizhca, and 32 Guara), in order to apply a socio-economic survey designed to a)

compare the current status of the local families with previous records in order to identify

major changes in the general socio-economic conditions of the communities, and b)

identify factors that influence decision-making in relation to housing and health. Heads of

household of the communities at largewere approached to answer questions about the

61 physical conditions of their home, as well as the socio-economic status of the family.

This questionnaire was administered in individual household visits, separately form the

interviews previously mentioned. Each one of the questions was read to the participants

and their answers registered by the interviewer in paper printed questionnaires. The

questionnaire explored key areas identified in previous HHHL implementation

experiences, including family composition, education level, legal tenure of the land, uses

of the space, income level, productive activities, and access to the road, basic services,

and credit. This questionnaire also explored external sources of financial support, health

status of family, potential sources of income, and concrete interest in home improvement.

Additionally, pictures of the walls, floors, and roofs of the homes were taken in order to

establish the decay status of the construction. These pictures exclusively focused the

external areas of the home and never included its inhabitants. Photographical data was

optional and did not compromise families' participation in this study. I was also interested

in identifying the most salient arguments used by local families to assess the actions

conducted and promoted by HHHL (see Appendix B).

b. Community consultation: Once the aforementioned phases of data collection with

partner families and community at large were completed, an updated new version of the

HHHL model was produced (Chapter 6, white paper). This new version considered

emerging theorizations about sustainability formulated during the initial phases of

analysis the data.

Field notes were collected in all the phases of this research. They were taken as

descriptive memos right after leaving the homes where interviews, surveys, and

62 participant observation were conducted. Later on these notes were turned into extended

analytical memos that were also part of the analysis.

Data analysis.

The development of grounded theory in the context of implementation research is

even more influenced by pragmatic thinking than other applications of this perspective.

The interplay between theory, observation and methodology suggested by abductive

thinking is applied in this case as a way of bringing larger structures of knowledge into

the data collected with the purpose of substantiating theorization emerged from repeated

or accumulated observations (Tavory, 2016). Therefore, analytical processes conducted

within this research were not intended at generating new theories of sustainability but to

extend our understanding of this concept by adding contextualized data emerged from

HHHL implementation.

In order to arrive to that point of theorization about sustainability, I followed the

main tenants of Constructivist Grounded Theory (CGT). This means that I was interested

in interacting with the data collected along this research as ongoing co-constructions

emerged from the specific positionalities of participants and researcher. In order to

maintain the abductive nature of this analysis I was also interested in sustaining iterative

strategies that allow me to interact with emerging data and codes using different forms of

comparative methods.

Observations, interviews, implementation reports, field notes, as well as emerging

materials used in participatory exercises were analyzed in two phases: initial and focused

coding (Saldana, 2016). The initial coding phase involved assigning names to words or

larger segments of data, whereas the second phase aimed to identify the most significant

63 codes initially identified in order to sort, synthesize, integrate, and organize large

amounts of data toward theory construction (Charmaz, 2014). Focused coding moves the

research ahead by elaborating upon the codes we have created and or identifying extant

theories that can support emerging theories. Since this research was conducted in

Ecuador with Spanish-speaking communities, initial coding schemes were constructed in

Spanish using a line-by-line approach. This facilitated interaction with research materials

and provided opportunities to remain close to the data.

I used in-vivo and process coding for the initial coding phase of this project

(Charmaz, 2014; Saldana, 2016). Process coding is an approach to coding particularly

associated to CGT. It uses gerunds “to connote action in the data, both simple observable

activities as well as larger process” (Saldana, 2016, p. 111). The purpose of using process

coding is preserving the fluidity of participants’ experience (Charmaz, 2014). This type

of coding was particularly suitable for this research because of its evolving character:

participants’ experiences were situated in the temporal, physical, and emotional

reconstructions they made of HHHL as a process and the coding system reflected that

evolution.

In vivo coding complemented the actions described through process coding. In-

vivo is “a word or short phrase from the actual language found in the qualitative data

record” (Saldana, 2016, p. 105). While paying attention to the actual language used by

research participants, researchers can amplify their voices and presence in subsequent

phases of data collection and analysis. This method demands rigorous line-by-line coding

in order to have contextualized pieces of language that can be integrated into larger

theoretical development (Charmaz, 2014). Accordingly, I used in-vivo coding to capture

64 essential features of participants’ verbatim reconstruction of their experience with

HHHL model.

I intended to keep this in-vivo and process coding during the analysis phase for as

long as possible; however, I turned into English for the focused coding phase of the

analysis, as well as for memo writing, code book, and final report.

I used several forms of comparative methods for the focused coding phase of this

reserach (Charmaz, 2014); this allowed me to observe complex interactions around the

idea of sustainability from different perspectives. Charmaz suggests that using

comparative methods allows the researcher to identify processes different from the ones

described by participants, as well as assessing comparability and transferability of

theoretical constructions. While comparing the cases of partners and non-partners, for

example, specific attention was placed on the elements proposed by PAHO as conditions

for sustainable control of NTD (vector control, intersection with water sources and

hygiene, management of zoonotic elements of the disease, community participation and

social capital). This analysis provided ideas about the actual impact of HHHL in areas

expected by the project, but also suggested ideas about unintended or overlooked

consequences (Merton, 1936), as well as contribution claims (Cartwright, 2011). Other

kinds of comparisons were made using temporal references, such as appropriation and

use throughout the years, as well as throughout or in different climatological seasons.

Decisions about the specific areas to be compared emerged as data analysis progresses.

In general, I followed the guidelines for CGT as proposed by Bryant and Charmaz

(2007):

a. Data collection, analysis and theoretical development were simultaneously conducted;

65 b. Coding started with the initial instances of data collection;

c. Memo writing started simultaneously with data processing;

d. Theoretical sampling was consistently conducted through pattern searching;

e. Data was collected until theoretical saturation was reached; and

f. I aimed to identify social processes that could lead to theory construction grounded in

the data.

These steps facilitated the subsequent generation of theory that was not only the

product of the research but the analytical framework that guided the analysis of the data.

It is important to emphasize that I intended to pay particular attention to the

contextualized actions and expressions that research participants used in relation to their

environment, their health, and HHHL actions. I followed dialogic ways of representing

emerging elements for theorizing. In this sense,

[emerging] themes are tentative beginnings of the more significant task of representing individual struggles in all their ambivalence and unfinalizability; in particular, how is each voice the site of multiple voices, and what is the contest among these voices. Personal stories are, again, not to be understood as strictly individual. Any person’s story is the site of struggles permeated by multiple voices. (Frank, 2005, p. 972) Additionally, I followed Charmaz (2014) criteria of quality for grounded theory

studies (credibility, originality, resonance, and usefulness) to provide evidence of rigor in

conducting this research. Credibility was pursued by reimaning close to the data

throughout the phases of coding, meaning-making, theorization and dissemination of this

research. I used the ontological tenants of grounded theory to maximize participants’

involvement in the co-construction of potential answers to the research questions

proposed in this study. Resonance and usefulness was pursued by applying a pragmatic

66 orientation towards CGT. As previously explained, the theory of sustainability

produced by this research should partially inform decision-making for implementation of

the HHHL model at medium and large scale. Understanding the actual impact of HHHL

in the lives of local families, as well as identifying the resources and barriers currently

existing in the communities, constitute essential elements to consider in a public health

intervention of this nature. My aim was building complex analyses capable of expanding

the notion of partnership currently promoted by the program in order to approach

marginalized populations with concepts and ideas relevant in their own context.

Final products.

The results of this research will be delivered in the following pages as separate

chapters under the following formats:

a. Chapter 4. Uses of Communication Strategies, Media and Messages in Neglected

Tropical Diseases Eradication, Elimination and Control programs: A systematic review

(journal article)

b. Chapter 5. Towards a theory of sustainable prevention of Chagas disease: An

ethnographic grounded theory study (journal article)

c. Chapter 6. Towards a theory of sustainable prevention of Chagas disease: Scaling up

proposal (White paper)

Ethics and informed consent procedures.

IRB protocols were filed and approved by the Ethical Committee for Research on

Human Subjects at Ohio University (16-X-209) and the Research Ethical Committee at

Pontifical Catholic University from Ecuador (Oficio-CEISH-232-2016). Since I visited

participant's homes for interviews, participant observation and questionnaires’

67 administration, I orally explained the purpose of this study at the beginning of my visit.

After identifying the members of the research team that had access to their testimonies, I

stated potential risks and benefits and emphasized the right of refusing to participate in

this research. Signed informed consent was collected at the beginning of each interview.

In cases when participants could not sign, I read the informed consent and asked an

authorized witness to sign the form. Informed consent included authorization for

recording the interviews and taking pictures of the home during the administration of the

questionnaire. For minors, I collected informed consent of the parents and assent from the

minor.

Justification of Methods

Constructivist grounded theory is a method particularly suited to pursue goals of

social justice (Charmaz, 2005; Denzin, Lincoln, & Smith, 2008). It demands researchers

to stay close to their data, an analytical tool that facilitates identification of new lines of

thinking about data itself, as well as research participants and their context. Charmaz

(2011) explains that in the process of understanding researchers’ rationale for coding, for

example, assumptions about access to resources, hierarchies, policies, and practices,

among other constitutive factors of social justice, are made visible. Similarly, by making

a conscientious effort to represent participants’ voices and views as vividly as possible,

researches are making explicit their commitment with pragmatic and participatory

orientations to research. CGT proposes “a systematic approach to social justice inquiry

that fosters integrating subjective experience with social conditions” (Charmaz, 2014, p.

326); consequently, it can be used to impact policy-making and interventions’ designed

68 to make explicit the actual connections between formulation, implementation and

consequences of specific programs.

In this case, CGT’ pragmatic approach lead me to deconstruct small actions

enacted in the micro system of the home as a reflection of major dynamics of social,

political and economic systems.GT has been used in public health and health systems

research similarly to other data driven methodologies such as realist evaluation (Pawson,

Greenhalgh, Harvey, & Walshe, 2005) and theory of change (De Silva et al., 2014). As a

quintessential qualitative research method, it has been deemed suitable to address the

most important questions for implementation research: what works for whom, under what

circumstances, why, and how (Jagosh et al., 2015). In the field of tropical diseases,

grounded theory has been applied to implementation research on issues as varied as the

study of patterns of Chagas disease in migrants in Peru (Bayer et al., 2009); use of

antimalarial hammocks in Vietnam (Peeters Grietens et al., 2012); impact of multidrug

resistance in tuberculosis on children (Franke et al., 2014); community engagement in a

dengue elimination program in Australia (Kolopack, Parsons, & Lavery, 2015); and

community responses to Ebola (Abramowitz et al., 2015).

Similarly, this research emphasized the idea of sustainability as enacted in the

experience of local families, beyond epidemiological, architectural and social data

previously collected by HLI in relation to CD. Since the question for sustainability often

refers to the capacity of the project to address the structural causes of disease beyond its

physical manifestations, this research aimed to understand how this concept can be

expanded in order to include local families’ voices in subsequent decision-making

69 processes. In summary, I intended to explore how, if so, previous and future partners

see HHHL as a source of health and wellbeing in the long run.

As a socio-constructivist scholar, I am interested in conducting research capable

to inform practice from culture-specific perspectives, research that value the role of social

norms, emotions, and non-strategic evaluations of social processes that better depict the

multiple features of human character. From my point of view, facilitating spaces of

participation to voices emerging from traditionally silent sectors of population —the ill,

the marginalized, the colonized— can lead to more complex, accurate, but mainly, more

ethical understandings of health as a situated concept. From this perspective, I want to

challenge power structures that magnify scientific knowledge in opposition to

idiosyncratic experience. Consequently, the methodological decisions previously outlined

respond to my orientation as a socio-constructivist scholar, as well as my interest in

social justice as fundamental goal of my academic work.

Positionality

The selection of grounded theory, and particularly ethnographic grounded theory,

was ontological and epistemologically linked to the research questions guiding this

project, as well as the nature of my position in the conceptualization of HHHL. Through

my role as Coordinator of the Healthy Living Initiative for the last five years, I have been

able to establish relationships with HHHL partner families and other community

members. Rather than neglecting the impact of power dynamics associated with this

position and the institutions I represent, I expect to use them as a criterion to advance

specific conclusions in the development of this research.

70 From a socio-constructivist point of view, communication is not a subject of

our talk, but the talk itself, the raw material of any human interaction. What we know of

the world, we know it because we are able to assign meaning to it, and we do so, because

we can recognize the resources necessary to understand our realities and incorporate them

in larger referents. Communication becomes the lenses through which we can access

larger forms of organization in knowledge and in life itself.

My understanding of the major role that human agency plays in the construction

of the world is one derived from recognizing human capacity for creating meaningful

explanations of the experiences that define and inform our identity. Emerging definitions

of health reveal particular worldviews and positionalities that, as an interpretive scholar, I

am interested in exploring. Is the construction of the self in relation to the other and

his/her environment what attracted me in first place to the study of health

communication. I support the ontological assumption that individuals’ perceptions of

health are constituted by the meanings they assign to the specific events they have to

experience in their bodies, as well as epistemological conceptions of health

intersubjectively constructed with family members, health providers, and institutions

present in their particular world (Babrow & Mattson, 2011).

In doing so, I can locate myself in what Deetz (1996a) called the “consensus-

pole” of the interpretive/critical tradition: most of my interests in research are oriented

towards gaining understanding of the explanations that people provide of their lived`

experiences, more that evaluating them against some ‘objective’ reality. In my opinion,

making an effort to describe and incorporate populations’ perspectives in health

interventions is one of the main responsibilities of the researcher interested in health

71 promotion. In order to counter the dynamics of manipulation and false-consensus

associated with earliest model of health communication, a particular emphasis on

dialogue has to be made. Concepts such as heteroglossia and unfinalizability (Bakhtin &

Holquist, 1981) are central to the construction of my idea of otherness, and more

concretely, to the possibility of change I embrace. These concepts question the role that

scientific knowledge should play when approaching social realities with a transformative

impetus. By maintaining an open attitude towards the experience of otherness as

recreated in dialogue, I feel better equipped to depict the uniqueness of the context I

intend to approach with this research and formulate ideas of health promotion more

suited to those specific realities.

After five years of work in Ecuador, I have had the opportunity to challenge my

own definitions of wellbeing. My experience as coordinator of the Healthy Living

Initiative has been greatly enriched by the intense learning derived from the possibility of

applying and questioning what I have learned in the classroom while creating meaningful

relations with local populations and colleagues in these communities. Consequently, this

research responds both to my experience with the project and the relationship I have

established with families in this area. I understand that the position I hold in the project

provides a particular perspective informed by processes and sources not exclusively

limited to the experiences of the families. However, as a qualitative scholar, I recognize

myself as my main research instrument and I hope I have used in its best capacity to

address the questions I proposed in previous pages.

72 Chapter 4: Uses of Communication Strategies, Media and Messages in Neglected

Tropical Diseases Eradication, Elimination and Control Programs: A Systematic

Review

Introduction

During the last decade, tropical disease researchers have argued for the need to

include social sciences in the design and implementation of interventions aimed at

addressing neglected tropical diseases, NTD (Allotey, Reidpath, & Pokhrel, 2010; Azoh

Barry, 2014; Bardosh, 2014; Houweling et al., 2016; Manderson et al., 2009; Pokhrel,

Reidpath, & Allotey, 2011; Reidpath, Allotey, & Pokhrel, 2011). Known as ‘the other

diseases’ alluded to by the Millennium Declaration of 2000 (Allen & Parker, 2011; Hotez

et al., 2007; D. H. Molyneux & Malecela, 2011; Smith & Taylor, 2013), the NTD group

includes seventeen infectious diseases that mainly affect people living in poverty

(Crompton, 2010). Snails, mosquitoes, and other insects serve as vectors in areas where

they are naturally present and reach human populations through their living

environments, work settings, and recreational spaces, among other routes. Despite

important differences derived from their protozoan, bacterial, helminthic, and viral origin,

NTD share characteristics of social and political order that make them particularly

relevant for social scientists. First, NTD are endemic in rural or poor urban areas in low-

income tropical countries where continuous interactions with natural environments are

more common (Webster et al., 2016). NTD show high disease burden but low mortality

in affected people, adding an important load of stigma and discrimination to the regular

lives of affected population (Franco-Paredes & Santos-Preciado, 2011). Additionally,

limited resources have been invested in NTD research and treatment, which has led not

73 only to poor alternatives for prevention and treatment, but also to lack of knowledge in

medical communities and general public (Kariuki et al., 2011). Poor documentation,

particularly high impact in marginalized populations, lack of visibility in the media, and

lack of resources to assess and prevent emerging cases, are other factors identified as

leading to neglect around this group of diseases (Ventura-Garcia et al., 2013).

Addressing NTD has been presented as concrete mechanism towards poverty

alleviation and reduction of global inequalities (Hotez et al., 2009). The London

Declaration, promoted and signed by pharmaceutical companies, donors, operational

partners, and national NTD programs in 2012 , committed resources to drugs’

development, access to medication, and research on new forms of treatment for disease

eradication, elimination and control (Molyneux, 2017) . However, it has been argued that

the strategic decisions taken in this context are not nearly enough to achieve the

ambitious social justice goals proposed for this group of diseases (Allen & Parker, 2011).

The use of the term ‘neglect’ has opened a spectrum of research in which the

impact of geographical, demographic, cultural, and social factors can be thoroughly

explored by public health practitioners to arrive to more effective communication

strategies for disease prevention (Azoh Barry, 2014; Bardosh, 2014; Kariuki et al., 2011;

Ventura-Garcia et al., 2013). Even though NTD literature often includes references to

health education, health promotion, and health communication activities, it is important

to understand to what extent those approaches have been conceived to address the

different angles of neglect included in the definition of the NTD category. As stated by

the World Health Organization (WHO),

74 Neglect occurs at three main levels: at the community level, fear and stigma can sometimes lead sufferers and their families to conceal their condition. At the national level, these diseases are often hidden – out of sight, poorly documented, and silent, as those most affected have little political voice (…) Neglected diseases lack visibility at the international level as well. Tied as they are to specific geographical and environmental conditions, they are not perceived as direct threats to industrialized countries (Daumerie, & Kindhauser, 2003, p. 6). This paper is focused on identifying communication strategies involved in the

design and implementation of NTD interventions. Specifically, we aimed to identify

communication strategies implemented in the context of dracunculiasis (Guinea worm)

eradication, lymphatic filariasis elimination, and schistosomiasis and Chagas disease

control programs. Our goal was to understand whether, and if so, the extent to which, the

public health goals established for each one of these diseases, as well as the different

biomedical and environmental factors involved in their occurrence, have affected

decision-making about communication practices recommended and implemented to

effectively approach populations at risk.

Methods

This systematic review identified studies published between January 2012 and

April 2017 that described or recommended implementation of communication strategies

in NTD eradication, elimination or control efforts. This five year period was selected in

consideration to the launch of the London Declaration in January 2012 and the April

2017 NDT Summit that commemorated five years of this event. The selection of these

four diseases responded to two criteria: a) The stage they are facing in terms of

eradication, elimination, and control; and b) the prevention and control methods most

commonly applied in each case. Guinea worm (GW) was included in this review because

it is exemplary of a disease that has reached the eradication stage mainly through

75 community-based prevention and health education programs —unlike smallpox that

was eradicated through vaccination (Visser, 2012). Lymphatic filariasis (LF) and

schistosomiasis (STH), were included due to the significant resources they have received

from mass drug administration programs (MDA) for their elimination and control,

respectively. Lastly, Chagas disease (CD), also in control stage, was included in attention

to the environmental interactions involved in its occurrence. Our rationale for this

selection was to have sufficient scope to obtain a broad panorama that could help us

understand how the diversity of contexts, transmission cycles, and prevention and

treatment methods characteristic of the NTD group has impacted decisions in relation to

communication methods (Table 1), while being narrow enough to carefully examine the

decisions made in each case.

Data sources.

Full searches were conducted using five electronic databases: Medline-Pubmed,

CINAHL, PsycINFO, Lilac and Social Science Citation Index -Science Citation Index. In

order to identify the most common terms associated with communication actions, an

initial search was carried out using the word communication as descriptor. Based on the

results obtained, three more terms were used to refine the search: message, media, and

participation. Expressed in Boolean terms, the search strategy was: “(dracunculiasis OR

guinea worm OR lymphatic filariasis OR schistosomiasis OR Chagas disease) AND

(communication OR message OR media OR participation).” Studies were not excluded

on the basis of design or methods.

Articles were selected in two phases. First, the titles, abstracts and key words of

all the identified studies were examined. A total of 1,040 articles were included at this

76 stage. Once duplicated results were eliminated, 846 abstracts were reviewed. Exclusion

criteria included communication as biological transmission or type of contribution (e.g.

short communication); media as environmental condition in laboratory settings or

publication; and participation as enrolment or interaction in biological processes.

Introductions to special numbers, theses, news reports and congress presentations were

also excluded. Health education was excluded as search term due to the existence of a

journal of the same name; however, pieces mentioning health education in the abstract

were included for second screening. Of these articles, 172 were retained. The first author

used two specific criteria to narrow the selection: focus on the specific diseases being

studied, and concrete use of search terms in programs’ implementation or as

recommended path of action. Fifty-eight articles were excluded due to tangential mention

of issues of interest. Considering that this review is focused on actual communication

uses and practices, policy statements and articles focused on NTD as a general category

were also excluded, unless they included specific sections on the diseases of interest.

Studies were divided into two major groups: articles describing some form of

communication intervention, and articles that referred to communication as a

recommended course of action. Studies were considered interventions when they

described communication actions actually developed in a particular context;

recommendations, on the other hand, were less elaborated statements —usually included

in the final sections of the manuscripts— suggesting communication activities for future

interventions. As showed in Figure 1, a total of 114 articles were finally included in this

review. Only studies conducted in English, French, Spanish, and Portuguese were

examined.

77

Figure 1. Flow of search for systematic review.

Data extraction and synthesis.

Studies were analyzed using thematic synthesis (Thomas & Harden, 2008).

Interventions were screened to identify theoretical frameworks (if included), main level

of influence intended (individual, interpersonal, community, institutional), references to

culture (if included), and recommendations. For articles using communication as a

recommended practice, only intended level of influence (individual, interpersonal,

community, institutional), references to culture (if included) and recommendations were

identified. In both cases, efforts to maintain original authors’ language to name specific

Records identified

through database search

(n=1,040)

Abstracts screened

(n=846)

Duplicates removed

(n=194)

Full text articles assessed for eligibility

(n=172)

Full text articles excluded

(n=57)

Studies included in

systematic review

(n=114)

Interventions (n=74)

Recommendations (n=40)

Abstracts excluded (n=674)

78 actions were made. Findings were stored and coded by category in Excel. Quality of

the selected articles was assessed in relation to their capacity to answer questions

proposed for this study.

Results

A total of 114 articles were identified: 74 of them were included in the

intervention category and 40 in the recommendation group (Tables 2 and 3). Eleven (11)

articles were identified for Guinea worm, 29 articles for lymphatic filariasis, 29 for

schistomiasis, and 45 for Chagas disease.

Table 1. Communication actions advised in articles classified as recommendations. NTD Authors Recommendation Reference

culture Level of influence

GW (Awofeso, 2013) Community education campaigns Health education Booklets Culturally appropriate language

N Individual, interpersonal, community

GW (Jones et al., 2014) Combination of directive and participatory decision-making

N Institutional

GW (Mojoyinola & Blinkhorn, 2013).

Health promotion Advocacy Community mobilization

N Individuals, community, institutional

GW (Whitty, 2015) Advocacy Messaging Anthropological analysis

N Community, institutional

79 Table 1: continued.

LF (Abd Elaziz, El-Setouhy, Bradley, Ramzy, & Weil, 2013)

Educational messages through electronic media

N Institutional

LF (Adhikari, Sherchand, Mishra, Ranabhat, & Wagle, 2015)

Community engagement through government and community structures

Y Individual, interpersonal, community

LF (Gazzinelli et al., 2012) Health education Mass media Community participation

Y Institutional

LF (Krentel, Fischer, & Weil, 2013)

Trust building Face to face interaction Information provision through multiple sources Promotional materials Anthropological studies Management of adverse events Messaging Toolbox for difficult areas

Y

Individual

LF (Martindale et al., 2014)

Community awareness

N Institutional

LF (Mwakitalu, Malecela, Pedersen, Mosha, & Simonsen, 2013)

Community engagement N Community

LF (Mutheneni, Upadhyayula, Kumaraswamy, Kadiri, & Nagalla, 2015)

Community-based health education campaigns Disease awareness programs

N Individual, interpersonal

LF (Rosanti, Mardihusodo, & Artama, 2016)

Community involvement (drug compliance observers)

N Individual

LF (Wijesinghe & Wickremasinghe, 2015)

Hygiene promotion (home-based)

N Individual

LF (Stanton et al., 2016) Community-based support Health education

N Individual, interpersonal

LF (Upadhyayula, Mutheneni, Kadiri, Kumaraswamy, & Nagalla, 2012)

Health education/awareness campaigns

N Communities

80 Table 1: continued.

LF (Zeldenryk, Gray, Gordon, Speare, & Hossain, 2014)

Community based rehabilitation Self-care education Health promotion activities

Y Institutional

STH (Adoka et al., 2014) Information provision Health education materials Intense health education Behavioral change

Y Individual, community

STH (Casmo, Augusto, Nala, Sabonete, & Carvalho-Costa, 2014)

Health education N Institutional

STH (Cavaca, Emerich, Vasconcellos-Silva, dos Santos-Neto, & Oliveira, 2016)

Media visibility Rhetorical construction

Y Institutional

STH (Favre, Pereira, Beck, Galvao, & Pieri, 2015)

Health education N Institutional

STH (Macharia, Ng'ang'a, & Njenga, 2016)

Community participation Communication with beneficiaries Health communication Risk awareness Behavior change Advocacy Information dissemination

Y Individual, community

STH (Makaula et al., 2014) Community engagement and empowerment Communication between researchers and public health professionals Knowledge management

N Institutional

STH (Ouedraogo et al., 2016)

Health education Behavior change

N Institutional

STH (Rollinson et al., 2013) Health education Behavior change Community involvement Advocacy Communication among actors

Y Institutional

81 Table 1: continued.

STH (Uneke et al., 2015) Capacity enhancement N Institutional

CH (Arenas-Monreal, Pina-Pozas, & Gomez-Dantes, 2015)

Community involvement Gender perspective in health promotion and education campaigns Eco-health

Y Individual, interpersonal

CH (Alviarez & Ferrer, 2014)

Eco-health N Community

CH (Breniere et al., 2013) Inhabitant-based participation Awareness and education campaigns

N Community

CH (Cantillo-Barraza et al., 2015)

Community participation

N Community

CH (de Maio, Llovet, & Dinardi, 2014)

Awareness raising Advocacy

N Institutional

CH (da Silva et al., 2012) Pharmaceutical care (interpersonal communication between pharmacist and patient)

N Individual, community

CH (do Nascimento & Puschel, 2013)

Health education for patients Social support

N Institutional

CH (Donovan, Stevens, Sanogo, Masroor, & Bearman, 2014)

Collaborative education Prevention campaigns

Y Individual

CH (Dumonteil et al., 2013)

Eco-health Y Community

CH (Feliciangeli, 2014) Health education programs Community participation

Y Institutional

CH (Hurtado et al., 2014) Community participation Information provision Sensitization Health education

N Individual, interpersonal, community

CH (Kasten-Monges et al., 2016)

Physician awareness Participative educational models

N Individual, institutional

CH (Provecho, Gaspe, Fernandez, & Gurtler, 2017)

Social participation Y Interpersonal, community

82 Table 1: continued.

14 CH (Salerno, Salvatella, Issa, & Anzola, 2015)

Community involvement Inter-sectoral articulation Trust Credibility

Y Political

15 CH (Saunders, Small, Dedicoat, & Roberts, 2012)

Community-based primary prevention

Y Institutional

Table 2. Communication strategies implemented in studies classified as interventions. NTD

a Authors Intervention Recommended

actions Ref. to culture

Level of influence

Theoretical framework

GW (Adokiya, Awoonor-Williams, Barau, Beiersmann, & Mueller, 2015)

Internet-based surveillance Community-based surveillance

Improving communication systems

N Institutional Health Information Management Systems (HIMS)

GW (Biswas, Sankara, Agua-Agum, & Maiga, 2013)

Health education Advocacy IECb materials (poster, radio, tv, town criers, markets) Community awareness Outreach materials Face to face communication

Awareness raising Community ownership Information dissemination

N Individual, community

None

GW (Callahan et al., 2013)

Community education Advocacy Health education

Health education Advocacy

N Policy None

83 Table 2: continued.

GW (Molyneux & Sankara, 2017)

Advocacy Health education Awareness raising Follow up of rumors Reporting system

N Individual, interpersonal

None

GW (Mbong et al., 2015)

Health education Behavior change Community-based surveillance

Sustained surveillance

N Community None

GW (Ede, Nwaokoro,Iwala,Amadi, & Akpelu, 2014)

Health education Information provision (through media, village health workers, school, and partner organizations).

Advocacy Community mobilization

Y Individual, community

None

GF (Visser, 2012)

Advocacy Community mobilizations Awareness campaigns Health education

Health education Advocacy

N Community None

LF (Aboagye-Antwi et al., 2015)

Community participation

Health education campaigns Community participation

N Individual, community

None

84 Table 2: continued.

LF (Aggithaya et al., 2013)

Community-based self-care integrative treatment Health promotion Community camp workshops IEC Media (booklets and videos) Social mobilization

Community-based LF camps

N Individual None

LF (Byrne & Collins, 2015b)

Health education Hands-on demonstrations Pictures and diagrams.

Treatment plan and follow up care

N Individual.

LF (Ghosh, Samanta, & Kole, 2013)

Community awareness IEC (leaflets, poster, microphone campaigns)

Pre-MDA motivational campaigns Community involvement

N Individual, community

None

LF (Hussain, Sitha, Swain, Kadam, & Pati, 2014)

Intensive behavior change communication (BCC) Community awareness

Awareness Community-based education IEC Sensitization of populations at risk Community mobilization Connecting actors

Y Individual, community, organization

Behavior Change Communication (BCC)

LF (Kisoka et al., 2014)

Social mobilization Media (local radio and television stations)

Dissemination of accurate information Face to face household visits Community and stakeholder involvement

Y Individual, community

None

85 Table 2: continued.

LF (Kisoka et al., 2016 )

Community-directed distribution Mobilization and sensitization

Address dilemmas of MDAc Scrutiny of ‘participation’ as concept

Y Community None

LF (Kisoka, Tersbol, Meyrowitsch, Simonsen, & Mushi, 2016)

Community-directed distribution (community mobilization, participation, and ownership)

Community mobilization and ownership

Y Individual, community, institutional

None

LF (Krentel et al., 2016)

Micronarratives Advocacy Use of micronarratives to identify bottlenecks

Y Individual, community

None

LF (Lemoine et al., 2016)

Community participation Social mobilization and IEC Media (banners, fliers, radio, television messages, posters, megaphones) Information provision Training Monitoring and evaluation

Community participation Training Multi-channel communication/ Awareness Messaging Information provision M&E

N Individual, community, institutional

None

LF (Moala-Silatolu, Nakamura, Seino, & Kizuki, 2012)

Community awareness and information through traditional village forums Community involvement in MDA

Use of local health forums

Y Community None

86 Table 2: continued.

LF (Nandha, Krishnamoorthy, & Jambulingam, 2013)

Social mobilization Propaganda (newspapers, posters, radio, announcements, and local health workers) Interpersonal communication

Preparation of community for MDA Social mobilization

N Individual, community

None

LF (Njomo, Amuyunzu-Nyamongo, Magambo, & Njenga, 2012)

Community directed treatment Community participation House by house sensitization Community participation

Community involvement Health education messages Community sensitization Community mobilization

N Individual None

LF (Parker & Allen, 2013)

Social mobilization Advocacy Media (radio, posters, film shows, and mobile megaphones)

MDA campaign - change of focus Acknowledging and understanding local concerns. Social empowerment Knowledge transfer for informed decision-making

Y Community, institutional

None

LF (Sime et al., 2014)

Integrated mapping of NTD Smartphones for data collection Community mobilization

In-country leadership Mobile technology

N Institutional Mobile health (mHealth)

LF (Stanton et al., 2016)

SMS Apps

SMS Apps

N Community Mobile health (mHealth)

87 Table 2: continued.

LF (Ziperstein et al., 2014).

Training Health education Information spread (prefect, village, chief, town crier) Support system Message dissemination (radio, during MDA

Personal home visits Village volunteers Patients’ follow up Community awareness

N Individual, community

None

STH (Amin & Abubaker, 2017)

Health education Community participation

Behavior change supported by health education

Y Community, institutional

None

STH (Barkia et al., 2014)

Door to door visits by mobile teams providing curative and preventive care Health education Information Communication activities Awareness raising Media (Popular songs, audio and video messages)

Involvement of mobile teams for prevention and control activities

Y Community None

STH (Boelee et al., 2013)

Participatory approaches Community awareness and action

Participatory approaches

N Community None

88 Table 2: continued.

STH (Cabello et al., 2016)

Health education Health prevention and promotion Community mobilization

Introducing STH-related activities tailored to local realities Including teachers as health promotion agents Participatory actions

N Individual, community

None

STH (Celone et al., 2016)

Training on participatory research methods Health communication messages and behavior change activities through Madrassas (religious education institutions)

Enhancing credibility and reach of community level and behavior change activities by including religious leaders as change agents

Y Interpersonal, community

Human Centered Design and Adult Learning Theory

STH (Chaula & Tarimo, 2014 )

Advocacy campaigns Information, Education Communication (IEC) and Behavior Change Communication (BCC) Community participation

Effective MDA advocacy campaigns Effective health promotion to induce behavior change Health promotion campaigns

Y Individual, community

None

STH (Hastings, 2016)

Community sensitization Vertical top-down information Unusual communication channels

Explaining rationale for treatment Administering drugs in health centers and not in schools Acknowledging the socio-political context of NTD

Y Individual, community, institutional

None

89 Table 2: continued.

STH (Leonardo et al., 2016)

Health promotion Networking and linkages Health education Multidisciplinary, multisectoral, participatory and consultative methods

Information dissemination Articulation with other poverty alleviation initiatives Community participation Advocacy Health education

Y Institutional None

STH (Liu et al., 2017)

Health education

Sensitive surveillance-response systems

N Policy None

STH (Mewabo et al., 2017)

Sensitization and education Community engagement

Community-based surveillance Contextual behavioral communication changes Leveraging on advances on mhealth and social media

Y Community None

STH (Monde, Syampungani, & van den Brink, 2016)

Health education IEC materials

Information provision

Y Institutional None

STH (Muhumuza, Olsen, Katahoire, Kiragga, & Nuwaha, 2014)

Health education Education messages

Education messages

N Community None

STH (Muhumuza, Olsen, Katahoire, & Nuwaha, 2015)

Education messages

Health education Behavioral change Sensitization

N Community None

90 Table 2: continued.

STH (Odhiambo et al., 2014)

Community health workers (CHW) Community participation Community mobilization Outreach materials (t-shirts, cloth dose-pole for PZQ, booklets, bags) Deworming messages Community sensitization Community involvement

CHW involvement Community participation Community mobilization Community empowerment and ownership Sensitization of stakeholders Information provision

Y Individual None

STH (Odhiambo, Musuva, Odiere, & Mwinzi, 2016).

Health education Health promotion Advocacy Social mobilization Media Door to door campaigns School book Outreach Community involvement

Information provision through media, community meetings, church, funerals, posters, door to door campaigns, hospitals and radio Education messages Health communication /education programs and campaigns

Y Individual, community

None

91 Table 2: continued.

STH (Omedo et al., 2012)

Community health workers (CHW) Community sensitization

Motivation of CHW with outreach materials (umbrellas, gum boots or bicycles) Health education and mobilization Mass media

Y Individual, community

None

STH (Omedo et al., 2014)

Health communication Community sensitization Health education through community forums Community mobilization Messaging to increase awareness, lead to motivation and then behavior change Media (radio, leaflets, and interpersonal communication) Road shows (loud speakers, distributing brochures and answering questions)

Health communication Improving knowledge and awareness Mass media strategies Integrating communication channels Health messages presented in locally relevant ways Communication campaigns Community-based participatory reserach

Y Individual, community

Community-based participatory research (CBPR)

STH (Phongluxa, van Eeuwijk, Soukhathammavong, Akkhavong, & Odermatt, 2015)

IEC Health education

Health education Direct communication with health professionals Training of opinion leaders

N Community None

92 Table 2: continued.

STH (Rochat et al., 2015).

Preventive messages

Prevention messages

N Individual None

STH (Wang, Carlton, Chen, Liu, & Spear, 2013)

Health education Media (posters, display boards, informal tutoring, video, pamphlets) Outreach materials (towels, school bags)

Combination of various educational formats and multiple media to encourage attention

N Individual, community

Diffusion of innovations

CD (Buttenheim et al., 2014)

Door to door visits (Sensibilizadoras)

Community participation Social norms Health campaigns Outreach materials

Y Individual, community

Health Belief Model

CD (Bustamante et al., 2014)

Door to door visits Household Vector Card

Community KAP

Y Individual, community

None

CD (Charron, 2012)

Health promotion Youth mobilization and education Systems thinking Transdisciplinary research Participation Sustainability Gender and social equity Knowledge to action

Emergent design Iterative cycles of knowledge generation, action, and validation or reassessment Research starts at any phase (participatory research design; knowledge development; intervention strategy development; and systematization of knowledge)

Y Community, institutional

None

93 Table 2: continued.

CD (Barbu et al., 2014)

Community participation

Community participation

N Community None

CD (Cormick et al., 2015)

Follow-up home visits Messaging Text messages Training

SMS communication

Y Individuals Mobile health (mHealth)

CD (Curtis-Robles, Wozniak, Auckland, Hamer, & Hamer, 2015)

Community engagement Educational campaign Information provision and collection of bugs Media (printed pamphlets, phone communication, educational website, email address)

Community engagement in vector surveillance

N Individual Citizen science

CD (De Urioste-Stone et al., 2015)

Community participation Participatory education Community-based participatory processes to develop, implement, and evaluate the intervention. Participatory action research (PAR)

Socio-culturally sensitive education approaches Community-based interventions

Y Community Participatory action research PRECEDE-PROCEED model

94 Table 2: continued.

CD (Dell'Arciprete et al., 2014)

Community health workers Awareness campaigns

Improving linguistic and communication exchange between Indigenous populations and health professionals Use of trilingual medical glossary Information meetings adapted to indigenous’ own social organization Oral communication, if possible, face to face, in local language and indigenous social norms. Open and respectful treatment of indigenous people.

Y Individual, community

None

CD (Forsyth, 2015)

Awareness raising

Articulating a clear consistent message on treatment of CD so patients can make informed decisions

Y Individual, community

None

CD (Hashimoto, Zuniga, Nakamura, & Hanada, 2015)

Community-based vector surveillance Educational materials Health promotion

Intersectoral articulation: Community-based surveillance

N Community PRECEDE-PROCEED

95 Table 2: continued.

CD (Hashimoto, Zuniga, Romero, Morales, & Maguire, 2015)

Community involvement Comunity-based surveillance Health education Outreach materials ( posters, brochures, T-shirts)

Advocacy Community organization

N Community None

CD (Maeda & Gurgel-Gonçalves, 2012)

Community participation Community surveillance

Health education Education methodologies that favor transformation of knowledge into practice Entomological surveillance based on community participation Informative and educational materials (booklets, manuals, posters and videos) Intensified communication between local population and health personnel.

N Individual, community

None

CD (Dias, Queiroz, Diotaiuti, & Pires, 2016)

Home visits Community participation Health education

Community participation

N Individuals None

96 Table 2: continued.

CD (Lardeux et al., 2015).

Situational analysis Interpersonal communication Community mobilization Lobby with community leaders Supported advertisement House to house visits Community participation

Community participation Behavior change Community participation Basic teaching on cleaning activities Eco-health approaches

Y Individual, interpersonal

None

CD (Lucero et al., 2013)

Community education

Community-based participatory approaches Eco-health interventions

N Community None

CD (Munoz-Vilches et al., 2013)

Information provision to medical personnel

Capacity building

N Individual, institutional

None

CD (Paz-Soldan et al., 2016).

Community participation

Information provision Health education campaigns Awareness raising Strategies for gaining community trust Community participation Peer educators (people affected with CD)

Y Community Theory of Planned Behavior

97 Table 2: continued.

CD (Reyes, Torres, Esteban, Florez, & Araujo, 2017)

Community surveillance Community sensitization

Community participation Health education

N Community None

CD (Rojas-Cortez et al., 2016)

Community-oriented surveillance program Educational folder on how to search triatomines

Public awareness approach using a folder as surveillance method

N Individual, interpersonal

None

CD (Rosecrans, Cruz-Martin, King, & Dumonteil, 2014).

Community participation

Health education

Y Individual Health Belief Model

CD (Sanmartino, Avaria, Gomez Prat, Parada, & Albajar-Viñas, 2015)

Social mobilization with affected people IEC Sensitization and dissemination through short video Dialogic communication

Information world-wide campaign Reinforce communication and education efforts among actors Research to inform communication and education resources Production of mass communication materials

Y Individual, community, institutional

None

CD (Santos, Bedin, Wilhelms, & Villela, 2016)

Community participation Health education

Participatory procedures Education

Y Community, institutional

None

98 Table 2: continued.

CD (Santana Rangel, Monreal, & Ramsey, 2016)

Community participation Community-based surveillance Health education

Community resilience Community participation Strengthening organizational processes

Y Community None

CD (Sartor et al., 2017)

Community participation Social empowerment Multisector cooperation Preparatory meetings with local authors Community workshops Permanent communication channels with local referents Participatory planning Media (radio broadcasts, cell phones and written messages)

Community workshops to raise awareness Two-sided commitment to implement interventions Community involvement

Y Community None

CD (Streiger et al., 2012)

Interdisciplinary approaches with participatory perspective Community organization for fumigation and surveillance

Interdisciplinary approaches Listen to community voices Community participation

Y Individual, community, institutional

None

CD (Triana et al., 2016)

Community participation Knowledge sharing

Community participation

Y Individual, interpersonal, community

None

99 Table 2: continued.

CD (Valdez-Tah, Huicochea-Gomez, Ortega-Canto, Nazar-Beutelspacher, & Ramsey, 2015)

Community participation Participatory approach to promote knowledge sharing, and social and gender equity Eco-health approach

Communication strategies to increase women’s knowledge of CD prevention and control Communication and collaborative networks based on gender roles Participatory activities to promote information exchange and collaborative practices

Y Individual, community

None

CD (Waleckx et al., 2015)

Community participation

Education and awareness programs Eco-health apporaches

Y Individual, interpersonal, community

None

CD (Yevstigneyev, Camara-Mejia, & Dumonteil, 2014)

Health education

Health education and awareness

Y Individual Social Cognitive Learning Theory (SCLT)

CD (Yoshioka, 2013)

Community mobilization Community participation

Community mobilization Training Public awareness Advocacy

N Community None

a NTD: Neglected Tropical Diseases; GW: Guinea worm; LF: lymphatic filariasis; STH: schistosomiasis; and CD: Chagas disease. bIEC: Information, education, communication. c MDA: Mass Drug Administration.

Eradication.

For Dracunculiasis (Guinea worm - GW), four (n=4) of the articles were

recommendations, and the other seven (n=7) were interventions. In GW, all levels of

100 influence were addressed for both recommendations (individual [n=2], interpersonal

[n=1], community [n=3], institutional [n=3]) and interventions (individual [n=2],

interpersonal [n=1], community [n=1], institutional [n=1], political [n=1]). Only one

(n=1) recommendation and none intervention addressed culture. Most interventions (n=6)

did not refer to theory in designing their communication interventions.

GW and yaws are the only NTD currently targeted for eradication. WHO’s GW

eradication strategy includes five specific actions to be implemented at national and

regional levels: surveillance, focused on case management and containment; provision of

safe drinking-water sources; vector control; health education; and, certification of

eradication for regions that have met expected transmission targets (2011). The context of

eradication creates very specific communication demands at institutional levels,

particularly in terms of data collection and case tracking. Standardization of medical

records (Awofeso, 2013), as well as management of rumors about new cases (D.

Molyneux & Sankara, 2017; Visser, 2012) are critical in this case.

Additionally, prevention at local levels remains a pressing need. Health education

messages disseminated in studies included in this review were mainly focused on GW’s

transmission cycle (61.5%), as well as preventive and disease management practices to be

applied at home and community levels (72.7%) (Callahan et al., 2013; Ede, Nwaokoro,

Iwuala, Amadi, & Akpelu, 2014; D. Molyneux & Sankara, 2017; Visser, 2012).

Considering the difficulties of creating a compelling message about risk of transmission

as elimination efforts succeed, authors recommend containing the optimism tone

permeating strategies addressing diseases reaching eliminations stages (Whitty, 2015).

Emphasizing problem solving capacity over prohibitions in populations at risk (Awofeso,

101 2013), empowering families and communities in case identification and management

(Mojoyinola & Blinkhorn, 2013) and including participatory decision making in

interventions of vertical nature (Biswas et al., 2013; Jones et al., 2014), are seen as ways

to bring sustainability and broad commitment around prevention efforts at local levels.

Preferred media to disseminate information at local levels included traditional channels

such as posters, radio, television, town criers, schools, parents, markets and village by

village community mobilization, and films (Biswas et al., 2013; Visser, 2012).

Studies suggested strengthening networks of community surveillance in case of

rumors of reemergence by extending the role of community volunteers and health

workers (Callahan et al., 2013; Mbong et al., 2015), and providing them with tools to

make visible the immediate and long term rewards of a strategy of this nature (Awofeso,

2013; Ede et al., 2014). As hard to reach populations gain prominence because of their

influence in emerging cases, activating population networks willing to share success

stories and generating mechanisms to counter positions of clearly opposing groups, might

be required (Awofeso, 2013; Whitty, 2015). Additionally, authors made a concrete call to

advocate for resources to manage the needs of already affected people, since they can be

overlooked as visibility of cases efforts decreases (Mojoyinola & Blinkhorn, 2013).

Current GW eradication efforts are considered a powerful advocacy tool in

complementary public health and development interventions (Callahan et al., 2013).

Importantly, authors recommend to make visible the unprecedented impact of

coordinated health education actions and face to face communication in programs aimed

at controlling diseases that, like GW, do not count with vaccine or drug based treatments

(Visser, 2012).

102 Elimination.

For lymphatic filariasis (LF), twelve (n=12) of the articles were classified as

recommendations, and seventeen (n=17) as interventions. In LF recommendations, all

levels of influence, except political, were addressed (individual [n=8], interpersonal

[n=2], community [n=3], institutional [n=4]). Interventions did not include the

interpersonal or political levels (individual [n=11], community [n=13], institutional

[n=4]). Most recommendations (n=7) did not address culture, whereas most interventions

(n=11) mentioned issues of culture. Most interventions (n=13) did not refer to theory in

designing their communication intervention.

WHO has targeted four NTD for elimination by 2020: lymphatic filariasis (LF),

leprosy, human African trypanosomiasis (sleeping sickness) and blinding trachoma. LF’s

elimination strategy is aimed at stopping transmission, mainly through community wide

administration of anti-parasitic drugs —albendazole (GlaxoSmithKline), ivermectin

(Merck & Co. Inc.), and diethylcarbamizine, DEC (Eisai)— in endemic areas for a

minimum of five years, as well as reducing burden of the disease in people already

affected through management of lymphedema and hydrocele (Zhou et al., 2016). An

alternative community-wide regimen in endemic regions is the use of common table salt

or cooking salt fortified with DEC (Freeman et al., 2001).

Because of its high reliance on mass drug administration (MDA), it is not

surprising that an important number of publications (69%) included in this review were

focused on issues of compliance. In most cases (58.6%), health education was

recommended as an effective tool to provide information and induce behavior change in

relation to MDA. In the goal of sensitizing and mobilizing local leaders, health workers,

103 and general population to join MDA campaigns, these strategies have relied on

administering information about LF transmission patterns (Njomo et al., 2012), treatment

options (Ziperstein et al., 2014), as well as benefits of the strategy (Aboagye-Antwi et al.,

2015; Hussain et al., 2014). Higher levels of compliance have been associated with trust

in drug distributors, timely provision of information regarding access to treatment, and

visibility of positive results (Krentel et al., 2016).

In terms of messaging, some studies have identified the need to address concerns

about side effects and safety of MDA, as well as presenting LF elimination as a ‘shared

responsibility’ (Rosanti et al., 2016). Segmenting publics by educational and socio-

economic status (Kisoka et al., 2014), as well as disseminating information through

frequently visited social settings and authorities already respected by local communities

(Moala-Silatolu et al., 2012), are practices recommended for effective message

dissemination . Radio, television, posters, newspaper, and town criers have been some of

the communication channels involved in these strategies (Kisoka et al., 2014; Parker &

Allen, 2013). Short message services (SMS) and apps to support community health

workers’ in their roles of data collection and report (Stanton, Molineux, Mackenzie, &

Kelly-Hope, 2016), as well as text messages to reach younger populations and involving

them in local MDA activities (Krentel et al., 2016), have also been tested. Innovative

approaches such as packaging research data and making it readily available for decision-

makers (Uneke et al., 2015), as well as designing toolkits with information specifically

directed to contexts of post-conflict or natural-disaster (Krentel et al., 2013) have been

proposed.

104 Since community participation is mostly equated with compliance (Kisoka et

al., 2014), particular interest has been posed in identifying community perceptions that

act as barriers in the achievement of programmatic goals (Aboagye-Antwi et al., 2015;

Hussain et al., 2014). Those barriers include lack of trust in drugs’ quantities, safety, and

packing (Krentel et al., 2013), as well as worries about the need of treating these diseases

instead of others that are perceived as more prevalent and urgent in local contexts

(Kisoka et al., 2017; Parker & Allen, 2013).

This utilitarian definition of participation has been problematized, as it dismisses

the political and cultural relevance of communities’ opinions, beliefs and perceptions as

simple ‘barriers to elimination’ (Parker & Allen, 2013). Arguments about increasing

communities’ engagement in interventions designs (Parker & Allen, 2013), facilitating

communities’ involvement in health workers’ selection (Njomo et al., 2012), and going

beyond persuasion goals (Moala-Silatolu et al., 2012), have been presented. In these

cases the authors have favored provision of relevant information that responds to rational

and legitimate local concerns, over production of sophisticated communication strategies

and materials aimed at reducing populations’ resistance. These studies have demonstrated

that current strategies are based on ideas about populations living in poverty as apolitical

and homogenous (Kisoka et al., 2017; Mutheneni et al., 2015), which in turn increases

the distance between policy makers and populations at risk.

Nevertheless, more comprehensive approaches have also been attempted in LF

elimination campaigns. Aggithaya et al. (2013) describe an approach to health promotion

in which allopathic and ayurvedic medicine are combined in self-treatment of

lymphedemas. Information about LF and its effect is provided in workshops supported by

105 booklets and videos supported facilitators’ interaction during these workshops.

Similarly, Zeldenryk, Gray, Speare, Gordon and Melrose (2011), propose to go beyond

the shortcomings of strategies founded on the idea of lack of knowledge, to propose

community-driven rehabilitation programs designed to address issues of stigma and

psychological burden faced by LF patients. Considering that these issues go beyond the

individual realm, this approach suggests health education integrated into self-care

management, re-engagement in social activities and health promotion.

At a larger scale, the Haitian program for NTD management combined rigorous

selection of community health workers —under criteria of being known and respected

inhabitants in their districts—with a highly visible social mobilization strategy. The

program used a cascade model of information designed to secure that all actors involved

were capable of addressing critical messages. Flyers, banners, sound tracks, radio

programs, television spots, and community meetings held in schools, churches, and

markets were used as main vehicles. A knowledge attitudes and practices (KAP) study

conducted previous implementation served as formative research for selection of

channels and message design. The authors attributed part of the success of this program

to the high levels of community awareness derived from evidence-based, multi-channel,

and highly visible communication and education campaigns, as well as a well-trained

network of drug distributors highly trusted by community members.

In the same vein, other programs have also given special attention to the

characteristics of community health workers in charge of drug distribution and

community education. Turning knowledge about their communities into public support,

involving family members during their home visits, as well as establishing differentiated

106 approaches according to the priorities of treatment (Aggithaya et al., 2013; Byrne &

Collins, 2015a; Kisoka et al., 2014; Sime et al., 2014; Ziperstein et al., 2014), are

methods that have rendered positive results for community health workers in terms of

adherence to treatment. Krentel, Fischer and Weil (2013) described in detail the

conditions required to build trust in drug distributors, all of them associated with effective

communication processes at individual and institutional levels. Those conditions include

acknowledged reputation and credentials of information providers, training on

communicating knowledge related to MDA, willingness to answer questions, and belief

on the relevance of the program.

Increasing awareness about the physical and psychological consequences of LF in

all actors involved in elimination efforts and not only exclusively on recipient

communities, and facilitating wide distribution of knowledge on best practices

(Martindale et al., 2014; Uneke et al., 2015), have been other communication oriented

recommendations identified for LF elimination.

Control.

Schistosomiasis.

For schistosomiasis (STH) control, nine (n=9) of the articles were

recommendations, whereas twenty (n=20) were interventions. All levels of influence

were addressed either in recommendations (individual [n=2], community [n=2],

institutional [n=7]) or interventions (individual [n=9], interpersonal [n=1], community

[n=14], institutional [n=3], policy [n=1]). Most recommendations (n=6) and interventions

(n=12) mentioned issues of culture. Most interventions (n=12) did not refer to theory in

designing their communication interventions.

107 Similar to LF, schistosomiasis (STH) is another NTD treated through MDA.

Current SC control programs are focused in providing praziquantil to target populations

under different frequencies and distribution methods, being annual MDA of all

community members in targeted areas the most intensive one (Secor, 2015).

Consequently, 14 out of the 29 articles about STH identified in this review dealt with

issues of compliance. Most of these studies described routes towards compliance with

MDA regimes framed on a general framework of health education based on information

provision as an affective route towards behavior change (Leonardo, 2016; Monde et al.,

2016; Ouedraogo et al., 2016; Phongluxa et al., 2015).

Advocacy, health education, and IEC campaigns have been deigned to

disseminate messages about MDA potential benefits ( Odhiambo et al., 2016; Chaula &

Tarimo, 2014; Odhiambo et al., 2014; Omedo et al., 2014), as well as disease focused

information such as dangers of SC infection, risk of contact with contaminated water, and

recommendations to avoid secondary effects (Muhumuza et al., 2014; Rochat et al.,

2015). Debates about the actual need of convening very detailed information about

STH’s transmission cycle in populations’ at risk emerged as an interesting concern in

message design. While some authors emphasized that this knowledge is necessary to

foster the distribution and acceptance of preventive treatment (Odhiambo et al., 2014;

Phongluxa et al., 2015), others argued that knowledge about risk factors is not the most

important variable in behavior change and should be replaced by concrete cues to action

that can more directly lead to health protection (Rochat et al., 2015). In this context,

studies recommended segmenting publics and crafting information for specific groups,

such as less advantaged members of the community (Adokiya et al., 2015) and travelers

108 (Rochat et al., 2015). Similarly, increasing policy makers’ understanding about how

context, religious practices and socio-economic status affect risk-prone behaviors (Amin

& Abubaker, 2017; Celone et al., 2016; Macharia et al., 2016; Monde et al., 2016;

Muhumuza et al., 2015) was recommended. Preferred media in STH strategies included

radio road shows, school booklets, posters, display boards, and pamphlets (Dumonteil et

al., 2013; Feliciangeli, 2014; Ouedraogo et al., 2016). Mhealth and social media

(Provecho et al., 2017) was considered an important tools to explore by future

interventions.

This high reliance on health education was questioned by some authors that see

this approach as insufficient to deal with very serious and valid concerns about MDA

expressed by populations at risk (Rochat et al., 2015; Wang et al., 2013). Hastings (2016)

problematized the scope of schistosomiasis’ MDA campaigns in terms of reaching

populations at risk through current communication efforts. As rumors that reinforced

negative reactions against an MDA campaign being conducted in Tanzania increased, the

author identified a series of mistakes that made of communication efforts more

undermining than enhancing factors: provision of information through unauthorized

voices (school teachers instead of health authorities), lack of time for parents to

understand why the medicine was provided to their kids, insufficient health education to

school teachers as the drug distributors of choice, and wrong messages emphasized

during the campaign, were some of them. Other studies also emphasized the spread of

rumors associated with religious objection and the “real” purpose of treatment, as

definitive factors for derailing campaigns’ activities and purposes (Omedo et al., 2012).

109 Including target populations during the planning cycle of these interventions

was recommended as a mechanism to reduce this resistance (Omedo et al., 2012).

Although conceptualizations about participation as enrolment are also common in this

case (Chaula & Tarimo, 2014), efforts to include community members in the selection of

community health workers, as well as community health workers’ perspectives in

decisions about distribution strategies (Boelee et al., 2013; Omedo et al., 2014; Omedo et

al., 2012; Wang et al., 2013), were made. These actions were identified as effective

mechanisms to gain insights into community perceptions and include during the planning

phase of programs and interventions.

Some studies applied a wider approach to analyze the impact of socio-economic

aspects of disease in prevention (Celone et al., 2016; Liu et al., 2017; Muhumuza et al.,

2014). Celone et al., (2016), for example, demonstrated the impact of infrastructure in

populations’ capacity to implement recommended behaviors. Construction of male and

female urinals, safe play areas, and laundry spaces were treated as necessary mechanisms

to address pressing needs of local communities, as well as strategies to create natural

spaces for message dissemination. Following the Human Centered Design approach,

researchers worked with local communities to make decisions about how to address local

priorities in association with externally defined programmatic goals. Other studies also

recommended attention to socio-economic conditions to enhance behavior change, such

as provision of snacks to reduce the side effects of medicine intake (Favre et al., 2015;

Muhumuza et al., 2015) and improvement of water supply systems (Amin & Abubaker,

2017).

110 Several studies described positive impacts of social mobilization as a

mechanism to enhance community health workers’ position, reduce resistance to

treatment and increase programs’ capacity to cover existing demands (Odhiambo et al.,

2016; Omedo et al., 2012; Omedo et al., 2014). Social mobilization activities identified in

this review included door to door campaigns (Barkia et al., 2014), sensitization through

community gatherings (Celone et al., 2016), use of public spaces such as funeral

ceremonies and congregations (Odhiambo et al., 2016), and replication of messages used

in mass media in forums organized by community leaders (Omedo et al., 2014).

Articulating actions with religious organizations was identified as an effective way to

convene community members’ attention through already trusted spaces (Celone et al.,

2016). Training of religious authorities and local teachers on STH prevention can be

strategic in the goal of securing provision of information on regular basis at local levels.

Chagas disease.

For Chagas disease (CD) control, fifteen (n=15) of the articles were

recommendations, whereas thirty (n=30) were interventions. All levels of influence were

addressed either in recommendations (individual [n=5], interpersonal [n=3] community

[n=7], institutional [n=4], political [n=1]) or interventions (individual [n=18],

interpersonal [n=4], community [n=22], institutional [n=5]). Most recommendations

(n=12) and interventions (n=16) did not address culture as a particular subject. Most

interventions (n=22) did not refer to the use of theory when designing their

communication actions.

Control methods for CD differ substantially from the ones proposed for GW, LF

and STH. No vaccine has been developed for CD; medicines such as nifurtimox (Bayer)

111 and benznidazole (Roche) have been used to treat patients in the acute phase of the

disease, but both drugs have shown side effects that become more serious as a patient’s

age increases, including severe kidney damage (Viotti et al., 2014). Consequently, control

strategies recommended by WHO are mostly focused in interrupting CD’s transmission

cycle between vectors and humans thorough selective or community wide indoor

fumigation with deltrametine, accompanied by information and education activities

(Gilson et al., 2011; Grijalva et al., 2011; Grijalva et al., 2015). Similarly, multiple

interventions have attempted environmental modifications through home reconstruction

or modification (Nieto-Sanchez, Baus, Guerrero, & Grijalva, 2015; Rojas de Arias et al.,

1999).

Due to the intricate web of economic, social and environmental dynamics leading

to CD transmission, strategies considered participatory in nature -such as community

surveillance and home improvement- have been widely applied in this case (71%).

However, uses made of the idea of participation vary through a wide range of actions and

conceptualizations, including convincing community members of accepting interventions

at their household —particularly spraying campaigns (Bustamante et al., 2014;

Buttenheim et al., 2014) and infrastructure interventions (Waleckx et al., 2015)—,

triatomines’ report and collection (Curtis-Robles et al., 2015; Dias, Queiroz, Diotaiuti, &

Pires, 2016; Maeda & Gurgel-Gonçalves, 2012), and involvement of community

members in health promotion activities (Lardeux et al., 2015; Sanmartino et al., 2015;

Yevstigneyeva et al., 2014). Approaching local populations to collect traditional

knowledge (Lucero et al., 2013), as well as getting insights into the experience of patients

and affected communities (Sanmartino et al., 2015; Streiger et al., 2012), have been more

112 complex attempts at bringing the political implication of participatory practices. In

some cases, this complexity expresses as involvement of local communities under gender

sensitive lens (Triana et al., 2016; Valdez-Tah et al., 2015), as well as identification of

local dynamics through which local responsiveness can be motivated (Dell'Arciprete et

al., 2014; Rangel et al., 2016).

Consistently, multiple projects (29%) applied or recommended an Eco-health

perspective when designing CD prevention interventions (Arenas-Monreal et al., 2015;

Charron, 2012; Dumonteil et al., 2013; Hurtado et al., 2014a; Lardeux et al., 2015;

Lucero et al., 2013; Santos et al., 2016; Triana et al., 2016; Waleckx et al., 2015).

Consideration of environmental and behavioral factors in these cases has opened avenues

to think of different communication strategies to activate interactions at individual,

interpersonal, communitarian and institutional levels. Interventions at the household

level, for example have emphasized collaboration among family members to reconstruct

areas that can facilitate triatomines’ entrance and hiding (Triana et al., 2016), whereas

strategies focused on community levels have worked to engage community members in

epidemiological and entomological surveillance (Rangel et al., 2016), as well as

participatory planning and implementation (Waleckx et al., 2015). These interventions

have generated important information about behavior change associated with

modification of living environments under systemic perspectives (Dumonteil et al., 2016;

Lardeux et al., 2015). They have also emphasized the need of long term health promotion

integrated into local health systems in order to extend application of protective practices

over time (Lardeux et al., 2015; Lucero et al., 2013).

113 Besides traditional health education activities, health promoters in CD control

strategies play an active role in facilitating community surveillance for vector control.

This surveillance includes providing information about triatomines’ detection in domestic

and peridomestic areas, safe collection, reporting to health centers, as well as feedback

and follow up (Hashimoto et al., 2012; Hashimoto, Zuniga, Romero, et al., 2015; Rojas-

Cortez et al., 2016). Some authors have explored the advantages of this long term

involvement to generate trust in local communities (Paz-Soldan et al., 2016), as well as

acquiring insights into communities symbolic and meaning-making processes

(Dell'Arciprete et al., 2014). Awareness raising (Yoshioka, 2013) and critical thinking

about existing conditions for environmental modifications (De Urioste-Stone et al.,

2015), have also been pursued through CD health education strategies.

From the studies included in this review, CD articles were the ones that more

often included references to theoretical frameworks commonly used in health

communication: 27% compared to 16% in GW, 18.7% in LF, and 15% in SC.

Specifically, the Health Belief Model, HBM (Becker & Maiman, 1975) and Social

Networks Analysis (Valente & Fosados, 2006) were applied to identify patterns and

interactions that could be influential in diffusion process and behavior modification

(Buttenheim et al., 2014; Triana et al., 2016); HBM was also used to measure threat

perception as a result of perceived severity and susceptibility to CD (Rosecrans et al.,

2014). The PRECEDE-PROCEED model (Green & Kreuter, 2005) was used as

analytical framework in an intervention aimed at providing tools to reduce rodents as

reservoir for triatomines (De Urioste-Stone et al., 2015) and as planning methodology to

integrate data from six different sites in a pilot study about community surveillance in

114 Central America (Hashimoto, Zuniga, Nakamura, et al., 2015). Recent approaches

such as mhealth have been applied to design interventions exploring text message

capacity to improve appointment attendance in pregnant women diagnosed with CD

(Cormick et al., 2015), as well as identification and report of household triatomines

through a web based platform (Curtis-Robles et al., 2015). Given the participatory

emphasis mentioned by several programs, it is interesting that only one concrete

reference about participation theory was identified in this research (De Urioste-Stone et

al., 2015).

Discussion

Even though it could be assumed that different public health goals demand

specific communication interventions, this review showed a general use of

communication as a set of support tools or supplemental activities aimed at reinforcing

the achievement of biomedical goals in the four studied conditions, regardless of their

stages of eradication, elimination, or control. Attention to cultural, and social practices is

given mainly in the context of media selection and message dissemination.

Behavior change was identified as the most prominent outcome of interest in this

review (38.5%). Communication strategies varied in channels and approaches mostly as a

response to the behaviors identified as risk-prone according to the transmission cycle of

the disease. Health communication, health education, and awareness raising campaigns

were the strategies most commonly referred in this expectation of behavior change. Using

rationales, language, and tones associated with risk framing —mostly for awareness,

instruction and persuasion— behavior change is pursued in alignment with protective

practices and acceptance of treatment. As an example, while interventions focused on LF

115 and STH were mainly focused in health education to secure compliance with MDA

goals at individual and community levels, CD programs included a variety of cleaning

and reconstruction practices promoted at the household levels and expected to be

followed by exposed families. Inclusion of stories about social incentives, rewards, and

best practices are promising in terms of expanding social and scientific narratives about

populations exposed to neglected diseases.

Noteworthy is the effort to include formative research (generally KAP and

perception studies) for the development of communication materials and subsequent

phases of implementation (Lemoine et al., 2016; Macharia et al., 2016; Omedo et al.,

2014). Several studies showed the need of testing materials and methods such as

micronarratives (Krentel et al., 2016), focus groups (Zeldenryk et al., 2014) and mhealth

tools (M. Stanton et al., 2016) to validate language, acceptability, and effectiveness. This

finding is consistent with previous literature emphasizing the need of going through more

in depth processes of research for interventions design (Muela Ribera, Hausmann-Muela,

Gryseels, & Peeters Grietens, 2016).

These results present avenues attempted by NTD interventions in order to

approach social dynamics in the context of infectious diseases’ eradication, elimination

and control. Even though there is an ongoing interest in finding avenues to increase

effectiveness of suggested treatments, a more complex understanding of the processes

and capacities offered by the health communication field is required in order to make a

sound use of them and approach the social justice goals proposed for this group of

diseases.

116 Health communication efforts do no happen in a vacuum. They are the result

of specific conditions that alter the practices and resources framing populations’

understanding of health as a social phenomenon. Babrow and Mattson (2011) argued that

health efforts are constructed in a complex interweaving between bodily, emotional,

cognitive and social experiences that allow specific levels of interaction around the

concepts of disease and wellbeing. In this sense, health promotion interventions are

meant to address these levels of interaction in order to generate context specific agendas

that better interpret individual, interpersonal, community and political circumstances of

the different stakeholders involved in a particular effort.

Accordingly, I present three areas in which the field of health communication can

substantially contribute to the effectiveness of NTD efforts: differentiated approaches for

different agendas; configuration of culture-centered over culture-sensitive frameworks;

and complex analyses of the political aspects involved in communities’ participation.

Different agendas, different communication approaches.

The complex network of factors involved in NTD occurrence demand a more

specialized approach to the issues intended to address through communication actions.

Understanding the level of individual knowledge about a particular condition is as

important as contextualizing the system of values, norms and resources operating when

individuals and communities decide to apply (or not) that knowledge in the direction

expected by interventions’ designers. For example, deficient water supply systems and

poor sanitary practices contribute to the spread of LF in a radically different way from

how urbanization and soil degradation contribute to the transmission of CD (Gazzinelli et

117 al., 2012); therefore, both contexts cannot be addressed under the sole parameter of

health promotion.

Guttman (2000) suggests that program designers should identify the locus of

problem, solution, benefit, and evaluation in order to generate coherent strategies toward

public health goals. This coherence allows communication researchers and implementers

to understand the level(s) of the intended change (individual, family, organizational,

community, marketplace, societal, and cultural-normative), as well as the extent to which

specific types of change (environmental, power-based, behavioral, educational,

collaboration-based or policy-oriented) can be promoted.

Understanding that persuasion towards behavior change is one, but not the only

outcome to be expected from communication strategies is particularly important in the

case of MDA campaigns. As explained by multiple authors in this review (Boelee et al.,

2013; Bustamante et al., 2009; Cavaca et al., 2016; Donovan et al., 2014; Mewabo et al.,

2017), epidemiological, economic, technical and environmental arguments are included

in the configuration of risk made by local communities. If populations’ acceptance of

arguments posed by MDA promoters programs is considered a valid response under

biomedical parameters, rejecting them on the bases of fear and mistrust are equally valid

reactions under historical, spiritual and culture-specific lenses. The MDA strategy has

been conceptualized under a series of challenging premises and difficult messages that

demand even more attention from a communication point of view (Ziperstein et al.,

2014). Dismissing local arguments as irrational and opting for persuasion as the fastest

route to invalidate populations’ positions will only limit interventions’ response capacity

in the long run.

118 Similarly, the MDA strategy faces operational challenges associated with

communities’ voluntary involvement, as well as effective monitoring and evaluation

(Prichard et al., 2012). Structural limitations faced by populations living in contexts of

poverty are consistently neglected by researchers’ approach to the underlying social and

economic causes of poverty. Critics point out that lack of consultation with afflicted

communities leads to increasing gaps between decision makers and populations at risk,

which in turn maintains or exacerbates social inequalities (Bardosh, 2014). Generating

spaces and languages that facilitate encounters between community members,

researchers, funders and program designers to define expected changes and potential

routes of action can be a concrete way of reducing tensions identified in this area. Areas

such as interpersonal communication and organizational communication count with

thoroughly studied theoretical and methodological frameworks designed to generate

productive dialogues in this direction.

Framing communication interventions under specific theoretical perspectives can

substantially enhance achievement of programmatic expectations. Studies included in this

review (Celone et al., 2016; M. O. Omedo et al., 2012) illustrated specific uses of

theoretical perspectives that even if not exclusive of the health communication field, can

substantially enhance communication goals. In this context, it is important to note that the

field has experienced a conceptual and practical movement from theories oriented to

individual behavior change toward approaches more interested in identifying processes

through which people make sense of their health priorities under specific social contexts,

posing particular attention to the way in which these priorities are communicated and

negotiated (Obregon et al., 2009; Obregon & Waisbord, 2010). Strategies that show

119 flexibility to adapt communication activities to local resources and provide autonomy

to local providers for decision-making in communication issues are better equipped to

respond to local concerns from different angles (Tufte & Mefalopulos, 2009). This

approach does not dismiss the relevance of individual behavior change, but prioritizes

community strengthening as the most important expected outcome in public health

interventions (Greiner, 2012; Greiner, 2010).

Culture-sensitive vs. culture-centered approaches.

The study of culture in health promotion provides important arguments to

understand the contextual nature of communication (Airhihenbuwa et al., 2014; Dutta &

Basu, 2008). Two parallel approaches have focused their attention in the interactions

between community members and health personnel in multidisciplinary health promotion

efforts: the culture-sensitive and culture-centered approaches to health communication

(Airhihenbuwa et al., 2014; Airhihenbuwa & Obregon, 2000; Dutta & Basu, 2008; Dutta

& de Souza, 2008). Although these two approaches acknowledge the relevant role of

culture when setting specific health objectives, they hold distinct assumptions about the

role it plays in the consolidation of a healthy life. From a culture-sensitive perspective,

culture is often viewed as a barrier to achieving “desired” health-outcomes; consequently,

studies are focused in identifying these barriers in order to frame health behaviors in a

way that is acceptable for the local cultural landscape (i.e., system of beliefs, social and

material relationships). Said differently, the end-goal of culture-sensitive approaches is to

bring into action preconceived health behaviors (and outcomes) by turning existing

cultural features from barriers into allies (Dutta & de Souza, 2008). Culture-centered

approaches, on the other hand, see culture and local capabilities as the contextual factors

120 that should define the logics of health interventions. Instead of barriers, they

constitute a space to confront the dynamics of marginalization within which these

communities are situated (Dutta & Basu, 2008; Dutta et al., 2017). In this sense, the end-

goal of culture-centered approaches is to challenge power inequalities that affect the

material conditions of these communities with the aim of facilitating the improvement of

health outcomes as part of a more decisive process of social change (Jamil & Dutta,

2012).

Although an important number of publications (53%, n=60) included in this

review did not even refer to cultural factors, the ones that did it operated between these

two approaches. For those interventions supporting culture sensitive approaches (47.2%),

a tone of sensitization and persuasion was commonly used. The appreciation of culture as

a barrier is constituted and reinforced through a series of actions aimed at reducing

resistance in local populations. Studies conducted under more culture-centered

perspectives (52.8%) (Dell'Arciprete et al., 2014; W. Kisoka et al., 2017; Parker & Allen,

2013) included local contexts and community reactions in order to inform

implementation with a more complex set of arguments, as well as critical perspectives

about issues of power in current NDT strategies. As stated by Hastings (2016), changing

the tone of messages or using more sophisticated communication channels might not be

enough to addressed the concerns of local population when it comes to drug intake or

interaction with external actors; these interactions should be taken as expressions of

realities that more often than not, occur in very distant political and geographical spaces.

This space usually expresses as distance between the locus from where strategies are

framed and the realities of populations in the receiving end of the equation.

121 Consequently, designing complex approaches to work not only within the

cultural boundaries of populations at risk, but also to question dynamics that define

structural marginalization, emerge as an important priority of NTD programs.

Recommendations for making efforts to inform interventions design with contextualized

information should be taken seriously, as rumors, non-compliance, fear, and mistrust will

continue emerging under the current logics of control, eradication and elimination

strategies.

Political aspects of participation.

Even though the concept of participation is a common place in public health

literature nowadays, its implementation is still challenging. This review showed uses of

the term that range from active engagement in interventions’ design (De Urioste-Stone et

al., 2015; Lemoine et al., 2016) to mere compliance and enrolment. Important actions

were identified in this review to extend the reach and scope of community participation,

including engaging community members in the planning phase of interventions, relying

on community knowledge for interventions design, and using locally relevant scenarios to

enhance decision-making at community levels. We also identified conceptualizations that

considered community participation merely as mechanism to reduce resistance towards

implementation, a perspective that can be problematized because it prioritizes

programmatic objectives over the essential goal of acknowledging the needs of neglected

populations in decision-making about issues that affect their health (International

Conference on Primary Health, 1978; Turner et al., 2011). Context-specific particularities

at the individual, household, community and social levels are determinant to describe the

specific shape that community involvement can take in each case. This review

122 highlighted actions such as selecting local volunteer workers, involving peer

educators, providing community training, and using local resources as ways to promote

community participation in communicable diseases’ control programs.

Similarly, moving from instrumental perspectives that see participation as a goal

in itself, rather than a necessary process to stimulate social change, can open the door to

design more comprehensive involvement of local priorities beyond persuasion (Omedo et

al., 2012; Stanton et al., 2016). In this review, interventions that deployed multiple

channels and diverse entry points also reported higher levels of engagement. In this

sense, Eco-health interventions provide important references for health promotion

initiatives under systemic lenses open to consider local knowledge, as well as issues of

gender and power in interventions design (Celone et al., 2016; Lucero et al., 2013).

Similarly, acknowledging the evolving character of establishing relationships with

community members is a fundamental element in the generation of ownership and

sustainability for health promotion efforts of this nature. As stated by Macharia et al.

(2016), “Anticipating community participation in a programme is not an intelligent guess,

as this is a learning process for beneficiaries and the stakeholders which can be earned

through the sharing of experiences by all the concerned actors” (p. 2). In this sense, focus

on processes more than outputs, according local realities and beyond programmatic

demands, can be considered an important step towards developing a kind of involvement

that acknowledges and addresses NTD social-economic impacts, and goes beyond

populations’ buy in.

123 Conclusion

Because of its nature as fundamental human mode of explaining and being in the

world (Pearce, 1989), communication lies at the core of the human experience of physical

spiritual, emotional, and ethical states. Communication operates through a wide range of

practices at micro and macro levels fundamental in the creation and recreation of

individual, interpersonal, communal and institutional ideas about health, illness and

wellbeing.

In this context, it is important to acknowledge that multiple forms of silence have

determined the dynamics of NTD: unawareness, stigma, and political inaction, among

others. These dynamics articulate issues of power, representation, framing, deployment

and construction of realities around health issues expressed in strategies’ orientations and

purposes. This review kept a broad focus in order to include implementation of

communication strategies in specific contexts, as well as recommendations generated by

studies interested in using communication knowledge and resources. Contemporary

debates about the social construction of health (Babrow & Mattson, 2011; Deetz, 1996b),

the role of local communities in determining their health priorities (Obregon et al., 2012)

and the implications of cultural perspectives in health promotion (Dutta & Basu, 2008;

Dutta & de Souza, 2008), can effectively inform decision-making in interventions

focused in NTD eradication, elimination and control. As stated in previous studies, the

choice of the world ‘neglect’ entails a concrete call to acknowledge responsibility in the

realization of social justice objectives (Allotey et al., 2010). In this context, reducing the

distance between neglecters and neglected through effective communication actions

124 becomes not only a strategic priority but also an ethical imperative for scientists,

program designers, and researchers involved in NTD research.

Limitations.

Search terms might not reflect the full spectrum of communication strategies in

NTD literature; however, we consider that the terms applied for this review are

overarching and depict the dynamics of the field. Similarly, it is possible that implicit

definitions of culture and cultural approaches to disease prevention are included in the

reviewed articles; however, we decided to focus on explicit references in order to

maintain authors’ perspectives in our analyses. This review was limited to academic

literature published in indexed journals. However, communication issues previously

identified are better addressed in grey literature and implementation reports available

through different channels. Considering that most of the articles included in this selection

were not specifically focused on communication but in biomedical aspects of the selected

conditions, issues of space could have affected the extent to which communication

information was presented. This review included papers in English, French, Portuguese

and Spanish, but relevant information in other languages might also been excluded.

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139 Chapter 5: Towards a Theory of Sustainable Prevention of Chagas Disease:

An Ethnographic Grounded Theory Study

Introduction

Chagas disease is caused by Trypanosoma cruzi (T. cruzi), a protozoan parasite

that can be found the hindgut of blood-sucking bugs known as triatomines. The most

common route of human transmission of CD occurs in domiciliary environments where

triatomines can remain hidden in cracks and crevices during the day and become active at

night to search for blood sources. Triatomines feed on people’s blood while they are

sleeping; in order to make room for larger meals, triatomines defecate and leave the

parasite on people’s skin. Inadvertently, bitten individuals bring T. cruzi to their system

by rubbing the punctured wound where triatomines have been feeding from or through

the mucus membranes in mouth and eyes. Once the parasite enters the human system, it

invades cells around the entry site and multiplies inside them. At this point, the parasite

turns into trypomastigotes that are released into de blood system, starting the acute phase

of the infection. People can show mild symptoms or remain asymptomatic for long

periods of time, until they develop the next phase of T. cruzi infection known as chronic.

At this stage people can experience arrhythmias, palpitations, and chest pain (Gascon et

al., 2014). About 30% to 40% of the affected population develops cardiopathies,

alterations of the gastrointestinal system such as megacolon and mefaesophagus,

neurological or a mix of these clinical manifestations in latter stages of the disease

(Soriano-Arandes et al., 2014).

CD has been classified as a neglected tropical disease because it is commonly

found among people living in poverty in tropical and subtropical regions of Central and

140 South America, as well as the south of the United States (Hotez, 2014). No vaccine

has been developed, and medicines used to treat its symptoms in the acute phase —

nifurtimox (Bayer) and benznidazole (Roche)— have shown side effects that become

more serious as a patient’s age increases, including renal and hepatic complications

(Viotti et al., 2014). Other forms of transmission include intake of contaminated food,

vertical transmission from mothers to infants, and blood transfusion (World Health

Organization, 2012b).

Recent estimates from the World Health Organization (WHO) showed that around

5,742,167 people are infected with T. cruzi in Latin America, approximately 199,872 of

them in Ecuador (World Health Organization, 2015). Ecuador shows the highest

percentage of population at risk due to domiciliary infestation in the continent (28.99%),

an estimated incidence of 14 people per 100,000 inhabitants —the highest after Bolivia,

Argentina and Paraguay—, and mortality rates around 2.5% per 100,000 inhabitants per

year (Dumonteil et al., 2016). In spite of successful control efforts developed by the

National Chagas Disease Control Program since 2003 (Dumonteil et al., 2016; Quinde-

Calderon, Rios-Quituizaca, Solorzano, & Dumonteil, 2016), CD is still present in the

country, particularly in areas where environmental factors and living conditions create

favorable spaces for triatomine infestation. In 2003, Loja province in southern Ecuador,

was identified as one of those areas. It has been established that around 35% of

households in some areas of this province have shown infestation with triatomines, with

seroprevalences between 3.6% and 3.9% (Grijalva et al., 2005; Thomson, Thomas,

Sellstrom, & Petticrew, 2008). Domiciliary infestation in the province has been

associated with presence of pigs and goats in perdomestic areas, lack of latrine/toilet,

141 storage of agricultural products inside the house and presence of fruit trees (Grijalva

et al., 2015).

Even though CD exhibits a very complex transmission cycle (Noireau, Diosque,

& Jansen, 2009), ongoing contact between humans and vectors increases the possibilities

of contracting the infection and developing the disease (Bustamante et al., 2009).

Consequently, multiple control programs focused on interrupting CD transmission cycle

by improving living environments of populations at risk have been developed in the last

few years. Following the World Health Organization (WHO) recommendations (World

Health Organization, 2012b), such programs have implemented measures such direct

spraying with delthametrine and community surveillance in combination with different

types of infrastructural interventions, including improved sanitation and provision of high

quality and durable plastering materials (Bustamante et al., 2009); amelioration of

ventilation and illumination openings (Rojas de Arias et al., 1999); cracks fixing

(Lardeux et al., 2015); and, complete replacement of dwellings (Santos et al., 2016).

Home improvement for disease prevention.

Considering the high impact that housing structures can have on the overall health

of their inhabitants (Haines et al., 2013; Thomson & Petticrew, 2007; Thomson,

Sellstrom, & Thomas, 2007; Thomson et al., 2008), it is not rare to find associations

between infrastructural interventions and control of one or more vector transmitted

diseases (Lindsay et al., 2003; Lucero et al., 2013). It has been documented, for example,

that malaria was eradicated in the United States and substantially reduced in Panama

during the construction of the Panama Canal through specific infrastructural measures,

including installation of screens in doors and windows (Lindsay et al., 2002).

142 However, home improvement measures are considered difficult to justify from

scientific and financial points of view. Confounding factors make difficult to establish a

causal relationships between home improvement and better health (Thomson et al., 2008;

Vale et al., 2013), and cost-effectiveness arguments indicate that cheaper, faster, and

more specific solutions for disease prevention might exist (Knudsen & von Seidlein,

2014; Thomson, 2005). Even if relevant from implementation points of view, these

arguments do not reflect potential impacts of home improvement over comprehensive

public health agendas (Haines et al., 2013).

In the specific case of Chagas disease, previous studies have shown promising

results, including significant reductions of infestation by Triatoma infestants in dwellings

of indigenous communities in Bolivia (Lardeux et al., 2015); sustained reduction of

Triatoma dimidiata homestead presence for over five years in rural communities of

Guatemala (Lucero et al., 2013), and, elimination of domestic transmission with T.

infestants in highly endemic areas of Bolivia, Paraguay, North Argentina and in the

Brazilian states of Minas Gerais, Bahia, and Rio Grande do Sul (Dias, 2007).

Additionally, increased knowledge about vectors and awareness on Chagas disease

transmission cycles has been associated with participatory approaches to housing

improvement (Waleckx et al., 2015). However, more information is needed to understand

the impact of home improvement over other socio-economic factors associated with

Chagas disease transmission, as well as the sustainability of these efforts (Gurtler &

Yadon, 2015).

143 Systemic approaches to Chagas disease prevention.

Different from disease-centered approaches, systemic approaches to disease

prevention identify and anticipate synergies, reactions and interactions between actors

and contexts that should be considered by policy designers when addressing issues of

social justice such as the ones claimed by the NTD category (Gilson et al., 2011).

Systemic perspectives have been considered in NTD prevention when attempting to

include not only the biomedical conditions experienced as a consequence of infectious

diseases, but also the different forms of exclusion that constitute the experience of

marginalization for neglected populations.

Good quality housing can be considered a constitutive element of functional

health systems (Lindsay et al., 2002). Home improvement directly impacts socio cultural

dynamics beyond the physical elements of the construction. Aspects such as lifestyle,

culture, family composition, motivation, social class, time constraints, and perception of

wellness influence decision-making about materials and structure of dwellings (Gibler &

Nelson, 2003). In resource-constrained settings, additional elements, such as availability

of construction materials, populations’ income levels, relationships with local authorities,

and access to alternative models of housing, should also be considered (Hardoy,

Cairncross, & Satterthwaite, 1990).

Integrative models such as Ecohealth (Briceno-Leon, 2009; Dumonteil et al.,

2013) and One Health (Webster et al., 2016) have worked under a systemic perspective

with varied results for Chagas disease prevention. Eco-health (Forget & Lebel, 2001) has

been proposed as a way to improve people’s health, while strengthening communities and

promoting environmental sustainability. Six principles guide research conducted under

144 eco-health perspectives: systems thinking, transdisciplinary research, participation,

sustainability, gender and social equity, and knowledge to action (Charron, 2012). Eco-

health researchers acknowledge that the practice of systems thinking generates important

challenges for the actual implementation of control measures, particularly because they

require balance between methodological flexibility and rigor, which in turn generates

challenges for evaluating their effectiveness both in terms of disease control and costs

(Gurtler & Yadon, 2015).

When applied to Chagas disease, Eco-health approaches have been applied in

projects interested in improving infrastructure with some variations according to specific

implementation contexts. In Guatemala, for example, educational workshops, improved

insecticide spraying for tiled roofs and walls, participatory rodent control measures,

waste management, productive household activities and participant based reflective

process were developed (Bustamante et al., 2014). Similarly, low-cost housing

improvement techniques, promotion of house cleaning activities, removal of chickens and

dogs from human dwellings, and community participation have been combined in Bolivia

(Lardeux et al., 2015), whereas installation of window screens and education workshops

addressing management and cleaning of chicken coops have been implemented in

Mexico (Waleckx et al., 2015). Although important improvements in the general health

of the population were achieved in all these cases, additional resources are required to

follow up and appraise the sustainability of these efforts.

Similarly, the One-Health approach highlights the need for interdisciplinary and

comprehensive approaches to health promotion when addressing intersections between

health and ecosystems (Webster et al., 2016). By highlighting interactions between living

145 conditions and disease, this approach has made visible synergistic dynamics

facilitating infectious disease occurrence in contexts of poverty (Mackey & Liang, 2012).

One Health heavily relies on systems thinking to propose potential routes of action and

evaluating interventions’ effectiveness under premises of sustainability. Considering the

dynamic nature of all the constitutive elements of human environments, sustainability not

only refers to time, but also to space and the finitude of resources (World Health

Organization, 2012a). One Health proposes an ecological interpretation of disease in

which both current and future variations and effects of infectious diseases, including

evolutionary factors driving to drug resistance, change of hosts, and hybridization and

unexpected changes of infectious agents resultant from particular control measures, are

considered (Webster et al., 2016). The One Health approach advocates for a better

understanding of the knowledge and values of populations at risk of NTD beyond the

operative restrictions that those conceptualizations about their role as beneficiaries might

suggest (WHO, 2012).

Healthy Homes for Healthy Living (HHHL), a Chagas disease control program

currently developed in Loja province (Ecuador), follows the logics proposed by systemic

approaches to disease prevention. By studying HHHL, we intend to advance knowledge

on sustainability of Chagas disease control programs based on home improvement.

Consequently, I aimed to answer the following research question: What factors contribute

to or limit sustainable control of Chagas disease in the communities of Chaquizhca,

Bellamaria and Guara under the model proposed by Healthy Homes for Healthy Living?

146 Methods

Study area.

This study was conducted in Calvas county in Loja province, southern Ecuador.

Loja province shows a series of environmental conditions that favor presence of several

species of triatomines. The species Triatoma carrioni has been found in the northern and

southern areas of the province (altitudes ranging from 831 to 2,242 masl), while

Pastrongelous chinai has been found in in a wide range of altitude (175 to 2,003 masl)

and four ecological zones (Grijalva et al., 2015). Rhodnius ecuadoriensis —the most

common species in Calvas county—has been found in areas with altitudes ranging from

275 to 1,948 masl in the central and western portions of the province (Grijalva et al.,

2012). These areas are usually abundant in fruit trees that can host rodents and bird nests,

both factors previously associated with triatomines’ presence in sylvatic environments

(Grijalva et al., 2012; Suarez-Davalos, Dangles, Villacis, & Grijalva, 2010).

Climatological conditions associated with dry low mountain forest and dry tropical forest

common in this region have ben also identified as favorable for triatomines’ infestation

(Abad-Franch et al., 2001)

Socio-economic conditions have also been referred as risk factors in CD

transmission. Being an agricultural region, most families in Loja province rely on

economic activities that require ongoing association with their living environments. This

association is closely linked with practices previously identified as risk factors for CD

transmission, including accumulation of produce in the surrounding areas of the home,

interaction with pigs, as well as presence of dogs and guinea pigs (Grijalva et al., 2015).

Deficient housing has also been referred as a fundamental element of CD transmission in

147 Loja province, particularly when dwellings are built with adobe walls and earthen

floors (Grijalva et al., 2005) or do not have sanitary facilities available (Grijalva, Villacis,

Ocana-Mayorga, Yumiseva, & Baus, 2011).

This research was conducted in Bellamaria (36 homes), Chaquizhca (42 homes),

and Guara (48 homes), three communities of Loja province where HHHL’s intervention

has taken place. Socio-economic conditions are adversely affected by limited job

opportunities, as well as deficient access to basic services such as water, health and

education (Nieto-Sanchez, Baus, Guerrero, & Grijalva, 2015). Poor roads and limited

transportation alternatives increase isolation and marginalization faced by local families,

and restricts their access, participation and competitiveness in larger markets. These

communities were chosen as focus of HHHL’s intervention due to particularly high rates

of triatomine’s infestation registered during entomological searches conducted by the

Malaria National Service in Loja province between 2005 and 2009 (Grijalva et al., 2015).

Healthy Homes for Healthy Living model (HHHL).

The Healthy Living Initiative (HLI) is a health promotion program designed to

address socio-economic dynamics leading to CD occurrence in Loja province (Nieto-

Sanchez et al., 2015). Led by the Infectious and Tropical Disease Institute (ITDI) at Ohio

University (OU) and the Center for Research in Health in Latin America (CISeAL) at

Pontifical Catholic University of Ecuador (PUCE), the project is interested in exploring

strategies for long-term Chagas disease control as a way to address questions raised by

previous research showing that traditional control strategies suggested by WHO are

effective only for short periods immediately after fumigation (Grijalva et al., 2005).

148 HLI’s main project is Healthy Homes for Healthy Living (HHHL), a strategy

focused on designing, building, and promoting living environments conceived to deter

triatomines’ presence in intra and peridomestic areas of the homes located in these

communities. HHHL proposes a prevention model based on homes’ structural

improvement (Table 4), long-term health promotion at the micro-level of the household

(Table 5), and community involvement in locally driven income generation opportunities.

Actions in these three areas are articulated through ongoing communication between

actors with the purpose of informing decision-making at individual, interpersonal, and

institutional levels (McLeroy et al., 1988). However, due to its direct intervention in local

households, most of the work conducted by HHHL emphasizes impacts at the family

level.

Table 3. Anti-triatomine measures implemented as part of HHHL infrastructure intervention.

Intervention in domiciliary areas For full reconstruction Rationale Demolition of existing home. Avoiding reoccupation of endangered areas. Construction of a new home that includes kitchen, two or three rooms (depending on the size of the family), and social area (porch).

Reducing overcrowding.

Walls made out of small adobe blocks secured by mesh and plastered with compressed earth block (CEB) and stucco.

Securing resistance of the construction and adherence of plastering to avoid cracks and crevices that could host triatomines for extended periods of time.

Floors made out of compressed earth block (CEB).

Reducing holes in the floor where triatomines could hide.

Roofs structured with wood beams and covered by clay tiles and sheets of waterproofed asphalt.

Improving safety, reducing storage areas in ceilings that can host triatomines and improving ventilation.

Triple protection in windows (mesh, glass and wood) .

Facilitating cross-ventilation and reducing insects’ entrance.

149 Table 3: continued.

Wood doors protected by mesh screens.

Reducing circulation of domestic animals and insects.

Kitchen counter and improved wood stove.

Expanding safe areas for food management and reducing circulation of smoke inside the home.

Refurbishment of sanitary facilities. Improving management of human waste. For partial improvement Rationale Double protection in windows (mesh, and glass).

Facilitating cross-ventilation and reducing insects’ entrance.

Ceilings’ construction and roofs’ reparation.

Improving internal temperature and eliminating licks.

Plastering of holes and cracks. Eliminating spaces for triatomines’ hiding. Intervention in peridomestic areas (for reconstructed and improved homes)

Construction of fences. Interrupting circulation of domestic animals from the natural environment to domestic areas.

Construction of animals’ shelters. Interrupting circulation of domestic animals from the natural environment to domestic areas.

Construction of storage facilities. Reducing storage needs inside and around the homes.

Design of productive gardens. Increasing income generation opportunities.

Table 4. Health promotion actions developed during the implementation of HHHL. HHHL Health Promotion Actions

Pre-intervention • Introduction to the project • Identification of existing uses of the space • Socio-economic evaluation • Agreements on intervention’s plan • Introduction of health promotion practices through

education materials (calendars and checklists). Intervention • Relocation of families in temporary homes

• Promotion of safety measures during the construction • Mediation between partners and other actors involved in

the construction process • Facilitation of administrative processes at the local level • Monitoring of health promotion practices

Post-intervention

Facilitation of the moving process with particular attention to uses of storing areas and relocation of domestic animals

Follow up to implementation of triatomine protective practices in the new home

Generation of alternative uses of peridomestic areas.

150 Between 2013 and 2016, HHHL worked in the reconstruction and

refurbishment of six homes in the communities of Bellamaria (n=2), Chaquizhca (n=2),

and Guara (n=2). During this period (Pilot phase), HHHL collected information about

technical and social implications of implementing infrastructure interventions in this area

according to different purposes. The 2013’s intervention was carried out with only one

family and was focused on prototyping an anti-triatomine home, as well as designing

health promotion processes to facilitate appropriation and implementation of protective

measures in an entirely reconstructed home. The 2014’s intervention aimed to understand

how to introduce anti-triatomine measures in dwellings that did not require full

reconstruction; two homes were intervened in this period, including one previously built

by the National Ministry of Housing (MIDUVI, by its acronym in Spanish). Finally,

HHHL simultaneously built three homes (one in each community) between 2015 and

2016 in order to identify logistical demands, as well as behavioral and socio-economic

impacts of conducting differentiated interventions around home improvement for CD

prevention.

Figure 2. Exemplar of a local home previous intervention.

151

Figure 3. Exemplar of a home after HHHL intervention.

In order to conduct the physical intervention of the space, HHHL has worked

under a model of partnership that examines the contributions that different stakeholders

can make to the definition and realization of healthy environments as conceived in this

particular context. Family members, neighbors, local facilitators, academic communities,

and representatives of the local government are expected to maximize existing resources

by contributing in different capacities to the execution of plans individually conceived

according to partner families’ specific socio-economic conditions. Partner families in

each stage of intervention were selected according to a number of criteria, including

interest in reconstructing their homes, capacity to commit resources to the project, and

decay status of their dwellings.

The level of decay of local construction was established after a study conducted in

2012 by PUCE’s Architecture School (unpublished data). This study identified seven

criteria to determine urgency of infrastructure intervention in the homes of these three

communities, including constructive pathologies, thermal performance, use of culturally

acceptable materials, access to water and sanitation, access to natural sunlight,

ventilation, potential risks, and cost of the required intervention. Five categories were

152 established under these criteria. Category 1 includes homes that are safe enough to

implement anti-triatomine measures without a major intervention, at an approximate cost

of USD $49.23 per m2. Categories 2 and 3 indicate some form of refurbishment required

before implementing those measures, at an approximate cost of USD $70.30 per m2 in the

former and USD $120.63 in the later category. Finally, categories 4 and 5 are specific for

homes that demand full reconstruction in order to solve structural issues that endanger the

safety of inhabitant families beyond CD transmission. Intervention costs in this case can

go from USD $158.74 for category 4 and USD $218.89 for category 5.

HHHL uses the term ‘partner family’ to refer to families that have agreed to build

or improve their homes according to the model proposed by HHHL. This rhetorical

decision was made as an alternative to the term “beneficiary” traditionally used in

development interventions. Calling local families “partners” makes visible a relationship

in which involved actors make specific contributions during the intervention, including

economic resources, labor, knowledge, and social capital. HHHL has adopted the idea of

partnership as a means of addressing local needs through collaborative activities and

decision-making sensitive to local concerns and interests as proposed by Seddon, Billett,

and Clemans (2004).

Data collection and study population.

Ethnographic grounded theory was used as main methodological framework for

this research. Grounded theory (GT) is a systematic approach to data collection and

analysis interested in generating explanations of social realities based on emerging

information grounded in actual data rather than in theory (Glaser & Strauss, 1967; Strauss

& Corbin, 1998). Constructivist approaches to grounded theory see both data and analysis

153 as the product of experiences co-created by participants, researchers, and emerging

data (Atkinson et al., 2008). Since constructivism is focused on how and why participants

construct meanings in specific situations (Deetz, 1996b; Pearce, 1989), its extension to

grounded theory looks at how, when, and to what extent the studied experience is

embedded in larger social structures in order to explain and represent research findings

(Charmaz, 2006). Constructivist Grounded Theory (CGT) alludes to the open-ended

nature of social processes, the value of human agency in meaning making, and the

fundamental role played by language, interpretation, action and temporality in research

(Strauss & Corbin, 1998). When coupled with ethnographic methods of data collection,

GT receives the name of ethnographic grounded theory.

CGT was considered an appropriate method to depict local populations’ practices,

discursive constructions, and relational dynamics that could support or limit sustainability

of the HHHL model. Consequently, participants were selected from inhabitants of the

communities of Bellamaria, Chaquizhca, and Guara in southern Ecuador that have

directly or indirectly experienced interventions led by HHHL. The study population was

divided into three groups: partner families; non-partner families, and heads of household

across the community.

The first group (Group 1) included the six families that have specifically agreed to

partner with HHHL to build or improve their homes according to the above-described

model (Table 6). At least three members of each family were interviewed in three

different moments of field visits: the first one between June and July 2016; the second in

January of 2017; and the last between May and June 2017. Participant observation during

health promotion activities was also conducted. Members of the family older than 14

154 years old were also included. In this case, minors' assent and parents' informed

consent was requested.

Table 5. Interviewees in partner families by year and type of intervention (Group 1). Year Fam.

size Community Decay

level Phase and type of

intervention Interviewees

2013 9 Guara 5 Prototype – full reconstruction

Male (55), Female (56), Male (15)

2014 7 Chaquizhca 3 Refurbishment - Partial improvement

Female (98), Female (38), Female (16)

2014 4 Bellamaria 1 Refurbishment Partial improvement

Female (81), Male (48), Female (50)

2015 6 Bellamaria 5 Simultaneous construction - Full reconstruction

Male (55), Female (56), Male (17).

2015-2016

5 Guara 5 Simultaneous construction - Full reconstruction

Male (54), Female (42), Female (77)

2015-2016

5 Chaquizhca 5 Simultaneous construction - Full reconstruction

Male (44), Female (37), Female (17).

Considering the principle of maximum variation (Lindlof & Taylor, 2011; Tracy,

2013) , the second group included an equal number of families (6) that have not

implemented HHHL intervention. They were selected to closely match the decay

category and socio-economic conditions of HHHL partners. The purpose of this part of

the study was to observe families that have not applied the HHHL model in order to

depict their understanding of health in relation to home and compare it with the

information obtained from the previous group. Following the same methodology applied

with the partner families, members of these families were interv iewed at different points

155 in time to address the questions included in the interview guide. Interviews lasted no

more than one hour and were conducted in participants' homes. Considering that the

relationships established between the researcher and families included in this group was

not as extensive as with families included in group 1, only two members of these families

were interviewed during the same periods of data collection.

Table 6. Interviewees in non-partner families (Group 2). Case Total

Inhabitants Community Decay

level Interviewees

1 11 Bellamaria 5 Male (46), Female (42) 2 6 Bellamaria 3 Male (30), Female (28)

3 5 Chaquizhca 1 Male (48), Female (49) 4 7 Bellamaria 5 Male (33), Female (29) 5 4 Guara 5 Male (71), Female (60) 6 8 Chaquizhca 5 Male (40), Female (42)

The third group (Group 3) included heads of household of the communities at

large (n=102). Participants completed a facilitated paper-based forty-one (41) item

questionnaire that included questions about physical conditions of the dwelling, socio-

economic status of the family, and interest in home improvement in the near future (see

Appendix 2). This information was collected in order to create a larger picture of the

communities at large that could serve as reference for theory development in later stages

of analysis. Group 3 is cross-sectional and not exclusive of groups 1 and 2. Information

collected with this group will be further analyzed in a separate paper.

Data analysis.

The analytical processes conducted within this research were aimed at expanding

understanding of sustainability of CD control programs based on home improvement by

156 including contextualized data emerged from HHHL implementation. Therefore,

‘sustainability’ was used as sensitizing concept. Sensitizing concepts are interpretive

devices used as “points of departure for studying the empirical world while retaining the

openness for exploring it” (Charmaz, 2014, p. 30). In order to operationalize

sustainability as concept, I used the Pan American Health Organization (PAHO)

parameters for sustainable management of NTD in the region (Holveck et al., 2007): (i)

vector control; (ii) provision of water and sanitation; (iii) management of zoonotic

elements of the disease; and (iv) community participation. Interview protocols and

questionnaires were structured around these parameters.

More than 40 hours of interviews with partner and non-partner families, 150

pages of implementation reports, 102 questionnaires, as well as field notes taken during

informal conversations and participant observation, were analyzed in two phases of

coding (Saldana, 2016). The initial coding phase involved assigning codes to words or

larger segments of transcribed materials, whereas the second phase aimed to identify the

most significant codes in order to sort, synthesize, integrate, and organize them toward

theory construction (Charmaz, 2014). Since this research was conducted in Ecuador with

Spanish-speaking communities, initial coding schemes were constructed in Spanish using

a line-by-line approach.

For the phase of initial coding, I used process and in-vivo coding. Process coding

is an approach particularly associated to CGT, as it uses gerunds “to connote action in the

data, both simple observable activities as well as larger process” (Saldana, 2016, p. 111).

Process coding was particularly suitable for this research because it preserves the fluidity

157 of participants’ experience (Charmaz, 2014), which can lead to situated

reconstructions of HHHL as a process. Examples of process coding are provided in Table

7.

Table 7. Exemplar of process coding.

Original quote Translation Codes (Initial coding - Spanish)

Category (Focused coding – English)

“Ecuatorianos habíamos muchísimos en España y ahora pues tengo intenciones de devolverme. Pero por supuesto si me consiguen un contrato de trabajo. Sin contrato pues no me voy porque ya sé lo que es el sufrimiento.”

“There were many Ecuadorians in Spain and now I still have the intention of going back. But of course, only if they [his family] get me a job contract. I will not go without a contract because I already know how much you have to suffer.”

Migrando

Social dynamics

In vivo coding completed the actions described through process coding. In-vivo is

“a word or short phrase from the actual language found in the qualitative data record”

(Saldana, 2016, p. 105). While paying attention to the actual language used by research

participants, I intended to amplify their voices and presence in subsequent phases of data

collection and analysis. Examples of In-vivo coding are provided in Table 8.

158 Table 8. Exemplar of in-vivo coding.

Original quote Translation Codes Category

“Así cómo quedan estas [casas] son lindas, bien aseaditas. Pero cuando queda el adobe visto es guardadero de chinches y de cucarachas. Pero en estas terminadas así no se mete nada.”

“These homes end up being pretty, very clean. But when the adobe is exposed it stores chinches and cockroaches. In these homes, when finished up this way, nothing comes in.”

Aseadito

References – Intervened home

Guardadero de chinches

References – Non-intervened home

For the phase of focused coding, I used several forms of comparative methods

(Charmaz, 2014), including comparison between partner and non-partner families, as

well as temporality and types of interventions conducted by HHHL. The 382 codes

identified and organized in Nvivo 11.4 software (QSR International, 2016) during the

initial phase of coding, were synthesized into six main categories after memo writing:

infrastructure in intervened homes, infrastructure in non-intervened homes, social

structures, community relations, relationships with HHHL staff, and future perspectives.

These categories were then sorted during the phase of theoretical sampling and integrated

into four theoretical concepts (Charmaz, 2014; Timmermans & Tavory, 2007): health

impact, emotional impact, economic impact, and social impact.

In addition to this extensive process, analytical rigor was pursued through several

avenues. In first place, I used Charmaz (2014) criteria of quality for grounded theory

studies as permanent reference along this study: credibility, originality, resonance, and

usefulness. In doing so, I remained close to the data throughout the phases of coding,

meaning-making, and theorization. My intention has been to use the ontological tenants

159 of grounded theory to maximize participants’ involvement in the co-construction of

potential answers to the research questions proposed in this study.

This goal has also been pursued by applying a pragmatic orientation towards

CGT. Considering that the theoretical elaborations emerged from this research will

partially inform decision-making for implementation of the HHHL model at medium and

large scales, understanding the actual impact of HHHL in the lives of local families, as

well as identifying the resources and barriers currently existing in the studied

communities, constitute essential information.

Finally, I acknowledge that the design of this research has been undoubtedly

influenced by my involvement in HHHL’s conceptualization and implementation. The

main rationale driving the conception of this research has been to approach the

experience of partner and non-partner families with concepts and ideas relevant in their

own context in order to depict the complexity of their viewpoints in interaction with

external actors. Rather than a limitation, I consider that my previous involvement with

this project has equipped me with background knowledge useful to make methodological

decisions and contextualize collected data. Since I had interacted with most research

participants at some point during my work on this area, this involvement also facilitated

their decision to take part of this process under informed references. As a result, their

answers showed not only willingness to participate, but also openness to discuss sensitive

issues that can significantly contribute to the quality of the results hereafter presented.

Ethics.

IRB protocols approved by the Ethical Committee for Research on Human

Subjects at Ohio University (16-X-209) and the Research Ethical Committee at Pontifical

160 Catholic University from Ecuador (Oficio-CEISH-232-2016). Minors' assent and

parents' informed consent were requested when appropriate.

Results

This study aimed to approach the experiences of partner families in relation to the

construction and use of the homes promoted as anti-triatomine solution. I also intended to

identify factors that contribute to or limit sustainable control of Chagas disease under the

model proposed by HHHL. Consequently, the following section will expand on four

theoretical concepts emerged once the categories identified during the phase of focused

coding (infrastructure in intervened homes, infrastructure in non-intervened homes, social

structures, community relations, relationships with HHHL staff, and future perspectives).

were sorted and integrated into analytical memos during the phase of theoretical sampling

(Charmaz, 2014). These theoretical categories are: health impact, emotional impact,

economic impact, and social impact.

Health impact.

According to local families, HHHL’s model promotes conditions for better health

expressed in five areas: safety; vector control; water, hygiene, and sanitation; separation

from animals; and storage options.

Safety.

When people ask about my house, I always tell them that this model has three benefits: these homes are elegant, clean, and healthy. They are elegant because they are modern; clean because no animal comes in, not even bugs or cats; and healthy because they are natural (…) Clay tiles, wood, and adobe are natural materials, and with these larger windows, air circulates in and out all the time. Male, 54, Guara.

161 Community members referred to HHHL model as the “Golden House” (Casa

de Oro), in reference to difference between the structures proposed by HHHL and

traditional housing models existing in this area. They called them ‘luxurious’, ‘elegant’,

and ‘similar to a city house.’ The idea of luxury comes from elements of the new

construction that are not considered necessary in traditional homes. Even though most

homes in these communities are also made out of adobe (over 73% according to HLI

unpublished data), they follow a basic construction pattern in which adobe walls are

raised on top of stone foundations assembled above the ground, followed by dirt floors,

wooden beams, bamboo ceilings, and clay tile’ roofs. Under this model, walls and

foundations remain visible and exposed to environmental conditions throughout the

years. HHHL homes are also built with adobe blocks, but under most recent construction

techniques that reduce their size and bring more stability to the construction. In order to

slow down its natural decay and avoid cracks, adobe walls are covered with mesh and

plastered with cement. Underground foundations made out of concrete, cement columns,

and steel rods are fundamental for the general structure as they make it more solid and

seismic resistant.

Formative research conducted to formulate the HHHL model showed perceived

advantages of adobe constructions over other materials in this area (Nieto-Sanchez et al.,

2015). In general, adobe is considered fresher and more affordable than bricks because

local families can make it with materials freely available in the natural environment such

as manure, grass and water. Moreover, since most families have built their homes with

this material, there is a base of available and affordable expertise when needed. Built

around 40 years ago, the first constructions fully made out of this material were the local

162 schools. However, only for half of that time people have been using adobe for their

own homes. When compared with plastered bamboo (the most common construction

technique previously used by local families), adobe required the additional effort of

bringing water and dirt to the construction site, sometimes located so far away from the

sources that multiple trips by donkey or horse were needed. Slowly, knowledge spread

and adobe homes started to be perceived as safer and warmer, especially because of their

capacity to sustain tile roofs.

Even if safer than previous models, traditional adobe homes face important

structural problems. A decay analysis conducted to determine HHHL’s intervention

priorities established that around 52.4% of the homes in the communities require

investments of more than US$100 per square meter in order to solve structural issues

such as lack of foundations, broken walls, and unstable roofing structures. Many of these

problems do not come from the adobe itself, but from the quality of the dirt used to make

it. According to the interviewees, ‘good dirt’ can make durable adobe homes that can

resist more than 20 years of use without major issues. Bad dirt, instead, can easily molder

and substantially diminish the thickness and resistance of the walls over time. This

condition is also associated with the presence of cracks that host triatomines and other

insects. One of the interviewees expressed that even though traditional homes tend to

have a useful life of 10 to 12 years, he had to reconstruct his after only 8 years of

occupation because it had been built with muddy dirt. He was contacted by HHHL in

2013 when the prototype house was built, but he rejected the offer arguing that his house

would not resist all the time required to complete the project:

163 My house couldn't resist more. I was very concerned thinking that it would collapse during the next rainy season because the walls had profound cracks. I had no option but immediately building a new house. Male, 48, Chaquizhca. Similar sense of urgency moved partner families to accept the idea of

reconstructing their homes using the HHHL model. None of them mentioned particular

concerns regarding triatomines or disease presence; instead, safety of their families was

mentioned as a determinant factor to make this decision:

Our previous house was about to kill us. Everything was poorly done, poorly built… it was moldering. Female, 56, Bellamaria. Safety was mentioned by all family members when asked about contributions of

the new model to their health. Arguments about safety referred to resistance to tremors

derived from walls sustained with steel rods, foundations that can take all the weight of

the structure, and efficiency of the roof to prevent leaks. HHHL’s homes are also

perceived as of better quality because the adobes used to build them are mechanically

compressed and contain less residual materials, which makes them stronger and more

compact. Cement plastering is perceived as an efficient way of protecting the home from

decay.

Local families perceive damages in the roof as more serious than other structural

problems, particularly during the rainy season. Winter comes with constant rain, strong

winds, and mudslides that make more visible the structural problems of the homes. Since

most families place tiles on the roof without a system that secures them, they tend to

move easily with the wind or animals’ activity. Families wait until the first rains to locate

leaks produced by broken tiles. It is common having to deal with water, garbage and

guano falling from the roofs to their beds during this time of the year. This problem can

164 be so serious that families cannot stay or need to reorganize themselves inside the

house to find protection. Collecting water coming from the roof with black plastic bags

internally attached to the tiles, as well as moving beds to avoid the leaks, are other

common practices. If major issues emerge or worsen during this period, families have no

other alternative than living with them for as long as the rainy season lasts because adobe

constructions cannot be repaired with wet dirt. Rain can create additional problems when

adobe surfaces’ are washed off as a result of ongoing friction with water. As explained in

the following quote, partner families expressed satisfaction because the last rainy season

was particularly intense (because of El Niño phenomenon occurring at that time in Latin

America) and they did not experience any problem with leaks:

What I like the most about this new house is that we don't have to deal with rain during the night. The previous house had so many leaks that we had to squeeze one against the other in our beds in order to avoid them. Also, there is no dirt falling to our beds because water cannot bring it in anymore. Male,17, Bellamaria. Of the intervened homes, only the repaired ones present issues with leaks.

Structural problems were not fully corrected by HHHL’s intervention in these cases

because it was only intended at installing anti-triatomine measures and improving

internal comfort. As a result, leaks were not sealed and are creating additional problems

in wooden ceilings installed by the program.

Another important difference between reconstructed and improved homes is that

while the former are considered fresh, the later keep registering elevated temperatures in

the interior of the homes. Partner families of fully reconstructed homes coincided in that

tile roofs and adobe walls contribute to the amelioration of interior temperatures. Even

when compared with options that can speed up the construction process (such as bricks or

165 cement blocks), lower temperatures are considered an important advantage of adobe

construction:

I feel so confortable and happy with my house because it is really fresh. I can even sleep with the windows wide open: the mesh protects us and nothing else is necessary. Male, 55, Guara. This is not the situation for improved homes. In the case of the family whose

home was initially constructed by MIDUVI, the house is rarely used during daytime due

to the heat accumulated through the fiber-cement roof. Cooking and social activities are

conducted in an old abobe home remaining next to the improved construction, while the

renovated one is only used at night and mainly to sleep. The other refurbished home also

reports high temperatures, particularly during nighttime. In this case, the family only

closes the door screens at night and sleeps with doors and windows wide open.

Partner families reported only opening their window covers when they are at

home, even during the dry season. Glass protection is closed most of the time to prevent

dust from coming into the house. Having natural light is also reported as an advantage of

maintaining windows open at all times and only strong winds that threat with breaking

the glass protection would force them to close wood shutters.. HHHL models have been

designed considering cross ventilation between doors and windows in all rooms in order

to reduce the temperature of the house. However, families do not seem to be aware of this

measure and often stay in the house with one of the two windows or the door closed.

Non-partner families, on the other hand, reported keeping doors and windows

closed at all times to reduce presence of animals and dust:

We close everything because it gets cold inside. Sometimes mosquitoes and chinchorros [local name for triatomines] want to come in, so we prefer to close them around six or seven. Female, 41, Chaquizhca.

166 Vector control.

Both partner and non-partner families identified presence of triatomines in their

communities. Participants mentioned that it is usual to see them flying around light bulbs:

I don't think they live in my house, but I’ve seen them climbing the wall. I pick and kill them, but they don’t have any blood inside. Female, 22, Guara Only one of the partner families has reported presence of a triatomines after the

intervention. The first time they collected them and reported to the HHHL staff; the next

time they just crushed it:

My kids found a chinchorro in one of the rooms but they crushed it right away. It did not have any blood inside, so it hadn’t eaten yet. Male, 55, Guara.

Statements like this demonstrate certain level of knowledge about Chagas disease

and its transmission cycle. This knowledge can be associated with previous campaigns

conducted by HLI with adults and kids. As explained by one of the partners:

Our homes were built because of that disease called Chagas, the chinchorro’s disease. Before the program [HHHL] came, we didn’t know anything about it. We knew that there were a lot of ‘chinches’ in the countryside and that they used to come to the houses when the lights were on. In the old times, we used to cook only with firewood and sometimes chinches came to the homes in the shell of a tree called faique. Male, 55, Guara. In spite of this familiarity, people identify insects as sources of disease. Partner

families mentioned absence of insects in relation to health improvement through the

HHHL homes. As described by one participant,

We still have some bugs coming from time to time, but you cannot compare with the previous house. We can rest assured at home because there are not even mosquitoes around. In the old house, they didn't let us sleep during the rainy season. If there were no bugs, we had rats peeing on the beds or falling from the roof. We don't have any of that anymore. Male, 54, Guara. When asked about the health of the family in traditional homes, non-partner

families expressed several concerns. The head of household of one of them mentioned

167 that her home could only partially protect his health because of the multiple problems

derived from the structure of the home:

I can protect my family from the cold and the wind with cloth rags or bed sheets. But I cannot do anything about diseases that come from flies, mosquitoes or chinchorros. They come inside because there are many cracks and we cannot cover them all. Even if I cover the cracks in the walls, they will come through the roof because we have only tiles, not a ceiling. So, I cannot protect my family from them, bugs will always find a way to come in. Male, 46, Bellamaria. Members of the partner families described similar issues in regard to their

previous homes:

There were bugs at all times: cundiles (cattle flees), centipedes, fleas... Male, 17, Bellamaria At some point in time we had to sleep under a mosquito net because bugs used to bite the kids very badly. Our ceiling was made out of bad bamboo, so bugs could easily live in there. Female, 56, Bellamaria When I had to stay late to do my homework, there were little moths flying and falling around me. They bothered me because they stained my notebooks. It is not like that anymore here. Female, 17, Chaquizhca. Some plagues are more difficult to control. Seasonal plagues such as churumbos

(locust) invariably come to the homes during the rainy season. These insects are noisy

and smell bad after dying. Since light bulbs attract them, family members remain in

darkness for longer periods of time while eating or using the social areas of the house.

Later in the night, they turn on the lights of the porch to ensure that churumbos remain

outside and do not try to access the rooms. Additionally, one of the partner families

decided to block minor spaces under the door with rags and toilet paper to avoid them

from coming to the house. Partner families also pointed out that cockroaches are

frequent; their capacity to infest the house via pipes, sacks and cardboard boxes make

them even more difficult to control.

168 The use of mesh is one of the measures promoted by HHHL to prevent

triatomines’ entry to the homes. This element is not common in this region, not even in

more affluent areas of the province. HHHL has tested different materials and models,

most of them showing quality problems. Participants identified strong winds, quality of

construction materials, kids introducing objects or pushing the door from the mesh,

installation issues, and faulty design as the main causes for the openings found in the

mesh in all homes. Spaces that have more circulation of people, particularly kitchens,

showed even more problems.

Besides these quality issues, partner families showed acceptance of screens in

windows and doors. Keeping and repairing them when broken (although not

immediately), are some of the practices that illustrate this acceptance. Similarly, multiple

bugs were found outside the mesh in windows of kitchens and rooms during the visits

conducted for this research. Families reported sleeping only with the mesh protection

most of the year.

With the purpose of reducing openings for bugs’ circulation, HHHL installed

small weights to keep doors’ screens closed. This solution has served this purpose in

bedrooms that are not used very often during the day, but not in areas of more circulation

like the kitchen, especially when all members of the family or guests are present. In those

cases, families install objects to lock the doors open in order to facilitate circulation of

people.

Besides bugs, non-partner families reported presence of reptiles and scorpions in

accumulations of debris, as well as sacks with corn and cardboard boxes with clothes.

Two of the non-partner families also reported permanent use of mosquito nets as

169 protective measures regardless of the season. Concerns about insects are explained in

the following quote:

We are exposed to rats, chinchorros, leaks, humidity, dirtiness coming from the roof… there are many risks here in the countryside. There are also mosquitoes that bite us often, and some people get sick with paludism [Malaria]. If we see insects around, we just turn the light on and kill them. Male, 71, Guara. Consequently, fumigation remains the most common control measure for plagues’

control in the area. We observed that partner families continue relying on this traditional

control method in combination with the measures proposed by the model. Products

commonly used in this practice include Nuvan (DDVP), Malation (malaoxon), Bala

(chlorpyrifos and cipermetrina), Pix (cipermetrina), and Puñete (chlorpyrifos), and

sometimes plants that are considered natural insecticides such as porotillo (Fallopia

convolvulus), moshquera (Croton sp.), florblanca (Buddleja utilis, also known as mon-

teramirez) and chamana (Dodonaea viscosa). The most common times for fumigation are

the beginning of the rainy season (January or February), and October, the preferred time

for hens’ incubation. Interviewees reported fumigating in the morning, leaving the house,

and coming back when they calculate that smell has evaporated, after four or six hous.

Interviewees mentioned that they fumigate to control fleas, chinchorros, moths, ants,

cockroaches, cattle fleas, and yuyes (Paederus irritans). People also referred often to the

fumigation conducted by HLI during entomological visits in 2011 and 2012 with

delthametrine (Bayer) as particularly effective. According to them, it was highly effective

and perceived as non-toxic:

The remedy used by the Universities doesn't smell. It is not stinky, like the ones we use. And it kills all sorts of bugs. That winter [after fumigation] we didn't have anything, not even mosquitoes. Male, 30, Bellamaria.

170 Flies and mosquitos are so common that they are usually ignored. Their

presence is also associated with accumulations of fresh produce and food kept in the

kitchen. Since freezers are rare in this area, families use traditional methods to keep meat

fresh and useful for consumption, including drying it under the sun and conserving it in

covered pots in the fresh areas of the house. Flies are usually around reserved meat, even

in spaces protected by mesh. None of the interviewees considered them dangerous or

annoying.

Water, hygiene, and sanitation.

In this region, water is treasured as the most valuable resource for agriculture and

animals rising. All the interviewees declared having regular access to water at their

homes obtained through recently constructed water systems. HLI has had an active

involvement in securing access to drinking water systems for the intervened

communities. The project concluded the distribution phase of a water system in Guara in

partnership with Fundación Uriel; built a new system for Chaquizhca in partnership with

the Spanish NGO Ayuda en Accion; and improved the water collection and distribution

system in Bellamaria in partnership with Rotary Club International. Both partner and

non-partner families expressed appreciation for having this resource at hand to cover their

cooking, hygiene, and animals’ feeding needs at home. These three systems cover now

approximately 70 families in these three communities.

The experience of lacking water at home and the need to secure access to it during

the dry season has reinforced the practice of storing rainwater and water coming from the

local system in buckets and laundry tanks. This situation is especially visible in

Bellamaria, where intermittent access to water has been a historical problem with

171 devastating effects on productive activities. Community members have fresh

memories of transporting water using donkeys to their homes, as well as having to

depend exclusively on water coming from the Catamayo River up to 2016. Even though

this community is the closest to the river, they have had to experience how the increased

current of the river during the rainy season has sedimented its bed to the extent that plots

are now located at a higher altitude. For this reason, if families want to make use of water

from the river for irrigation purposes, they have to use motor pumps capable to bring

water from the river to their plots. Since this very expensive, local families prefer to

collect as much water as possible during the rainy season and keep it in their homes or

plots.

Community members that do not have access to the general water systems argued

lack of money or manpower to secure their access (as community projects, water systems

demand regular work during the construction phase or payment for usage rights from all

the beneficiaries). In these cases, community members cover their needs for water by

bringing it through hoses or carrying it in buckets from untreated sources near their

homes.

Sanitary facilities in this region are generally composed by a toilet that is filled

with water coming from a tank in the house. Disposals are conducted to a septic tank

located in the peridomestic area. The availability of water in families’ plots has facilitated

the use of latrines; therefore, most of HHHL interventions in this aspect have been

focused on bringing water to latrines and showers through hoses or pipes. All partner

families reported regular use of these facilities even before HHHL’s intervention in their

homes.

172 Partner families stated that cleaning practices have not radically changed with

the new home structure. The main difference they can perceive is that their work in this

area is more visible. Activities such as sweeping and mopping are conducted on regular

basis, usually by the mother or younger members of the family. Most families use

conventional brooms to sweep the home on daily basis, and brooms made out of bushes

to sweep the peridomestic area one or two times a week. Local bushes (mushquera,

florblanca, chamana) are known for having acidic properties that make of them effective

natural insecticides and particularly useful to control flees. Although partner families are

hesitant to use them against the cement floor due to the green stain they produce, they are

widely used in the communities. Throwing buckets of water in the floor every couple of

weeks, as well as sweeping walls and intersections in the roof to eliminate spider nets, are

complementary cleaning practices in the new homes.

Even when it takes more time than it used to, partner families think that HHHL

homes are easier to clean. Some of them acknowledge that they feel more motivated to

clean now than they were in the previous house:

I remember that my previous house was quite messy because we used to keep animals inside. I remember that my chickens were everywhere and since my kitchen was made out of bahareque [intertwined canes put together with mud], it did not look so clean (…) Cleaning and organizing takes more of my time now, but I feel more comfortable. Unlike myself, I want my kids to grow in a clean place. Female, 38, Chaquizhca. The whole purpose [of HHHL] is leaving healthier, living far away from rats, bugs, chinches… in the homes we used to have there were a lot of rats, cats… If you were not paying attention, you could get cat’s pee coming from the roof. It was terribly dirty. Male, 54, Guara. Non-partner families can also appreciate cleanliness as an advantage: Those homes have the advantage of looking clean and organized. When you have something like that, you feel like having flowers, keeping it pretty, clean it. I think

173 they are easier to clean because of the cement floor and the ceramic. In houses like mine (traditional) you can sweep and sweep, but there is no way that you can make them look clean. Female, 60, Guara, Families report that a more thorough cleaning of the house is part of the

agreement reached with the program. In some cases, I observed that partner families

apologized with HHHL local facilitator because they had no time to clean and organize

their homes before his visit. Regular cleaning, as well as keeping animals and insects

away from the house, was referred by partner families as effective ways of keeping the

house in good conditions. However, this activity demands ongoing work from local

families. Due to the dry nature of the terrain, there is ongoing circulation of dust that

covers belongings and food inside the home. Even sweeping the dirt floors produces

additional dust that families have to contain by throwing water on them. Other activities

characteristic of rural life, such as threshing corn or peanuts, produce additional detritus

that remain in the surroundings of the homes to be reused as food for domestic animals or

fertilizers.

Cleaning becomes more essential as more productive activities are conducted at

home. For example, according to traditional knowledge, guinea pigs grow better in places

where they can stay warm in contact with firewood stoves. They are treated with special

care because they are considered important nutrition sources, as well as a delicacy for

special occasions. Families usually throw grass and leftovers to the kitchen floor where

guinea pigs can feed themselves. Although practical because they do not demand a

separate structure, this practice requires ongoing removal of feces from the kitchen to

avoid bad smells and food contamination.

174 This practice has slightly changed for partner families. Only two of them have

kept guinea pigs after the intervention, but in both cases, they have created alternative

structures outside the homes where they can replicate traditional practices. Made out of

rags and mesh, these structures provide an intermediate solution between the demands of

the program and families’ priorities. Challenges associated with cleaning of these areas

remain. Similarly, families that work on pig’s raising need to keep important amounts of

leftovers to feed them. Collecting and keeping this food in the kitchen creates additional

challenge such as dealing with flies, cockroaches and domestic animals.

Generational conflicts emerge around some of the practices recommended by

HHHL. For example, the program insists on de-cluttering the house by making a

conscious selection of materials that the family wants to keep before moving in.

However, some family members, especially elders, are more prone to keep artifacts they

perceive as valuable or potentially useful in the future, including plastic bottles, bags,

wrapping paper, old posters and calendars. This conflict is illustrated in the following

quote:

I tell her [grandmother] not to stack sacks here. If she finds a pretty piece of cardboard, she will take it to her room. Then, when I come to clean, I try to throw it away, but she says, ‘This is my room, I can keep it here.’ Then I tell her that even if this is her room, she has to keep it clean. ‘We are not going to live as we used to. We will live better.’ Sometimes I get mad at her and we argue because my kids also sleep in her room. Female, 38, Chaquizhca. This practice could be associated with the unavailability of resources at hand to

solve practical problems in this area. Both the isolation of the communities, as well as the

lack of resources at hand, have created some sense of anticipation to unforeseen needs

that often calls for storing apparently unnecessary materials. I observed, for example, the

175 wool of an old mattress being washed, dried and stored in bags for families to make

another mattress when needed, water that comes from the shower being reused to irrigate

gardens at home, organic residuals being used to feed domestic animals, and animal feces

collected in sacks to be used as fertilizers.

Following this rationale, unlike the prototype home that was demolished using

machinery, the most recent homes intervened by HHHL were manually disassembled.

Families expressed their appreciation for this practice, not only because it reduced the

emotional impact of that moment, but also because it allowed them to reserve an

important number of pieces from the previous house that they could reuse in the future.

Wood and tiles were used in pigs, guinea pigs and goats shelters; old doors were given

away to other neighbors; and some wood beams were used in the construction of fences.

Finally, it is important to mention that these three communities show important

issues in relation to residuals’ management. Most community members throw residuals to

the open environment. As most families in this area, partner families burn plastic, paper

and hygiene products within the confines of the peridomestic zone with a frequency

varying from two times a week to once every two weeks. Even more serious is the use of

septic tanks even after surpassing their capacity. When they reach that point, community

members keep using them until another sort of problem occurs (filtration to another

family’s land, for example). This is problematic, as these tanks are located within the

confines of the home and can potentially become sources of infections and disease.

176 Separation from animals.

The practice of separating animal shelters from the family’s space is constantly

reinforced through HHHL’s health promotion activities. As explained by one of the

partners:

One thing the program wanted us to do was living separated from chickens, preventing them from nesting in our rooms. We decided to send animals to sleep far away from the homes and now they are in their own place. Male, 44, Chaquizcha. Creating a physical separation between animals and families is a significant

change in families’ routines. Only one of them had a proper fence before the intervention.

In some cases, cohabitation was so close that pigs were sleeping in bedrooms and internal

areas of the house. However, this change has been gradual and not free of conflict.

Different perspectives about the best way to raise animals have emerged among family

members, especially with elders who are used to traditional ways of animals’ raising.

These practices include keeping chickens and guinea pigs in areas of the house where

they can stay warm and ‘grow better,’ such as the kitchen and under the beds. Insistence

of the project about this practice has generated clashes than in some cases have derived

into establishing specific practices for animals’ keeping according to who owns them.

One of the female partners explained:

We have struggled a lot trying to convince my grandmother of sending animals away. She wants chicken to keep nesting in her bed. I have to be strong with her and always end up arguing because if I don't want her to keep animals inside, even less so will I let them nest here. I gave up at the end and let her feed her chickens in the porch. She is old, almost 99, you know? She cannot walk much, so I agreed. I feed my chicken outside the fence and she feeds hers here, in front of the house. Female, 38, Chaquizhca.

177 HHHL’s interventions have secured the construction of a fence that could

function as permanent separation between animals and families. However, this separation

is highly dynamic, as animals and produce circulate from and to the families’ plots on

regular basis. For example, domestic animals look for a covered shelter more often

during the rainy season; therefore, it is more common to see them around the porch and

other roofed areas of the house during this period. It also takes more effort from family

members to feed their chickens far away from the home when it is raining. I observed

more frequent presence of chicken in peridomestic areas inside the fence during the rainy

season than during the summer months. As explained by one of the heads of household,

Since we are by ourselves here, sometimes we get lazy to walk to the chicken coops to feed our chicken. We might feed them here [close to the house] but always send them back to their place afterwards. Male, 55, Guara. None of the partner families reported presence of animals inside the house.

However, we observed a hen nesting on the top of a wall in one of the intervened homes.

When we asked for the reasons to keep it there, the head of household argued that the hen

had been brought in by her husband because it can produce good fighting cocks.

Regardless of his wife’s complains, the hen was considered valuable and he was not

willing the expose it to other animals and thieves. According to the interviewee, her

husband was responsible for setting a cusha for the hen in the room and placing an egg

on it to motivate the chicken to incubate in that place. Chickens came after the first one

and they were also found on top of undone beds.

Similarly, cats and dogs are kept in the porch because they are used for safety

purposes. Nearly every house, including partner families, owns at least one cat that is

used to control mice and rats. Rats usually come from the natural environment to the

178 homes, especially during the rainy season. Two interviewees in the partner homes

reported recent presence of mice, in both cases controlled through cats and plastic bottles

installed in electricity cables that make rats fall when trying to reach the homes.

According to the interviewees, cats sleep on the porch but never in the rooms or kitchen.

A similar situation occurs with dogs, used as protection against strangers. They usually

bark when somebody is approaching the house, and can also run after foxes (locally

known as chucurillos) when they approach to attack the chickens.

Even though there is more tolerance about keeping animals such as dogs, cats and

chickens in peridomestic areas, community members value the benefits of having a fence

as an efficient mechanism to separate animals —particularly pigs and goats— from

activities conducted in the house. Families have identified practical advantages derived

from this practice as explained in the following quotes:

I’m better now because animals are not around and I can keep the water tank that they [HHHL] built for us. It has been really helpful (…) We didn't try to have a garden before because the patio was open and there were animals eating the seeds and the sprouting plants every time I tried. Female, 37, Chaquizhca Partners also mentioned that it is easier to clean the patio now that animals are not

around because they do not have to deal with their feces and leftovers. Besides the

construction of fences, families have adopted the practice of keeping animals away by

feeding them and locating their food far from the main structure of the house:

Animals used to come to the house because I had a bucket full of leftovers for the pigs and they had learned to come here for food. It is not like that anymore because now we bring the leftovers up to the place where we keep the pigs. They do not come to the house at all. That is better because they used to defecate here, next to us. It is much better now because they eat, stay and defecate in their own place. Male, 55, Guara.

179 Despite these benefits, the economic situation of the families impacts their

decisions about the best way to keep their animals, as explained in the following quote:

Our pigs stay free most of the time because they can feed themselves with the grass they find around. They grow better this way because we do not have the money to buy enough food or to build a proper pigsty, so our pigs only eat leftovers from what we grow and whatever they find around. If they depend on the food we can provide for them when they are locked in their corrals, they will be thin and we won’t be able to sell them. Female, 56, Guara. Protecting their animals also influences families’ rationales for bringing them into

the house. Goats, for example, are usually kept in basic structures outside the

peridomestic area (most frequently, a zinc roof sustained on wood planks that provides

them with some shade). Families collect goats at the end of the day to keep them in a

corral and leave them free during the say so they can feed with grass. However, when a

goat has just given birth, mother and calf are kept for some time inside the fence in order

to protect the newborns from other animals.

Fences have also faced quality issues. Some of them were built with fresh wood,

which impeded the wire to stick properly. In other cases, animals have eaten part of it.

Keeping fences in good shape implies an important expense for the families, since they

need generous amounts of wire to create multiple rows around the property that can

effectively prevent animals from coming inside. Even though openings in most fences

observed for this research are still minor, they can become more serious if families do not

repair them promptly.

Storage.

The presence of elements from the natural environment is also stimulated by

accumulation of materials inside the dwellings. Local homes have to fulfill multiple

180 storage needs, including crops, daily food, tools, firewood, construction materials

(that are usually collected to be reutilized), clothes, and kitchen utensils. However, it is

not common to have storage units separated from the home; instead, families adapt free

spaces inside and outside to store what is needed in different times of the year.

Using the space under beds, as well as the corners between roof and walls in

rooms and kitchens to store valuables indistinctively of their use, is a well-established

practice. Considering that the regular size of local homes is about 65 m2 and have to host

families of four to ten members in average, available space is very limited. Some families

have built small rooms made out of wood boards attached to the house or basic covered

huts in their plots to store agriculture tools. These spaces are also used to store fertilizers

and crops when the space in the house is not sufficient.

One of the interviewees in the non-partner families explained that he usually

builds a troje (elevated box closed with mesh and wood) in his bedroom to store his

produce and keep it protected from domestic animals during the harvest season. When the

troje is full, he throws the crops on the floor on top of plastic bags secured with wood

sticks that have been previously treated with insecticide. These plastic bags remain in the

floor for as long as there are crops to be sold or consumed by the family. Other storage

alternatives include leaving produce with family or neighbors, as well as locating cane

and firewood in shaded areas near the home (usually attached to walls and windows).

HHHL has included different forms of storage units in the model. The size and

specific devise used in each case depends on the specific needs and resources available in

each family. For example, an external troje and internal shelves were built for a family of

a single mom with no regular agricultural production, whereas an external storage room

181 with more capacity was built for families expecting larger production during the

harvest season. Plastic boxes and deep cans have also been provided to facilitate

organization of food and clothes.

Even though some storage units built by the project present structural problems,

all of them are consistently used. In general, these storage solutions seem to be

insufficient for the needs of local families.

This problem becomes even more serious during the rainy season when crops are

collected and stored temporally at home. During this time of the year partner families use

their porch or the back wall of their home to place valuables, specially crops, tools,

insecticides, and fertilizers. During the observation periods conducted for this research, I

saw one of the families using available space in the rooms and kitchen to store corn; the

other five families had maintained the recommendation of avoiding this practice, even if

it means pilling up their belongings in corners around the house. In this sense, trusses

have demonstrated to be an efficient measure to address the problem of storing spaces in

between ceilings and roofs that can host triatomines and other insects. They remain free

and secure in all the homes, with the only exception of the first communion dress of a girl

in a partner family whose mom wanted to keep it safe and separated from other clothes.

An additional need in terms of storage space is firewood. As in most rural areas,

kitchens constitute one of the most important spaces in the house. Its use is determined

both by the diet and resources available for the household. Local families combine

cooking with gas and firewood on daily basis. Firewood is preferred for the taste it gives

to food, but also because certain products (such as beans and corn) require more cooking

time, which is makes use of gas inefficient. In general, gas is perceived as a more

182 expensive resource, not only because they have to pay for it, but also because they

need to make important efforts to bring gas tanks from Cariamanga, the closest city (7 to

25 km. away from the communities), to their homes. These costs include transportation to

and from the city, paying for the tank and bringing it by donkey or other mediums to their

homes. Regardless, it is usually available to cook food that can be ready very quickly,

particularly at breakfast time.

Considering these two factors, HHHL decided to incorporate an improved

firewood kitchen to the model. This is considered a healthier cooking alternative because

the stove counts with a chimney that takes the smoke out of the house in less time than

regular ones, as well as small burners specifically adjusted to the size of the pots used by

the families. This reduces the amount of firewood and time required to cover families’

cooking needs. Even though this type of kitchen has been considered highly efficient for

some families, it has also shown important flaws. Most of the families faced problems

during the first experiences of use, including height (initial models were too tall for the

average stature of people in this area), overheating of the chimney, and even more

production of smoke when the burners are not exactly the same size of the pots used for

cooking. As a result, most partner families have been using firewood stoves as tables or

storage areas in the kitchen.

Four out of the six partner families have built a traditional firewood burner in the

peridomicile; two of them have chosen it as their permanent cooking area. Reasons

argued for this decision include fear of a fire derived from high temperatures of the

chimney pipe in contact with the wood ceiling, as well as smoke accumulation derived

from cluttering of the chimney after some years of consistent use. Partner families also

183 showed concerns for the aesthetics of the house after soot is accumulated in the walls

of the kitchen and surrounding areas. It is important to point out that other homes

reconstructed without HHHL’s support have adopted similar solutions (attaching a

traditional kitchen to the reconstructed home); this way, families can secure a space to

cook with firewood without altering the appearance of the new construction. However,

we did not observe accumulation of firewood in any of the reconstructed homes; instead,

small amounts were kept in all of them for daily purposes.

In general, the ‘health’ category showed concrete configurations of risk

constructed around ongoing interactions with the natural environment. Families described

practices carried out to counter potential risks in relation to safety, vector control, water

and hygiene, separation from animals, and storing both in previous and new homes.

Perceptions of risk portrayed in this category showed areas that are conferred the status of

life protective, and therefore, associated with health status.

Emotional impact.

Additionally to this perceived impact over health issues, families expressed

emotional impacts experienced along the processes of decision-making, construction and

occupation of HHHL homes. Ongoing comparison between previous or traditional homes

and the ones built through their partnership with HHHL were commonly established in

quotes included in this theoretical category.

The adjective most commonly used to describe the intervened homes, both by

partner and non-partner families, was ‘beautiful.’ According to research participants,

what makes HHHL homes beautiful is that ‘adobe is not exposed’; ‘they look clean’;

‘they are much better than previous homes’; ‘they are well done’; ‘it is a pleasure coming

184 to visit’; ‘they have more space and everything looks more organized’; and ‘it is easy

to keep them clean’, among others.

References to traditional homes in partner families established comparisons

between past and present conditions. When asked about memories of their previous

homes, partner families mentioned the general condition of decay experienced before the

construction:

What I recall about the previous house is that I don't want that to happen to me again. I have always had family members that came to visit us and I used to feel ashamed for the house I was living in. I didn’t feel comfortable. Male, 55, Bellamaria. Similarly, they referred to the space available for their daily chores and the

substantial improvement it represents for the family:

I do not miss anything from my previous house. I think of it, but not in the sense that I would like to go back because my house was really destroyed. I love my house, the one that the project built for me. Female, 56, Guara. Sometimes I think of our house with some sadness because we lived there for many years. So many years living there and suddenly the entire house is on the floor! Female, 37, Chaquizhca. When asked about the most significant changes experienced in the new homes,

families’ narratives included practical factors such as more capacity to receive visitors

and ease to conduct activities at home, to more comprehensive ideas about the impact of

the home on families’ lives. The following quotes explain this wide range of factors:

What has changed the most is that we don't have to live surrounded by dirt and dust now. Of course, we still get some, but you cannot even compare it with the past. We don't have to spend the night dealing with water anymore, we don't have to sleep all together to avoid the leaks and the there is no dust falling from the walls all the time. We sleep without worries now (…) Additionally, when our extended family comes to visit, we have space for them. The house is cleaner, more organized… my old house was not nice. Male, 17, Bellamaria.

185 In my opinion, what have changed the most are the bedrooms. We have more space now and I feel very happy because I can sleep only with my female daughters now. The house is more organized. And I feel more comfortable because I have the bathroom right here… we don't have to go in the open air anymore. Female, 38, Chaquizhca. For me, this is a new way of living. Our previous house was full of cracks, and bugs and animals could come very easily, but they don't come here anymore, they are always outside (…) I like living this way because animals can transmit diseases to us, but since they are far away, we have a better way of living now. Female, 17, Chaquizhca. As illustrated in the following quote, partners’ comments connect factors such as

hygiene, absence of animals, and access to water and sanitation as promoted in the health

promotion aspect of the program, with immediate changes emerged from modifications in

the structure of the house itself:

Everything has changed in our own health because there is a little bit of control, more cleanliness. We have water directly in the kitchen, we don't have to go to the river to bring it in tanks. We can just open the faucet and there it is (…) Considering the extreme conditions we have faced, this is progress. It is pure happiness when I come from my plot and I can just sit anywhere without the concern of animals coming to bother me (…) My new granddaughter will not have to grow up with animals’ feces everywhere, unlike my kids that had to step on that dirtiness (…) I think I am good, things have improved, thanks God. Male, 55, Bellamaria. Elders living with three of the partner families were more skeptical about the

project and expressed resistance to change their living environments. In their opinion, the

new constructions can affect their comfort and health in different ways: a skylight

installed in one of the refurbished homes as a solution for the lack of windows was

regarded as uncomfortable to sleep at night, whereas cement floors were considered

slippery and prone to falls. The mother of one of the partners used to live with his son

when the construction project started; once finished, she decided to go back to an old

186 adobe home that had been abandoned for some years. When asked about her decision,

she replied:

This is firm-land and my cane does not slip when I walk. Here I have all what I need: my mat, my little teddy bear and a portrait of Jesus’ Sacred Heart. I do not like mattresses because they make you warm at night, so I prefer this way. I do not want to go anywhere and I prefer to finish my days here. If you can help me plastering my room with cement, fine, but I’m not doing anything to the floor. I already know the holes of this dirt floor and do not want anything else. Female, 77, Guara. An important element when families evaluate the construction process is their

understanding of the homes as a joint project. Partner families acknowledge having

received contributions from HHHL and also from the national government through

MIDUVI to accomplish the kind of improvements obtained with this construction. At the

same time, families refer to the construction as a result of their own efforts. Words such

as ‘endurar’ (be strong), sacrificar (sacrifice), luchar (struggle) and sufrir (suffering) are

common in partner statements:

I never thought I could have a house like this, but I got it through my own efforts. Of course, I had to work very hard, put my hands at work, but I cannot compare the kind of house I have now with what I had before. This was built with all the strength I put into it. Male, 55, Bellamaria. When the engineer [local facilitator] came for the second time to talk with us, I saw that my house was in very bad shape and I said: we need to be strong, make an effort and try to do it, even if we need to suffer for it. Female, 37, Chaquizhca. I made as many sacrifices as I was capable of. Even if I was sick, I kept on working. Female, 56, Guara. This notion of effort is interpreted as an element directly related with ownership

over the final product:

When people ask to me what I had to contribute for the project, I always tell them that I have to give all my work for the entire summer. Some people really dislike that idea. But I tell them that for anything you want, you need to work. If there is

187 someone who is offering to help you, that is even better and you have to put even more effort into it. Nobody will give you everything for free; at the bare minimum, you need to work hard so you can appreciate what you have done. You have to make an effort, know that you have sweat for what you have, so you can also take care of it. Male, 55, Guara. The emotional impacts previously described showed an experience of wellbeing

beyond the material aspects of the intervention. Systemic perspectives are operated when

families link infrastructure-related changes with more overarching concepts such as ‘life

style’, ‘progress’, and ‘happiness’. This sense of wellbeing is also stated as positive

evaluations of the future associated with a significant change in life conditions for

younger members of the family if compared with the old times. A renovated sense of

ownership and self-esteem can also be observed in this category.

Economic impact.

Families used different forms of funding to sustain their involvement with the

project. These forms included acquiring loans, getting support from family and friends,

selling animals and produce, and investing their labor exclusively in their work with the

project for as long as needed. Given the constrained economic situation experienced by

local families, finding the necessary resources to conduct a project of this nature

generates important economic demands for partner families.

Even though most of the partner families had had experience with credits —

either with financial institutions (banks or cooperatives), government offices, and/or

family and friends— only two of them acquired a formal loan to cover their part of the

agreement. In some cases, the existence of previous loans deterred families from

acquiring new financial commitments:

188 The first time you approached us with the project we were still paying the debt we acquired to buy our house 13 years ago. On top of that, we had to take another loan to pay the expenses of our kids when they started high school. We have been living like that for years: asking for more loans to pay previous debts. We need to work very hard to be able to do this. If we have animals, we can sell them to be able to pay both loans when the installments coincide and we don't have the money. We keep doing that to be on time with the installments because otherwise the bank will not help us again. Female, 37, Chaquizchca. In other cases, older children of the family —normally migrants established in

larger Ecuadorian cities or abroad—provided the resources to cover these installments.

Involvement of older members of the family also expressed as actual work in the

construction and remittances focused on covering payments for the construction crew or

food for the family. Decision-making processes about assuming the costs of the

intervention are illustrated in the following quote:

When the project first came with the offer of building the house I said to myself ‘I do not have that money.’ But I kept thinking and then I said ‘I need to find a way, what can I do?’ Immediately after I decided to ask for a loan to a cooperative in town and then called my sons in Quito. They said, ‘Yes Dad, we can help you to pay’, and they are the ones who have helped me so far. My wife and I have put the rest of the work and that way it was not so difficult. Male, 55, Guara. Loans requested to cover expenses associated with the project have ranged from

US$500 to US$2,000, and in all cases, have been covered within 18 months after the

construction. Illustrating the relationship between financial institutions and economic

performance in their context, one partner stated:

We had to work a lot to get this house complete, but you have to work a lot or get loans for anything you want in life, right? Do you want to have something? You need to ask for a loan, get a debt; otherwise, things will not just come to you. Male, 54, Guara

189 Families’ dependence on agriculture is reinforced by the lack of paid jobs in

the region. This issue emerged constantly in the answers regarding family’s economy for

all interviewees. As explained by one of the partners,

Here we don't have a factory or a boss that can hire us for a monthly salary. It is impossible to think that we will get a job for one or two months here. Male, 55, Bellamaria. Under these circumstances, community members are forced to migrate constantly

to places with more job opportunities, usually gold mines and shrimp production

companies located in provinces nearby. Some of the participants also complained about

how hard it was for them to find people that could work with them over the entire

construction process. Other community members are the most readily available resource

at hand but they can only work when they are not attending their own plots. This is

particularly true during the rainy season, when they need to count on the labor of

neighbors to be able to collect products as fast as possible before they get rotten.

Finally, the use that people make of animals for economic purposes is very similar

in partner and non-partner families. While chickens and goats are used as regular meals

in the household or as meals to be provided to community members as payment for their

labor, cattle and pigs are raised and reserved to cover important expenses (such as school

enrollment or paid labor). Pigs are rarely used for internal consumption of the household,

except for their fat. In words of one of the interviewees, having pigs is like having a

‘money box’ because they can be sold for a good amount of money (around US$25) at

any moment:

You have a warranty with pigs: you can buy them when they are little, feed them with cane from your plot, keep them without disease, and when they are ready, sell them for much more than you initially bought them. Female, 42, Chaquizhca.

190 Because of the perceived difference between the investment made by partner

families and the final result, some community members, visitors and external contractors

have referred to the new homes as a ‘gift’. Families acknowledge that in economic terms,

the contribution of HHHL was important. Even considering that some of them were

saving resources for minor repairs or full reconstruction, the scale of these interventions

was much larger than what they had in mind:

I always say that we have this house because the Universities helped us; we didn’t have the money to build anything like this. Female, 49, Guara. HHHL homes are also seen as investment towards the future as they reduce the

need to attend problems associated with the natural decay and structural damages of old

homes, as explained in the following quote:

I don't have to worry now about how to fix my house, how to buy more materials, or how to get the money to pay for more loans. That pain is gone and my only concern now is how to get through life. Female, 56, Bellamaria Similarly, the word ‘stretching’ (estirar), common in sayings from the popular

culture, was often used by interviewees to illustrate the absence of resources and the

ongoing struggle for making means meet needs:

Once we got the loan to buy the house, we had to ‘stretch the blanket’, as we say here. The house was not in good condition, but we had to wait until being done with the payments of the previous loan to consider the possibility of improving it. Female, 37, Chaquizhca Families rarely used the word ‘poverty’; however, it came more often in answers

describing the struggles of rural life:

Life in the countryside is harsh and requires sacrifice, but it is also peaceful. Even if there is no money, or if there is poverty, you can live in peace. Male, 33, Bellamaria.

191 Dependency on their individual capacity is what defines the situation of

poverty for local families according to one of the partners:

Like most people around here, we are poor. We depend on our work, on what we can produce week by week, to sustain our family. We do not have capital or a regular salary. If we do not sweat on daily basis, who is going to give us a coin? Therefore, when we had to work for the house, we had to assume that nobody would get any income during the entire construction time. It was an entire summer thinking, ‘what am I going to live from?’ Male, 54, Guara. Although these constrains still exist for partner families, new economic activities

have also emerged with the new living environments. Having a productive garden

associated to the HHHL model, for example, has been promoted with two purposes:

generating additional sources of income for the families, and creating an additional

barrier for animals’ presence in the peridomestic areas. Four out of the six partner

families have tried to organize a productive garden in the surrounding areas of the house.

Two of them have implemented basic systems of drip irrigation in an attempt to sustain

their production during the dry season. Even if used for internal consumption of the

household, these gardens represent savings in products that families would have to buy

otherwise. For the family that has a small store in their home administrated by the female

head of household, this garden provides new alternatives of products to sell in her

community:

I want to grow a bit of everything, because if I plant just one thing, I will have to pile and waste a lot. But if I have a bit of everything, you will get little amounts and nothing would be wasted. We use cilantro for everything, parsley for stew, radish for sauces, sprouts for salad… we use everything. Female, 37, Chaquizhca. Other products grown by partner families in their gardens include achiote,

oranges, grapefruit, avocado, papaya, passion fruit, tomato, onion, cassava, and beans,

among others.

192 I also observed that after the intervention, partner families invested additional

resources in other productive activities, such as tilapia production and poultry. One of the

families decided to invest additional resources to buy certified corn seeds that will

increase their level of production: if a bag with 100 pounds of regular seeds costs around

US$20, a quintal of certified seeds can be worth US$220. Even though this could seem

expensive at first look, income for this family is likely to substantially increase over time:

with regular seeds, families can get up to 20 hundredweights per hectare, whereas with

the improved ones, they can get up to 120. Interestingly, these new assets can also

become an additional element to consider in the adaptation of the HHHL in terms of

organization of the space: in this case, increased corn production creates new storing

demands.

Finally, five out of the six families decided to acquire at least one new mattress,

blankets and beds before moving to the new space. As explained by one of the

interviewees,

Yes, things are better now because we did not have all this. We used to have things everywhere. Our beds used to have mats made out of bamboo and bugs used to live there. Things are different now because my uncle helped us to buy new beds when he saw the new house, thanks God. Female, 38, Chaquizhca. We also observed acquisition of services and assets of more economic value such

as refrigerators (n=2), motorcycles (n=1), sound speakers (n=2), and satellite television

(2). Similarly, two of the partner families, have considered more technical ways of

chicken rising and have already developed specific corrals closed with mesh and wood.

Even though it is not possible to state that these decisions demonstrate an improvement in

193 the economic situation of the families as a result of implementing the HHHL model,

they illustrate signs of increasing purchase power.

Economic dynamics characteristic of rural life in this area of Ecuador became

visible under this category. Participants talked about their dependence on daily labor, as

well as restrictions to get access to funding sources due to the unpredictability of their

work as farmers. The economic cost of implementing a project that demands ongoing

contributions in labor and cash over an extended period of time is a factor that cannot be

minimized in a project of this nature. However, this section also showed resources used

by local families to address these restrictions and commit to the project until completion.

Social impact.

The last theoretical category emerged in this phase of analysis was social impacts.

Unlike the health, emotional and economic impacts previously described, this category

expands the limits of the household level and connects HHHL implementation with larger

social structures already existing in the communities. Social impacts also include

interactions occurring at the household level that have been affected by the modification

of the space.

Following existing dynamics of community organization, family members have

worked closely in the construction of the model. Women and younger members of the

family have been in charge of cooking for the construction crews and organizing

peridomestic areas in all cases. Additionally, they have been involved in the production

of adobe: unlike the traditional blocks, the size of the improved blocks facilitates this

possibility. Considering that almost all community members know and have participated

194 in the production of adobe for their own homes, it was easy for the families to speed

up the construction process with their own resources:

We all, each and every member of my family, worked for this house and worked very hard. Some of my children used to come at the end of the day, when the rest of the construction crew had left, to help me with the adobe. Male, 55, Guara. I did a lot of things: I helped making the adobe, passing cement, stones, and bricks, smoothing the floor, passing threads through the tiles, and sticking mesh to the wall. Male, 15, Guara. Family members also participated in the preparation of tiles and painting. One of

the families even got a door for the peridomestic area produced by one of their sons

currently enrolled in high-school:

We reached a point when we needed to complete the peridomicile and there was no money for the door. Since I am taking a class in metallurgy at school, I asked my older brothers to buy the materials for me and I made it. I cut, took measures and welded, and at the end I thought it was better because I put in practice what I already knew and learned more. At the beginning, it didn't come up well… but it was my first real job in metallurgy. Male, 17, Bellamaria. Similarly, the construction of HHHL homes has generated additional sources of

jobs in the communities. In first place, the project has hired people previously certified in

construction techniques by the National Professional Training Service (Servicio Nacional

del Capacitación Profesional de Ecuador, SECAP). This training, organized by HLI in

2012, provided a base of knowledge in constructions with clay that is now replicated.

People who took this training have been prioritized for adobe production, trusses

assembly, and home construction. The cycle of learning is explained by one of the

trainees:

I have learned a lot from this project. Unlike other [community members] that didn’t even go to the [SECAB] classes, I’ve been practicing what we learned. It was not knowledge to keep on paper. I think that it was not interesting for some people, but it was interesting to me. I just missed one class and then I talked to the professor, caught up and passed the test (…) The only thing I cannot do in these

195 homes is the floor because it needs precise measures. Other than that, I can do everything: I have produced adobe, raised walls, installed doors and windows, built roofs, and fixed kitchens. I can even read blueprints. Male, 30, Bellamaria. In this context, an ongoing interplay between existing and specialized knowledge

hold by local families, external contractors, and architects took place along the

construction process. The following quote described how local families valued their

knowledge and questioned the information provided by external actors:

One day all the partners talked among us. We said that people from the construction crew were organizing the process but they didn't have as much experience with adobe production as we had. We have built all the homes in this region with adobe! One day, after getting a number of adobes that were turning into dust in our hands, we decided to organize ourselves and do things differently. We knew that we were adding to much sand into the mix, so we modified the formula. Then we showed the quality of those adobes to the construction crew and they agreed that our method was better. Male, 54, Guara. We decided to put in practice what we knew. At the beginning the bricks were weak and twisted. Then we decided how much of sand, water, and grass we had to add. Once we found the right mix, we progressed a lot. Male, 55, Bellamaria. Traditional knowledge has also been applied in the new homes as a resource to

improve the mix that was applied in the improved kitchens by one of the partner families

with the purpose of making it more resistant to constant use:

Once the improved stove was finished, I decided to give it some cohesion in the way that we traditionally use here. I made some plastering with dry donkey and horse’s manure. It has to be so dry that you can turn it into dust. Then you throw it in a hole and leave it there until is rotten. Finally, you put it on top of the adobe and it doesn't let any garbage coming from the adobe to fall or collapse. The walls of my previous bedroom were sealed like that. Male, 54, Guara. Similarly, partner families with more experience in construction provided

opinions and advice regarding different phases of the process, such as the lay out of

foundations and of roofs. Their existing knowledge helped them to supervise construction

196 and also to consult with more experienced neighbors that had been involved in other

constructions. That knowledge remains with the families as part of the process:

I can tell you that if someone comes today to ask for help in the construction of this type of house, I would gladly provide it. If they want to make adobe, I can explain to them because I already know how to make it (…) I remember everything about the construction because I was there from beginning to end. I never abandoned it. That’s why when they [construction workers] did something wrong, I could call them out (…) I have everything in my mind now. Male, 55, Guara. Partner families have hired community members as construction workers to reach

the number of non-qualified labor required to conclude the process within the agreed

timeframe (two to four months). During the negotiation, partner families agreed to have

at least two people working at all times in the construction (one of them was generally

one member of the family). The possibility of supporting community members with

emerging jobs was explained by one of the community members hired by HHHL:

I was working in the construction of the homes when the construction of the water system in Bellamaria began. Since it was not possible for me to be in both places, I hired my brother in law to cover my part in the water system. That way I was making some money and paying him a little bit less, but we both had a job. Male, 30, Bellamaria The participation of women in productive activities also opens spaces for them to

get involved in decision-making at the household level. Even when most of the

negotiations between HHHL and partner families occurred through the male head of

household, women played a definitive role in the decision of joining the project:

I remember the first time that the engineer talked to me about my house: he brought a design, a little house made of cardboard to explain how it would look like so I could say if I liked it or not. And I say that I liked it, but with the front towards the valley, not like my previous house. Female, 49, Guara.

197 While both men and women are in charge of planting and harvesting, women

are the ones usually in charge of taking produce to the market. This role gives them a

prominent role as administrators of resources at home in addition to their regular

activities:

I paid for most of the construction with my work. My husband helped in the adobe production and then in the construction; but most of the money we used to pay the people that helped here came from my work at the market, what we got from selling animals, and money that my older sons sent to us. I had built my old home by myself after my previous husband abandoned us, so this was not the first time. Female, 56, Bellamaria. Similarly, women in non-partner families have expressed interest in start creating

the conditions for a potential intervention in their homes in the near future:

As you know, everything is a matter of reaching an agreement. We have seen the [HHHL] houses and now we know how they are. I would like to have one of those, especially because of my kids. They are still young and I would like a house that looks pretty and organized for them. What you do is help for us and we can also help with a part. If the project can help me later on, I can start saving during the vacation time of my kids. We can start saving and saving and see what happens. Female, 42, Chaquizhca. Finally, it is noteworthy that two of the heads of household in the partner families

became Presidents of the water committees in their communities —probably the strongest

form of local organization in this area— right after the intervention in their homes was

concluded.

Family and community members were able to directly participate in the

construction of HHHL homes, not only with their physical, but also with their intellectual

capacities. Knowledge exchange between actors helped them to strengthen existing skills

and gain ownership over the project. Power dynamics were visible in this section, as

partner families assumed an active role as counterparts of the project, following but also

198 questioning external knowledge on the basis of their own experience. Importantly,

women demonstrated influence over decisions taken in immediate and future investments

at the household level.

Discussion and Theoretical Development

The implementation of HHHL has provided important criteria to consider the

relevance of living environments in CD prevention. Conceiving home environments as

entry point for disease prevention, facilitates inclusion of factors such as long-lasting

impact (Peters et al., 2013), ownership (Charron, 2012), use of existing resources (Adam

& de Savigny, 2012), and flexibility (Bosschaert, 2012) in the design of sustainable

public health strategies. In this context, we aimed to identify potential contributions of

the systemic approach proposed by HHHL to the construction of sustainable control

measures for CD prevention.

Based on the four theoretical categories outlined in the previous section, I theorize

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. That agency is expressed in the different levels of impact previously outlined

and evolves as an integrated set of capacities toward health promotion and disease

prevention.

So far, the program has been able to create scenarios of social inclusion for

populations at risk of CD in interaction with program designers and health institutions.

Those scenarios are spaces where individual and group agency in relation to health is

invited and maintained. Besides the direct intervention on the homes, HLI has facilitated

construction of drinking water systems, formalization of income generation initiatives,

199 and collaborative efforts aimed at strengthening negotiating skills of local leaders,

among other actions. In this way, the program has attended to the dynamics of the various

elements that constitute the local context and has responded with opportunities for local

families to improve their health according to resources available to them. Instead of

limiting control measures to individuals’ capacity to react to risk factors, the program has

invested important resources in addressing local priorities, while at the same time has

generated stable working relationships with local populations and collected relevant

information to inform implementation processes. This study suggests that by doing so,

HHHL has been able to extend active sense-making in local families’ expressed as

agency in the construction of healthier living environments resilient to their specific

conditions.

From this perspective, agency around the model, and therefore, sustainability of

the intervention can be seen as the confluence of three factors: systemic improvement of

families’ quality of life, consistent use of protective measures, and adaptation to

emerging dynamics.

Systemic improvement of families’ quality of life.

Different from disease-centered approaches, systems thinking emphasizes that

social structures are not just aggregates of parts: they are systems acting under concrete

logics that produce and reproduce social orders through practices and relationships

among actors (Giddens, 1984). This means that human beings are not only pieces of these

structures, but agents in their capacity to reconfigure their environment and the larger

social groups they belong to through reflexive thinking articulated in discursive and

practical action (Suddaby, 2006). This study has shown that systemic interventions

200 around living environments have the potential to generate positive impacts in areas

such as vector control and water and sanitation, but also in aspects such as emotional

wellbeing and social relations at the household level, all of them constitutive of an

integrative idea of health (Haines et al., 2013). As illustrated in the theoretical categories

of Health and Emotional impact —and in the following quote— partner families

acknowledge the systemic nature of the intervention:

The benefits of this process are obvious; everybody in the house feels them. Fencing our land, for example, reduces the entrance of garbage and animals; because of that, we don't have to deal with their excrements and as a result, we are protected from diseases. Male, 55, Bellamaria.

By integrating a broader analysis of the determinants of health (Bardosh, 2014;

Hashimoto, Zuniga, Romero, et al., 2015), HHHL and partner families have been able to

implement a model that conceives healthy living environments within the home space,

while protecting and potentiating local livelihoods. HHHL homes integrate ongoing

interactions between local families and their natural environment in the construction of an

idea of health that acknowledges the dynamics of rural life in the context of CD

transmission in southern Ecuador. However, instead of focusing exclusively on CD’

transmission dynamics, the project has addressed areas perceived as more pressing by

local families, including the urgency of living in a safe space. During this study, partner

families evaluated HHHL’s infrastructure intervention according to criteria that are

relevant within their own context, including its capacity to avoid leaks, keeping pleasant

temperatures, allowing circulation of air without increasing insects’ presence, and

reducing animals’ circulation within the home space, among other factors.

201 Ecohealth interventions have previously shown that comprehensive control

programs encompassing complementary control measures can efficiently prevent

triatomines’ reinfestation in exposed dwellings (Gurtler & Yadon, 2015; Lucero et al.,

2013). However, when these interventions aim to control more than one health threat,

such as plagues of rodents or multiple insects, their perceived protective capacity

increases (De Urioste-Stone et al., 2015; Rosecrans et al., 2014; Santos et al., 2016;

Waleckx et al., 2015). As illustrated in the health impacts’ section, a strategy such as

HHHL is positively impacted by identifying intersections with other sources of disease

that can be potentiated through similar preventive behaviors, such as reduction of

mosquitoes in water based breathing sites or cohabitation with animals. Since local

families showed shared concerns about insects’ presence, they can be empowered in the

application of preventive practice resilient to emerging conditions. Recent

recommendations have been made in this direction for emergent vector-borne diseases

such as zika virus, dengue and chikunguna (Heydari et al., 2017).

Consistent use of protective measures.

As expressed across all themes, HHHL homes are perceived as beautiful,

aesthetically and technically superior to other homes in the area. This factor allows

families to take pride on an asset they have actively achieved with their effort and

commitment. Narratives of parents and children include a renovated sense of self-esteem

expressed not only in their statements of ownership over the construction (‘my house’),

but also in complains about failures of the process and intentions of maintaining the home

in the best possible conditions (social impact category). This finding is consistent with

previous literature indicating that even small changes in infrastructure can increase the

202 perceived value of the dwellings and motivate owners to invest additional resources

in maintaining and improving the home space (Lindsay et al., 2002).

Similar to previous interventions focused on infrastructural improvement

(Hashimoto, Zuniga, Romero, et al., 2015; Lucero et al., 2013; Pellecer, Dorn,

Bustamante, Rodas, & Monroy, 2013), the use of local materials, reutilization of recycled

ones and deployment of passive construction and demolition techniques, has increased

acceptability of protective measures. In spite of its association with Chagas disease

transmission (Grijalva et al., 2015; Meymandi et al., 2017; Montenegro, Vera, Zuleta,

Llanos, & Junqueira, 2016; Saunders et al., 2012), HHHL adobe constructions have

shown efficiency in insect control, as well as substantial contributions to the duration and

comfort of the construction. This efficiency cannot be isolated from other protective

measures applied within the home space, particularly those operating in peridomiciliary

areas; however they show an important contribution of the technology implemented in

this case.

Moreover, all families reported a substantial reduction of insects inside the home

space. As it has occurred in other cases of partial or full reconstruction, it cannot be

claimed that this reduction is caused exclusively by the HHHL intervention (Donovan et

al., 2014; Hurtado et al., 2014b; Santos et al., 2016); however, they show an element of

protection that is acknowledged by local families as beneficial. In this case, families

showed active engagement with bug control measures, such as consistent use of screens

in doors and windows, as well as reduction of accumulated materials and separation from

domestic animals. Internal and external walls have been also kept clear and cleaning

practices recommended by the program reported to be regularly applied. Special attention

203 should be given to substances used for fumigation, as well as the patterns followed in

this practice (Charron, 2012).

HHHL has contributed with knowledge that can be used by local families as a

resource to react to social dynamics affecting their lives. It includes specific productive

skills, as well as concrete knowledge on how CD and living environments can affect their

health. However, further research is needed in order to understand the extent to which

this knowledge will alter families’ behavior around CD prevention in the long run. As

showed in previous studies, the fact that local populations can identify specific stages of

the transmission cycle, cannot be equated with accurate evaluations of risk and

subsequent behavior change (Dell'Arciprete et al., 2014; Parker & Allen, 2013; Rochat et

al., 2015; Sanmartino & Crocco, 2000). However, previous interventions (Bustamante et

al., 2014; Lardeux et al., 2015; Lucero et al., 2013; Monroy et al., 2009; Waleckx et al.,

2015) have shown that participatory approaches that facilitate interactions between

existing knowledge an external expertise can increase communities’ awareness and

agency towards sustainable disease prevention. In this case, community involvement has

expanded the level of influence of a partnership designed for a concrete reconstruction

effort, to a wider idea about health promotion in which partner families themselves

become promoters of control measures. As explained by one of the partners,

Being ‘partners’ means that we help each other: you have helped me and I can help you. Being partners is also a matter of having the house as clean as possible to prevent chinchorros from coming inside (…) I’m thankful because this is the result of everybody’s work. Male, 55, Guara Interactions between acquired knowledge and emerging needs also determine

application of protective measures in the long run. The family that built the prototype

204 home in 2013, for example, continues applying a good number of practices such

preventing animals from coming into the home, usage of the storage room as main space

for storing crops and tools, and repairing windows and doors’ screens when they break.

At the same time, they have added new spaces and activities to their home space,

including tilapia and doves’ production, as well as improved husbandry. Even though

most of these activities are not conducted within the immediate space of the home, they

create ongoing influx of supplies and animals to and from areas surrounding the home.

Further research is required to understand how dynamics inspired and facilitated by the

model suggest new needs in terms of health promotion.

Emphasis of the project in the interpersonal sphere of the socio-ecological model

(McLeroy et al., 1988) has also facilitated ownership of this solution from different

members of the household. As expressed by a young member of a partner family,

My parents made a good decision because this house benefits the entire family. It is good not only for us, but for our extended family as well. Female, 17, Chaquizhca

Unlike programs emphasizing individual responses, programs focused on

promoting responses from multiple actors increase their capacity to suggest specific

actions adjusted to the context of the intervention (Norman, 2009). Since NTD programs

have already received recommendations for involving women, youngsters, extended

families and communities at large in order to measure the social impact of control

interventions (Arenas-Monreal et al., 2015; Monroy et al., 2009; Triana et al., 2016),

emphasis on health promotion at the family level can be important contribution of the

HHHL model to NTD literature.

205 Finally, regular health promotion once the construction phase of the

intervention has been concluded is highly recommended. Reinforcing protective

behaviors can be more important as vector and disease become even less visible (Whitty,

2015). The fact that community members consider safety a definite priority in their

decision making about maintaining and repairing their homes is important in terms of the

general framing of the strategy for future interventions. A comprehensive idea of health

and safety can constitute a more relevant argument for potential partners than CD

prevention itself, and definitely a more accurate argument if the experience of partner

families is considered as main reference.

Adaptation to emerging dynamics.

Similarly, the systemic nature of the HHHL’s intervention, operated under a

dialogic approach to health promotion (Frank, 2005; Greiner, 2010), has facilitated

modification of the conditions of the program according to the resources and priorities

available in each phase. Complex interactions between scientists, program staff, and local

communities around the home space were especially visible under the categories of

economic and social impacts. These interactions created opportunities to pose questions,

discuss potential courses of action, and arrive to joint solutions. This is not to say that

these interactions were free of conflict; on the contrary, conflict emerged often as

individual interest, disciplinary perspectives and administrative priorities demanded

attention. However, withdrawing from the process was a costly decision that compelled

involved actors to find solutions once disagreement aroused, especially under the

perspective of a given word. In words of one of the interviews,

206 I have said this before: to do this [building the house], you have to be tough and strong. You will have to suffer a little bit, but by the same token, you get a beautiful house. Male, 55, Guara. In this sense, the multiple levels of impact involved in the proposed solution

comprise a number of responses to be considered before making a decision for ‘no

compliance’. The perceived value of the intervention motivates reactions from involved

actors that can derive into increasing ownership.

As previously explained in systems’ literature, this emergent response is an

important attribute of systemic interventions: rather than providing a set of fixed answers,

systems put resources in place to be able to identify disarrangement and modify

interventions as they evolve (Charron, 2012). Different from interventions exclusively

evaluated under the lens of compliance —that even out populations’ political and social

circumstances (Bardosh, 2014), a systemic intervention of this nature facilitates the

design of intermediate forms of implementation, flexible enough to incorporate elements

that are relevant for local populations—not only for implementers— and enhance

decision-making power. Consequently, and as shown across categories, families have

responded with agency, creativity, resilience, and problem-solving capacity to conclude

all the interventions proposed by the program.

Barriers.

Sustaining that level of flexibility will be fundamental to enhance participation of

community members in order to bring the HHHL model up to scale. When asked about

interest on replicating the HHHL model in their homes, 60 out of the 102 heads of

household interviewed for this study (Group 3) expressed interest in this possibility. It is

possible to think that this interest is not only sparked by the end product, but also by

207 respondents involvement in the intervention: 57.1% of the heads of household who

expressed interest in implementing HHHL’s model have participated in HHHL’s

construction activities, and 72.7% have participated in at least one of the HLI’s projects.

These findings echo previous studies on local influence in health promotion efforts

(Buttenheim et al., 2014; Lardeux et al., 2015), as well as the position of one of the

partners who mentioned that the intervention would act as a ‘mirror’ for other community

members interested in improving their living environments.

However, covering their involvement with the program is a high cost for local

families, even under this model of partnership. The general cost of HHHL homes has

varied between US$2,000 and US$4,000 for refurbished homes, and US$15,000 to

US$20,000 in fully reconstructed homes. According to partner families, their cover

around USD $2,000 to USD $3,000 of this cost, mainly expressed as the cost of their own

and hired labor. Additionally, working for three months exclusively in this project can

generate a negative impact on families’ economy during the implementation period.

Expansion of the HHHL model should consider important levels of stress emerged from

the need to meet agreements made with the program and lack of economic resources

available to supply daily needs. As explained by one of the partners,

When I saw my house turned down after the demolition, I thought I had lost all what I had in my life. I only had the hope for something better coming soon for my family to move forward. Male, 55, Guara. Some of these costs can be reduced if processes such as adobe making and

construction strategy are revised in order to make them more efficient. Important delays

in the construction were caused by miscalculations of the actual time that certain

activities would take, while in other cases responded to lack of materials, environmental

208 conditions, physical capacity of the construction crew, and partner families’ need to

attend other activities. All of them could be corrected under more realistic planning

processes adjusted to the actual capacities of partner families.

Efficiency should also be considered in reference to the materials being used in

the construction. Extreme temperatures and profuse rains in this area create

environmental conditions that demand increased resistance from construction materials.

However, elements of the construction such as stoves, mesh, and wood have shown

quality issues that required additional resources form partner families to repair them.

Since the need for additional resources can act as an important barrier toward behavior

change, addressing this quality issues is fundamental to enhance a long lasting usage of

protective measures.

A more detailed analysis of sustainability in refurbished homes is recommended.

A fully reconstructed home can potentiate preventive behaviors under the perspective of

ownership generated through the construction process, which is not necessarily the case

for those families that do not experience a drastic change. It was observed that partial

interventions are challenged with structural issues that can render HHHL intervention

irrelevant in the long run. Specific health promotion strategies should be designed to

reinforce sense of ownership and usefulness in these cases.

Finally, the flexibility and adaptability showed by the HHHL to facilitate

participation of local families under differentiated funding models could be strengthened

and replicated by this and other programs applying systemic approaches to disease

prevention. During this pilot phase of the project, local facilitators and staff had

institutional support to emphasize negotiation processes over blunt indicators of cost-

209 effectiveness (Bardosh, 2014; Odhiambo et al., 2016; Parker & Allen, 2013), which

rendered important results in terms of trust building and appropriateness of the applied

solution. Building on the knowledge accumulated during this process, HHHL can

continue working to establish strategic partnerships with governmental or private

institutions with the experience and infrastructure necessary to conduct this kind of

endeavor at larger scales. An important precedent in this direction was the partnership

established with MIDUVI for the phase of simultaneous reconstruction in 2015. Since

intersectoral collaboration is a baseline condition for sustainability of systemic

interventions (Charron, 2012; Dias, 2007; Santos et al., 2016), extending this type of

association with national, international, and multilateral institutions is recommended.

Conclusion

To conclude, I contend that systemic approaches to disease prevention should be

considered a route to avoid fixed, hopeless, and finished ideas about neglected

populations that limit researchers’ capacity to come up with solutions that can effectively

address populations’ priorities. The term NTD has opened a spectrum of research in

which the impact of geographical, demographic, cultural, and social factors can be

thoroughly explored by public health practitioners to arrive to more effective strategies

for disease prevention. However, addressing a multi-causal phenomenon such as poverty

requires consideration of diverse and complex human experiences implied in its

occurrence. Poverty transcends income levels to include factors such as access to

education, participation opportunities and living environments, all of them articulated in

one way or another with specific health risks (Adjei & Buor, 2012). Exclusion

experienced by neglected populations go beyond their access to immediate sources of

210 income, and include limited support from financial institutions, discrimination in

legal procedures, limited access to job and education opportunities, and early adulthood,

among many others. They also express as an ongoing need to work in association with

their living environment, not only in their plots and farms, but also in the space where

domiciliary activities are conducted. Bugs and other animals find in the home an

extension of their natural environment and cohabitation with one another is deeply

engrained in cultural dynamics that do not see them as a risk.

The four theoretical categories outlined in previous sections show a set of impacts

at different levels capable to activate agency, hence, promote sustainability of HHHL

around three factors: systemic improvement of families’ quality of life, consistent use of

protective measures, and adaptation to emerging dynamics. These three factors also

showed limitations, including need for ongoing health promotion as vector and risk

factors become less visible, low quality of some construction materials, families’

financial capacity to sustain and replace protective measures, and capacity to react to the

dynamic nature of living environments.

In this context, sustainability of the systemic health promotion model proposed by

HHHL relies on is its capacity to enhance the effectiveness of control strategies while

directly improving the quality of life of individuals and communities at risk. A systemic

perspective like this can be a useful resource to help researchers to create complex forms

of engagement that could lead to more effective health promotion efforts, as well as help

populations at risk to better understand the purpose and relevance of research in their own

context.

211 Limitations.

The first author of this paper has participated in HLI activities for an extended

period of time. It is possible that respondents were influenced by their identification of

this author as member of HHHL and expectations about potential benefits to be obtained

through her advocacy capacity. Member checking of the full results was not possible due

to financial and geographical limitations; however, some preliminary ideas about

theoretical categories were tested with a limited number of community members during

the third field visit. Lastly and in spite of the authors’ efforts to stay close the data,

richness of local language and intentionality of the original words used by research

participants might have gotten lost in translation.

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218

Chapter 6: Towards a Theory of Sustainable Prevention of Chagas Disease:

Scaling Up Proposal (White Paper)

Contents

1. Introduction 2. Background

2.1. Chagas disease 2.2. Chagas disease epidemiology in Loja Province (Ecuador)

3. Healthy Homes for Healthy Living 4. Methodology

4.1. Data collection and study population 4.2. Data Analysis

5. Scaling up proposal 5.1. Infrastructure improvement

5.1.1. Summary of findings Grounded Theory study 5.1.2. General interest 5.1.3. Infrastructure improvement

5.1.3.1. Local interest in scaling up 5.1.3.2. Implementation considerations 5.1.3.3. Economic considerations 5.1.3.4. Strategic considerations

5.1.4. Dialogic health promotion 5.1.5. Income generation

6. Conclusion

219 Introduction

Probably one of the most important challenges currently faced by researchers

working on public health is how to translate scientific research into practice, and even

more importantly, into practice relevant for populations affected by specific health risks.

Translational, operational, formative, and implementation research have been the subject

of advocacy efforts interested in promoting science as a socially relevant endeavor

capable to mobilize resources for social change (Pokhrel et al., 2011; Sommerfeld et al.,

2015).

The health systems perspective proposes implementation research as a

fundamental piece to address social inequalities lying at the core of neglected tropical

diseases (NTD) occurrence (World Health Organization, 2012a). Defined as a scientific

endeavor interested in understanding processes and resources required for disease

prevention and control in real-world settings, implementation research is focused in

context-specific and evidence-informed knowledge (Peters, Adam, Alonge, Agyepong, &

Tran, 2013). Given that NTD occur in contexts determined by complex social, economic

and political factors, implementation research explores interactions between disease and

larger social structures with actual and potential consequences for affected populations

(WHO, 2012). Informed by pragmatic thinking, it is not only focused on the

identification of barriers for the execution of plans, but also on creative ways of defining

effectiveness under real —instead of hypothetical— circumstances (Gilson et al., 2011).

Implementation research expands narrow perspectives suggested by top down

disease prevention strategies and proposes complex approaches to health promotion that

220 question traditional ways of conceptualizing and designing health interventions. As a

result, it has been identified as a key instrument for bridging gaps and developing more

equitable partnerships between stakeholders, researchers and populations involved in

scientific endeavors, as well as a vehicle to understand organizational, social, and

political processes constructed through communication practices that could affect

effectiveness of health interventions (Sheikh et al., 2011).

After five years of implementation of its pilot phase, Healthy Homes for Healthy

Living (HHHL) has accumulated an important wealth of knowledge about systemic

approaches to Chagas Disease (CD) prevention (Briceno-Leon, 2009; Bustamante et al.,

2014; Lucero et al., 2013; Santos et al., 2016). This white paper aims to explore the

conditions under which HHHL could be scaled up in the focal communities of

Chaquizhca, Bellamaria and Guara in Loja province (Ecuador). Information included in

this report was collected as part of a larger study aimed at identifying factors that

contribute to or limit sustainable control of CD under the model proposed by HHHL.

Since those results have been reported elsewhere (see Chapter 5), this document will

specifically include information about strategies to potentially expand HHHL model

considering previously identified factors. Consequently, this white paper will specifically

address the question: In what ways can the contributions and limitations in the HHHL

model be addressed in order to scale it up to other homes in the focal communities of

Loja province?

221

Chagas disease.

Chagas disease (CD) is caused by Trypanosoma cruzi (T. cruzi), a protozoan

parasite that can be found the hindgut of blood-sucking insects known as triatomines. CD

is commonly found among people living in poverty in rural areas of tropical and

subtropical regions of the Americas. Different species of triatomines have been

identified in Mexico, Central America, the Andean region (Colombia, Ecuador,

Venezuela, and Peru), the Southern Cone (Argentina, Brazil, Bolivia, Chile, Paraguay,

and Uruguay), and the south of the US (Hotez, 2014; Hotez et al., 2012). Ongoing

migratory flows have created new epidemiological contexts in urban centers (De Maio et

al., 2014; Dias et al., 2016).

The most common route of human transmission of CD occurs in poorly

constructed domiciliary environments where triatomines can remain hidden in cracks and

crevices during the day and become active at night to search for blood sources.

Triatomines feed on people’s blood while they are sleeping; in order to make room for

larger meals, they defecate and leave the parasite on people’s skin. Inadvertently, bitten

individuals bring T. cruzi to their system by rubbing the punctured wound where

triatomines have been feeding from or through the mucus membranes in mouth and eyes

(CDC, 2017). Once the parasite enters the human system, it invades cells around the

entry site and multiplies inside them. At this point, the parasite turns into trypomastigotes

that are released into de blood system, starting the acute phase of the infection. People

can show mild symptoms or remain asymptomatic for long periods of time, until they

develop the next phase of T. cruzi infection known as chronic. At this stage people can

222 experience arrhythmias, palpitations, and chest pain (Gascon et al., 2014). About 30% to

40% of the affected population develops cardiopathies, alterations of the gastrointestinal

system such as megacolon and mefaesophagus, neurological or a mix of these clinical

manifestations latter stages of the disease (Soriano-Arandes et al., 2014).

No vaccine has been developed for CD, and medicines used to treat its symptoms

in the acute phase —nifurtimox (Bayer) and benznidazole (Roche)— have shown side

effects that become more serious as a patient’s age increases, including renal and hepatic

complications (Viotti et al., 2014). Other forms of transmission include intake of

contaminated food, vertical transmission from mothers to infants, and blood transfusion

(World Health Organization, 2012b).

The biology of the different species of triatomines involved in CD transmission

creates specific conditions for control programs. For example, the Southern Cone

Initiative, known for a significant impact in reduction of infestation rates in highly

endemic areas of Bolivia, Paraguay, North of Argentina and the Brazilian states of Minas

Gerais, Bahia, and Rio Grande do Sul, directed most of its efforts toward Triatoma

infestans, a species mainly restricted to human created environments (Dias, 2007). This

condition determined that control programs could focus almost exclusively in domiciliary

infestation with sustained indoor fumigation, which lead to significant decrease in CD

transmission in the region (Schofield & Dias, 1999).

Control efforts in areas where vectors are found in association with sylvatic

habitats require different, and in most cases, complex approaches to disease prevention at

multiple levels. In these cases it is necessary to understand a series of associations

223 between vectors, reservoirs, hosts and natural environment in order to determine routes of

contact between triatomines and blood sources (C. Barbu et al., 2009). That is the case of

Central America, where the main vector, Triatoma dimidiate, has been found in

association with palm trees, around rock piles, and in traditional homes surrounded by

dogs and chicken (Dumonteil et al., 2013). International guidelines recommend multiple

spraying of those homes, which usually derives into reinfestation after the residual effect

of the insecticide has receded (Bustamante et al., 2009).

In Ecuador, sixteen species of triatomines have been identified (Abad-Franch et

al., 2001). Given Ecuador’s geographical diversity, these different species show

particular patterns of association with natural environments in coastal and mountainous

areas of the country. Some of these associations are determined by geographical

characteristics that allow settlement of particular species, such T. dimidiata, Rhodnius

ecuadoriensis, and Panstrongylus howardi in domestic and peridomestic areas of Manabi

(Abad-Franch et al., 2001; Grijalva et al., 2012), and Triatoma carrioni, Panstrongylus

chinai, and Panstrongylus rufotuberculatus in the highlands, particularly Loja province

(Grijalva et al., 2015). Other associations are determined by factors such as proximity of

human dwellings to the natural environment. That is the case of Manabi, where

researchers have identified squirrels’ nests, rodents, opossums, and a particular species of

palm acting as hosts and reservoirs of P. howardi (Grijalva et al., 2011). The interactions

of these elements facilitate an ongoing circulation of vectors from peridomestic areas to

the natural environment and vice versa, which increases the likelihood of contact with

human beings.

224

In addition to these ecological factors, it has been recommended that CD control

programs attend to socio-economic conditions, productive activities, and cultural

practices that could constitute risk factors for disease transmission (Sommerfeld &

Kroeger, 2015; Ventura-Garcia et al., 2013). That is the case of Loja province where

triatomines presence has been associated with traditional elements of rural life such as

pigs and goats breeding, as well as lack of latrines and storage units (Grijalva et al.,

2015). Since triatomines’ presence inside domiciliary areas has been predominantly

found in structures built with adobe walls, clay tiles, and dirt floors (Grijalva et al., 2012;

Grijalva et al., 2015), considering home structures is fundamental in this case.

Additionally, CD faces challenges associated with lack of awareness in affected

populations and medical personnel, limited funds assigned for research, low access to

diagnostic tools and treatment, but main, and foremost, sustained socio-economic

marginalization determining the conditions of life of populations at risk (Viotti et al.,

2014). These conditions play a fundamental role in the classification of CD as a neglected

tropical disease (NTD).

CD epidemiology in Loja province.

Loja province is considered at high risk for CD transmission given registered

domiciliary presence of triatomines and evidence of transmission through primary vectors

(Abad-Franch, 2003; Grijalva & Villacis, 2009). Environmental and socio-economic

factors have been identified in this transmission dynamics. Located bellow 2,200 meters

above sea level (masl), Loja is abundant with trees that host rodents and birds’ nests,

factors associated with presence of R. ecuadoriensis in sylvatic environments (Grijalva et

225 al., 2012) . Dogs, guinea pigs and pigs are common in local households (Grijalva et al.,

2005). As a predominantly rural region, communities rely on economic activities that

require ongoing association with their natural environment, mainly agriculture and cattle

rising. Accumulation of produce –harvested and used for cattle feed– in the surrounding

areas of the home, collection of firewood for cooking purposes and presence of fruit

trees, are common (Grijalva et al., 2015). Finally, conditions of living environments

associated with triatomine infestation such as inhabitation of dwellings built with adobe

walls and earthen floors (Grijalva et al., 2005; Grijalva et al., 2012), as well as lack of

access to sanitary facilities (Grijalva, Villacis, Ocana-Mayorga, Yumiseva, & Baus,

2011), are also part of this context.

This research was focused in the communities of Bellamaria (39 homes),

Chaquizhca (50 homes), and Guara (46 homes), a region that showed particularly high

rates of triatomines’ infestation during entomological searches conducted by the Malaria

National Service between 2005 and 2009 in Loja province (Grijalva et al., 2015). Houses

in this area are located within the dry mountain subtropical forest ecological zone and

range in altitude from 1.100 to 2.200 m above sea level. The terrain is characteristic of

the western slopes of the southern Ecuadorian Andes mountain range. The region has a

yearly annual rainfall between 1600 and 3200 mm, with an average relative humidity of

78% and a rainy season that goes from December to April (Campozano, Celleri, Trachte,

Bendix, & Samaniego, 2016). The main economic activity of local population is

subsistence agriculture and day labor. Socio-economic conditions of most families in

these communities are adversely affected by limited job opportunities, poor access to

226 sanitary facilities, as well as deficient health and education services (Nieto-Sanchez,

Baus, Guerrero, & Grijalva, 2015). Poor roads and limited transportation alternatives

increase isolation and marginalization faced by local populations, and restricts their

access, participation and competitiveness in larger markets.

The cycle of poverty and disease in relation to CD is exacerbated in this region by

the limited capacity of the national control program (Quinde-Calderon, Rios-Quituizaca,

Solorzano, & Dumonteil, 2016). Some progress has been made in terms of disease

surveillance and prevention campaigns, but political issues have limited the resource

allocation necessary to achieve sustainable CD control (Dumonteil et al., 2016).

Given this combination of factors, previous studies have indicated the need for

systematic vector control interventions focused on housing improvement and community

participation as potentially effective mechanism for sustainable control of CD disease in

this region (Grijalva et al., 2012; Grijalva et al., 2015). Healthy Homes for Healthy

Living (HHHL) was designed to respond to this need.

Healthy Homes for Healthy Living Model (HHHL)

The Healthy Living Initiative (HLI) is a health promotion effort designed to

address socio-economic dynamics leading to Chagas Disease (CD) occurrence in Loja

province (Nieto-Sanchez et al., 2015). Led by the Infectious and Tropical Disease

Institute (ITDI) at Ohio University (OU) and the Center for Research in Health in Latin

America (CISeAL) at Pontifical Catholic University of Ecuador (PUCE), this initiative is

interested in exploring strategies for long term CD control.

227

Three premises support HLI’s actions: a) poverty is a complex phenomenon

underlying the dynamics of CD transmission (Houweling et al., 2016; Manderson et al.,

2009; Pokhrel et al., 2011) ; b) as a complex phenomenon, poverty expresses in multiple

forms of exclusion experienced by local individuals and communities, including

inequalities in their access to health and health-seeking behaviors (De Maio et al., 2014;

Dell'Arciprete et al., 2014; Sanmartino et al., 2015); c) working closely with local

populations in the definition of a sustainable model for disease prevention can facilitate

the design of a general framework that addresses not only risk factors for CD

transmission, but also socioeconomic priorities of local populations (Abad-Franch et al.,

2011; Gurtler & Yadon, 2015).

HLI’s main project is Healthy Homes for Healthy Living (HHHL), a Chagas

disease prevention effort focused in designing, building, and promoting living

environments conceived to deter triatomines’ presence in intra and peridomestic areas of

the homes in Loja province. Previous research has shown that traditional control

strategies –mainly fumigation with deltrametrine (Bayer) – are effective to prevent

triatomines’ infestation for short periods of time, but not to sustainably prevent CD in the

long run (Grijalva et al., 2005). That is, triatomines come back to spread dwellings

between 6 to 12 months after fumigation (Grijalva et al., 2011).

Consequently, HHHL proposes a prevention model that aims to address the

structural causes of disease transmission in this region. This model is based on homes’

structural improvement (Table. 4), long-term health promotion at the micro-level of the

household (Table. 5), and community involvement in locally driven income generation

228 opportunities. Actions in these three areas are articulated through ongoing

communication among involved actors aimed at informing decision-making at individual,

communitarian, and institutional levels. However, most of the activities promoted by

HHHL’s occur at the family -interpersonal- level.

Between 2013 and 2016, HHHL worked in the reconstruction and refurbishment

of six homes in the communities of Bellamaria (n=2), Chaquizhca (n=2), and Guara

(n=2). During this period (Pilot phase), HHHL collected information about technical and

social implications of implementing infrastructure interventions in this area according to

different purposes. The 2013’s intervention was carried out with only one family and was

focused on prototyping the process of fully reconstructing a home to make it anti-

triatomine, as well as designing health promotion processes to facilitate appropriation and

implementation of this new space. The goals of the 2014’s intervention was

understanding how to introduce anti-triatomine measures in dwellings that did not require

full reconstruction. Two homes were intervened during that year, including one home

built by the National Ministry of Housing (MIDUVI, by its acronym in Spanish). Finally,

HHHL simultaneously rebuilt three homes (one in each community) between 2015 and

2016, in order to identify logistical demands, as well as behavioral and socio-economic

impacts of conducting differentiated interventions around home improvement for CD

prevention. These interventions were funded through research schemes available at Ohio

University (OU) and Pontifical Catholic University of Ecuador (PUCE), as well as local

families and institutional partners, including the National Ministry of Housing (MIDUVI)

and the local government.

229

HHHL has worked under a model of partnership that examines the contributions

that different stakeholders can make to the definition and realization of healthy

environments as conceived in this particular context. Family members, neighbors, local

facilitators, academic communities, and representatives of the local government are

expected to maximize existing resources by contributing in different capacities to the

execution of plans individually conceived considering families’ socio-economic

conditions. Partner families in each stage of intervention were selected according to a

number of criteria, including interest in reconstructing their homes, capacity to commit

resources to the project, and decay status of their dwellings.

The level of decay of local construction was established after a study conducted in

2012 by PUCE’s Architecture School (unpublished data). This study identified seven

criteria to determine urgency of infrastructure intervention in the homes of these three

communities, including constructive pathologies, thermal performance, use of culturally

acceptable materials, access to water and sanitation, access to natural sunlight,

ventilation, potential risks, and cost of the required intervention. Five categories were

established under these criteria. Category 1 includes homes that are safe enough to

implement anti-triatomine measures without a major intervention, at an approximate cost

of USD $49.23 per m2. Categories 2 and 3 indicate some form of refurbishment required

before implementing those measures, with an approximate cost of USD $70.30 per m2 in

the former and USD $120.63 in the later. Finally, categories 4 and 5 are specific for

homes that demand full reconstruction in order to solve structural issues that endanger the

230 safety of inhabitant families at a cost USD $158.74 for category 4 and USD $218.89 for

category 5. A new study aimed at updating this data was conducted in 2016.

HHHL uses the term ‘partner family’ to refer to families that have agreed to build

or improve their homes according to the model proposed by HHHL. This rhetorical

decision was made as an alternative to the term “beneficiary” traditionally used in

development interventions. Calling local families “partners” makes visible a relationship

in which involved actors make specific contributions during the intervention, including

economic resources, labor, and social capital. HHHL has adapted the idea of partnership

as a means of addressing local needs through collaborative activities and decision-making

sensitive to local concerns and interests proposed by Seddon, Billett, and Clemans

(2004).

Methods

Data collection and study population.

Ethnographic grounded theory was used as main methodological framework for

this research. Grounded theory (GT) is a systematic approach to data collection and

analysis interested in generating explanations of social realities based on emerging

information grounded in actual data rather than in theory (Charmaz, 2014; Glaser &

Strauss, 1967; Strauss & Corbin, 1998). Constructivist approaches to grounded theory see

both data and analysis as the product of experiences co-created by participants,

researchers, and emerging data (Atkinson et al., 2008). Since constructivism is focused

on how and why participants construct meanings in specific situations (Deetz, 1996b;

Pearce, 1989), its extension to grounded theory looks at how, when, and to what extent

231 the studied experience is embedded in larger social structures in order to explain and

represent research findings (Charmaz, 2006). Constructivist Grounded Theory (CGT)

alludes to the open-ended nature of social processes, the value of human agency in

meaning making, and the fundamental role played by language, interpretation, action and

temporaryity in research (Strauss & Corbin, 1998). When coupled with ethnographic

methods of data collection, GT receives the name of ethnographic grounded theory.

Participants for this reserach were selected from inhabitants of the communities of

Bellamaria, Chaquizhca, and Guara in southern Ecuador that have directly or indirectly

experienced interventions led by HHHL. The study population was divided into three

groups: partner families; non-partner families, selected as matched pairs; and a third

group of heads of household selected across the community.

The first group (Group 1) included the six families that have specifically agreed to

partner with HHHL to build or improve their homes according to the above-described

model (Table 3). At least three members of each family were interviewed in three

different moments of field visits: the first one between June and July 2016; the second in

January of 2017; and the last between May and June 2017.

Considering the principle of maximum variation (Lindlof & Taylor, 2011; Tracy,

2013), an equal number of families (6) that have not implemented the HHHL model also

participated in in-depth interviews for this research (Group 2). They were purposely

selected with the purpose of mirroring partner’s situation previous intervention,

particularly in terms of family composition and decay status of the home. Two members

of these families were interviewed during the same periods of data collection.

232

The third group (Group 3) included members of the communities at large

(n=102). Heads of household that accepted to participate completed a facilitated paper-

based forty-one (41) item questionnaire including questions about physical conditions of

the dwelling, socio-economic status of the family, and interest in home improvement in

the near future. This information was collected in order to create a larger picture of the

communities that could serve as reference for theory development in later stages of

analysis. Group 3 is cross-sectional and not exclusive of groups 1 and 2.

Data analysis.

The analytical processes conducted within this research were not intended at

generating new theories of sustainability; instead, they aimed to extend understanding of

this concept by adding contextualized data emerged from HHHL implementation.

Therefore, I used ‘sustainability’ as sensitizing concept. Sensitizing concepts are

interpretive devices used as “points of departure for studying the empirical world while

retaining the openness for exploring it” (Charmaz, 2014, p. 30). In order to operationalize

sustainability as concept, I used the Pan American Health Organization (PAHO)

parameters for sustainable management of NTD in the region (Holveck et al., 2007): (i)

vector control; (ii) provision of water and sanitation; (iii) management of zoonotic

elements of the disease; and (iv) community participation social capital. Interview

protocols and questionnaires were structured around these parameters.

A total of 102 questionnaires from community members, more than 40 hours of

interviews with partner and non-partner families, as well as more than 150 pages of

implementation reports, and field notes about informal conversations and participant

233 observation were analyzed in two phases of coding (Saldana, 2016). The initial coding

phase involved assigning codes to words or larger segments of transcribed materials,

whereas the second phase aimed to identify the most significant codes initially identified

in order to sort, synthesize, integrate, and organize them toward theory construction

(Charmaz, 2014). Since this research was conducted in Ecuador with Spanish-speaking

communities, initial coding schemes were constructed in Spanish using a line-by-line

approach.

Questionnaires were analyzed in two separate ways. First, quantitative data were

analyzed using frequency tables. Subsequently, a univariate logistic regression model was

fitted for the “interest in reconstructing home under the HHHL model” variable in each of

the outcomes. All quantitative data were analyzed using R (version 3.4.1). Descriptive

coding was applied to the qualitative portion of each question. Descriptive coding is a

method intended at identifying and summarizing the most salient elements of a portion of

qualitative data (Saldaña, 2016). This process was intended at expanding the information

provided by partner and non-partner families included in the interviews by adding a more

general perspective from the communities at large.

These descriptive codes were integrated in the Focused coding phase described in

a separate manuscript (see Chapter 5). The questionnaire included 41 questions, 38 of

them with a potential qualitative follow up question. In order to process this information,

a workbook in Excel with different tabs (sheets) for each one of the questions was used.

The first part of the process consisted on entering the answers for each one of the

respondents (102) in the corresponding tab. Subsequent coding was conducted in each

234 one of the existing Excel sheets using the Comment function available in the Review

menu of the program.

Scaling Up Proposal

Summary of findings ancillary study.

The ideas for scaling up the HHHL’s model proposed here build upon a larger

study aimed at identifying contributions and limitations to sustainable control of CD

under the model proposed by HHHL. Since those results have been discussed at length in

a separate paper, I will only provide a summary for readers’ reference.

The study “Towards a theory of sustainable prevention of Chagas disease: An

ethnographic grounded theory study” aimed to identify factors that contribute to or limit

sustainable control of Chagas disease under the model proposed by HHHL in three

communities of Loja province. It approached the experiences of local families in relation

to the construction and use of the homes promoted as anti-triatomine solution by HHHL.

Four theoretical concepts emerged once the categories identified during the phase

of focused coding (infrastructure in intervened homes, infrastructure in non-intervened

homes, social structures, community relations, relationships with HHHL staff, and future

perspectives) were sorted and integrated into analytical memos during the phase of

theoretical sampling (Charmaz, 2014). These theoretical categories were health impact,

emotional impact, economic impact and social impact.

Applying these lenses, I theorized 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. That agency is expressed

235 in the different levels of impact previously outlined and evolves as an integrated set of

capacities toward health promotion and disease prevention.

So far, the program has been able to create scenarios of social inclusion for

populations at risk of CD in interaction with program designers and health institutions.

Those scenarios are spaces where individual and group agency in relation to health is

invited and maintained. Besides the direct intervention on the homes, HHHL has

facilitated construction of drinking water systems, formalization of income generation

initiatives, and collaborative efforts aimed at strengthening negotiating skills of local

leaders, among other actions. This way, the program has attended to the dynamics of

various elements constitutive the local context and has responded with opportunities for

local families to improve their health according to resources available to them. Instead of

limiting control measures to individuals’ capacity to react to risk factors, the program has

invested important resources in addressing local priorities, generating stable working

relationships with local populations and collecting relevant information to inform

implementation processes. This study suggests that by doing so, HHHL has been able to

extend active sense-making in local families’ expressed as agency in the construction of

healthier living environments resilient to their specific conditions.

From this perspective, agency around the model, and therefore, sustainability of

the intervention can be seen as the confluence of three factors: systemic improvement of

families’ quality of life, consistent use of protective measures, and adaptation to

emerging dynamics. These three factors also showed limitations, including need for

ongoing health promotion as vector and risk factors become less visible, low quality of

236 some construction materials, families’ financial capacity to sustain and replace protective

measures, and capacity to react to the dynamic nature of living environments.

Moreover, I argued that the flexibility and adaptability showed by the HHHL to

facilitate participation of local families under differentiated funding models could be

strengthened and replicated by this and other programs applying systemic approaches to

disease prevention. During this pilot phase of the project, local facilitators and staff had

institutional support to emphasize negotiation processes over blunt indicators of cost-

effectiveness (Bardosh, 2014; Odhiambo et al., 2016; Parker & Allen, 2013), which

rendered important results in terms of trust building and appropriateness of the applied

solution.

Building on the knowledge obatined during this process, it was recommended that

HHHL keeps working on establishing strategic partnerships with governmental and

private institutions with the experience and infrastructure necessary to implement home

improvement projects at larger scales, but sustain its involvement in the health promotion

efforts conducted along the process. Since intersectoral collaboration is a baseline

condition for sustainability of systemic interventions (Charron, 2012; Dias, 2007; Santos,

Bedin, Wilhelms, & Villela, 2016), this model of partnership can provide the necessary

tools for the intervention to continue as a systemic approach to disease prevention. In this

sense, it is important to sustain mechanisms generated with government institutions,

NGOs, and private partners interested in promoting the idea of healthy housing. An

important precedent of this kind of collaboration is the partnership established with the

Ecuadorian Ministry of Housing in 2015. Possibilities of extending this type of

237 association with national, international, and multilateral institutions should be further

explored.

Accordingly, scaling up the HHHL model will be understood in this paper as the

process of bringing up to scale the model’s capacity to engage and activate agency

around disease prevention in other families in this area. Although some operational issues

in relation to infrastructure will be presented, I will elaborate on ideas to sustain the

systemic nature of intervention while extending it to the other families in these

communities.

Infrastructure improvement.

Existing interest in the HHHL model.

Updated data resulted from the decay analysis conducted in 2012 (n=126) in

Chaquizhca, Bellamaria, and Guara showed significative progression towards decay in

local homes (Table 8). While 23.5% (n=31) of the homes were classified under category

3, 19.7% (n=26) under category 4, and 15.15% (n=20) under category 5 of decay in 2012

(n=132) in 2012, the most recent analysis included 8.73% (n=11) of the homes in

category 3, 11.11% (n=14) in category 4, and 41.27% (n=42) in category 5. The increase

in category 5 can be explained by the natural progression of adobe constructions when

they are built with traditional techniques. According to local families, a traditional adobe

construction that does not include additional protection measures —such as cement

plastering— is expected to last 10 to 12 years without major repairs. After that period,

walls become thinner and start showing major cracks.

238 Table 9. Comparison of 2012 and 2016 decay analysis (summary).

2012

2016

N. % N. %

GAa

Abandoned 12 30.00 9 21.43 Category 1 3 7.50 6 14.29 Category 2 4 10.00 4 9.52 Category 3 7 17.50 3 7.14 Category 4 7 17.50 2 4.76 Category 5 7 17.50 18 42.86 TOTAL 40 100.00 42 100.00

CH

Abandoned 12 21.82 7 14.58 Category 1 3 5.45 3 6.25 Category 2 9 16.36 9 18.75 Category 3 14 25.45 4 8.33 Category 4 10 10.00 7 14.58 Category 5 7 12.73 18 37.50 TOTAL 55 100.00 48 100.00

BM

Abandoned 3 8.11 3 8.33 Category 1 1 2.70 6 16.67 Category 2 8 21.62 2 5.56 Category 3 10 27.03 4 11.11 Category 4 9 24.32 5 13.89 Category 5 6 16.22 16 44.44 TOTAL 37 100.00 36 100.00

TOTAL

Abandoned 27 20.45 19 15.08 Category 1 7 5.30 15 11.90 Category 2 21 15.91 15 11.90 Category 3 31 23.48 11 8.73 Category 4 26 19.70 14 11.11 Category 5 20 15.15 52 41.27 TOTAL 132 100.00 126 100.00

a GA: Guara; CH: Chaquizhca; BM: Bellamaria.

Consistently, socio-economic surveys applied to the communities at large showed

that 75.2% of the total participants (n=102) considered necessary improving the structure

of their homes, while 60% considered this improvement urgent. Reasons argued in both

cases included unsafe conditions due to age of the construction or deterioration of

239 original adobe, lack of comfort (high temperatures and darkness), presence of leaks, and

interest in improving the health of family members. Additionally, 56.6% of the

respondents mentioned that they would consider full reconstructions of their homes,

while 67.4% expressed interest in their homes being intervened under the HHHL model

(Table 9). Arguments stated to support this interest include aesthetics and infrastructure

considerations (the homes are ‘more organized and clean’, ‘pretty’, ‘allow individual

rooms for members of the family’, ‘more comfortable to receive visitors’, ‘good for

earthquakes and tremors’), appreciations about the lifestyle promoted by HHHL homes

(‘they help us to live better’, ‘healthy’, ‘reduce bugs and dust’, ‘good to live far away

from animals’), and evaluations of HHHL contribution (‘it is good help’, ‘built by people

that know [about technical construction]’, ‘families do not spend a lot of money’, ‘we

like what you guys do’), among others.

Families that were not interested in implementing the HHHL model expressed

concerns about costs (‘it is too expensive and we are poor’), workload (‘it is too much

work’, ‘I am a single a mom and do not have anybody that could work for me’), and size

(‘those homes seem small for larger families’). Participants also mentioned preference for

other materials (‘I would like to build my next home with bricks’) and lack of interest for

altering their current lifestyles (‘we have lived this way all our life and we are too old

now’).

240 Table 10. Demographic characteristics respondents socio-economic questionnaire N % Respondent gender Female 58 56.9% Male 44 43.1% Respondent age 18-30 13 12.7% 31-40 17 16.7% 41-50 16 15.7% 51-60 21 20.6% 61-70 14 13.7% 71-80 11 10.8% 81-90 10 9.8% Inhabitants 1 to 3 49 48.0% 4 to 6 33 32.3% >6 20 19.6% House age <14 41 40.2% 15-29 45 44.1% >30 16 15.7%

Table 11. Frequency table for quantitative component of socio-economic questionnaire. Question Answers N. % General socio-economic factors

Members of the family living in another city Yes 81 79.4 No 21 20.6 DN/DA 0 0

Breadwinner in the house

Mom 14 13.7 Dad 32 31.4 Both 3 36.3 Children 16 15.6 Other? 3 2.9

Transportation method more often used

Car 14 13.7 Ranchera 78 76.5 Animal 5 4.9 Walking 2 2 Other? 2 2

241 Table 11: continued.

DN/DA 1 1

Distance to the closest road

Less than 1 hour 99 97.1 Between 1 and 2 hours 3 2.9

Over two hours 0 0 DN/DA 0 0

Regular fumigation of the household

Yes 63 62.4 No 38 37.6 DN/DA 0 0

Currently receiving subsidy from the government Yes 68 66.7 No 34 33.3 DN/DA 0 0

Have received subsidy from the Ministry of Housing

Yes 4 4 No 98 96 DN/DA 0 0

Currently receiving disability subsidy Yes 11 10.8 No 91 89.2 DN/DA 0 0

Access to community water system Yes 66 64 No 36 36 DN/DA 0 0

Sanitary facility

Toilet 36 35.6 Latrine 37 36.6 Bushes 29 27.7 DN/DA 0 0

Source of water used for cooking

Open source water 30 29.4

Bore hole/well 3 2.9 Tap 64 62.7 Other 4 3.9

Space for cooking

Kitchen 83 81.3 Patio 13 12.7 Bedroom 5 4.9 Other? 1 0.9

Affiliated to Farmers Social Insurance Yes 61 59.8 No 41 40.2 DN/DA 0 0

242 Table 11: continued.

Monthly income

Under 100 41 40.2 Between 100 and 300 43 42.1

Between 300 and 500 9 8.8

More than 500 2 2 DN/DA 7 6.9

Staying in their homes for the next five years Yes 90 88.2 No 7 6.9 NS/NR 5 4.9

Legal titles over the land where the house was built

Yes 44 43.1 No 56 55 DN/DA 2 1.9

Legal titles over productive plot Yes 72 71.3 No 28 27.7 DN/DA 2 1.9

Interest in home improvement and HHHL

Infrastructural changes recently implemented in the house

Yes 47 46 No 53 52 DN/DA 2 1.9

Need to improve infrastructure of the home

Not necessary 15 14.7 Small need 9 8.8 Somehow needed 20 19.6 Needed 36 35.2 Really needed 16 15.6 DN/DA 6 5.8

Urgency to improve infrastructure of the home

Not urgent 23 22.5 Not very urgent 15 14.7 Somehow urgent 19 18.6 Urgent 28 27.4 Very urgent 13 12.7 DN/DA 3 2.9

Interest in full reconstruction

Yes 46 45 No 42 41.1 Maybe 10 9.8 DA/DA 3 2.9

Preferred materials for full reconstruction Adobe 28 27.4 Bricks 40 39.2

243 Table 11: continued.

Cement 7 6.9 Block 2 7.4 Other 5 1.9 DN/DA 22 21.5

Have heard of HHHL homes Yes 89 87.2 No 12 11.8 DN/DA 1 0.9

Have participated in HHHL construction activities Yes 53 52 No 46 45 DN/DA 3 2.9

Interest in implementing HHHL model

Yes 60 58.8 No 23 22.5 Maybe 4 3.9 DN/DA 15 14.7

Have participated in HLI activities Yes 72 70.5 No 25 24.5 DN/DA 5 4.9

From the households that expressed interest in implementing the HHHL model,

32% are located in Bellamaria (n=21), 37.5% are in Chaquizhca (n=24), and 29.7%

(n=19) are in Guara. Approximately 41.3% of the families currently hold titles over their

land, 71.4% own a plot to cultivate their products, and 65.6% receive the government

subsidy. Even though 85.7% reported monthly incomes under US$300, all families

(100%) mentioned willingness to contribute some resource to complete a project of this

nature, including produce and cattle sales, family loans, remittances, labor, and credits

with banks, cooperatives, or official institutions. Around 48.4% of them have conducted

some form of infrastructure repair in their homes during the last year and 46.5% would be

willing to fully reconstruct their dwellings.

244

These results show favorable conditions to scale up the HHHL model under most

of the criteria previously established to select partner families. Most importantly, they

indicate accuracy of the factors observed by the project during the phase of simultaneous

reconstruction to establish differentiated models of funding for partner families, including

property over their land, access to the Human Development Subsidy (government

subsidy), regular income (obtained through produce sold at the local market, animals’

commerce or weekly salary), as well as access to additional sources of funding of income

(remittances or credits, among others). However, I recommend to consider economic,

infrastructure, and strategic factors to design an scaling up process at community levels.

Economic considerations.

The general cost of HHHL homes varied between US$2,000 and US$4,000 for

refurbished homes, and US$15,000 to US$20,000 in fully reconstructed homes.

Differences were brought by the size of the home, as well as the type of intervention

carried out in each case. Additionally, the project was forced to deal with unexpected

budget increments derived from overprice in basic materials, lack of providers,

transportation to and from the construction sites, and lack of experience in this type of

interventions.

Considering that the construction of a traditional house in this region could be

completed at a total cost of US$1,000, the US$2,000 to US$3,000 invested by partner

families is significant. Moreover, it is more than the US$1,000 recommended by previous

studies conducted to determine the value of affordable, comfortable, and sustainable

housing for resource constrained settings (Haines et al., 2013).

245

However, HHHL’s partner families were not required to contribute the same

amount of financial resources to complete the project. Even though they brought assets

such as social capital and knowledge, all of them identified labor as the most important

resource they contributed with to the intervention: partner families were required to work

full time in the construction for periods of time ranging from eight to 15 weeks. Since

most families in the region depend exclusively on their work for daily subsistence,

working for three months in this project represents a high cost for them. Individuals that

work in one of the local haciendas, for example, can make US$10 a day for five days a

week during the corn production season (January to September). Considering that

constructions took place during that time of the year due to more favorable climatological

conditions, the approximate cost of a partner’s full involvement in the project could have

been around US$750 (this cost excludes the value of food and produce that some workers

can get as part of their payment).

Additionally, partners had to partially cover the cost of hired labor: if a regular

home can be built by two or three people within a month, HHHL homes required crews

of minimum four people to complete it within two or three months. In this case, partner

families had to identify resources to cover one or two construction workers (if a member

of the family was not capable of willing to contribute with his/her own labor) at a cost of

US$10 per day if breakfast and dinner were provided by the hiring family, or U$13 a day

if that was not the case.

Since community members have access to different forms of income, specific

analyses of the socio-economic conditions of each family were conducted in order to

246 understand the viability of their participation in the construction process. For example,

while one of the partner families had five kids under the age of 17, all of them attending

school, the other three families involved in full reconstruction processes had adult

children willing to support their family either with their work or money. While the first

family had important debts to cover, the other three families did not have any or had

small ones. Similarly, the first family did not own a plot to work and the head of

household depended on being hired by landlords from the area for daily subsistence,

whereas the other three families owned their plots and had spaces to sell their crops in the

local market. Considering that these elements could compromise not only the family’s

capacity to engage in the project, but also their economic performance during the

construction months, HHHL decided to partially accept the offer of the head of household

of the first family when he suggested that his labor could be paid by the project instead of

taken it as an in-kind contribution (he was paid at the local rate during two days for each

week of the construction). Additionally, the mother made arrangements to cook for the

construction crew in order to complete the cash necessary to cover weekly expenses.

Under this model, the family was able to participate and conclude the process within the

stipulated timeframes.

This example illustrates a model in which each actor has been able to contribute

with resources derived from their agency and advocacy capacity under specific

circumstances suggested by their economic situations. In order to implement this

differentiated approach, some factors demand special attention.

247

Children’s school attendance is considered one of the most difficult expenses to

cover for families in this region. Even though education in Ecuador is stated by the

government to be free because parents do not need to cover tuition fees, they still need to

acquire textbooks, transportation, and materials for all their kids. Besides these regular

expenses, families in these communities have to pay for relocation of their children when

they start secondary school. Even though Cariamanga −the urban center where most

schools are located− is only 15 km. away from the communities, the conditions of the

road can make the ride to the closest of them (Guara) about 1 hour and 20 minutes long.

Since classes start at 7 AM, school kids have to leave their homes before 5 AM and are

not be back until 3:30 PM. The inconvenience of this long day, added to transportation

costs (US$1.50 each way on daily basis), has forced most families to rent a room in

Cariamanga where children can stay during the week. The cost of these rooms can range

from US$35 to US$50 per month. Many families cover these costs with the monthly

subsidy provided by the national government to families living under the poverty line, as

well as sales of animals and produce. Additionally, families reserve a portion of their

products to leave with their kids in the city. In these cases, costs increase as more kids in

the family join secondary schools.

Availability of resources is a determinant factor for families to embark in

construction endeavors. It is rare for local families to have all the resources necessary to

bring a construction project from beginning to end in an anticipated fashion. Instead, they

tend to repair or start reconstructing what is needed when they have a job that gives them

extra resources to get materials and continue with the construction as new sources of

248 income emerge. As a result, constructions can extend over long periods of time and it is

not unusual to find constructions that mix different types of materials, including bricks,

wood boards, bahareque and block, depending on the income available at the moment of

the construction. This is particularly problematic in terms of safety: different types of

materials also demand different types of foundations and structural conditions, but

families can easily dismiss technical demands due to the lack of available resources.

Another aspect that deserves particular attention is the level of indebtedness that

families are assuming at the moment of the intervention. Acquiring debts with one or

multiple parties constitutes an option at hand that many families have attempted to

address lack of resources in different periods of the year. Loans with family and friends

are preferred over financial institutions, first, because most of the time these loans come

with no interest, and second, because the payment periods are more flexible. These loans

can also be paid with labor if they are acquired with people from the same area (usually

landlords). Additionally, it is not unusual for local families to acquire new loans to cover

previous ones. Applying for loans guaranteed by the national government subsidy or to

the local water system committee have been other resources used by partner families in

HHHL’s pilot phase.

However, financial institutions also generate mistrust in community members.

Partner and non-partner families mentioned unwillingness to work with banks and

cooperatives because of the uncertainty of being able to pay within the expected monthly

deadlines. This concern is associated with the unpredictable nature of agricultural

production, as explained in the following quote by a member of a non-partner family:

249

I asked for a loan but it turned out really bad for me… I broke. A year ago, I asked for US$3,000 to plant corn, but the person in the store sold me very bad seeds. The corn that came after them was white and small; it became dust in my hands. It was not even useful to feed the pigs. Nobody wanted to buy it and the money we had used to pay people for planting, supplies, and all the harvest, was wasted. I’m still paying US$485 every three months for money I never saw. Male, 33, Bellamaria. In spite of these unfortunate experiences that warn about challenges of working

with the official financial system, approximately a third (24) of the families that

expressed interest in implementing HHHL’s model showed willingness to apply for

credits with banks or cooperatives.

The analysis of the specific conditions of partner families has facilitated decision-

making in relation to families that require additional support from the project. It has also

created an interaction of reciprocity between families and HHHL in which the interests of

both actors are acknowledged and deemed relevant.

Community members considered that the contributions made by HHHL are

essential to carry out an infrastructure improvement as substantial as the one achieved

through this process. Partner families argued that they would be able to produce the

adobe themselves, but they would still need the cement, beams, rods and additional

materials required to work with adobe under the proposed structure. As explained by one

of the interviewees:

People have received almost all the materials they need and all what they’ve had to contribute with is their labor. That’s good (…) What they [HHHL] do is good and on top of that they give jobs to other community members. Male, 30, Bellamaria

250

For these reasons, it is recommended that this differentiated approach is sustained

in subsequent phases of the project. During this pilot phase of the project, two types of

partner were identified:

Full partners, in reference to partners that assumed all the costs of the intervention

without additional support.

Hired partners, families that assumed all the cost of the intervention, but required

to be hired by the program in order to cover those costs.

As explained before, elements to consider in order to make a decision in relation

to this classification include:

Property of the terrain where the family lives

Access to the Human Development Subsidy

Potential sources of income

Major species sold in the last month or being raised at the moment (including

pigs, goats, and cattle)

Minor species being raised for sale (mainly chicken)

Tenancy of regular space to sale cattle, agricultural or other products (such as

handcrafts) in the local market

Additional sources of income (panela production, fishing, tilapia production,

construction jobs, etc.)

Recent migration to urban centers for income generation purposes (gold mines or

shrimp companies, for example)

251

Number of family members bringing resources to the household (explore

contributions made by older children).

Weekly food related expenses

Health conditions being attended on regular basis

Transportation demands

Utilities

School expenses (number of children currently enrolled in school and currently

living in other cities)

Projection of agriculture related expenses throughout the year (fertilizers,

harvesting, and irrigation, among others)

It is highly possible that this information cannot be obtained in a single visit or

through a single instrument. Relevance of regular face-to-face interactions cannot be

overemphasized. These regular interactions may lead to greater trust by families and

greater willingness to disclose their economic opportunities and constrains, information

that becomes critical to inform decision-making at this stage. Families do not tend to give

away information about their economic situation easily, in some case because they

identify potential benefits to be obtained if they report lower levels of income, but also

because their lack of resources is a sensitive issue for them. Evaluating the socio-

economic conditions of the family should be considered a process that includes not only

data collection, but also observation of household dynamics and construction of

relationships with potential partner families.

252

This deep level of analysis might not be necessary for homes included in category

1, that will experience minor levels of economic impact; its relevance increases as homes

considered for potential interventions approach category 5 of decay. Since these cases

demand larger economic investments, as well as long term involvement with the project,

establishing a trustworthy relationship from the beginning is crucial.

Implementation considerations.

Processes such as adobe production, quality of construction materials and

sequence of the interventions should be revised in order to make a more efficient use of

available resources. Important delays in the construction were caused by miscalculations

in the actual time that certain activities would take, while in other cases were produced by

lack of materials, environmental conditions, physical capacity of the construction crew,

and partner families’ production needs. These issues could be addressed under more

detailed planning processes based on realistic implementation conditions learned

throughout the pilot phase of the project(Gilson et al., 2011). Consequently, this section

will describe some implementation issues identified during this research, as well as

suggested routes of action.

Adobe production.

Adobe production has evolved during the different stages of implementation of

the pilot phase. Knowledge about specific characteristics of the mix (four volumes of dirt,

two of grass or cane bagasse and two of water), location of dirt mines with the required

acidic concentrations, social organization for mass production and costs associated to

transportation, have been identified throughout the process. Partner families involved in

253 adobe production during the simultaneous construction phase mentioned that use of

machinery to compact the block makes the process less tiring, reduced back pain (if

compared with traditional methods), speeds up drying for use (5 days instead of 20),

reduced the amounts of raw material required (especially water), and produced less waste

during the construction. Moreover, families acknowledged comfort derived from the

characteristics of compact blocks in reconstructed homes.

In order to facilitate involvement of community members and speed up the

process, it is recommended that adobe production can be conducted in each community.

Transportation constitutes an important burden for community members as there are not

many options and the existing ones can be expensive. Adjusting to rancheras’ times (only

public transportation system available) affects availability of people, as they only

circulate at 6 AM and 3 PM.

Other recommendations made by partner families to add efficiency to adobe

production include:

a. Increasing the size of the molds currently used in the block press machine to produce

more blocks in one operation

b. Securing presence of groups of 4 people during the operation hours: 2 people are in

charge of making the mix and 2 more in charge of compressing the blocks.

c. Adding a sanding machine to the production process

d. Install the adobe factory in each community (moving machinery as production moves

from one community to another)

254 e. Facilitating association for production and mobilization of adobe blocks to the homes

—even through hiring of some community members

Importantly, information about advantages of technical production of adobe has

not been shared with community members. That could partially explain why around

42.1% of questionnaire respondents preferred bricks when considering reconstruction

projects, while only 29.5% is considering adobe. Respondents mainly referred to

production advantages such faster and less demanding construction processes to explain

this preference; however, they also mentioned problems of adobe constructions that have

been addressed with the new technology, such as cleanliness and decay. Given the

availability of resources (including existence of machinery readily available for

community members), information about the advantages of this method should be made

public and accessible.

Quality of construction materials.

Efficiency should also be considered in reference to the quality of materials being

used in the construction and some elements of the design that have not worked as

expected. Extreme temperatures and profuse rains in this area create environmental

conditions that demand particular resistance from construction materials. Stoves, mesh,

and wood have shown quality issues that will need to be addressed by the program in

order to secure a long lasting usage of these measures. Additionally, partner families

recommended:

a. Screens: Plastic mesh installed in small panels has been the screen’s design that more

resistance to use and environmental conditions has shown. This resistance is also

255 dependent of the presence of animals in the peridomestic area; major damages were

found in homes that keep cats and dogs in the porch.

b. Kitchen: Improved stoves require more consistent follow up to secure their use. Two

out of five kitchens repaired to this day are only used to store utensils and food. In these

cases, families have built an external kitchen where they cook, store crops, raise guinea

pigs and store firewood, which could suggest that the actual model does not meet the

requirements of local families. Partner families recommended lowering the height of

stove, making more than one pot for each burner, using local manure mix to adapt

burners to the exact size of the pot and securing that chimney pipes are circular and have

a 15 cms. Diameter to avoide ash blockages, as potential ways of stimulating stoves’

usage.

c. Storage units: Defining a concrete structure for the storage unit that can efficiently

serve production demands of local families is important. One of the storage units built in

the most recent phase of the project was built with adobe under the same conditions of

the house. It required another month of work to be completed, but since the peak of

agricultural production had not been reached, the family did not see an immediate need to

complete it. In the meanwhile, produce was stored in the surrounding areas of the house.

Once finished, the storage unit did not seem to meet actual demands from the family

because more production was obtained as a result of their apparent improved economic

situation. Another family decided to reuse some of the adobe resultant from the old house

in their storage unit. Even though the adobe production equipment was offered to them,

the family opted for traditional adobe arguing problems to mobilize the new ones from

256 and to the construction site. Additionally, the family deemed unnecessary investing

money in the construction materials required by the new type of adobe for a storage unit.

Since the number of adobes kept from the previous home was insufficient for the size of

the desired construction, those adobes remain in the peridomestic areas as potential focus

of triatomines. Finally, one more unit was built with bricks, but without the necessary

safety measures to sustain it. Since family members think it can be easily open by

robbers, it is only used to half of its capacity.

d. Water and sanitation: Most of the latrines existing in these communities were built

seven years ago by an NGO called Foundation Uriel, in partnership with the local

government of Cariamanga and Loja Province Assembly. Observation conducted for this

research found structural problems such as falling doors, filtering roofs, and broken

toilets in most of the sanitary facilities built as part of that initiative. Depending on the

extent of the damages, families tend to leave them without reparation for long periods of

time and use provisional solutions in the meanwhile. For example, pipes conducting

residuals to the septic tanks can become exposed in the ground due to the continuous

activity of animals in the preridomestic area. Bringing more dirt can easily repair this

kind of damage and families usually act promptly to solve it. On the other hand, specific

damages that require additional resources, such as a broken hose or an unattached base

demanding reparations with cement, remain broken until some money is available. Most

families keep making use of the latrines until the decay forces them to find other

alternatives, usually the open fields. When asked about the health risks of this practice, a

community member expressed:

257

The latrine that the government gave to us is useless now; therefore, we have to defecate in the open air. That creates contamination because that is what dogs, chicken, pigs are going to eat later on. And of course that is a risk because those are also the animals we eat at home. Male, 33, Bellamaria.

Three out of the six non-partner families interviewed for this research—the three

of them located in Bellamaria— did not have sanitary facilities at all. The heads of

household of these families are younger members of the community, two of them sons of

the original families, who grew up making use of sanitary facilities at home. When the

need to build their own home came, they did not have enough money to build adobe

homes; therefore, they replicated traditional construction techniques in which sanitary

facilities were not included (mainly wood boards mixed with bahareque). They argued

that having a latrine is of interest for the family, but subjected to availability of resources.

In contrast, some of the homes recently constructed (with family resources, not HHHL

homes) included latrines located in the interior of the homes, an important variation from

traditional homes. Reasons argued for this decision include the presence of elders that

could be at risk while walking at night to the reach the bathroom, as well as reducing

exposure to environmental conditions leading to disease, especially during the rainy

season. Due to the high levels of specificity that construction of disposal systems

demands, studying partnerships with institutions specialized in the construction and

donation of these facilities is recommended.

Strategic considerations.

Under the assumption that subsequent phases of HHHL are going to be

implemented by institutions with more resources and expertise in construction projects,

the following strategy is suggested.

258 a. Intervention by community: A sequential intervention community by community is

suggested. Both community members and civil engineers involved in the Pilot phase of

HHHL mentioned increased costs derived from centralized production of adobe in one of

the communities. Therefore, intervening one community at a time while preparing the

other two to continue is recommended. This sequential intervention of infrastructure

improvement would start by mobilizing machinery for adobe production and conclude

with the construction of storage units. Health promotion efforts would continue for an

extended period of time.

Of the intervened communities, Bellamaria is the one that counts with better

conditions to be intervened with a full reconstruction project in the near future. In first

place, 32 of the families are included in a common title that gives them legal access to the

land they inhabit and work. This model of shared ownership was popular in the 60’s after

a land reform that facilitated occupation of haciendas by workers established within their

limits. Even though most of the signatories of the original tittles are dead or in late stages

of life, the initial agreement gave them the possibility of passing two occupations rights

to family members that have been taken by younger families currently established in

Bellamaria. This process has not been legalized in most cases; however, it depends more

of internal arrangements among inhabitant families than from external actors. It would

require additional support for HHHL to promote these dialogues among community

members.

Other conditions facilitating a prompt intervention at the community level in

Bellamaria are availability of resources derived from its closeness to the river —which

259 guarantees access to water sources throughout the year for agriculture purposes, as well

as extensive areas of shared property that provide appropriate conditions for cattle rising.

Additionally, 44% of the homes in this community were classified under category

5 by 2016’s decay analysis and 13.89% were classified under category 4, creating the

highest proportion of risk in the three communities. This data indicate a substantial

potential impact of the HHHL model in this community, first and foremost in terms of

health and safety.

These conditions also suggest that impact of the HHHL would be highest in

Bellamaria, which could generate important impacts for replication in other communities.

While the intervention in Bellamaria is occurring, it is suggested that HHHL facilitators

work in two specific factors in Chaquizhca and Guara (in that order): legalization of titles

and land tenure, as well as preparation of roads in partnership with the local government.

Even though Chaquizhca and Guara also present high proportions of risk (52.1% in the

former and 47.6% in the latter), accessibility and land tenure are major limitations faced

by community members that could substantially affect the intervention. Also, presence of

more homes in Category 1 of decay in Guara suggests that priority of the intervention is

lower.

b. Peridomiciles first: It is also recommended to start the intervention with reorganization

of peridomestic areas. A proper fence should be built first by partner families because it

facilitates relocation of animals and installation of separation practices for a longer period

of time. It is important to consider, however, that some homeowners have chosen

locations distant from community centers precisely with the purpose of keeping an

260 important number of animals around their home without bother other neighbors.

Addressing animals’ relocation as a priority previous to the intervention is particularly

important in Bellamaria, where ownership of domestic animals is substantially higher.

c. Temporary home: One of the conditions more difficult to follow for partner families is

the need to find a temporary house during the construction time. Even though it has been

solved in different ways (using an abandoned house, an empty room in a neighbor’s

home, a tent, or a provisional shelter), families had to experience multiple inconveniences

during this period. Moreover, it is possible to argue that in some cases they were even

more exposed to environmental conditions than in their original home. Family’s

transition to the temporary house requires planning and facilitation. It can constitute a

teachable moment as it provides opportunities to identify risk factors and special needs of

the family. This part of the process should only be done when the need of demolishing

the house is imminent due to the beginning of the construction. However, it is also

important to proceed in a sensitive manner, as families have expressed reticence to leave

their dwellings and expose their belongings. At this stage of the process it is useful to

count with outreach materials that can also supply storage needs for the family,

particularly plastic boxes and cans that can help to organize crops, produce and clothes.

d. Demolition: One of the main changes applied between the first home built by HHHL

and the simultaneous construction phase was that in the second case, homes were not

turned down through machinery but manually disassembled. Partner families expressed

their appreciation for this practice, not only because it reduced the emotional impact of

that moment in the process, but also because it allowed them to reserve an important

261 number of pieces from the previous house that they could reuse in the future. Wood and

tiles were used in pigs, guinea pigs and goat shelters, old doors were given away to other

neighbors, and some adobes were kept to be reused in basic shelters built to protect crops

in productive plots. This process can be done in two days with two people saving and

organizing materials, and two more tearing the house down. Selection of reusable

materials should also be planned with the partner family. It is important for the project to

count with strong arguments at this stage to advise partner families about materials that

can constitute a risk for triatomines’ reinfestation. Natural conflict can emerge because of

the different motivations of the involved actors: while HHHL frames risk in terms of

exposure to CD transmission dynamics, partner families understand these dynamics from

the point of view of their financial situation.

e. Construction times: Construction periods should be restricted to the dry season of the

year (mid-May through November). In first place, it is not possible to make adobe once

the rainy season has started because it slows down the drying period. Local families do

not have covered spaces that can protect all the adobes required for the construction for

such a long period of time. Additionally, humid dirt is not useful for adobe production

and it would not be possible for local families to collect the raw material for the

construction. Most importantly, people are especially busy working in their plots during

the rainy season (preparing the land for their own production) and can rarely work for

somebody else.

f. Animals’ shelters and storage units post-construction: These two points should be the

final phase of the infrastructure intervention. They cannot be underestimated, as

262 availability of animals’ shelters and storage unit facilitates implementation of health

promotion practices to be conducted within the home space. Particular attention should

be given to chicken, as families are quite used to feed them while conducting social

activities in peridomestic areas. Families have usually built chicken coops in trees

surrounding the house for them to nest and sleep, but it is important to reemphasize the

need to feed them as well in order to secure their relocation. Similarly, corn storage has

specific demands, as it has to be available throughout the year to feed chickens, pigs and

other domestic animals. During the harvesting time, it can be collected in important

amounts and families might need to use the space at home if no other alternative is

available. This last period has also been used to install productive gardens within the

home space.

Dialogic health promotion.

Trust is fundamental element in this systemic approach to disease prevention. By

accepting an intervention in their homes, families have allowed us to dismantle their

more valuable asset under the idea that they will be able to obtain a safer home. In this

context, it was important that representatives of the program were present at key

moments of the project not only to address questions and collect feedback, but also to

demonstrate knowledge and control over the intervention. As explained by one of the

interviewees, supervision of the process is critical:

The architect was always here (…) She supervised the construction crew and that is good. Many times she saw mistakes in the process and demanded construction workers to turn everything down to start from scratch. We could trust that things were correctly done because she was there to control them. Female, 37, Chaquizhca.

263

In this sense, different worldviews emerging during the intervention illustrated the

need to consider research as an ongoing learning experience that is constantly reframed

on the bases of what communities and staff learn about each other over time. An

interesting case occurred with one of the partners who asked to the local facilitator if the

intervention was being conducted in his home because he or any member of his family

had been diagnosed with CD. Since medical information of the family was never

requested or collected, his concern shows potential forms of stigma that could be

emerging as unintended consequence of the intervention. Research in this aspect is

recommended.

Similar to this case, community members have their own interpretation of the

actions conducted by HHHL. Many of the respondents in the socio-economic

questionnaire referred to HHHL contributions as ‘help’, which reaffirms existing

perceptions of HHHL as an aid —not necessarily health oriented—project. Participants in

the questionnaire posed questions about the temporarily of HHHL presence in the area

(‘How long are you guys going to be here?’) and directly requested support for

productive initiatives, as well as construction of irrigation systems and fences. These

requests could be an expression of how the health goals of the intervention are

overshadowed by the visibility of dynamics associated with the construction.However,

the health promotion model applied by HHHL purposely opens spaces for this kind of

requests, under the premise that knowing the priorities of the communities is critical to

inform decision making that enhances programmatic goals.

264

In any case, clearly informing and reinforcing the goals of the intervention to all

the actors involved at different stages of the process is a basic element of transparency

with the communities that should be systematically included in HHHL activities.

The role of local facilitation in this context cannot be overemphasized. In HHHL’s case,

local facilitators have led projects related with legalization of homes and plots,

construction of water systems, and multiple mediation processes on behalf of the

community with the local government, including legalization of electric systems. Their

understanding of the systemic nature of CD as a neglected condition, as well as the

systemic nature of home improvement as a life change opportunity, has been critical to

complete the proposed interventions.

The fact that the local facilitator that is permanently working in the communities

has experience in community organization, as well as many of the topics that are of

interest for community members, has increased trust in his work. From that perspective,

he has been able to provide important advice on construction issues and relationships

with local providers, as well as valuable ideas for the design of productive initiatives.

Similarly, local facilitators’ capacity to mingle and work along community

members has increased their capacity to conduct horizontal dialogues, particularly when

delicate or private issues are discussed. That was the case of initial dialogues about

families’ financial situation. The level of trust of local families in the role of the local

facilitation team is illustrated in the following quotes:

The facilitator walks, works and understands people down here. Male, 48, Bellamaria.

265

When all the work was completed at the end of the day, we used to sit with them in the porch to laugh for a little bit. I actually missed them when the construction was over. Female, 17, Chaquizhca. Many times I tell the engineer to stay with us for dinner. When we had good food, we share, but if we didn’t, we also felt comfortable offering whatever we had to him. Male, 55, Guara. Considering the relevance of the role played by local facilitators in the

implementation of the HHHL model, having one per community during the scaling up

phase of the project is recommended. This can facilitate interactions when more actors

are involved and secure consistency of health promotion processes when brought to scale.

Communication spaces.

The most important communication space created by HHHL is called “Visitas de

Porche” (Porch visits). This is a basic space of encounter created with partner families to

present the conditions of the intervention, follow up on potential doubts, design a plan

once the proposal has been accepted, and carry out data collection for research purposes.

Since it is conducted at the front porch of the home, it provides a transparent mechanism

to involve all family members from the very beginning of the process. It also creates

spaces of contact with community members and offers the opportunity to observe social

dynamics at the household level.

During the pre-intervention phase, Porch Visits were mainly focused in

explaining contributions expected from partner families along the process, including

labor, supervision and knowledge. However, the most recent intervention conducted in

partnership with Ecuador’s Ministry of Housing, also required contributions in cash.

Families came back to a folder containing the characteristic of the intervention when

266 rumors about the use of this money emerged. Providing that information in a printed

format was also important for the families to be able to review and pose questions later

on. A minimum of three visits followed this first encounter in order to collect doubts,

solve them when possible or transmit them to the team when needed. This moment in the

process requires paying close attention to all the questions suggested by the family and

providing answers as soon as possible.

The project also generated spaces for knowledge sharing between former and new

partners during the pre-intervention phase of the process. These scenarios have served as

an organic way of peer support that can complement the perspective provided by the

program with the critical reviews of families that have already gone through this

experience. These spaces have facilitated informed decision-making by expanding

information sources beyond the HHHL’s narratives. This level of community

involvement also made visible the extent of the impact of the intervention, which could

be associated with community members interest in subsequent phases of the program:

57.1% of the heads of household who expressed interest in implementing HHHL’s model

have participated in HHHL’s construction activities (developed with partner families),

72.7% have participated in any of the HLI’s projects, and 93.8% have heard about HHHL

homes.

During the construction process, empowering heads of household to assume a

supervision role and oversight has shown positive results because it facilitates

appropriation from early stages of the process. This appropriation can be illustrated in the

following quote:

267

I explained to the contractor that it was important to keep a level of understanding between the two of us. ‘If anything happens, you just need to tell me. My role, as owner of this house, is to tell you what I think works best for me.’ He gave me a lot of ideas and also asked me if I liked what he was doing. Because of that we could work well together. Male, 44, Chaquizhca. Similarly, the follow up process that comes after the intervention has been

perceived as a moment of knowledge exchange:

The facilitator only comes for a short time in each visit. It is good that he comes to visit to learn how the home was built, to ask questions. Sometimes he can see that something was not done well and correct to do things better the next time. Female, 43, Guara. Due to the private nature of some of the practices proposed in the follow up

phase, it is important to have an instance of reflection to provide an explanation about the

rationale for them. Mentioning that these practices have already been implemented by

other community members with positive results (Nieto-Sanchez et al., 2015), could

facilitate their adoption.

In terms of the health outcomes of the intervention, it is fundamental to bring the

purpose of creating healthy environments to the forefront of the process. Considering the

invasive nature of homes’ intervention, it is important to clearly state the protective

aspect of it. Making visible partners’ opinions about the impacts they have experienced,

could serve this purpose. Generating outreach materials for construction workers,

architects, local facilitators, and all members of the team in regular contact with partner

families can also be useful to maximize spaces of health promotion along the process.

Income generation opportunities.

While conceiving the home space as a system in itself, HHHL model has also

looked for opportunities to connect the intervention with larger communitarian dynamics.

268 Community members, for example, often refer to water systems construction as a project

of high impact at the community level:

What was done with the water system was excellent help, very good, no doubts. Male, 30, Bellamaria However, income opportunities associated to home’s construction have been

approached by the project in a systematic way. As mentioned before, local families are

used to participate in the construction of their own homes, but also to hire neighbors or

construction workers to complete difficult or physically demanding tasks such as

installing roofs or making the adobe for their homes. A community member who has

worked in HHHL construction processes compares traditional home construction

techniques with the ones proposed by HHHL:

The problem of this [traditional] adobe is that it has to be mixed with your feet. You need to make a hole in the ground that will be turned into a pool to fit around 30 wheelbarrows of dirt, two or three sacks of grass and lots of water (I don’t know the exact amount because you need to refill when water filters). With that amount you can get up to 20 adobes. For the other adobe, you need more people because three will be mixing in the machine and one more will be refilling the molds. The other problem with the old adobe is the weight: it is extremely heavy when you have to complete in the final parts of the wall, whereas the new adobe never weights more than 12 pounds. It is really easy to lift it or even throwing to somebody else if that person is at the top of the wall. Male, 30 year, Bellamaria. Because of the efficiency of the new techniques, community members think that

adobe production could be an interesting income generation alternative:

It is a very good idea to have groups of people making adobe. If a person cannot make his own adobe and can afford paying for it, you are generating job opportunities for those who don't have one. Male, 44, Bellamaria. The possibility of selling adobes can be explored, as there is an established

practice of paying community members for making the blocks under traditional models.

269 There has also been interest from people external to the communities in the technique

applied in HHHL homes. Using the acquired knowledge as an expertise now existing in

the communities is an interesting option to be explored in following stages of the process.

It is also important to consider that home construction, as well as other productive

activities can expect collaboration of community members under specific circumstances.

Even though the minga model (community work) has been part of the organizational

structure of these areas, it has been losing relevance in the last decades. Some of the

interviewees showed nostalgia of previous times when community work used to happen

in a more spontaneous and organic way:

There was a time when people used to help one another in harvesting times. Back then people were not focused on their plot but there were organized in groups of nine people to work every day in a different plot. That was beautiful. Female, 29, Bellamaria. However, larger interventions should not be planned under the assumption of

community work being provided for free. Since labor is the main resource for every

family, unpaid collaborations can only last for short periods of time, as people have to

return to their work as soon as possible. In these cases, families that request this kind of

collaboration from their neighbors have to pay back with work when requested and

provide food for all the crew. Partner families have used this structure for construction of

fences, excavation of canals, and adobe production.

The construction of HHHL homes has generated additional sources of jobs in the

communities. In first place, the project has hired people previously certified in

construction techniques by the National Professional Training Service (Servicio Nacional

del Capacitación Profesional de Ecuador, SECAP). This training, organized by HLI in

270 2012, provided a base of knowledge in constructions with mud that is now replicated.

People who took this training have been prioritized for adobe production, trusses

assemble, and home construction. The cycle of learning is explained by one of the

trainees:

I have learned a lot from this project. Unlike others that didn’t even go to the [SECAB] classes, I’ve been practicing what we learned. It was not knowledge to keep on paper. I think that it was not interesting for some people, but it was interesting to me. I just missed one class and then I talked to the professor, caught up and passed the test (…) The only thing I cannot do in these homes is the floor because it needs precise measures. Other than that, I can do everything: I have made adobe, raised walls, installed doors and windows, built roofs, and fixed kitchens. I can even read blueprints. Male, 30, Bellamaria. Similarly, partner families have hired community members as construction

workers to reach the number of non-qualified labor required to conclude the process

within the agreed timeframe (two to four months). During the negotiation, partner

families agreed to have at least two people working at all times in the construction (one

of them was generally one member of the family). The possibility of supporting

community members with emerging jobs was explained by one of the community

members hired by HHHL:

I was working in the construction of the homes when the construction of the water system in Bellamaria began. Since it was not possible to be in both places, I hired my brother in law to cover my part in the water system. That way I was making some money and paying to him a little bit less, but we both had a job. Male, 30, Bellamaria.

Exploring home construction techniques under a more systematic model of

community work is recommended. Partner families and community members who have

taken part of previous construction processes should be consulted to generate an

organization model that could be adjusted to the dynamics of agriculture production.

271

Finally, the lack of jobs in the region creates other challenge that should be

carefully observed by the program: ongoing migration. Interviewees explained the impact

of this situation in their decision about staying or leaving the communities:

Here we don't have a factory or a boss that can hire us for a monthly salary. It is impossible to think that we will get a job for one or two months here. Male, 55, Bellamaria. Recently my wife and my daughter have been sick, so poverty is striking us. We don't have a lot of sources to get money from. Here you can pass the day with cassava and salt because the weather is good. However, there is no money, nor jobs. If we want a job, we need to go somewhere else. Male, 46, Bellamaria. Under these circumstances, community members are forced to migrate constantly

to places with more job opportunities, usually gold mines, or shrimp production

companies located in provinces nearby. Internal common destinations are Quito,

Guayaquil, and Santo Domingo in Ecuador, whereas USA and Spain are usually the route

of international migrants. This factor is brought both by lack of paid jobs and education

opportunities, as well as ongoing trend of urbanization in the country. The words of a

community member expressed this concern:

Our situation in these communities has worsened throughout the years because young people do not want to work here anymore. Only old people like me. Young people here do not like the countryside anymore, they only want to go to the city. When I was young, most children wanted to stay with their parents and help them working the land. We used to help our parents, our neighbors. But that has changed a lot (…) Sometimes I wonder about our future: what is going to happen with us if our children do not want to stay here? Male, 49, Chaquizhca. Cultural values dictate ongoing responsibility and reciprocity from children to

parents, expressed as economic and social supervision over time. In this sense, the

presence of adult children that work in other cities has facilitated families’ decision-

making about assuming financial responsibilities associated with home improvement.

272 However, current trends create an important question for HHHL model: what is the

expected time of usage of an improved home in terms of family occupation? Most of the

questionnaire respondents (86%) stated that they are planning to stay in the communities

for the next five years; however, this answer should be carefully analyzed under the

scope that most heads of household interviewed for this research were in the 51 to 60 age

group, which represents people that are already established in the communities, and do

not include younger members of the family with other perspectives for their own lives.

Studying migration routes to determine foci of CD transmission in migrant population is

also recommended (Ventura-Garcia et al., 2013).

Conclusion

Several authors have called for a reassessment of the idea of cost-effectiveness as

most important criteria to establish viability of eradication, elimination, and control

interventions in NTD (Bardosh, 2014; Hastings, 2016; Parker & Allen, 2013). Instead,

they have proposed deeper understanding of the realities of families exposed to these

diseases that could lead to solutions designed to address structural inequities that are at

the roots of individual and communities’ most pressing needs. In this document I have

outlined a plan for scaling up Healthy Homes for Healthy Living’s model that addresses

strengths and limitations for sustainability identified by partner families as explained in

ancillary grounded theory study. Together, these documents provide criteria to look at

sustainability as a factor of families’ agency over the proposed solution. HHHL has

created opportunities to expand knowledge derived from systemic approaches to disease

prevention in which direct encounters between scientists, architects, health promoters and

273 communities come together to address the complexity of Chagas disease problematic. I

am convinced that HHHL is not only a sound approach to disease prevention, but first

and foremost, an opportunity for social transformation that can truly impact the lives of

marginalized populations.

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Appendix A: Interview Guide for HHHL Partner Families

Title of Research: Towards a theory and scaling up strategy of a model for sustainable prevention of Chagas disease: An ethnographic grounded theory study

Date: Interviewee (position in the family): Age: Introduction Thank you so much for welcoming me into your house and accepting talking to me. I would like to talk to you today about the use you give to your home. The questions I am going to ask to you are about activities you conduct inside and outside the house, as well as your cleaning and maintenance practices. I also would like to know about the changes you have experienced after occupying this new space. In case that you want to participate in this study, I’ll check with you a document in which I explain that all the information you share with me during this interview will be confidential, that I will protect your privacy, and that you can refuse to answer any question or stop this interview at any given time. Once you have signed that document, we can start with the interview. Administration: The following set of questions will be considered generative and will be asked to all the participants. Follow up questions will be introduced as a result of their answers. Considering the length of this questionnaire, this interview can be administered by specific segments. Informed consent will be obtained in each administration. Before and after implementing the Healthy Homes for Healthy Living Model

How do you remember the previous house? What do you remember of the design process? Why did you decide to accept the proposal suggested by HHHL? What is your most important memory of the construction process? In your opinion, what is the most significant change that has occurred after the

construction of the new house? Have you identified any negative impact? What do you think is the most significant change experienced by the family in

general? Have you noticed any change at the community level? How have your neighbors

reacted to the new construction? What do you think of the house? What do you think of the new peridomicile? Are there any new activities that you do in this house that you did not use to do in

the old house? Are there activities that you use to do in the previous house that you do not do in

the new house? Are there new people living in your house now?

301

Is there any particular place of the old house that you miss/want back? Why? Is there any particular spot of the house that you particularly like? Would you like

to take a picture of it? Why do you like it?

Vector transmission control

• Have you seen chinchorros inside the new house? Can you remember where and which time of the year? Have you seen them lately?

• Have you seen chinchorros in the patio of your house? Where and in which time of the year? Have you seen them once the construction was completed?

• Have you seen any other bug inside he house lately? Did you use to see them more often in your previous house?

• What use do you give to doors and windows? Have you had any problem using them?

Intersection with sanitation and water sources

Where does your family usually take showers? Has this changed after the construction was complete?

Where does you family Do you have any sanitary facility? Does you family use it? Where do disposal go

to? Has this changed since the construction was completed? Where does the water you use at home come from? Where does trash go?

Management of zoonotic aspects of Chagas disease

• Where were domestic animals placed before the construction? Where are they placed now?

• Have you noticed important changes in these animals as a result of this change? • What is the main use you give to the animals present in your patio? • What are the main activities you conduct in domestic and peridomestic areas of

your home? • What are the main uses you give to the plants around the home? • Have you seen squirrels and raposas around your home? • What do you use the piles of materials stored around the home? • Where do you store crops and tools?

Community participation

In which moments during the construction process did you count with the help of other members of the community?

What do you think of their help?

302

Would have you liked to count with more support form other members of the community in this process?

How did the adobe factory work? What do you think of the idea of producing abobe as an income generation

alternative for members of the community? Why? If that is the case, how should it work? What do you thin of working with other community members in productive

activities? Which comments have you received of other community members about the new

house? How have your neighbors reacted to the new house?

Integration with the health sector

Did any institution help you out during the constriction process? Which ones? Do you think this house protects the health of your family? If so, how? Has any member of you family felt sick in the last weeks? If that was the case,

which type of treatment did they receive? Has any member of your family visited any doctor in the last few weeks? What

was the reason? Do you have medicinal plants around your house? Would you like to have some?

Family economy

How did you fund the construction process? Did you get any financial commitment to complete the payment for the house? How was the economic situation of the family before the construction? How was the economic situation of the family during the construction? How is the economic situation of the family after the construction? Are you spending more money now? If so, how?

Future plans

What would you like to do with your house in the future? What would you like to change of this house if you could? What do you think is

necessary to accomplish this change? How do you picture this house in five years? How do you picture it in 20 years

from now? How do you imagine your community in ten years from now?

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Appendix B: Socio-economic Survey for Communities at Large

Title of Research: Towards a theory and scaling up strategy of a model for sustainable prevention of Chagas disease: An ethnographic grounded theory study

Community: Home code: Date: Interviewer: Interviewee (position in the family): Age: N. Question Answers Codes Follow up question

1 Who lives in your house?

Relationship, ages, sex, permanent or temporal

2 Is any member of your

immediate family living in another city?

Yes 1 Where? No 2

DN/DA 99

3 Who is the breadwinner in the house?

Mom 1 Why? Dad 2

Both 3 Children 4 Other? 99

4 Do you have legal titles

over the land where your house is bult?

Yes 1 Why? No 2

DN/DA 99

5 Do you have legal titles over the land you work?

Yes 1 Why? No 2

DN/DA 99

6 How long have you lived in this house?

7 How long ago was this

house built?

8 Have you modified this house recently?

Yes 1 How? No 2

304

DN/DA 99

9 How far is the closest road?

More than 1 hour 1 How ofthen do you go to that road?

Between 1 and 2 hours 2

More than two hours 3 DN/DA 99

10 Which form of transport do you use more often?

Car 1

What do you use this form transport for? How frequently?

Ranchera 2 Animal 3 Walking 4 Other? 5 DN/DA 99

11 How necessary do tou

think it is to improve the structure of your home?

Not necessary 1 Why? Small need 2 Somehow needed 3 Needed 4 Really needed 5 DN/DA 99

12 How urgent do tou think

it is to improve the structure of your home?

Not urgent 1 Why? Not very urgent 2 Somehow urgent 3 Urgent 4 Very urgent 5 DN/DA 99

13 if you could, which part of the house would you

like to modify first?

Roof 1

Which kind of improvement would you like to carry out?

windows 2 Floors 3 Walls 4 Doors 5 DN/DA 99

14 if you could, which part

of the peridomicile would you like to modify first?

Fence Why? Door Garen Animal shelters

305

Storage Other

15 Would you like to rebuild your house entirely?

Yes 1 Why? No 2 Maybe 3 DA/NA 99

16 If that is the case, which materila would you use?

Adobe 1 Why? Bricks 2 Cement 3 Block 4 Other 5 DN/DA 99

17

Have you heard of the houses built by Catholic

University (Healthy Homes for Healthy

Living)?

Yes 1 What is your opinion about these homes?

No 2

DN/DA 99

18

Have you or any other member of your family

participated in any of the construction activities

associated with HHHL?

Yes 1 Which ones? No 2

DN/DA 99

19 Would you like your

house to participate of a similar process?

Yes 1 Why? No 2 DN/DA 99

20

Nothing 11

Which resources would you be willing to invest to fund this improvement?

Savings 1 How much?

Products' commerce 2 What kind of products?

Animal's commerce 3 What kind of animals?

Loans with family and

friends 4 Remittances 5

306

Credits with the national

government 6 Credits with banks 7 ¿Cuáles bancos?

Labor 8 Loans with small

funding agencies 9 Other? 10 ¿Cuál?

DN/DA 99

21 Which of the following activities do you work

on?

Farmer in your own plot 1 Which one of these is your main activity?

Farmer in somebody else's plot 2

Do other members of your family work in any of the previous activities?

Construction worker 3

How frequently does the head of household travel to other regiosn to find jobs?

Driver 4 To which regions? Animals raising 5

Day laborer 6 Other 7

22 Do you receive any

subsidy from the government?

Yes 1 Who was it assigned to? When did you get it? How muh did you get?

NO 2

DN/DA 99 23 Have you received any Yes 1 Who was it assigned

307

subsidy from MIDUVI? NO 2 to? When did you get it? How muh did you get? DN/DA 99

24 Does anybody in the

house receive the disability subsidy?

Yes 1 Who was it assigned to? When did you get it? How muh did you get?

NO 2

DN/DA 99

25 Do you have access to the community water system

in your community?

Yes 1 Why? Did you participate in that process? For how long?

NO 2

DN/DA 99

26

Which of the following options do you use more often for your sanitary

needs?

Toilet 1 Latrine 2 Bushes 3 DN/DA 99

Open water source (River/lake/stream/pond)

1 Why?

27 Where does the water you

use for cooking come from? Bore hole/well

2

Tap 3 Other 4 Kitchen 1 Why? Outside the house 2

28 Where do you cook? Bedroom 3 Other? 4

29 What is the most common source of energy for cooking in the house?

Gas 1 Why?

Firewood 2 Other? 3

30

What did you invest your money in durimg the last month?

Food 1 What was the most importat expense you had to assume? Health 2

Home refurbishment 3 Education 4 Animals' care 5

Agricultural production 6 Transportation 7 Other 8

31 Are you insured to the Yes 1 Why? Which services

308

Farmers' insurance? No 2 do you receive?

DN/DA 99

32 Are you member of any local organization?

Farmers organization 1 Which one? What do you think of it?

Savings cooperative 2 Artisans 3 Union 4 Other? DN/DA 99

33 Do you know if this organization funds housing projects?

Yes 1 NO 2 DN/DA 99

34 In dolars, how much is the monthly income of

your family?

Under 100 1 Where does this income come from?

Between 100 and 300 2

Between 300 and 500 3 More than 500 4 DN/DA 99

35 Are there times of the

year in which your income increases?

January-March 1 Which ones? April-June 2 July- September 3 October-December 4 DN/DA 99

36 In those times of the year,

how much does your income increase?

Up to 100 1 Why?

Bteween 100 and 300 2 More than 300 3 DN/DA 4

37 Are there times of the

year in which your income decreases?

January-March 1 Which ones?

April-June 2 July- September 3 October-December 4 DN/DA 99

38 In those times of the year,

how much does your income decrease?

Up to 100 1 Why?

Bteween 100 and 300 2 More than 300 3

309

DN/DA 99

39 Would you like to stay in this community for the

next five years?

Yes 1 Why?

NO 2 DN/DA 99

40

Have you participated in any of the activities

conducted by the Healthy Living Initiative?

Yes 1 Which ones? Why?

NO 2

DN/DA 99

41 Do you have any question for us?

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