The participation of NGOs in healthcare

The participation of NGOs in healthcare

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The participation of NGOs in healthcare the case of pediatric cancer treatment in Argentina
Vindrola Padros, Cecilia
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[Tampa, Fla]
University of South Florida
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Health services
Latin America
Dissertations, Academic -- Anthropology -- Masters -- USF ( lcsh )
non-fiction ( marcgt )


ABSTRACT: The deterioration of the Argentine public health system has lead to an increase in non-governmental involvement in the provision of health services. The emerging relationship between these sectors is filled with tensions, contradictions, and negotiations, reflecting the historical trajectory of non-governmental organizations (NGOs) and the transformations of the public health system. These problems are specifically evident in programs that focus on pediatric oncology treatment due to the fact that ideas about childhood, chronic disease, and mortality construct an unusual collaborative framework between governmental and non-governmental healthcare professionals. Pediatric cancer contradicts traditional notions of childhood; it points out the ambivalences associated with death; and represents a challenge to biomedical practice.This thesis provides a historical reconstruction of pediatric medicine in Argentina with an emphasis on the involvement of non-governmental actors in treatment and policymaking. Furthermore, it presents an analysis of the discourses and practices of the staff of an NGO that collaborates with 5 public hospitals in Buenos Aires, providing medical treatment, psychotherapy, and other forms of assistance to pediatric oncology patients and their families. The purpose of this investigation was to determine the main difficulties experienced by the NGO's staff members and the strategies they used to deal with problems.By carrying out thirty open-ended structured interviews and participant observation in two public hospitals in Buenos Aires, the research indicated that the main problems were the lack of training on medical procedures and hospital policies received by the staff and the fact that they were not offered counseling to cope with the emotional consequences of working with pediatric oncology patients and their families. As a consequence, many staff members experienced feelings of frustration and abandoned the organization prematurely, affecting the type of services provided to the children and their families. This information was formulated into a report with recommendations for improving the training offered to the staff and the internal communication of the organization.
Thesis (M.A.)--University of South Florida, 2009.
Includes bibliographical references.
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by Cecilia Vindrola Padros.

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Vindrola Padros, Cecilia.
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The participation of NGOs in healthcare :
b the case of pediatric cancer treatment in Argentina
h [electronic resource] /
by Cecilia Vindrola Padros.
[Tampa, Fla] :
University of South Florida,
Title from PDF of title page.
Document formatted into pages; contains 205 pages.
Thesis (M.A.)--University of South Florida, 2009.
Includes bibliographical references.
Text (Electronic thesis) in PDF format.
ABSTRACT: The deterioration of the Argentine public health system has lead to an increase in non-governmental involvement in the provision of health services. The emerging relationship between these sectors is filled with tensions, contradictions, and negotiations, reflecting the historical trajectory of non-governmental organizations (NGOs) and the transformations of the public health system. These problems are specifically evident in programs that focus on pediatric oncology treatment due to the fact that ideas about childhood, chronic disease, and mortality construct an unusual collaborative framework between governmental and non-governmental healthcare professionals. Pediatric cancer contradicts traditional notions of childhood; it points out the ambivalences associated with death; and represents a challenge to biomedical practice.This thesis provides a historical reconstruction of pediatric medicine in Argentina with an emphasis on the involvement of non-governmental actors in treatment and policymaking. Furthermore, it presents an analysis of the discourses and practices of the staff of an NGO that collaborates with 5 public hospitals in Buenos Aires, providing medical treatment, psychotherapy, and other forms of assistance to pediatric oncology patients and their families. The purpose of this investigation was to determine the main difficulties experienced by the NGO's staff members and the strategies they used to deal with problems.By carrying out thirty open-ended structured interviews and participant observation in two public hospitals in Buenos Aires, the research indicated that the main problems were the lack of training on medical procedures and hospital policies received by the staff and the fact that they were not offered counseling to cope with the emotional consequences of working with pediatric oncology patients and their families. As a consequence, many staff members experienced feelings of frustration and abandoned the organization prematurely, affecting the type of services provided to the children and their families. This information was formulated into a report with recommendations for improving the training offered to the staff and the internal communication of the organization.
Mode of access: World Wide Web.
System requirements: World Wide Web browser and PDF reader.
Advisor: Linda M. Whiteford, Ph.D.
Health services
Latin America
0 690
Dissertations, Academic
x Anthropology
t USF Electronic Theses and Dissertations.


The Participation Of NGOs In Healthcare: Th e Case Of Pediatric Cancer Treatment In Argentina by Cecilia Vindrola Padros A thesis submitted in partial fulfillment of the requirements for the degree of Master of Arts Department of Anthropology College of Arts and Sciences University of South Florida Major Professor: Lind a M. Whiteford, Ph.D. Rebecca Zarger, Ph.D. Heide Castaneda, Ph.D. Date of Approval: 03/23/09 Keywords: health services, children, Latin America Copyright 2009 Ceci lia Vindrola Padros


Acknowledgments This thesis could not have been possible without the active involvement of the Childrens Cancer Foundations administration and staff. They participated during all phases of the research project and the passi on and dedication they showed towards their work served as constant sources of motiva tion for me. Their experi ences and the lessons that I learned through this project ar e reflected in the following pages. This investigation was carried out thanks to the support provid ed by the FulbrightGarcia Robles Grant, AAUW Internationa l Fellowship, CONACYT Scholarship, and the University of South Florida. I am particul arly thankful for the guidance and motivation that my advisor, Dr. Linda Whiteford, gave me throughout the entire research process, and for the unconditional support provided by my committee members, Dr. Heide Castaeda, and Dr. Rebecca Zarger. Finally, I would like to thank my pare nts, husband, and brother for always reminding me of the truly important things in li fe. It is due to their history, experiences, and ideas, that I have selected Argentina as my place of research and inspiration.


i Table of Contents List of Tables iii List of Figures iv Abstract v Chapter One: Introduction 1 Chapter Two: Theoretical Framework 7 The Anthropology of Childhood 10 Defining the Borders of the Anthropology of Childhood 16 Research and children 18 Research about children (and parents) 19 Research with children 20 Research by children 23 Research about childhood 25 The Anthropology of Childhood within Larger Anthropological Debates 27 Why Cancer? 32 Using a Micro Perspective to Study NGOs 38 The Literature on NGOs in Argentina 39 Summary 44 Chapter Three: Methodology and Setting 46 Archival Research Methodology 48 Ethnographic Methodology 53 Data Analysis 57 Data Interpretation and Dissemination 60 Ethical Considerations 61 Fieldwork Setting 63 Chapter Four: The History of Pediatric Medicine in Argentina: the Role of the Sociedad de Beneficencia 65


ii NGO Involvement in the Provision of Healthcare Services 65 The Sociedad de Beneficencia 67 The Institutionalization of Childhood 72 The Professionalization of Pediatric Medicine 76 Infrastructure 78 Medical Education and Practical Training 86 The Dissemination of Medical Knowledge 92 Conclusions 95 Chapter Five: The Childrens Cancer Foundation 98 History of the Childrens Cancer Foundation 99 Current Activities 101 Sedes 105 Population 108 Staff 111 Demographics 113 Reasons for Working at CCF and the Initiation Process 118 Training and Supervision 122 Internal Communication 125 Diagram Analysis 134 Conclusions and Recommendations 136 Reasons for Working at CCF and the Initiation Process 136 Training and Supervision 138 Internal Communication 139 Chapter Six: Conclusions 143 Looking at NGOs within the Public Health System 144 Working with Cancer Patients 148 Working with Children 150 Expanding NGOs: a Look at Organizational Development 151 Areas of Future Research 155 References 157


iii List of Tables Table 1. Documents Consulted from the Collection Instituciones de la Sociedad de Beneficenc ia y Asistencia Social 50 Table 2. Documents Consulted at the Biblioteca de la Facultad de Medicina, Bs.As.Argentina 52 Table 3. Courses Imparted in the Casa de Expositos up to 1944 (Acta 12/07/14) 90 Table 4. Distribution of Staff Members by Sede 117


iv List of Figures Figure 1. Diagram Elaborated by the Soci edad de Beneficencia to Illustrate the Different Institutions through Which Boys and Girls Could be Canalized 80 Figure 2. Map of Argentina with CCFs Sedes 100 Figure 3. Timeline Representing the History of CCFs Sedes 104 Figure 4. Organization of CCFs Personnel 113 Figure 5. Age of the Members of CCF s Staff that Were Interviewed 114 Figure 6. Distribution of In terviewees by Occupation 115 Figure 7. Number of Years each Interv iewee Worked in the Organization 116 Figure 8. Number of Children each In terviewee Had at the Time of the Interview 117 Figure 9. Social Network Diagra m of CCF Indicating Communication within and among Sedes 129 Figure 10. Diagram Made by Mansilla Volunteer 132 Figure 11. Diagram Made by Mansilla Volunteer 133 Figure 12. Diagram Made by de Elizalde Volunteer 133 Figure 13. Diagram Made by Posadas Volunteer 134 Figure 14. Diagram Indicating the Leve ls of Internal Communication I Identified in CCF 139


v The Participation of NGOs in Healthcare: Th e Case of Pediatric Cancer Treatment in Argentina Cecilia Vindrola Padros ABSTRACT The deterioration of the Argentine public he alth system has lead to an increase in non-governmental involvement in the provisi on of health services. The emerging relationship between these sectors is filled w ith tensions, contradictions, and negotiations, reflecting the historical trajectory of non-governmental organizations (NGOs) and the transformations of the public health system. These problems are specifically evident in programs that focus on pediatric oncology treat ment due to the fact that ideas about childhood, chronic disease, and mortality cons truct an unusual collaborative framework between governmental and non-governmental hea lthcare professionals. Pediatric cancer contradicts traditional notions of childhood; it points out th e ambivalences associated with death; and represents a ch allenge to biomedical practice. This thesis provides a historical reconstr uction of pediatric medicine in Argentina with an emphasis on the involvement of non-governmental actors in treatment and policymaking. Furthermore, it presents an anal ysis of the discourses and practices of the staff of an NGO that collaborates with 5 public hospitals in Buenos Aires, providing medical treatment, psychotherapy, and other forms of assistance to pediatric oncology


vi patients and their families. The purpose of th is investigation was to determine the main difficulties experienced by the NGOs staff members and the strategies they used to deal with problems. By carrying out thirty open-en ded structured interviews and participant observation in two public hospitals in Buenos Aires, the resear ch indicated that the main problems were the lack of training on medi cal procedures and hospital policies received by the staff and the fact that they were not offered counseling to cope with the emotional consequences of working with pediatric oncology patients and their families. As a consequence, many staff members experienced feelings of frustration and abandoned the organization prematurely, affecting the type of services provid ed to the children and their families. This information was formulated into a report with recommendations for improving the training offered to the sta ff and the internal communication of the organization.


Chapter One Introduction The fact is that were are non-governmental; we do not have political interests (Carla, volunteer c oordinator for the Childrens Cancer Foundation). The quote cited above was one of the first things that Carla told me when I met her. The apolitical nature of the organization where she worked was something that she felt she needed to reiterate throughout th e interview. The cat egorization of nongovernmental organizations as something exclusive to government institutions is not something particular to the Childrens Ca ncer Foundation (CCF), but is common in Argentine society, even in those cas es where government-non-governmental collaboration is evident. Despite such claims, anthropologists, among other social scientists, have highlighted the political nature of NGOs a nd other forms of civil society organization pointing to their involvement and promotion of development programs, public policies, and international campaigns 1 The politicization of non-governmental organizations and 1 Clarke (1998), Elyachar (2005), Escobar (1995), Ferguson (1990) Fisher W. (1997) Fisher J. (1998), Rahman (2005). 1


social movements in general has been analyzed in the context of hu man rights struggles, and womens, labor, and indi genous movements (Alvarez et al. 1998). However, few have undergone the task of analyzing the role played by these actor s in the provision of healthcare while focusing on the relationship between NGOs and the State 2 In the case of organizations focused on medical care a nd patient assistance, deciding who can live and who can die certainly brings with it evid ent ideological connotati ons. Therefore, one could argue that there is nothi ng more political than healthcare (Navarro 1976). But what happens when the individuals administering the health services (or contributing largely to the public administration of thes e services) are labeled as apo litical, but in reality are not? What is the reason behind the erasure of a longstanding history of government-nongovernment collaboration in Argentina and the depiction of unrealistic relationships between these actors in current anthropological literature? The argument presented in this thesis is that the main reasons for the reproduction of the apolitical nature of NGOs in Argen tina is due to the lack of historical and ethnographic studies of NGOs in the country. As a consequence, many authors have neglected the fact that the cr eation of the public health syst em that operates in Argentina today is the product of the collaborati on between different types of charitable organizations, promotion societies, and communal groups with the State. These organizations made vast contributions to the creation of hospital infrastructure and implementation of campaigns, but also participated in less advertised activities like the training of physicians, the import of ideas on public health created abroad, and the 2 Some notable exceptions are Gilson (1994), Pfeiffer (2003), Redfield (2005). 2


legitimating of medical specia lties through specific journals, academic associations, and professional meetings. This history of NGO involve ment creates a particular terrain for contemporary organizations interested in the provision of healthcare where particular channels have been created to facilitate thei r participation, but at the same time the deterioration of the public health system and the increased de mand of the population bring with them new obstacles and restraints. This contempor ary stress on NGO resources and personnel is what is of greatest concern to many organizatio ns, but these challenges hardly appear in academic literature. The reason for this is th at most authors have carried out macro-level analyses of organizations, focusing on their expansion and absorption of the responsibilities once in the hands of the State. In doing so, they have not been able to see the particularities and complexities of NGO involvement and have failed to include the perceptions of the people that make th e work of these organizations possible. This thesis was created with the purpose of filling in these gaps in the literature on NGOs by combining historical and ethnogra phic research with two organizations involved in the provision of health services to children in Argentina: the Sociedad de Beneficencia (1823 to 1947) and the Child rens Cancer Foundation (CCF) (1994 to present). This study provides a historical reconstruction of the Sociedad de Beneficencia through the use of archival reco rds. It also analyses the ro le played by the women that composed the organization in the professi onalization and legitimating of pediatric medicine in the country by looking at their pa rticipation in the creation of public health infrastructure, promotion of medical e ducation and practical training, and the dissemination of medical knowledge. 3


The role played by CCF today in the provi sion of healthcare to pediatric oncology patients and their family members is presen ted through the eyes of the organizations staff. Their views on the organization, the publ ic health system, and their day to day activities serve as demonstration of the partic ularities of working with children in this context. Furthermore, the information presente d here points to the di fferent fractures that commonly exist within NGOs, the problems in communication, and the coexistence of multiple interests and conceptions of the role of the organization. Both components of the investigat ion point to the need for studying nongovernmental organizations in longitudinal fa shion and in smaller contexts. In other words, they demonstrate the need for a microanalysis of the organization, its staff, and the recipient population in order to highlight the nuances of a particul ar context while not losing sight of its interconnectedness with larger political a nd economic processes. To facilitate the presentation of the info rmation collected through this research, the thesis is organized as follows. Chapter Two presents the theoretical framework that informed the investigation. The thesis drew from literature in the anthropological study of childhood, studies of NGOs, and critical medical anthr opology in order to understand the role of healthcare provisi on by NGOs while taking into c onsideration the effects of working with children, on the one hand, a nd treating pediatric oncology patients on the other. Chapter Three provides information on the methodology and the setting where the research took place. It presents the methods of data collection and analysis, as well as the ethical considerations that we re taken into account before, during, and after the research 4


process to ensure respect for participants, th e minimization of harm, and the assurance of social justice. This chapter also contai ns information on Argentine history and the changes that NGOs and the public health system have experienced through time. Chapter Four focuses on the role played by the Sociedad de Beneficencia during the creation and establishment of pediatric medicine in Argen tina. It begins with a broad overview of the creation of government interest in children and the in stitutionalization of childhood and continues with a description of th e steps that led to the professionalization of pediatric medicine and the importance of the participation of the Sociedad in this process. Chapter Five contains the results of the ethnographic research carried out with CCF. A brief overview of the organization, its history, internal organization, and the main characteristics of the staff are included to provide the reader with an adequate background. The chapter, however, focuses mainly on the views of the staff regarding three main issues: their reasons for worki ng at CCF, their training and supervision, and the internal communication of the organiza tion. There are two main reasons for this. First, these topics consistent ly appeared in the interviews with the staff as points of disagreement and distress. Second, the ad ministration of the organization expressed interest in obtaining an assessment of these issues, especially internal communication, because they were aware of some of the problems that the st aff was experiencing. The research for this thesis was desi gned with the purpose of having a direct application and providing benefit to those under study. Therefore, the interests of the administration and the staff regarding the conten t of the investigation were highly valued 5


and integrated into the research design a nd discussion. Chapter Five ends with the recommendations that I made to the admini stration in the Summer of 2008 regarding the three issues presented and the ways in whic h they have transformed my comments into action. Chapter Six contains the conclusions of the thesis where I delineate the contributions that historical and ethnographic research ca n make to the study of NGOs and to the analysis of their involvement in he althcare. It also high lights the importance of carrying out anthropological st udies that can have a dire ct application and provide tangible benefits to the people who participate in research like the project described here. 6


Chapter 2 Theoretical Framework Elisa: Anthropology is the study of man in society, right? Cecilia: I guess you could say that. Elisa: Then, what are you doing here? (Field Notes, June 10 th 2008) This conversation took place during one of the interviews that I carried out with a volunteer of the Childrens Cancer Foundation. The quotes end where they do, because at the time I had no direct response to E lisas question. After further thought, her comments allowed me to think about the way that anthropology is conceptualized and how we, as anthropologists, contribute to these ideas. It turned my attention to the popular topics, frameworks, and field sites we use and reminded me of the gaps in the literature that I attempted to fill with this research. When I first read Naders Up the An thropologistPersp ectives Gained from Studying Up (1972), I was going through a point in my anthropological training when I was feeling saturated, and quite fed up I mi ght add, with the research that was taking place in my department and the one presente d in Latin American anthropology meetings. It seemed as though if you werent working in an indigenous community or urban lower class population, your work had no relevance to the discipline. Naders (1972) article was like a breath of fresh air and it motivated me to search for my topic of interest among a different population: the middle and upper classes. 7


My interest was geared towards non-gove rnmental organization, not really in terms of what they do, but of who works in them (or for them) and why. My previous consultation of Escobars (1995) literature had made me extremely suspicious and critical of the development industry and their role in Latin America. I mistakenly came to see all types of non-governmental organizations as ag ents of colonialism maintaining hidden agendas that would continue to reproduce the subordination of my country. Although this fact cannot be denied, different types of field expe riences, a reinterpretation of Escobar (1995), and deeper lite rature searches, showed me that the world of NGOs is much more complex and, unfortunately, understudied. As Pfeiffer has indicate d, Since the Seminal 1978 Alma Ata Health for All conference, medical anthropologi sts have worked extensively within international aid agencies, including NGOs, to help build prim ary health programs. But most applied research has focused on the culture and behavi or of poor target popul ations, rather than the behavior and beliefs of providers (2004:59) This thesis was made with the attempt to gain a better understanding of who works in these organizations, what they do, and how they relate to other actors in society in the context of the provisi on of health services (within the public sector) to children. Several factors come into play when studying this topic. We have healthcare provision, which is in itself a complex terrain, but we add the fact that government and non-government actors are participating in the provision of services to the same population and in the same physical space (hos pitals). Furthermore, the population that we are talking about is children, which as we will see below, demands that we take other elements into consideration; and these child ren are cancer patients, which adds another 8


layer of complexity to the analysis. In su mmary, this thesis looks at how biomedical services, non-governmental involvement, and ideas and practices of childhood, disease, and medical treatment intertwine within the political and economic c ontext of Argentina. This particular chapter presents the theoretical frameworks that informed the research questions, methodological selection, and interpretation of the da ta of this thesis. This discussion of previous anthropological wo rk covers three main areas of inquiry: the Anthropology of Childhood, the Anthropology of NGOs, and Medical Anthropology (specifically the Critical Medi cal Approach). However, the last two themes are inserted in the larger review of th e Anthropology of Childhood. The reason for this is that even though several issues are discussed in this thesis and the overall goal is improve the medical services provided to pediatric onc ology patients, the concept of childhood is the lens through which medical trea tment is viewed and analyzed. This is not just research on the working mechanisms of NGOs, it is res earch on the working mechanisms of NGOs that work with children and how this makes them different. It is not research on cancer treatment, it is research on cancer treatment in children and how ideas that prevail in our society about childhood interrelate with biom edical knowledge and procedures creating contexts for medical diagnosis and treatment that do not exist in the case of adult patients. Elisas question of what I was doing, fi rst in Argentina, and second, in this particular NGO led me to rethink my role as an applied anthropologist in this particular context. What would be the overall goal of my presence and research here? Would I be satisfied only with documenting the experien ces of the volunteers and permanent staff? Would I ignore their questions about how they could improve their programs and provide better services to the children and their families? Could I develop an applied 9


anthropology thesis without falling into the theoretical and methodological insipidness I witnessed in previous l iterature? How involved in the working dynamic of the organization did I need to be in order to carry out an adequate analysis and propose solutions? What would happen to the informa tion I delivered to the organization once I left? How would I demonstrate to the academic community that applied anthropologists can also make valuable theoretical contributions? As the reader will see, these questions are answered in multiple ways throughout the thesis. Most of them respond to larger debates within our discipline that are themselves the product of larger political and economic processes. I ended up producing a report for the administration of CCF that contained a summary of information that they had expressed interest in. We still communicat e and I know that they have decided to implement some of the suggestions I included in the report. However, I have made sure these questions were present, in some way or an other, in all of the chapters of this thesis, and that some remain unanswered on purpose. The idea behind this is to draw our attention to the role that we occupy (or should occupy) in society and the goals we establish for our anthropologi cal research and practice. The Anthropology of Childhood The anthropology of children and childhood is still arguably in its own infancy (Stephens 1998:530). In a review written in 1998, Stephens me ntioned the line quoted above in order to argue in favor of the development of a dynamic anthropology of children and childhood that would be capable of illuminating the multiple contexts in which childhoods are situated and negotiated, as well as exploring the everyday worlds of children themselves 10


(1998:531). According to her and others, th e anthropology of childhood needed to step out of the margins of the discipline a nd occupy a more central role in both methodological and theoretical reformula tions (Bluebond-Langner and Korbin 2007; Hirschfield 2002; James 2007). It needed to shed light on the norms and values upon which this ideal of a safe, happy and prot ected childhood are built, are culturally and historically bound to the social preoccupations and priorities of the capitalist countries [and bourgeois classes] of Europe and the United States (Boyden 1990:186). Nowadays, few can say that the anthr opology of childhood is marginally situated as studies about children and childhoods have incorporated a great d eal of theoretical and methodological approaches, form part of anthropological study programs, and occupy significant roles during academic meetings. Me dical anthropological research has played an important role in recognizing the importance of studies about children arguing that medical treatment between adults and children has been previously differentiated due to the fact that children have physical, emotional, intellectua l, and legal limitations, and depend on others to advance in their de velopment and wellbeing (Bluebond-Langner 1978). Furthermore, discourses on childhood have heavily influenced the development of pediatric medicine (Armus 2007; Colange lo 2008; Nari 1996; Rodriguez 2006); and, in addition to other categories such as gender, class and, ethnicity they determine the access and quality of healthcare available to children. Unfortunately, even within medical studies on children, some topics attract less attention than others. Such is the case of the analysis of pediatric oncology treatment. Some anthropological work has been done with cancer survivorship in children, their adaptation and reinsertio n into the school system and thei r relationship with their family 11


members and peers (Blue bond-Langner et al. 1991) 3 However, in-depth analyses of diagnosis, chemotherapy, radiotherapy, and acco mpanying procedures are rare. The few studies that focus on this topi c use one of the following pe rspectives: they explore the ways in which parents and siblings deal with the disease and treatment (Anderson and Chung 1982; Bluebond-Langner 1989, 1996; Edelst yn 1974), they analyze the perception of the disease by the children themselves (Bluebond-Langner 1978; 2005), or they focus on the difficulties health professionals face wh en dealing with pediatric oncology patients (Rothenberg 1974; Wainer 2005). This literature has provided important information about the difficulties that death in children generates, the ways in which social relations are tr ansformed, and how the disease and treatment are experienced. However, they have failed to situate the disease, treatment, and their perceptions in a political and economic c ontext. In doing so, they have neglected other actors i nvolved in the provision of services to patients and their families, such as non-governmental organizations (NGOs). This may be due to the fact that most of these studies take place in ec onomically affluent countries and in private hospitals where healthcare lies solely in the hands of medical staff. Research in public hospitals in Latin America, on the other hand, shows that intern ational agreements, national budget distributions, and the deterioration of the health system have contributed to the introduction of non-governmental actors in the provision of services, both inside and outside of the hospital. 3 The most important work on topics such as these comes form other disciplines, such as psychology and nursing. See for example: Baysinger et al. (1993), Benner and Marlow (1991), Bessel (2001), Blotcky et al. (1985), Blount et al. (1989), Chekryn (1986), Frank et al. (1997), Fritz et al. (1988), Hockenberry Eaton and Minick (1994), Katz et al. (1988), and Suzuki (2003). 12


Medical thought and practice is so comp lex that it needs to be studied from various simultaneous angles. Ther efore, in this thesis, medicine is analyzed according to three main axes. It is viewed as a part of larger processes of social formation (Navarro 1976); it is analyzed accordi ng to its governing function, es pecially in terms of the reproduction and regulation of the population (F oucault 1963); and it is presented as a universal human right (Castro and Singer 2004; Farmer 2003; Whiteford and Whiteford 2005). In 1976, Navarro published Medicine Under Capitalism where he established that the comprehension of our societies and their medical realities requires not an unidisciplinary or an aggregate (i.e. multid isciplinary) approach, but an altogether different approach, in which the subject of an alysis-in this case, medicineis viewed as part of the larger social formation-soci ety-of which it is component, analyzing the relationship between the part a nd the whole (1976:viii). In other words, the distribution of medical resources cannot be analyzed separately from the distribution of other types of resources in the same society, the provisi on of medical services cannot be studied separately from the provision of other types of services, and the ex clusion of specific social classes from resources and services responds to larger political and economic arrangements (Navarro 1976, Singer 1995). When contextualizing medical thought a nd practice as indicated by the previous authors, the value neutrality once attributed to medicine disappears. According to Foucault (1963), the birth of me dicine must be understood within other shifts taking place in society in terms of particular ways to collect and organize k nowledge. According to him, modern medicine emerges during the last years of the 18 th Century when it reflects 13


upon itself, identifies the origin of its positiv ism, beyond all theory, to the efficacy of what is observed (Foucault 1963:5). In othe r words, the birth of modern medicine is marked by particular ways of seeing the pa tients body and establishing a medical gaze over them, as well as, by developing a syst em of observation of sickness through the collection of information (Foucault 1 963, 1994). These two factors lead to the standardization of medical pr actice and knowledge as the re collection and interpretation of information are developed into diagnos tic and therapeutic methods transmitted to students through legitimate training programs (Foucault 1963, 1994). This interpretation of medicine allows us to id entify the different ideologies behind medical practice and the production of medical knowledge and the effect they have on the everyday life of individual s (Waitzkin 1991:19-20). The last type of analysis of medicine pr esented in this thesis is complementary to the two established above. It is situated here as a respons e to previous analyses of medicine that present it solely in its governing or disciplining function, that is, as an instrument of the State (or dominant ideologi es). However, differe nt types of social movements have been generated throughout history demanding medical attention 4 The recognition of access to healthcare as a unive rsal human right has been the basis of political struggle. Therefore, when analyz ing medicine in its universal human right quality, we can also conceptua lize the provision of healthcare as a place of resistance and political transformation. 4 One of the most popular of these movements has been the social medicine (medicina social) movement in Latin America (Iriart 2002; Morgan 1998; Rosen 1985) and the establishment of socialized medicine in socialist governments (Armas Vazquez 1990; Molero Mesa 2004; Sigerist 1937, 1938). 14


Critical Medical Anthropology represents a useful framework through which to analyze particular medical systems by taking into consideration the three axes presented before. In essence, CMA recognizes that health is political; it acknowledges that inequalities in the distribution of health a nd disease are the product of class, gender, and ethnic categories; avoids separa ting micro-contexts from macr o processes; recognizes the colonizing role of both anthropology and me dicine; and seeks to change unequal and oppressive models of healthcare (Baer et al. 1986; Estroff 1988;; Navarro 1976; Pelto 1988; Scheper-Hughes 1990; Singer 1986, 1989, 1990, 1995). This anthropological framework allows us to view biomedicine as one of many explanatory models of health and disease, therefore acknowledging the value of other types of medicine (Singer 1995). In doing so, it leads researchers to look at the different ways in which biomedical discourse became dominant throughout history and the role it has played in the constitution of modern societies, and the creation of specific subjects, like children (Colangelo 2008; Foucault 1973). CMA incorporates the anthropological holistic approach and considers all aspects of human society when analyzing particular treatments or healthcare models (Singer 1995). Finally, th is framework indicates that medical knowledge and practice are neither homoge neous nor static and that there exist institutional and situational ope nings for influence and activity at many points in health care systems (Singer 1995:87). Therefore, CMA represents a valuable mechanism through which to explain the participation of non-governmental or ganizations in the delivery of health services and it allows us to analyze the ways in which these actors can lead to the enactment of tangible change s in the propagation of disease and the distribution of health services. It also points to the role of anthropologists in this process 15


and the need for our critical engagement in th e production of literature on topics that have been previously marginalized within our discipline, like pediatric oncology treatment, and it urges us to participate in the desi gn and implementation of actual interventions (Singer 1995). Defining the borders of the Anthropology of Childhood What then, is the Anthropology of Childhood, and why is it necessary? Several arguments have been made through the years that promote the development of this subarea of anthropology. Some authors have argue d that since class, race and gender were embraced by anthropologists as categories of analysis because they represented ways through which our symbolic and material worlds were organized, then age should also be included as another form of classification. Since all forms of classification entail the presence of power relations, then chil dhood should be analyzed as a subaltern 5 category that operates within a system of inequity, di sadvantage, and sustenance (Hirschfeld 2002) and is crosscut by the categories mentioned earlier creating particular, concrete realities (Helleiner 1998; Stephens 1995a). Other anthropologists, mostly those dedica ted to the study of socialization, have argued that because so much anthropology is devoted to identifying, understanding, and conveying what people do, it seems uncontroversia l that explorations of how they came to do it would be a central preoccupati on of the field (Hirschfeld 2002:612). Furthermore, if as anthropologists we strive to produce more inclusive views of the 5 Hirschfeld (2002) uses subaltern in this context to highlight the power differentials that exist between adults and children. According to him, these differentials are the product of social attributions of competence and maturity (Hirschfeld 2002:612). 16


societies we study and are a part of, then th e studies of children and childhoods would be the next logical step (BluebondLangner and Korbin 2007:242). The analysis of children and the ways ch ildhoods are constructe d could even point to important theoretical reformulations with in the discipline because they allow us to problematize the nature, development, and construction of the individual (BluebondLangner and Korbin 2007:245) taking into c onsideration both stru ctural constraints (Scheper-Hughes and Sargent 1998; Stephens 1995a) and the indivi duals role (James 2007) in this construction. In the case of this investigati on, the relational construction of childhood is examined within the health system, but through the eyes of nongovernmental actors that participate in the provision of me dical and non-medical services. In order to provide a synthetic literature review of the different lines of thought within the Anthropology of Childhood, I have divided them into the following categories: research and children, research about child ren, research about ch ildhood, research with children, and research by children. This division was made according to some of the issues that generate conflict among anthropolog ists of childhood, such as: is any type of research that references children or chil dhood a part of this sub-discipline, or do anthropologists actually have to intervie w children and document their perspectives on the topic under study? Is childhood an entirely social category or does it have a biological and cognitive basis? Should local (cultural) forms of interpreting childhood weigh more than Western interpretations? Shoul d the anthropology of childhood even be considered a sub-area of anthropology? 17


This brief review will situate the reader within the contemporary debates that are taking place in this area of anthropological thought and will introduce him/her to the framework that was used in this investigation. Research and children In a recent article, LeVine (2007) presented a historical overview of ethnographic studies of childhood. According to him, the recording and description of the lives of children did not originate with in anthropology, but actually app eared in the texts of many western and non-western cultures, and were especially eviden t in the documents elaborated during colonial regimes as missionaries, military, and colonial administrators documented local cultures (LeVine 2007:247). Levine dates anthropolo gical interest in children to the 1920s when researchers such as Mead (1928a) a nd Malinowski (1929) provided evidence for the cultural variati ons associated with child rearing and development. According to him, the precursor of ethnographic research on childhood in U.S. anthropology was Franz Boass anthropometr ic work on child growth among European immigrants in the United States (LeVine 2007: 249). Boass work was important because it demonstrated that human growth is not only influenced by environmental factors, but is also affected by the social and geographi cal environment (1912:217-218). These ideas were transmitted to his students and they incorporated them in the Culture and Personality movement (i.e. Sapir, Benedict, Mead) (Stocking 1992). The Freudian theory of psychosexual st ages invigorated ethnographic studies on childhood as researchers such as Malinowsk i (1927) and Mead (1928b) used cross18


cultural studies as a way to di scredit them, while others adap ted the model to the context in which they were working: Erikson (1950) among the Yurok, Spiro (1958) in an Israeli kibbutz, and Whiting and Irving Childs (1953) fa mous analysis of the socialization of the oral, anal, and sexual behavior systems. Piagets universalist account of childhood cognitive development was scrutinized thanks to empirical evidence obtained at the time (Mead 1932; Greenfield 1966; Shweder and LeVi ne 1975). As can be seen, this early stage in the anthropology of childhood was characterized by the recollection of a large quantity of ethnographic data that was used to either support or reject psychological models of the time (LeVine 2007:253). Thes e studies would mark the beginning of a bitter-sweet relationship between anthr opologists of childhood and psychologists, psychiatrists, and psychoanalysts. Research about children (and parents) During the 1960s, a large portion of the anthropological rese arch directed at children focused on the relati onship between children and th eir caretakers, specifically: parental concepts and practices of infant care, different st ages of socialization, language acquisition, and initial social interaction (LeVine 2007:254). Anthropologists began to focus on the household, examining the roles of different family members on the upbringing of children (Gaskins 1996, 1999; Weisner and Gallimore 1977; Weisner 1984) or the effects of adoption or dysfunc tional family relations on socialization (Carroll 1970; Goody 1982). The incorporation of cultural meani ngs through communicative participation in children became an important area of res earch. Some have argued that it was Sapirs 19


interest on the acquisition of culture by ch ildren that influenced the sociolinguistic movement (Ervin-Tripp and Slobin 1967; Hymes 1974) and placed childrens incorporation of language as the main focus of research (LeVine 2007:255). Ethnographic studies were done all over th e world indicating th at children acquire important skills and information at very early stages of their development (Kernan 1969; Blount 1971; Harkness and Super 1977; Heath 1982; Ochs 1988, 1990; Schieffelin 1990). Contemporary sociolinguistic studies have explored communication patterns among children and their mothers tracing how this relationship influences the childs construction of the self (Fung 1999; Miller et al. 2001). Not everyone has accepted the literature pr esented in the previous two categories as valid forms of research on children and so me argue that this work has not coalesced into a sustained tradition of child focused research [] nor has it succeeded in bringing children from the margins of anthropology (Hirschfeld 2002:611; see also Caputo 1995; Hardman 1973; Schwarz 1981; Stephens 1998; To ren 1993). This type of research is seen as not studying children, but adults a nd the way they organi ze the environment in which children develop (Hirschfeld 2002:614; Toren 1993) leading them to represent children as culturally incompetent creatures w ho are appendages to adult society, that is, as adults-in-the-making (Bloch 1991; Caputo 1995; Hirschfeld 2002; James and Prout 1990; Schwartz 1981; Toren 1993). Research with children Anthropological research with in this category has estab lished itself as the correct form of childhood studies as research is carried out with children rather than on children 20


and positions them as participating subjects ra ther than as the objects of adult research (Alanen 1992; James 2007). According to these authors, the greater politicization of the research process has lead to the awareness of the power differentials involved in the researcher-researched rela tionship responsible for mu ting the voices of children (Christensen and James 2000; Christ ensen and Prout 2002; James 2007). Some of the research carried out in th is category established as its focus the process through which children acquire knowledge as a means to describe their inherent culture (Corsaro 1997 ; Goodwin 1990; James and Prout 1990; Maltz and Borker 1986; Willis 1981). Most of the authors that car ry out these types of studies have a psychological anthropology background with a great interest in cognitive research. According to these studies, childrens cult ures encompass substantial and elaborated environments that are not only distinct from, but independent of the adult environments in which they are embedded (Hirschfeld 2002:6 15). This culture is seen as the product of the cognitive structure of children, and th e specialized learning mechanisms that are a product of it leads children to create specific types of activities that do not appear to be linked to adult culture (Hirschf eld 1996, 1997; Opie and Opie 1960). A strong emphasis on agency underlies this type of research as children are viewed as active participants in the socialization process a nd are considered capable of translating, and even transforming, adult cu lture (Hardman 1973). A large quantity of studies focus on childrens play, song devel opment, and drawing and researchers work with children in order to illustrate the way they conceptualize their world and determine how this is similar or different to the conceptualizations made by adults. Notable examples are the studies made on cooties and its interpretation as a semiautonomous 21


cultural form maintained th rough childrens practices (Opi e and Opie 1969; Powlishta 1995; Samuelson 1980; Thorne 1993). Other studies apply a cultur alist perspective emphasizing that the immaturity of children is a biological fact of life, but the ways in which this immaturity is understood and made meaningful is a fact of culture (James and Prout 1990:7). According to them, comparative work on childhood should aim at t he analysis of how different discursive practices produce different childhoods, each and all of which are real within their own regime of truth (James and Prout 1990:27). They have recently in corporated childrens voices to provide a critical understanding of the processes an d effects of globalization on local settings and to try to connect what children say about thei r lives with larger political, economic, and social issues (James 2007). Montgomerys (2001) analysis of child pr ostitution in Thailand is an excellent example of this type of work. She explores th e lives of children from their point of view finding out that children in Thailand do not have the sa me experiences as Western children and that they view th eir prostitution as a sense of duty to their parents. Rurevo and Bourdillion (2003) carry out a similar study in Zimbabwe, but using a gendered approach as well. In an exploration of the professional pr actices of family court advisors in England, James and James (2004) examined how childrens voices provided important insight into family relations, but were also a matter of translation, mediation and interpretation as they did not go according to the interests of the court advisors. Smart and others (2001) elaborated an investigation with childre n on their views on parental 22


divorce making important contributions to the debate about the effects of divorce on the lives of children. An interesting selection here, is the investigation carried out by Finkelstein (2005) on homeless children, their interpretation of the situation in which they are living, the reasons why they got th ere, and the hardships they endure on an everyday basis. In summary, anthropological research with children can provide important contributions to the anthropology of childhood in the sense that it includes childrens voices and, hence, perspectives on particul ar topics demonstrating that childhood is experienced and practiced differently according to specific cultural contexts or cognitive predispositions. However, if not applied carefu lly this approach as used by psychological anthropologists can result in an isolativ e characterization of children and childhood as they tend to focus on the analysis of child ren as something separate from the adult world. Culturalist analyses should also be analyzed critically as they can derive into different types of cultural relativism where exploitation and abuse are justified because they are thought to be a product of local cultural norms. Research by children After the crisis of representation re ached anthropologists of childhood, the use of children as researchers and co-researcher s became more common. This shift certainly mirrored larger transformations that were ta king place within the discipline, especially those proposed during the 1980s by authors such as Clifford (1988), Crapanzano (1980), 23


and Clifford and Marcus (1986) 6 Within this area of anthr opology, the use of children as researchers helps to redress the power imba lance between adults and children during the research process (Alderson 2000; James 2007). The results of the research are more accurate in the sense that the research que stions that are iden tified are of greater relevance to children and the research is us ually geared toward a pro-child direction focusing on the respect of their rights (James 2007; Jones 2004; Roberts 2000). Within investigations ca rried out by children, selfdirected visual methodologies stand out as an innovati ve approach. They form part of visual anthropology and are based in the questioning of the practic al, ethical, and technical issues of representation in social research. By allowing the children to act as the primary data generating agents by documenting their lives or the specific topi cs they want to ex plore through visual representation (film, photography, painting, et c.), these studies provide important information about how children represent th emselves and represent others (de Block 2007; Devereaux and Hillman 1995; Buckingham and Willett 2006). Although the use of children as research ers can generate important contributions to this area of study, it does not mean that the research direct ed by children will be entirely representative or work towards improving the living conditions of all children. It also does not mean that it will focus on the transformation of structures that reproduce their subordination. Furthermore, the promoti on of research carried out by children does 6 Briefly, postmodernism recognized the influence of positivism in anthropology and proposed, instead, to eliminate the idea of an objective reality that can be discovered; to deconstruct concepts otherwise uncontested; decentralize the narrative of the anthropologist to include other voices; and consider ethnography as a partial and ideological form of writing. 24


not mean that research about children or with children, carried out by adult researchers, is less authentic or valuable. Research about childhood Studies about childhood in anthropology em erged with the work of authors like Stephens (1995a), Scheper-Hughes (1987), and Scheper-Hughes and Sargent (1998) which strived to deconstruct the concept of childhood and locate it w ithin both global and local contexts. These authors relied on the work carried out by the French historian Philippe Aris (1962) who argued that the mode rn conception of childhood as a separate life stage emerged in Europe within the fifteenth and eighteenth centuries 7 Notions of childrens special nature and needs called for special attention to the childs emotional development in the home and for formal edu cation in the school aimed at preparing children for the transition to an adult world (Aris 1962; Stephens 1995a). As time passed, a vast amount of institutions contributed to the generalization of childhood (school, health, legal systems), first within Western society, and consequently, through colonialism and subsequent processe s of globalization, to non-Western societies as well (Aris 1962). Therefore, the changes in the representation of children were intimately linked to larger political and economic transformations (Stephens 1995a). Although this investigation draws from all of the aforementioned categories, it is heavily influenced by this line of thought. The historical compone nt of the research 7 For historical reconstructions of childhood made within anthropology refer to: Haas (1998) which focuses on childbirth and early childhood in Florence, Italy; Rosalind and Janssen (1996) provides an excellent description of the games, rites of passage, and education experienced by children in Ancient Egypt; and Calvert (1992) uses material culture as a way to reconstruct childhood in the U.S. from the Seventeenth to the Twentieth Century. 25


seeks to identify the role that the health system played in the institutionalization of childhood in Argentina. By analyzing medi cal discourse through time, we can obtain valuable information on the construction of th e meanings and representations of children. This historical reconstruction is made by c onsulting historical documents where children are present in the adult world. This is true of most historical descri ptions of childhood. As Heywood has indicated, it follows that if historians wish to recreate the day-to-day experiences of children in the past (what might be called the social history of children) they must in the first instance understand how adults thought and felt about the young. Childhood is of course an abstraction, referring to a particular stage of life, as opposed to the group of persons implied by the word children (2001:10) 8 This abstraction is found in all of the chapters of this thesis; it gui des the historical reco nstruction of pediatric medicine in Chapter 3 and it underlines th e ethnographic research carried out on NGO staff that currently work with children. The historical component of this resear ch serves other purposes as well. As Armus has indicated, a historical look at medicine allows us to visualize this discipline as an uncertain terrain, where the biomedical is penetrated by both human subjectivity and objective facts (2005:18). It sheds light on the biological, social, cultural, political and economic characteristics of disease, enables us to interpret the init iatives originated in medicine and public health according to its disciplining, humanitari an, and assistencial dimensions (Armus 2005:18). In other words, a historical look at medicine allows us to understand the processes through which specific subjects are created in society (Foucault 1989). Furthermore, it sheds light on the multip le types of control and order exerted on 8 See also Vann 1982, Ennew 1994 and Hoyles 1979. 26


specific groups by highlighting the political id eologies behind the creation of particular health systems (Foucault 1994a). Historical reconstructions such as this one, force us to reconsider traditional representations of government, and instead assu me that we will study not the institution government, of course, but the activity that consists in governing human behavior in the framework of, and by means of, state inst itutions (Foucault 1994b:74). Multiple actors participate in this process of governing in some cases, even actors we had previously labeled as non-governmental. The historical chapter of this thesis and the chapters that supersede it will repeatedly re turn to this point of tension between what we label government or non-governmental for analytical pu rposes and if this responds to what we actually observe. The Anthropology of Childhood within Larger Anthropological Debates As can be seen, research within the anthropology of chil dhood includes a wide range of topics and theoretical frameworks and responds to crosscutting debates within anthropology as a whole. The earliest studie s included children as a marginal part of a larger investigation and were interested in applying the concepts of the Culture and Personality framework to understand the cult ural differences in child rearing and socialization. Later studies acquired a more political stance, incorporating a poststructuralist approach to the study of children by deconstructing the concept of childhood altogether. They relied heavily on th e historical reconstr uction of childhood as a social and political category. These studi es concluded that the Western concept of childhood was transmitted through the dominan t international discourse heavily 27


promoted by multilateral organizations in orde r to erase the local conceptualization of childhood and ensure the reproduction of international aid or development programs. Anthropological research on children and childhood questio ned the representation of childhood as a separate stage of the lifecycle and pointed to the role of professionals (anthropologists included) in its reproduction and its utilization as a form of population control and regulation 9 Anthropological research with children emerged recognizing the structural characteristics that shaped childhood, but ar guing that children ha d the capability of reconfiguring this category in everyday practice. They stemme d from larger criticisms of more structural analyses that ended up, de nying the role of individual actors, and depicting eternally reproducing systems of do mination. Some utilized Bourdieus (1977) later concept of the habitus 10 with its emphasis on improvisa tion, and described the ways in which childrens agency (capacity and will ingness to act) shaped the world in which they lived. Others took these ideas even furt her and identified forms of resistance and subversion of the hegemonic order. 9 Several of these studies drew from the ideas of governmentality proposed by Foucault that basically refers to a specific type of power that is exterted by obtaining knowledge about a population produced by government institutions through specific procedures, analyses, and calculations (1999:195). 10 Bourdieu defines the habitus as the system of durable transposable dispositions structured structures predisposed to function as structuring structures, that is, as principles which generate and organize practices and representations that can be objectively adapted to their outcomes without presupposing a conscious aiming at ends or an express mastery of the operations necessary in order to attain them. Objectively regulated and regular without being in any way the product of obedience to rules, they can be collectively orchestrated without being the product of the organizing action of a conductor (1977:72) (my emphasis). It is later on that he makes action explicit by stating that each agent, wittingly or unwittingly, [] is a producer and reproducer of objective meaning (Bourdieu 1977:78). 28


Most anthropologists within this categor y agreed on giving ch ildrens voices a more important role by making them part of th e research process. However, the impact of this approach on the actual improvement of their living conditions is still a matter of discussion. In a sense, research about ch ildhood and research with children present opposing yet complementary approaches w ithin the anthropol ogy of childhood. Their discussion mirrors the structure vs. agency debate in anthropology. While contemporary studies no longer a dopt an all or nothing position and actually acknowledge the interaction between in dividual action and stru ctural constraints, broad categorizations are still made. Some research is labeled as considering childhood as something external to child ren of which they have no cont rol while, on the other hand, some anthropologists are blamed of depicting children as individuals with more agency than they actually have. At first glance, it might seem as though a mo re structural lens has dominated this current investigation. Even though pediatric on cology is framed within the public health system, and this system is consequently si tuated within local and global political and economic contexts, childrens capacities to act are considered equally important. While I did not interview children and their direct voices are not heard, they are still represented as active constructors of th eir relationship with the medical personnel, their family members, and the NGO staff. Furthermore, their representation of the disease and its treatment occupies a significant portion of this thesis. In the groundbreaking Small Wars: the Cultural Politics of Childhood the authors sought to demonstrate how the treatment and place of children are affected by global 29


political-economic structures and by everyday practices embedded in the micro-level interactions of local cultures (Schepe r-Hughes and Sargent 1998:2). They sought to address a general concern among contemporary anthropologists of be ing able to study local contexts while acknowle dging the effects of global pr ocesses (Appadurai 1996). Among anthropologists of childhood, this dilemma was brought forward with the recognition of universal child rens rights within the Unite d Nations Convention on the Rights of the Child in 1990 (Scheper-Hughes and Sargent 19 98). This Convention has generated debates within anthropology as some have argued that the rights rhetoric could serve as a screen for the tran sfer of Western values and economic practices dependent on a neoliberal conception of independent and right-bearing individuals (Scheper-Hughes 1998:7; see also Ennew 2002; Rosen 2008; St ephens 1995a, 1995b). Anthropologists of childhood have asked if they should promote a single universal defini tion of childhood or if they should defend the fact that childhood is understood and experi enced differently in each society (Rosen 2008:5) While some can state that if anthropology is worth anything at all, it must be grounded in a new ethics beyond th e cultural relativisms of the past (Scheper-Hughes 1995), others still speak in favor of privileging local discourses and practices of childhood (Rosen 2008) 11 11 Anthropologists encounter a difficult terrain when in the name of culture exploitative systems are reproduced. In this context they go back to the previous debate and ask whether they should act according to their own model of childhood or respect local arrangements and beliefs. This situation points to reconsiderations within anthropology of what culture is (if it exists at all), how it should be studied, and what role it should play in our research. Should we think of culture within the anthropology of childhood as Lewis and Watson Gegeo (2004) propose by taking into consideration that cultures are variable, dynamic and in perpetual motion (Rosaldo 1993:104); they are ongoing sets of conversation embodying conflict, compromise, and change (Burke 1957:95 96); shaped by the dialectic of structure and agency (Giddens 1979); inherently ideological (Bakhtin 1981); and prone to manipulation through power relationships (Habermas 1979)? Or should we throw out the concept all together and write against culture? (Abu Lughod 1991). 30


This debate is still unresolve d within our discipline, but it is important to continue bringing it up because it sheds light on the moral values present in anthropological research as researchers decide what and for whom to advocate for. It also demonstrates the importance of recognizing the position the researcher occu pies in terms of his/hers political ideology; the existence of probl ems associated with authenticity and representation; and the multiple valid forms of conducting anthropological research. These ideas have had a tangible effect on the anthropology of childhood as researchers have acknowledged the power differentials th at exist between researchers and children, and have, therefore, strived to develop theoretical frameworks and methodological approaches that could represent the e xperiences of children more accurately. In the case of studying pediatric oncology treatment in Argentina, the discourse on childrens rights is joined with a more general calling for th e consideration of healthcare as a universal human right (Farme r 2003). Although this thesis acknowledges the problems that a universal depiction of childhood can generate and the importance of respecting individual representa tions of disease and treatmen t, it pronounces itself in favor of the human rights disc ourse by arguing that all pediat ric patients should have the same access and quality of health services provided to them. Anthropologists of childhood have not quite embarked on the task of critically examining this concept as many authors still talk about the culture of children (Hirschfeld 2002) or favor culturalist analyses of childhood (James 2007), but at least the problematic nature of the concept of culture has been stated (Stephens 1995a; Scheper Hughes and Sargent 1998) and it could be the source of future transformations within this area of study. 31


Why Cancer? Since this thesis is concerned with the provision of healthcare to children within the public health system in Argentina, many might wonder w hy the research took place in an NGO that focused only on cancer patients. Cancer generates a different context in which to study healthcare. As Bluebond-Langne r (1978) has indicated, terminal diseases in pediatric patients produce complications for parents and health care professionals as they go against ideas about children maintained in our society where childhood is a period of formation; a temporal stage that will be surpassed by the other stages in our lifecycle 12 Young et al. in their study of the pare nting of children with cancer found that the rarity of cancer in children, the threat th e illness poses to futurity, and the cultural association between cancer and death added to the sense of catastrophe that surrounded the illness. (2002:1845). Nowadays, cancer can acquire remission ch aracteristics, thus not constituting a terminal disease, however, the possibility of death remains. The sole possibility of death transforms relationships among family members and with anyone in charge of caring for the child because although like other children, they are sensitive, intelligent, kind, willful, and young, they will not become, they have no future (Bluebond-Langner 1978:213). This is particularly evident in the re lationship between parents and children. Many parents experience a feeling of losing contro l over their family, of not fulfilling their roles as caretakers in an adequate manner (Bluebond-Langer 1978; Hoffman 1971). As 12 See also Jenks 1996; James 1998; James, Jenks and Prout 1998; Young et al. 2002. 32


Hoffman has indicated, the onset of leukemi a in a child represents an assault on a parents sense of adequacy as guardian of his child and, more generally, as a person with a meaningful control over his own and his fa milys destinies (1971:15). They respond to these feelings in different ways, but most of the time they deal with them acting as though the child were going to live, even though the medical prognosis is negative (Bluebond-Langner 1978). Several studies have demonstrated that cancer diagnosis also leads to parents creating a new self-identity, that of the pa rent of the child with cancer (Young et al. 2002). All of their everyday activities are con centrated around the child, they feel a great sense of responsibility for ensuring the child s cooperation with medical procedures, and their own needs and quality of life (as well as those of ot her family members) occupy a secondary role (Young et al. 2002). Besides still representing a threat to life, cancer treatme nt is long, intensive, and painful (Young et al. 2002:1836). As Young et al. have indicated, cancer is also a chronic condition: treatment may extend for se veral years, and it is associated with a range of adverse long-term eff ects, including disability and infertility, so it carries the potential to disrupt permanently parents and childrens biogr aphies (2002:1836). Cancer treatment produces serious transforma tions in the lives of all family members (Clarke-Steffen 1997). In the cases of heav ily centralized medical systems, like in Argentina, in many cases, one of the parents must move to the capitol to accompany the 33


child during treatment, separating family members sometimes for years 13 Furthermore, in many cases, parents must abandon their j obs or are fired after requesting too many days off because they are the only caretakers of the pediatric patient and they must accompany him/her during the treatment. The fact that cancer treatment is so dema nding of the child and his/her caretakers also produces changes in the relationship be tween the patients and his/her well-siblings. As Bluebond-Langer has indicate d, Chronic illness sets the family and its members apart from others. [] Well siblings views and responses are part of a process that involves not only the parents responses, but also th e ill childs condition and experiences (1996:12-13). The lives of pa rents and well siblings revolve around the disease and the state in whic h the ill child is found. Cancer diagnosis and treatment also produ ces changes in the ways the children visualize themselves and their bodies. In an analysis of childrens depictions of the cancerous body, Williams and Bendelow (2000) i ndicated that they reproduced medical and Western notions of health and illness by representing their bodies as demonic, dysfigured, combustible, pathological and mort al. Cancer during childhood introduces notions of corporal transgression where bi omedical notions of the sick body are internalized by the pediatric pa tients and shape their represen tation of the self and their social relations with those that surround them (Williams and Bendelow 2000). 13 In her study of pediatric oncology in Japan, Saiki Craighill (1997) found a similar phenomenon where the isolation of mothers and patients from the rest of their family was produced by the fact that medical treatment was only available in hospitals and there were no possibilities for home care. 34


As Bluebond-Langner has indicated, one dies as a member of society, linked to other individuals (1978:235). Therefore, the childs death not only affects family members, but also influences the healthcare professionals that contributed to their caretaking 14 In his analysis of healthcare sta ff that worked with terminal pediatric patients, Rothenberg (1974) indicated that professionals experienced two emotional responses: compassion and repulsion. The form er produced the need to aid and comfort the child, the latter, engendered the need to distance themselves in order to seek protection from the shock of future se paration or loss (Rothenberg 1974:39). Rothenberg goes on to say that a patients fa ilure to get well frustrates one of the primary goals and needs of the health worker (1974:40). When healthcare professionals are not trained to deal with the emotiona l consequences of co mmunicating with a dying patient, they start to feel fr ustration and anger (Rothenberg 1974; Stuetzer 1980), and the patient might become neglected (Truscello 1997: 73). Kleinman has explained this phenomenon in his study of chronic illness by indicating that in the case of long-term illnesses the common biomedical approaches where diseases are rapidly sorted out and magic bullets provide cures that do not wo rk, generate difficulties for healthcare professionals that deal with these patients (1988:136). Furthermore, as Eisenbruch and Handelman have argued the psychosocial response of any cancer patient and his fa mily is unique and highly complex (1990:1298), and a great deal of these responses do not attain themselves to the rigid models used within biomed icine (Scheper-Hughes and Lock 1986), generating problems 14 For studies on healthcare professionals work with cancer patients refer to Rothenberg 1974; Stuetzer 1980 35


in the doctor-patient relationship and docto r-family relationship. Many anthropologists have dedicated time to the study of the power asymmetries found within medical discourse 15 so the only thing we will say regarding th is topic is that from our discipline we can question the quick conclusions draw n by professionals from other disciplines when they catalogue patients as non-complia nt (Farmer 2003; Hunt and Arar 2001) or bearers of a style confronti ng the disease that is malada ptive (Kleinman and Kleinman 1985). We emphasize the fact that many cases th at are classified as depression or other types of psychopathologies, which are in re ality the result of the questioning of the medical authority and knowledge on behalf of the patient (Kleinman and Kleinman 1985:474). Within the clinical literature that focu ses on the study of the behavior of patients, psychological approaches predominate. This is particularly evident in the oncology treatment offered to pediatric patients in Argentina. Psychology has made important contributions to the management of pain, th e disease, and death by patients and families and it is very useful during all of the phases of the treatment. However, in most cases, it assumes that the behavior present during the me dical treatment is the direct result of the choices made by the patient, and therefore, treats clinical recommendations as goals for which patients must rationally strive for (Hunt and Arar 2001:348-349). In other words, they do not question the assumptions under which treatments are based and evaluated, they do not take into considerati on the specific context within which patients experience their disease and treatment, and th ey give little importance to the different 15 See Ainsworth Vaughn 1994; Treichler et al. 1990; Kleinman y Kleinman 1985; Tannen y Wallat 1987. 36


factors that restrict and influence the decisions of patients and their families. Due to the fact that most healthcare professionals are tr ained within this rigid model (Good 1994), they find it extremely hard to deal with the realities of their patients and their families, and the possibility that biomedicine might fail. As was mentioned previousl y, most studies have focused on the impact of cancer on these three actors: the patient, family members, and healthcare professionals. However, there are many other people that in teract with pediatric oncology patients like social workers, hospital teachers, admini strative personnel, and NGO staff (see Foley 1982). In the case of the NGO staff, this invest igation demonstrates that they are subject to some of the same difficulties experi enced by family members and healthcare professionals. However, they do not have th e same type of support that many physicians and nurses have, they do not have prior traini ng, and in many cases are not supervised by other professionals. As we will see later on in the thesis, this has negative consequences as they do not know how to work with many of these childre n or cannot handle emotionally distressful situations. The last reason why this thesis focused on pediatric oncology treatment is more related to the Argentin e context. In a country where one in six deaths is related to a neoplastic disease (De Simona and Tripodor o 2004: 17), 200,000 children have cancer, and 1300 new cases of pediatric oncology are diagnosed each year (ROHA 2005) one would expect large amounts of anthropological literature produ ced on the subject. Unfortunately, this is not the case and this misinformation produces serious consequences in the design of adequate social assistance programs to patients and families, the transformation of health policies, and the dissemination of information to the general 37


public. This thesis was partially created to invert the situation a nd generate information that can be of use to anthropologists, hos pital administrators, NGO staff, healthcare professionals, public officials, patients, fa milies, or anyone interested in pediatric oncology. Using a Micro Perspective to Study NGOs Anthropological research on NGOs in general has adopted a development anthropology perspective and has rarely in cluded empirical, acto r-oriented, ethnographic research (Nauta 2004: 43). As Nauta has indicated, some NGO scholars that have contributed to the NGO literatur e, have suggested that more in-depth research is needed in order to understand NGOs (2004: 43). Hulme and Edwards had previously brought up this point arguing that detailed empirical research is needed to elaborate whether such approaches [participatory methods used by NGOs] lead to changed interventions and whether such changes lead to improve d outcomes (1997:10). Farrington and Bebbington have indicated that while th ere are some ethnographic and actor based accounts of the work and dynamics of governme nt institutions (), few have been written about NGOs (1993:57). Anthropological research on NGOs that wo rk with children tends to reproduce this trend as most studies take a more t ransnational look at ch ildhood, usually using the United Nations Convention on the Rights of the Child as a base, and fail to identify the differences between foreign and local NGOs and the negotiation of their discourses on childhood 16 Due to the fact that they are not ab le to focus on the everyday realities of 16 For further discussion on this topic refer to: Panter Brick (2002). 38


NGO workers, they miss out on the large amount of detail that makes NGO involvement so complex. The literature on NGOs involved in the provision of healthcare tends to reproduce this same pattern. Most analyzes tend to categorize organizations depending on the type of services they provide to pa tients, their funding sources, or the impact they have on the development and implementation of health po licy (Gilson et al. 1994). Furthermore, most of the NGOs that have been studied are inte rnational NGOs that deliver health services under emergency situations (Redfield 2005) or es tablish autonomous health facilities that act in opposition to government institutions (Pfeiffer 2003). Organizations that provide services to patients within public hospita ls have not been properly studied. The Literature on NGOs in Argentina It is difficult to talk about NGOs in Arge ntina, or anywhere else for that matter, because it is difficult to identify them. The lit erature that has focused on these actors in Argentina has provided different defi nitions for what constitutes an NGO 17 This responds to a greater problem within the lite rature on civil society where different types of conflicting and sometimes overlapping categor izations coexist. The vague definition of civil society proposed by authors like Keane (2003) further generates problems. According to him, the concept of civil societ y is an ideal concept that refers to a dynamic non-governmental system of interconnected socio-economic institutions that straddle the whole earth, and th at have complex effects that are felt in its four corners 17 The classification provided by the International Comparative Project of Johns Hopkins University (Salomon and Anheir 1997) appears useful for didactic purposes and has been used by many authors working in Argentina (Cruz and Barreiro 2006). 39


(Keane 2003:8). Some of the ge neral characteristics that author s have attributed to civil society are that it works inde pendently of the government (F riedman et al. 2005), it is the product of interlinked social processes (Keane 2003), has mobile and dynamic qualities (Post and Rosenblum 2002), maintains pluralism (Keane 2003), and constitutes another arena where power relationships on an inte rnational scale are negotiated (Howell and Pearce 2001). Non-governmental organizations (NGOs) are considered just one part of civil society and unfortunately, as Magazine indicates, they te nd to be portrayed as either instruments of the State or romantic savior s of the people (2003:244) The actual nature and practice of NGOs is more complex than this dichotomy; it varies across time and space and involves multiple representations (Abramson 1999; Hemment 2004; Magazine 2003; Markowitz 2001). This thesis adopts a wi der idea of what constitutes NGOs. The research applies Thompsons definition of NGOs as non-profit entities that emerge from civil society (1995:12). This conceptualization of NGOs a llowed me to take into consideration the multiple ways in which orga nized forms of civil society can participate in the provision of healthcare in Argentina. Fu rthermore, it made me cognizant of the fact that in order to understand wh at constitutes NGOs and how they work, it is necessary to analyze the perceptions and act ivities of their volunteers and staff members (Hemment 2004; Markowitz 2001). Most of the literature on NGOs in Argentin a tends to identify these actors as a relatively recent phenomenon (Ballon 2001; Bifarello 2006; Cruz and Barreiro 2006; Munck 2003). They usually indicate that in Argentina NGOs did not emerge until the 40


1980s, a relatively late time period when comp ared to other Latin American countries 18 However, in doing so, they have neglected the previous history of civil-society involvement like the case of the Sociedad de Beneficencia that we will present in Chapter Four. It is common for author s to explain the inse rtion of neoliberal policies in Latin America by referring to an i ndirect relationship between the State and civil society 19 indicating for example that from the 1980s onward we can visualize a certain movement, displacement of the State while at the same time witness a reacting of civil society, with a new place to occupy, a new way to appear, and new responsibilities (Zampani 2003:4). As a result, this literature provides a blinded version of the history of many Latin American countries and in the case of Argen tina, it eliminates a past of strong charitable societies, communal groups, and beneficence soci eties; groups that we re essential in the establishment of the contemporary health and educational systems 20 It is true that whenever there have been military governments, civil organizations have suffered the greatest attacks (Cruz and Barreiro 2006) and that duri ng the Peronist governments of 1946-1952 and 1952-1955 the State absorbed most of their functions (Biernat and 18 For example, Mayer and Iniguez (2003:2) have stated that in 2001, NGOs in Argentina reached a peak, but in no way do they provide information on what they mean by this or how the measurements of the impact of the work of NGOs on society was carried out. 19 See for example Ballon (2001), Cogliati et al. (2002), Zampani (2003). 20 Zampani states that previous organized forms of civil society only supported the projects that were generated by the State and that the current forms of these organizations have acquired greater forms of responsibility and autonomy (2003:4). However, this author fails to present an in depth analysis of how the decision making process took place between the government sector and these non governmental actors in previous decades, forgetting to take into consideration the fact that these relationships are in constant negotiation and that even though non governmental actors can appear to share the ideological basis of the State they also operate according to their own interests. 41


Ramaccioti 2005), however, when we look closely at these historical time periods we see that civil society organizations resisted in many ways and always managed to reappear when new political regimes emerged. Cruz and Barreiro (2006) have analyzed this fact by looking at what they have called different types of ruptures in the southern cone of South America (Argentina and Uruguay). These authors have stated that during the 1960s and 1970s a new social and political model was imposed creating new ways of organizing civil society and during the 1980s, when democratic governments started to emerge, these same social actors restructured their missions and operating m echanisms (Cruz and Barreiro 2006:5). In other words, the organization of civil societ y has taken different forms according to its historical context and the poli tical and social models at it s disposal, but it has never completely disappeared. Unfortunately, this heterogeneity of nongovernmental organizations has not been taken into consideration in most of the loca l literature on NGOs, especially in the small amount produced on NGOs that provide hea lth services. Even though Biagini (1996) carried out a study of all non-gove rnmental organizations that work with patients that have HIV/AIDS in Buenos Aires, her analysis is superficial in the sense that it relies on a generalized typology where all organizations are categorized according to one model. Furthermore, Biaginis (1996) review of sixt een different organizations in less than one year of fieldwork points to the macro perspe ctive that dominated th e research design and the lack of depth of the conclusi ons presented in her article. 42


As a result, Biaginis (1996) article fails to take into consideration the meanings and practices associated with HIV-AIDS, the historical background of public policies concerning healthcare in Argentina, and the so cial inequalities surrounding the provision of health services. Furthermore, Biagini (1996) presents a roman tic interpretation of NGOs as benefactors and opposers of the State fa iling to take into consideration that nongovernmental organizations maintain complex relationships with the State and in many cases collaborate with government institutio ns and reproduce the same ideas on diseases, medical treatment, and the right to access of healthcare. Unfortunately, these same limitations are presented in the study carried out by Biagini (2005) and Sanchez (2000). In sum, previous studies on NGOs in Ar gentina have failed to mention that organizations obtain their funds from a co mbination of sources like the government, private enterprises, donations from individuals or through fund-ra ising activities. Although they might not have received legal recognition, many organizations achieve complex models of internal organization a nd implement programs that have a direct effect on peoples lives. Organi zations also change through ti me redirecting their mission and expanding their geographical location and staff. These are some of the reasons why NGOs should not only be studied from a macro perspective; they need to be analyzed historically, within their particular political and economic context, and the voices of the people that work in them need to be included. As Markowitz has indicated, ethnographic methods are well suited for assessing these interrelations and the real or potential coincidence of interests that motivate individual involvement (2001:40). This methodological appr oach can point to the complexity of NGO discourses and the repr esentation of these by the individuals that 43


make up its staff (Hemment 2004), as well as the different ways in which NGOs are perceived by their users or aid recipients (Abramson 1999). Summary The anthropology of childhood is not as marg inal as many researchers still like to believe. It is a prolific area of study that utilizes a wide va riety of approaches and covers many topics and geographical locations. Most of its internal debates stem from disagreements on how to define children and childhood, how to study them, and what role the anthropologist and participants s hould play in the process. Ethnographic research will be fundamental in settling these deba tes as it redefines itself as that practice of representation that illuminates the power of large-scale, imagined life possibilities over specif ic life trajectories (Appadurai 1996:55). Even though ethnographic studies of ch ildhood and children are not new (Levine 2007), the ethnography of childhood remains a genuine frontier (Schwartz 1981). This is largely due to the fact that anthropologists stil l struggle with the de finition of childhood and are not sure if it should be analyzed as a universal or local category. Ethnography will allow anthropologists of childhood to breach this distance between the local and the global, and therefore, adequate ly represent the structural pr ocesses and individual actions at stake (Appadurai 1996; Comaroff 1985; Moore 1999). Hopefully, these new ethnographic studi es will also shed light on the depoliticizing effects that cultural relativ ism is having within the anthropology of childhood as serious violations are justified in the name of culture (Moore 1999). The supposed boundedness and the idealization of th e culture concept must be problematized 44


(Abu-Lughod 1991; Asad 1983). An interesting way to do this will be to incorporate into the analysis other categories of differen ce (gender and class) that interconnect with childhood and that can point to the diversity of realities and expe riences among children. Furthermore, in the attempt to continue to study childhood as a category that is constructed through social relations, anthropo logists need to include other actors, like NGOs, in their analysis. In doing do, authors wi ll have to put aside macro approaches for understanding the work of non-government al organizations, and instead favor ethnographic research. This thesis intends to bring to the forefr ont many of the issues presented in this review. By using the politically and socially constructed ca tegory of childhood as the lens through which to view the provision of medical services, this invest igation sheds light on the complex processes that form part of healthcare. It presents examples of how political ideology and health have been linked in the context of the Argentine past and present, transforming children into releva nt social subjects and politic al actors, while at the same time, inserting them into a previously es tablished model of so cial and biomedical hierarchies (where children occupy th e lowest positions). Discourses on childhood, therefore, become a part of larger structures of social and political exclusion, as well as, processes of the medicalization of society. 45


Chapter 3 Methodology and Setting Since it is not for us to create a plan for the future that will hold for all time, all the more surely what we contemporaries have to do is the uncompromising critical evaluation of all that exists, uncompromising in the sense that our criticism fears neither its own results nor the conflict with the power s that be (Marx 1844). As it was mentioned in the previous chapte r, this thesis draws from three different areas of anthropological l iterature: the Anthropology of Childhood, Critical Medical Anthropology, and the Anthropology of NGOs. These three frameworks determined the methodology used for the collecti on and analysis of the data and guided the elaboration of the interpretations that will be presented in the subsequent chapters. In this particular chapter, the different methods that were used in the research are presented indicating how they were informed by previous literature a nd the goals of the inve stigation. Furthermore, a brief description of Argentin a, its history and its public he alth system are presented in order to situate th e reader in the a ppropriate setting. This investigation used multiple methods, as different sources of information ensure reliability and provide a richer analys is (Singleton et al. 1993:371). It combined archival research with et hnographic research in one of the most important NGOs 46


dedicated to pediatric oncol ogy in the country for a period of three months. Archival research was chosen in order to gain a better understanding of the creation of the Argentine medical system, as well as, the cont ext in which NGOs dedicated to healthcare operate nowadays. As it was mentioned be fore, one of the underlying themes of this thesis is that the provision of healthcare need s to be analyzed within the context of larger processes of social formation where categories such as gender, class, and ethnicity determine the access and quality of the medi cal services provided to individuals. Historical research is useful in this endeavor because it can point to the different forces present in the creation of a particular way of thinking and acting and the ways in which these have been transformed through time un til acquiring their current characteristics. The content and context of documents we re analyzed, because as Ricoeur (1971) has indicated, texts are writt en to do something; they are produced under certain conditions embedded within social and ideological systems. Therefore, they have to be understood in the contexts of their co nditions of production and reading (Hodder 2003:156). The ethnographic research was important in the sense that it provided in-depth information on the inner dynamic of the NGO, th e staffs work and their interaction with other institutions. As other authors have indicated, ethnography is a mode of knowing that privileges experience often going into realms of the social that are not easily discernible within the more formal protocols used by many other disciplines (Das and Poole 1991:14). In the case of this research, it provided insight into the everyday life of the staff, their worries, hardships, and motivations. 47


Part of the ethnography was used to make an assessment of the internal communication of the organizati on and work with volunteers a nd coordinators in order to determine some of the difficulties they were facing on an everyday basis. This information was then developed into reco mmendations for improving the organizations situation. The idea behind the research was that it should, first of all, be useful to the people under study. CCF has undergone a considerab le expansion in the last year and indepth research that could cove r these topics resulted of inte rest to the ad ministration. Archival Research Methodology Documents are the most despis ed of all ethnographic subjects Latour (1988:54). Bruno Latours comment cited above sheds light on a common sentiment among anthropologists, especially a pplied anthropologists, towards the inclusion of historical research within anthropological studies. Many applied anthropologists justify this lack of interest by appealing to time and budget cons traints or lack of interest of financial supporters or organizations that requested the inve stigation. The pressures and constraints within applied anthropology are, in some cases different to those carried out in affiliation to academic institutions; however, the distaste for methods like archival research also leads applied anthropologists to not establish the importance of historical documents in their research design and to not defend this perspective to their clients. Furthermore, the dehistorization of applie d anthropology is linked to th e political economy of the discipline where, in many cases, historical an alysis sheds light on issues that go against the interests of financial suppor ters. I do not wish to provide an in-depth examination of 48


this issue and why I consider it ethically challenging. At this point I will just state the problematic in the attempt to justify my inclusion of historical research in this thesis. I do not visualize history as a perfectly constructed narrativ e that can explain contemporary problems and shed light on their solutions, as history is composed of many, usually contradicting, histories, muted voices, and overlapping events (Trouillot 1995, 2003). I also recognize that there are many methodological concerns when trying to interpret data outside of the original timefr ame, but as Sigerist, a medical historian at Johns Hopkins, indicated in 1952, Every historical pattern we set up is to a certain extent artificial and history never repeats itself unaltere d. But patterns are useful because they help us to understand conditions (Sigeris t in Navarro 1976:38). History can help us understand the conditions that enable the re production of exclusionary systems of healthcare, the propagation of the same diseases for hundreds of years, and the proliferation of inevitable deaths. History can indicate how specific ca tegories of citizens are created (women, children, foreign, criminal etc.) and incorporated into government programs and policies. For this portion of the thesis research three main sources of information were consulted. First, the Archivo General de la Nacion was visited in order to analyze the records from the collection titled Instituciones de la Sociedad de Beneficencia y Asistencia Social (1823-1952). This colle ction contained information on the work carried out by the Sociedad de Beneficencia (Beneficence Society), an organization that played an important role in the institutio nalization of childhood th rough its promotion of education campaigns and the administration of healthcare facilities. Original documents were consulted regarding two pediatric hospi tals and three institutions that focused on 49


children. The goal behind this part of the research was to obtain examples of the involvement of non-governmental actors in th e creation, regulation, a nd transformation of the Argentine health system, and specifically highlight their participation in the education and treatment of children. Table 1 indicates th e specific sub-collections reviewed and the documents analyzed in each of them. Table 1. Documents Consulted from the Collection Institucion es de la Sociedad de Beneficencia y Asistencia Social Category Subcategory Years consulted Relevance Gov. decrees Creation of the Sociedad 1823 Official government d ecrees establishing the creation of the Sociedad and its responsibilities. Casa de Expositos Infrastructure 1852-1946 Documents concerning the remodeling of healthcare facilities and the purchase of medical equipment. Casa de Expositos Training 1920-1921, 1947 Creation of training programs and schools for physicians and child care specialists. Sanatorio Maritimo Infrastructure 1915-1924, 19321949 Documents concerning the design of facilities in order to care for children with terminal diseases (especi ally tuberculosis). Hospital de Ninos Personnel 1875-1947 Hiring of physicians, rules of operation for the hospital, training of healthcare professionals. Hospital de Ninos Infrastructure 1930-1931, 19381939 Changes in the organization of the hospital, its staff, and the patients. 50


Solarium Mar del Plata Infrastructure 1915-1947 Documents concerning the design of facilities in order to care for children with terminal diseases. Asilo Saturnino Unzue Infrastructure 1918-1949 Documents concerning the design of facilities in order to care for children with terminal diseases. Asilo Saturnino Unzue Normative code 1918-1949 Documents concerning the changes in rules to deal with sick children. Consejo Medico Personnel Documents regarding the hiring of physicians. Consejo Medico Personnel Documents regarding the traveling of physicians to European countries and the United States. Consejo Medico Training Documents regarding the medical courses taught in the Sociedads institutions. The research at the Biblioteca de la Facultad de Medicina focused on obtaining information on the origins of pediatric medicine in the country and abroad; the publications of the most importa nt pediatricians; and the transformation of health policies over the years. Emphasis was placed on the documents produced from 1870 to 1940 as these decades are thought to have been the most important in the establishment of pediatric medicine as a legitimate medica l specialty in Argen tina (Colangelo 2008; 51


Rodriguez 2006). Table 2 indica tes the categories of documents that were most important in the elaboration of the thesis. Table 2. Documents Consulted at the Biblioteca de la Facultad de Medicina, Bs.As., Argentina Category Subcategory Years consulted Relevance Epidemics Cholera 1856-1895 Public health measures directed at the cholera epidemics of 1867 and 1869 in Argentina Sanitation History 1776-1810 The creation of sanitation policies and infrastructure in Buenos Aires. Medicine History/Women 1823-1950 The role played by the Sociedad de Beneficencia. Medicine History/France 1876 Analyzed excerpts from medical conferences in France about pediatric institutions. Medicine History/Oncology 1500 B.C.-1750, 1800-1941. These publications reviewed the history of cancer and its treatment. Pediatric medicine History 1873-1982 Identification of pediatricians, schools, and hospitals. Pediatric medicine History 1939 Speeches and conferences speaking in favor of pediatric medicine. Pediatric medicine Oncology 1959, 1960 Identify the history and main advances in pediatric oncology treatment in Argentina. 52


Hospice History/Italy 1750, 1923 Identify trends in hospice care in Italy that would later be incorporated in Argentina. Hospice History/France 1876 Identify trends in hospice care in France that would later be incorporated in Argentina. Finally, at the Biblioteca Nacional, publis hed documents were analyzed in order to obtain information about the history of oncology and the work of non-governmental organizations in Argentina. This collect ion contained more recent publications from physicians, social scientists and government officials, thus allowing me to obtain information on the current context of the pr ovision of healthcare and non-governmental involvement. Ethnographic Methodology [] ethnography must redefine itself as that practice of representation which illuminates the power of large-scale imagined life possibilities over specific life trajectories (Appadurai 1991:200). The ethnographic portion of this thesis was designed in such a way that it could bring together all of the concep ts that have been discussed so far. As Appadurais quote indicates, the ethnography carried out for this research tried to look at global processes from a local lens highlighting the specific textures, colors, and flavors that make the Argentine context particular. The recollection and analysis of data focused on explaining how macro political and economic processes are experienced in micro contexts, that is, in everyday life. This is useful because, as Gl edhill has indicated, the study of such micro53


political processes can, therefore, both illumina te particular local situations which might otherwise remain somewhat obscure, and contribute to an understanding of how processes at a local le vel not only reflect larger politic al processes and national-level conflicts, but may contribute to them (2000:128). Pediatric oncology treatment in Argentin a is therefore stud ied in particular historical timeframes and spatial orbits, but it is always linked to previous stages and events taking place around the world. In doing so, medical thought and practice are understood as transnational pol itical procedures that can transgress time and physical boundaries, but at the same time acquire attributes that are pa rticular to the individuals that exert and receive medical care. The combination of archival and ethnographic research facilitated this tas k. The ethnographic research lasted three months and it was organized according to three main methods of data collection: structured-open ended interviews, participant observation, and social interaction diagrams. A total of thirty staff members from different areas of the organization (administration, volunteers, coordinators, so cial workers, psychologists, and office personnel) were interviewed. The sample was selected in such a way that members from all of these areas could be included. Speci fic representatives of each category were selected according to their availability a nd desire to participate in the study. The interviews were mainly carried out in th ree of the organizati ons sedes: Mansilla, Hospital de Elizalde, and Hospital Posadas. Th e first sede, is located in the central part of the city and it receives pediatric hematooncological patients from all hospitals. The administration and one of the largest recreati onal rooms are located here. By recreational room, I mean an area designated for carrying out workshops and games with the children. 54


These rooms are equipped with educational and recreational materi al for children of different ages. The second sede, is a recreati onal room inside the Ho spital de Elizalde, the oldest childrens hospital in th e country. The last sede corr esponds to a small section in the pediatric oncology ward of the Hospital Posa das. During my fi eldwork, I divided my time evenly between these three sedes, sp ending approximately one month in each. The interviews were composed of five questi ons that because they were designed in conjunction with the NGO administration, could provide information that would be most relevant to the organization. The inte rviews covered the following topics: Reasons why the staff members were interested in working in this organization, with children, and with oncology patients. Description of the range of activi ties they carried out on an everyday basis. Previous or simultaneous work in othe r sedes of the same organization or other organizations. Challenges they face when working in this particular NGO and ways in which they have overcome them. Recall of specific situations during th e time they have worked within the organization that generated either positive or negative feelings in them (cases of specific children, relati on to other staff members, encounters with parents or hospital personnel, etc.). 55


Internal communication assessment: who do they interact with the most? Who do they turn to for advice? Do they frequent other staff members outside of the organization? How w ould they rate the measures for enhancing internal communicati on that the organization has? Demographic information: age, occupa tion, civil status, years within the organization. At the end of each interview, interview ees were asked to make a diagram where they indicated how they positioned themselves within the organization. The same directions were given to each interviewee in order to compare the diagrams during the analysis phase. The work of McCarty et al. (2007) was used as a model for the elaboration of these diagrams. These authors made an analysis of personal network visualization based on the eval uation of alter pairs compared to freestyle drawings the respondents made of their personal networks (M cCarty et al. 2007). In this investigation, the idea behind requesting the diagrams was for each interviewee to situate themselves graphically within the Foundation, drawing th e people with which they interacted the most (closer to them) and the ones with whom th ey interacted the least (farthest away). Participant observation was carried out in the three sedes where staff members were interviewed. The observations fo cused on obtaining information on: The interaction of staff member s among each other, healthcare professionals, children, and their families. The hospital conditions under whic h staff members work and the difficulties they face. 56


The specific cases of children and their families, the ways they experienced treatment and their percep tion of the services provided by the NGO. Data Analysis The documents consulted during the archiv al research phase were digitalized due to the fact that the archives did not allow photocopying. The jpeg files were downloaded, classified, and analyzed with Atlas ti 5.0. This software allowed me to code the documents as if they were images, identifyi ng the fragments of the texts that were of greater use to the research. So me of the general themes that led the data analysis were: Identification of the role of the Socied ad de Beneficencia in: medical training, creation and administration of infrastruc ture geared towards the provision of pediatric medical care, a nd production and dissemination of medical knowledge. Identification of ideas about children and childhood maintain ed by the Sociedad and healthcare professionals. Determination of ideas regarding childr en, childhood, and medical attention used by the State. Description of the history of pediat ric medicine in Argentina by looking particularly at the linkages with European pediatric medical schools, the role of non-governmental actors, and the role of the State. 57


Selection of bibliographical information on some of the most famous pediatricians in the country, specifically the history of their medical careers in Argentina and abroad. The structured open-ended interviews with volunteers were recorded and transcribed. The transcripts were also analyzed using Atlas ti 5.0. The coding focused on identifying excerpts of information that were related to the following points: Reasons why volunteers enter the or ganization and why they remain. Main activities carried out dur ing a normal day of work. Difficulties faced by NGO staff member s when dealing with other staff members, the NGO administration, health care professionals, children or their families. o Communication barriers o Inability to handle the emotional lo ad of working in this context o Lack of training and supervision o Unequal working conditions among sedes Suggestions proposed by interviewees fo r dealing with the difficulties they face. As it was mentioned before, each intervie w concluded with the elaboration of a diagram representing the place the volunteer fe lt he/she occupied in the organization and the interaction experienced with other staff members. The diagrams were also digitalized 58


and analyzed by Atlas ti 5.0. They provided important information on the level of interaction and communication that takes place among the staff, as well as, the conceptualization of the organization made by each individual and the role they play within it. The following points were identified in each drawing and were then used to guide the comparison of all the drawings made in each sede and among sedes: How many sedes are identified by the interviewee? Which staff members within and outside the sedes are identified? What place do the identified individuals o ccupy in the drawing? (are they close, far, etc.) What type of organization does the NGO have in the drawing? (hierarchical, equitable, indefinable) Which actors or sedes are not identified in the drawing? Besides staff members, do other actors appear in the drawing? (i.e. children, families, doctors, etc.). An issue that I think is important to menti on refers to the translation of the names of places and quotes from interviews and historic al documents. As it will be apparent in the following chapters, the names of places and organizations like the Sociedad de Beneficencia are maintained in Spanish to avoid confusions. Individuals familiar with Argentine history or its contem porary institutions would feel lost if these names were literally translated into E nglish. The Childrens Cancer Foundation is used in English due to the fact that it is a fictitious name The interviews and document fragments were 59


translated into English paying close attention to the context in orde r to avoid the errors that could be produced by a st rict literal translation. Data Interpretation and Dissemination All of the information colle cted throughout the data co llection process was then summarized and drafted into a report. A repor t had been promised to the administration of the organization after the termination of the fieldwork. Once the report was drafted, however, I met with each interv iewee one last time and after obtaining their consent, I presented the report to them. I gave them a su mmarized oral presentation of it, showed edited versions of the diagrams 21 and allowed them to read through the report. Afterwards, I asked them for their feedback. I wanted to know if my interpretation of what they ha d told me during the interviews and what they had drawn were adequate and accurate. My preoccupation was fueled by previous anthropological liter ature that has shed light on the misrepresentation and misinterpretation of the people under study 22 In order to deal with this situation, I followed the example of Borland (1991) and sought to broaden the dialogue with my informants on the material that I collected once my interpretati ons were made. As Borland has indicated, By extending the conve rsation we initiate while collecting oral narratives to the later stage of interpretation, we might more sensitively negotiate issues of interpretive authority in our research (1991:532). Theref ore, I collected information 21 By edited I mean versions where the names of the interviewees that made the drawings and any other information that could identify them was removed. 22 Abu Lughod 1991, Abu Lughod and Lutz 1990, Clifford 1986, Crapanzano 1977, Geertz 1973, Marcus and Clifford 1985. 60


on the feedback provided during these sec ond meetings with th e interviewees and included it in the final version of the report that was turned in to the NGO administration. Thanks to this feedback I was able to resolv e issues of misinterpr etation and turn in a richer report. Furthermore, these second meetings with interv iewees allowed me to carry out a personalized transmission of the inform ation collected through th e research to each person interviewed. The final report was turned in to the five members of the administration and personalized meetings were held with each of them in order to answer specific questions. Afterwards, a formal presentation of the findings was held with all NGO staff members where questions and comments were presented in an open-forum format. Currently, four months after the termination of the fieldwor k, I am still in contact with the NGO staff and work towards explaining and expanding the information included in the report. Ethical Considerations In order to ensure the correct application of the ethical guidelines established for anthropological research, the following measur es were taken. The research proposal was analyzed by the president of CCF and authorization for the research was granted prior to the solicitation of approval from the academ ic committee and the Institutional Review Board (IRB) at the University of South Florida (USF). Once the final proposal was drafted and approved by the committee, an application for the IRB was submitted and the research began after the approval of the proposal by this instit ution. Throughout the fieldwork investigation, the guidelines proposed by the AAA SfAA, and USF IRB were 61


followed carefully in order to provide the necessary protection to the research study participants (AAA 1986; IRB 2007; SfAA 2007). Limitations of the Study Several measures were taken through the research and writing processes to ensure that this investigation would be comprehe nsive and representational of the views and perceptions of the people under study. Even though this rese arch was carried out without major complications, there are still some limitations that need to be addressed. For example, the time available for research (total of 3 months) did not allow me to interview all of the members of the organization that I w ould have liked to. I think that interviews with the Board of Directors and people th at act as consultants for CCF could have provided useful information for understanding the internal working mechanisms of the organization. More time for field research could have also allowed me to make a follow-up of the staff members perceptions and attitudes towards particul ar children in order to see their response to the different stages of the patients treatmen t. The shortage in time (and resources) was also felt in the archival re search phase as my work within each archive had to be negotiated with time allocation for interviews and particip ant observation. The fact that in one of the archives I was not allowed to photocopy or photograph any of the documents and had to copy everything by hand further delayed my research. A positive aspect was that I did not experience as many labor strikes (only 3) as I had anticipated and therefore the research did not suffer in this sense. 62


Fieldwork Setting In order to understand the information presented in the following chapters, I feel it is necessary to present a general backgr ound of the setting where the fieldwork took place. I have organized the section in orde r to provide information about Argentina and its history, specifically the areas related to th e structure of its public health system and the establishment of a governmental interest in children. Due to the fact that any countrys history is actually the combination of mu ltiple histories, where official accounts and muted voices intertwine to create spec ific configurations of public memory 23 this narrative of Argentine history is partial and bi ased. It includes a general view but focuses on the specific events and disc ourses that I consider most characteristic of the country and its people and that I believe are more directly related to the topic under study. Argentina is located in the southern c one of South America. The first Spanish expeditions landed here in 1516 and encountered groups like the Diaguita, Pampas, Querandi, Huilliche, Mapuche, and Tehuelche that had populated the area for centuries (Rodriguez 2006:11). The encounters between the Spanish settlers and local groups were not peaceful; in fact this te nsion would remain until the government-organized genocides of the 1880s 24 Pedro de Elizalde founded Buenos Ai res in 1536, a city that would grow considerably from the 1500s to the 1700s when the Virreinato del Rio de la Plata (Viceroyalty of the River Plate) w ould gain autonomy from Peru. 23 See Riles 2006, Scott 2000, Trouillot 2003. 24 For more information on government campaigns like La Campaa del Desierto refer to Andermann (2007), Auza (1980), Siegrist and Martin (1981), and Walther (1970). 63


Independence was obtained from Spain in 1820, but consecutive civil wars kept the country in almost permanent state of violence. Internal struggle was the product of power competition between elite s and the confrontat ion of different ideas regarding the construction of Argentina as an independent nation headed towards progress. Within this idea of a successful country only certain types of citize ns were considered. This is one of the reasons why the large amount of Afro-Argentines that populated Buenos Aires during colonial times are hardly included in depictions of the countrys history (even if they represented a third of the population at th e time). It also expl ains why local ethnic groups were purposely erased from historical imagery, museum expositions, and historical reconstructions of Argentina (A nderman 2007). Furthermore, it explains the elites attitudes towards certain immigrant populations (especia lly Italians and Spaniards) during the migration waves of the late nineteenth century (Rodriguez 2006). As we will see in Chapter Four, these ideas on the construction of a newly emerging country permeated the production of public institutions lik e the educational and health systems, creating frameworks desi gned for the disciplining and exclusion of particular individuals (Armus 2007; Rodrigu ez 2006). These processes were mainly headed by government institutions, but as we will see in the next chapter other types of civil society organizations like communal gr oups, charities, and beneficence societies played an important role as well. 64


Chapter 4 The History of Pediatric Me dicine in Argentina: the Role of the Sociedad de Beneficencia The body is a biopolitical reality; medicine is a biopolitical strategy Foucault (1994:137) NGO Involvement in the Provision of Healthcare Services Contrary to what the contemporary lite rature on non-governmental organizations in Argentina stipulates, non-gove rnmental actors have always b een present in the delivery of healthcare. A quick look at charitable a ssociations, mutual help organizations, groups based on occupation and nationa lity, and beneficence societie s will demonstrate that these groups were actively involved in the design, creation, and ad ministration of the infrastructure of the public health syst em, the implementation of campaigns and programs, the training of professionals, and the dissemination of medical knowledge. The purpose of this chapter is to shed light on the ro le played by one of these actors, the Sociedad de Beneficencia, in th e medical institutionalization of children. As other authors have established, the paradi gm of the Sociedad de Beneficencia has permeated the practices of many non-gove rnmental organizations until today 65


(Thompson 1995:35), so an in-depth analysis of their active involvement in the creation of an extensive medical infrastructure, part icipation in the establishment of pediatric medicine as a legitimate discip line, and the institutionalizatio n of children is fundamental if we are to understand how and why contem porary NGOs oriented towards the medical treatment of children work the way they do. Furthermore, many of the institutions that were once administered by the Sociedad continue to provide medical a ttention to children from all over the country and part of the ethnographic portion of th is investigation was carried out in one of them. Therefore, a histor ical review of the Sociedad and the impact of their work on society as a whole sets the tone for the following chapters. The specific ways in which the Sociedad de Beneficencia contributed to the establishment of pediatric medicine will be explored and their actions will be linked to larger processes that were taking place na tionally and internationally regarding the conceptualization and treatment of children. Speci al attention will be pa id to the activities the organization carried out at the end of the nineteenth century and beginning of the twentieth century (approximately1870s to 1930s) due to the f act that the largest efforts of the State to institutionalize and medicalize childhood took place around this time, and the Sociedad abandoned its more e ducational perspective and incorporated a more obvious medical orientation during this period. Furthermore, the Soci edad de Beneficencias work after the 1930s was heavily reduced due to different political pressures ending in its complete dissolution in 1947 25 25 The Peronist state used the centralization of social beneficence and assistance as one of its most important populist political tools. All private beneficence societies and groups were dissolved and this work was absorbed by the Fundacion Eva Peron (Biernat and Ramacciotti 2008). 66


The Sociedad de Beneficencia The Sociedad has received different labels from researchers. Some have referred to it as a quasi-governmental ladies char ity organization (Rodriguez 2006:105), while others have described it as as a private entity created by the State to undergo public functions (Thompson 1995:26). An adequate assessment of th e type of organization that the Sociedad was generates problems because they had an obvious link with many government institutions in terms of funding, use of infrastructure and decision-making, as it will be seen throughout this chapter. By shedding light on the disagreements among researchers on whether the Sociedad was g eared more towards the governmental or nongovernmental sector, this chapter attempts to turn the attention of the reader to the arbitrariness of making this distinction in the first place. It points to the difficulties of establishing an adequate analysis of the St ate and the ways in which it permeates our everyday life and leads us to question the idea that NGOs can actually represent alternative forms of operation. This issue has been established within the literature on NGO involvement in the provision of healthcare. In an analysis of the potential of non-governmental participation in the health sector Gilson et al. (1994) indicated that interaction between NGOs and government is inevitable (1994:19). For instance, NGOs must in many cases obtain certification or licenses from government in stitutions, public health management teams incorporate NGO representatives for specific activities, government institutions provide funding in the form of subsidies for NGOs, a nd some governments devise strategies to supervise the programs implemented by non-govern mental actors (Gilson et al. 1994). 67


The information in this chapter shows th at the relationship between the Sociedad and the government was heterogeneous and suffered transformations through time. The different administrative boards of the Sociedad and the government officials in office maintained a wide range of viewpoints on the role that this organi zation should play in the medical treatment of children, sometime s ending in conflict and other times, in collaboration. Therefore, in stead of trying to establish an adequate label for the Sociedad, I find it highly important to describe the measures that this organization took to contribute to the institutiona lization of children and the legitimating of the medical profession. I wish to explain the ways in which the Sociedad both operated according to government models and utilized models that were foreign to the State. This organization of women was created in 1823 when Bernardino Rivadavia, the President at the time, issued a governmental de cree. In this documen t he established that: the organization titled Socied ad de Beneficencia would be legally recognized by the secretary of government; the attributions of this society would be to direct and inspect the Girls schools, Casa de E xpsitos, birthing houses, women s hospitals, orphanages and every other institution directed at women.; si x hundred pesos a year would be provided to this society from the reserved government fund; and three thousand pesos would be destined to the girls schools (Archivo Gene ral de la Nacion 1999:13). The first members of the Sociedad were thirteen women from the upper class who came to be called the first thirteen 26 26 The first thirteen were: Mercedes de Lasala y Riglos, Maria de la Concepci n Cabrera de Altolaguirre, Isabel Casamayor de Luca, Joaquina Izquierdo, Cipriana Viana de Boneo, Manuela Aguirre de Garc a, Josefa Gabriela Ramos Mexa, Isabel Agero de Ugalde, Maria Snchez de Mendeville, Bernarda da 68


The Sociedad remained an all womens organization during the entirety of its existence. The care of children, the elde rly, other women and the sick became an important element in the role women played in society. Their involve ment in this range of activities can be viewed as an important gain in their participation in the decisionmaking processes that took place in the public sphere, while at the same time it can be interpreted as the naturalization of their role as caretakers and benefactors, and their seclusion from other, more effective, areas of social direction a nd administration (Tenti Fanfani 1989). Furthermore, as Thompson has indicated, female centrality in beneficence activities ha d little feminism and a lot of elitism (1995:27) as the women allowed to participate in these organizations came from the highest social classes. This issue has been discussed elsewhere 27 so the only thing that I will say is that many other organizations in charge of providing social assistance 28 adopted this same model; even CCF maintains an almost all female staff and has a difficult time incorporating male volunteers. The creation of this Society is related to larger issues that were taking place in the country in terms of the provision of social assistance. On the one hand, restructuring was taking place since the country had not been independent for long. On the other hand, Pres. Rivadavia had passed the Law on the Refo rm of the Church just one year before. Chavarria de Viamont, Maria del Rosario Azcu naga, Justa Foguet de S nchez, and Estanislada de Cossio y Guti rrez (SN 41). 27 See Armus 2007, Rodriguez 2006, Tenti Fanfani 1989, Thompson 1995. 28 Some of the most important ones are: Conferencias Vicentinas de San Vicente de Paul (Recalde 1991), Asociaci n Conservaci n de la Fe (Association for the Conservation of the Faith (Recalde 1991), Fundaci n Eva Per n, Amalia Fortabat, and even the Madres of Plaza de Mayo (Thompson 1995). 69


This law removed all assets and privileges from religious congregations, and consequently, terminated most of the char ities that had provid ed healthcare and educational services to the population 29 The Beneficence Society was apparently created to fill these gaps (Thompson 1995). In a report made the day that the Beneficence Society was officially installe d, Rivadavia was quoted saying the force of the revolution [indepe ndence] in the country had corrupted the moral; due to the fact that men had been forced to move from one place to another only caring for their own ambition and partial interests; the revolution itself had not allowed them to take care of such a primordial object [women], and in reality, due to th is, the country was in real chaos. [] the Society should use their work to fill this void and build the structure over which the public moral should be elevated (Archivo General de la Nacion 1999:15). The elevation of the public moral would mainly entail two activities: the creation of a healthcare infr astructure and the educa tion of the population. The infrastructure developed by the Beneficence Society was impressive considering that most of their work was done with unstable economic support 30 The system elaborated by the Sociedad achieved such complexity th at entire networks pertaining one disease were built. Furthermore, they developed methods for the recollection of statistical information pertinent to each institution. Detailed documentation took place at each hospital focusing mainly on the entry of patie nts, the number of deaths, and the number of patients that remained in care at the time. 29 The most important religious organizations or congregations that provided social assistance to the general population at this time were: The Bethlemite Order, Hermandad de la Santa Caridad (Holy Charity Sisterhood), and the Jesuits through their Compaa de Jesus (Company of Jesus) (Thompson 1995:21 24). 30 At the archive there are several letters of the president of the organization demanding from different public officials the funds that were promised for education programs, architecture projects, and payment of salaries. 70


Although one cannot deny that these servic es were necessary at the time and they improved the living conditions of the populatio n, it is important to mention that the government might have had different motives for the creation of the Sociedad de Beneficencia, directing their efforts to issues that were politically required. In other words, the period when the Sociedad had gr eater governmental suppor t and when most of its larger projects were implemented, was a time when important ideas on nation-building prevailed around intellectuals and political auth orities. Rodriguez (2006) explains that within a country characterized by a high leve l of ethnic heterogene ity, ideas regarding national identity that could unite the enti re population were necessary. Government institutions and other organi zations like the Sociedad pl ayed an important role in disseminating ideas about what Argentina s hould be like and what it meant to be Argentine. From 1876 onwards a significant transforma tion occurs in the approach used by the Sociedad in working with children. In this year, a law was passed in Argentina indicating that all sc hools had to depend on the Consejo General de Educacin (General Education Council) and, therefor e, the Sociedad had to tran sfer all of the schools that were under their administration to this govern mental institution (Or tiz 1990:37). Issues such as this one had generated conflicts between the leaders of the Sociedad and important public officials for some time. For example, when Sarmiento (General Director of the School of the Province of Bu enos Aires) published the Second Report of the Department of Schools, Mariquita Sanchez (the Sociedads president) replied: What a bad hand my old friend has play ed on me this time with this dark report against this poor Sociedad [ ] You criticize us because we do not make innovations, and among all of your evolutions, you provide the 71


saddest result where in your Model School only one permanent discipline remains. Your ingenuity is preci ous [] and in a land where men are always at civil war, dont you believe that it is useful for women to care for these establishments of charity and education of th eir sex? [] You are unfair, are not satisf ied with politics and boys and want to fight with women; and you do not know how bad an enemy they are! [] (Ortiz 1990:38). Authors like, Ortiz (1990), have indicated that after being dispossessed of their schools, the Sociedad concentr ated all of their attention on social beneficence and healthcare. This so called medical facet of the Society began around the late 1870s. Without disproving Ortizs (1990) point, it is probable that the Sociedads decision to change approaches was also influenced by la rger issues taking place in Argentina that referred to the regulation of society, its medicalization, the reproduction of the labor force, the creation of a suitable health care infrastructure, and changes in the conceptualization of childhood that were taking place worldwide. The Institutionalization of Childhood I do not understand why the child, being the condensation of our illusions and the realization of our hopes, the live and essential motor of progress and the animator of the entire Universe; receives so little attention from Men, Peoples, and Governments (Rueda 1937:3). A large portion of the liter ature produced within th e anthropology of childhood has demonstrated that the modern representa tion of childhood as another stage in the lifecycle emerged in Europe between the fifteenth and eighteenth century 31 Notions 31 In order to see specific historical reconstructions of childhood elaborated from an anthropological point of view, refer to Haas (1998) who carried out a study on the historical transformations of labor in Italy; Rosalind and Janssen (1996) have provided an excellent description of the games, rites of passage and 72


about the nature and special needs of child ren demanded attention to their emotional development within the home and the instaura tion of a system of fo rmal education that could prepare them for their transition into the adult world (Ari es 1962; Stephens 1995; Scheper-Hughes 1987; and Scheper-Hughes and Sargent 1998). Through time, a large quantity of institutions contributed to th e generalization of childhood (schools, the health system, the judicial system, etc.), first among western societies, and consequen tly, through colonialism and subsequent processes of globalization, in non-western societies as well (Aries 1962). Therefore, the changes in the representation of childhood have always b een linked to greater political and economic transformations (Stephens 1995). In the case of Argentina, several authors agree that the States concern for children and modern ideas on childhood were introduced in the end of the nineteenth century (Biernat and Ramacciotti 2008; Co langelo 2008; Rodriguez 2006). Even though the country had institutions dedi cated to the care of childre n well before this time period, it is from the 1880s and beyond that children become a clear project of the nation 32 This transformation in public policy has b een attributed to several factors. According to Rodriguez (2006), the evoluti onist ideas that became popular in the work of a great deal of the professionals i nvolved in the design and implementation of the scientific, educational, and sa nitary systems of the time play ed a fundamental role in the education experienced by children in Ancient Egypt; and Calvert (1992) has used material culture as a way to reconstruct childhood in the United States during the seventeenth and twentieth centuries. 32 Some of the previous institutions that I am referring to here is the Casa de Exp sitos created by the Viceroy Jose de V rtiz in 1779 and the different facilities and institutions administered by the Sociedad de Beneficencia since its creation in 1823. 73


institutionalization of childhood.Herbert Spencers Individual Against the State gained a lot of attention around this time as people were taken with his ideas on the care of offspring among the higher species and the importance of the reproduction of the human species for the general advancement of t he race (Mead 2001:115; Rodriguez 2006). Jose Ingenieros, a criminologist and psychiatrist, was one of the main supporters of these ideas and was responsible for introducing them among Argentine scientists (Rodriguez 2006). These and the religious ideas that had been prevalent since th e colonialization of the country made institutions like marriag e and motherhood the main focus of political authorities. This approach led to a greater participation of medicine in the regulation of families by using an image of children as the future citizens of a nation and proof of a race that was directed toward s progress (Rodriguez 2006:115). During the last decades of the nineteenth century, the high child mortality index (Biernat and Ramacciotti 2008; Rodriguez 2006) and the low birth index (Nari 1996) became public concerns. During a time when Argentina looked incessantly towards Europe in order to obtain r ecognition and as a source of insp iration, the reduction of this mortality and the population of the country en tered the political agenda. One of the reasons infant mortality became a serious conc ern was that this index was used as an international marker of the state of a country s health (Nari 1996). Argentina needed to prove to the world that it counted with the n ecessary infrastructure to sanitize and educate its population, and reprodu ce its labor force. The low birth index also became an interest to the State, but for other reasons. As Nari has indicated, Quantity-quality was one of the axes that cut through the medical discourse of the time, emphasizing the cont roversial issue of purposely raising the 74


amount of births, while at the same time im proving the quality of the race (1996:155). This phenomenon was linked with the diffusi on of the evolutionist ideas mentioned before and the introduction of eugenics (R odriguez 2006). According to this school of thought, human capabilities, talents and propens ity to disease are hereditary and the improvement of the white race must be ach ieved by reproducing certain individuals or groups classified as superior and in hibiting the reproduction of people deemed inferior. Argentine euge nics had a strong neolamarck ian influence because it established that the morphologi cal and functional ch aracteristics of individuals could be modified by the social and natural environment and then be hereditarily transmitted and integrated into the genetic pool (Biernat and Ramacciotti 2008; Miranda and Vallejo 2005). Several authors have indicated that the immediate result of production and dissemination of these ideas wa s the transformation of the role of women within the national imagination associating them with motherhood. The new ideal of the mother was presented as universal, ahistorical, natu ral (Nari 1996:154). A large portion of the assistance programs that were created at th is time focused on making women conscious of the instinctive quality of motherhood and the mother-child binomial therefore explaining a social relationship based on bi ological characteristics (Biernat and Ramacciotti 2008:333). Infanticide, the aba ndonment of children, and adultery became penalized and the insertion of women into th e labor market was seen negatively as it would drive them away from their duties as mothers (Bie rnat and Ramacciotti 2008). In order to promote proper motherhood, the Argentina State relied on the schools of puericulture and, la ter on, pediatric medicine developed in Europe and the 75


United States. The ideas that revolved ar ound childhood would gradually start to change, as it began to be represented as a unique stag e in the lifecycle; a stage that had to be regulated by the State, through the health system. The Professionalization of Pediatric Medicine We must save from the cradle the future of a homeland in danger R. Gutierrez (Sociedad de Beneficencia 1910:331). The literature that has historically expl ored the institutionalization of childhood in Argentina has either studied it within the educational system, the judiciary and penitentiary system or through the creation of institutions dedicated to the care of abandoned children. These authors have provi ded valuable information in order to understand the political uses of the category of childhood, the negotiation of its meanings and representations, and the role of the State in the regulation of individuals. However, in these narratives, the tr ansformations that took place with in the health system tend to occupy a secondary role. As we mentioned before, at the end of the nineteenth century several factors led to the enhancement of the public interest in ch ildren, their developmen t, and well-being. These transformations were part of larger attempts to populate a relatively empty country, regulate large masses of incoming immig rants, and create idea l types of citizens. The migrant population entering the country at that time was thought to contain bad habits (Rodriguez 2006). Their children were se en as blank slates and were therefore targeted as a way to homogenize the populati on and create a civi lized country that could move towards progress, like the above quote by Ricardo Gutierrez, a famous Argentine pediatrician, indicates. 76


This emphasis on homogenization formed the base of both the health and educational system. In an article writte n in 1920, physician Eleodoro Gimenez mentioned that education can correct the influence of th e family environment in all cases; therefore it is desirable that childre ns education should be cont rolled by the State, whose functionaries, shaped by science for life, are capable of modifying the dark shades that contemporary reality offers to children of various means 33 . Immigrant parents were considered unsuitable for raising proper citizens and even though their children appeared most impor tant to the nation, pare nts also needed to be regulated. Therefore, several of the institutions created by the Sociedad de Beneficencia were directed at either educating or punishing mo thers. Casas de Depsito (healthcare and welfare institut ions) like the Womens Hospital (Hospital de Mujeres) or religious institutions like the Spiritual House se rved to contain women that had failed at their domestic roles, committed abortion, infanticide, or adultery (Rodriguez 2006:105). This investment in infrastructure and human resources was also geared towards children as pediatric medicine began its establ ishment as a separate medical specialty. As Colangelo has indicated, towards 1900, in the framework of local processes of the construction of childhood as a social probl em, but at the same being part of an international movement, certain doctors began to configure their professional identity in terms of childrens doctors or pediatricians (2008:2-3). The consolidation of pediatric medicine in Argentina was the product of the incorporation of ideas on puericulture and pediatrics that were generated in Europe at that 33 Santin Carlos Rossi, La salud y mentalidad de los ni os en relaci n con las condiciones econ micas del hogar, RCPML 7 (1920):123 124. 77


time, especially in France and Germany (R odriguez 2006). There are a large number of publications made by doctors, among them th e first Argentine pediatricians, which reference the work that was being carried out in these countries (Herrera Vegas 1876 in Bonduel 1982; Rueda 1937; Bonduel 1942). When tracing the history of the academic program on Pediatric Medicine in Argentina, Bonduel (1942) indicates that in its rapid and ever increasing development, Argentine pediatrics received constant beneficial influence from the great spokesmen of Europe, place where the creators of this specialty in our country acquired their knowledge. Theref ore, all of the problems that shook these older schools, had an immediate repercus sion in our environm ent (Bonduel 1942). Infrastructure This initial pediatric medicine discours e shows a transformation from studying the manifestation of diseases on children, to studying the diseases of children (Amstrong 1998). Medicine became no longer about pres enting pathologies in a smaller body, but about ways of sickening and healing that con cern a subject that is qualitatively different to that of adults (Colangelo 2008:5). Theref ore, different procedur es for diagnosis and treatment needed to be established. The medical representation of children alternated between vulnerability and plasti city, considering them to be more susceptible to disease while at the same time more resistant a nd prone to recover (Colangelo 2008). The malleability of children led the medical prof essionals attention to their growth and development as their bodies were represente d as incomplete and in building process. Pediatric medicine, then, was created with a strong emphasis on prevention and hygiene. 78


This called for the creation of a hospital th at would only treat pe diatric patients. The first project for the creation of the Hosp ital de Nios de Buenos Aires (Childrens Hospital) was presented in 1867 by Maria Josefa del Pino, president of the Sociedad de Beneficencia at the time (Meroni 1982:317). It was adopted seven years later by her successor Dolores Lavalle who accepted the position on the sole condition that the hospital be built. The hospital was inaugur ated in 1875. The initiative was heavily influenced by Rafael Herrera Vegas, a Ven ezuelan doctor exiled in Buenos Aires, and Ricardo Gutierrez, a pediatrician who carried out his training in Europe (Meroni 1982; Kohn and Aguero 1985). Gutierrez became the first director of the hospital that today carries his name. The hospital remained under th e administration of the Sociedad for fifty more years representing a valuable institu tion for medical education and practice. The emphasis on prophylaxis mentioned befo re, along with the idea of achieving a perfect race led to the establishment of a sy stem of classification of children (i.e. weak, undisciplined, pathological, crim inal, abandoned, etc.) and th e elaboration of a medical infrastructure in order to deal with them. The Sociedad incorporated this system of classification into their working dynamic speak ing in favor of the institutionalization of children, and creating specific institutions to deal with each type of child, apart from general pediatric hospitals. While evalua ting of the idea of establishing another institution for children, Dr. Paz sent the following letter to the Sociedad identifying previous ways of child rearing and socializ ation as negative forms and establishing the model of institutionalization used by the Sociedad as the perfect solution. Many people still maintain the idea that the life of the asyled is harmful for the physical and moral health of the child; this idea was perfectly applicable in other eras, where amo ng large infant groupings, an improper 79


regime was common. Today, thanks to the undeniable advances in hygiene and preventive medicine, the as ylum is on its way to not be the ghost of yesterday, and doctor as well as sociologist, work in the civilized world to improve these institutes (77). By this time, the Sociedad held a fairly strict protocol through which children would be allocated according to these characteristics. The following diagram provides a clearer picture of their organization. Girls Boys Sanatorium Asylum Orphans Asylum Institute Home for difficult children to the environment to the environment Boarding school Institute Asylum Home for difficult children Casa de Exp sitos Figure 1. Diagram elaborated by the Sociedad de Beneficenci a to illustrate the different institutions through which boys and girls could be canalized (Arc hivo General de la Nacion 1999:24). The identification of certain groups of children as de linquent and their regulation through different types of institutions has been widely discussed in the literature. What I want to focus on is the role played by the public h ealth system in the regulation of what were called weak children and the use of this classification by the Sociedad in order to justify the creation of its two coastal institutes: Sanatorio Martimo and Solarium, as well 80


as the Asilo Unzu. The following excerpts il lustrate the spatial separation of these children from the rest. The first one comes from one of the books of reports made by the Sociedad in 1901. The second one is a fragment from the minutes of a meeting of the Sociedads Congress that took place in 1923. The registration office is found at in the main sedes, which is also the Hospital de Expsitos. From this office, the children are taken to the Observation Area, where they remain for 15 days []. After these 15 days, if the child is considered health y, he is assigned to a wet-nurse who is herself under the supervision of th e Medical Inspectors. After the child reaches two and a half years of age, he is moved to the Casa de Expsitos, an orphanage with a capacity for 500 children. When the child is three years he can enter the Asilo de Mercedes, and later on from 6 to 8 years of ag eto the Asilo de Huerfanos. The girls from 4 to 5 years of age enter the Colegio de la Merced. [] Some of the convalescent and weak children are sent to nearby towns and the wetnurse has the obligation to bring them to the Hospital once a month so that their health and growth can be observed (Leg. 21 pgs. 317. 1901). The President proposed that defect ive children should not be sent to the Institute, but should be kept in the hands of the external ladies until they have achieved the necessary age to enter the Asilo de Retardados de Torres (Torres Asylum for Retarded) or any other adequate facility. She indicated that the ladies and their families should be examined by a doctor in order to ensure that the child ren are in a healthy and hygienic environment. This proposal was a pproved by Congress. (exp. 862. 1923). The term weak could be attributed to mental retardation, debilitating diseases like tuberculosis, or unknown te rminal diseases. This request, drafted by the Dr. Adolfo Rodriguez Egana, the director of the Sanatorio Martimo 34 makes reference to these particular concepts. I would like to request the elimin ation of the summer camp that this Sanatorium usually holds at the facilities that were originally dedicated for 34 The Sanatorio Mar timo was created specifically for the treatment of tuberculosis in children (Armus 2007). 81


weak children and the hospitalization of those ill with chirurgic tuberculosis for the following reasons: 1. It is against the most elementary rule of hygiene and prophylaxis to mix children that have already been t uberculized and children that find themselves in physical deficit (weak children, hereditary and organic retarded, those with infectious diseas es, etc.) as they are in a state of morbid opportunity that contributes to the propagation and contagion of tuberculosis in its different forms. 2. Considering that chirurgic tuberculosis is a serious lesion and difficult to cure, necessary to fight early on, and it occupies the nosological frame of infancy, in the different cities of the Republic, and seeing that the facilities of the Sociedad de Beneficencia (S anatorio Martimo and Solarium) are the only ones destined to house sick pe ople of this category in all of the nations territory, it is imperative for me to act according to the well-being of the Administration and try to incr ease the capacity of both facilities as soon as possible[]. (San Mar Leg. 98 exp. 7988 pg. 1-2. 1923) Armus (2007) has indicated this fear of contagiousness was partially due to the large epidemics of tuberculosis th at were taking place at this time 35 These epidemics led to the establishment of specific instituti ons, like the Sanatori o Martimo mentioned earlier, but they also generated another cate gory of weak children which is what Armus has called the pretuberculosic child, a ch ild whose delicate constitution, weakness, anemia or depression turned him into a potential victim of the disease (2007:81). In a way, any child could become infected with tuberculosis wh ich posed a threat to the family and the nation. The ones born prematurely, the ones w ith correct weight but that inhabit in humid and unclean envir onments, the rickety, the chlorotic, scrufulose, lymphatic, anemic, arthritic, and all those that have close relatives that had or have tuberculosis, asma, gota, and ot her diseases that contribute in a conscious or unconscious way to the degeneration of the race (Guerrero in Armus 2007:85). These ideas were 35 It is important to mention here that around this time there were other epidemics that could have also led to this fear of contagion like for example: the cholera epidemics of 1886 and 1887, and the yellow fever epidemic of 1871 (Kohn and Aguero 1985:137). 82


used to justify medical intervention during all levels of child growth and development. The incessant search for children with t uberculosis reached such a point that professionals like Coni suggested not to c onfuse the weak children with the needy ones []; the paleness, thinness, and protuberance of shoulder blades, were not accompanied by positive tuberculosis tests (Armus 2007:85). As soon as the idea that tube rculosis was not hereditary gained general consensus among medical professionals and politicians, gove rnment and civil society efforts turned to the analysis of the environment in which children were raised (A rmus 2007:86). This shift generated transformations in the orga nization of the Sociedad, as its members needed to be trained in order to conduct evaluations of the homes and neighborhoods of the children under their care and potential institutionalizable ch ildren. The ideas on puericulture that had remained inside the wa lls of the Sociedads institutions, could now be disseminated among the general population, becoming an important element in their everyday life, and a new justif ication for the institutionali zation of children, especially those of the lowest social classes, was established. Armus has explained this phenomenon by saying that, If, as it was though t, the predisposition to the disease had to do with the low levels of immunity resu lting in inadequate life conditions, the fortification of the bodies of th e children resulted in an urge ncy that had to be confronted by each one of the homes or through the instit utions of the State and civil society (2007:101). While carrying out an evaluation of the in stitutions of the So ciedad, Dr. Madrid Paez justified the institut ionalization as follows: 83


Seven children from a population of twenty died, victims of the most feared complication of measle s [] because we are dealing with children that came full of defects and that had until now lived in rooms lacking hygiene, exposed to repeated and multiple forms of contagion, proof, once more, of the attention that first infancy requests from us, if we aspire to have tomorrow in our faci lities, robust children unharmed by any disease that could be transmitted th rough the environment in which they lived their first years (Leg. 1, Letter 14/06/1923). Although the model of inspection was hi ghly praised in its beginning, further evaluation by physicians continued to speak in favor of direct institutionalization: Dr. Madrid Paez extols the syst em designed to remove children from the weaning nurses based on the antihygienic environment in which these ladies live and the inappr opriate nourishment that they give to the children, in spite of the inspection to which they are submitted (Leg. 1 Acta 20/06/1922). The emphasis placed by the Sociedad on th e creation of an infrastructure that could institutionalize specific categories of children has received various interpretations. Some authors have viewed this strategy as a process of obscuration, where abandoned and sick children needed to be maintained out side of the public sphere due to the risk of physical or social contagion 36 of elements deemed immoral by the State (Tettamanti 2007:1670). The presence of weak children repr esented the failure of the State, and in this case, of all other groups in charge of prophylaxis and the maintenance of social order. Other authors have relied on more uti litarian models by shedding light on the regulatory functions of institutionalization and how individuals that would be difficult to 36 When I mention social contagion, I am referring to popular ideas present at this time where delinquency was seen as a social illness and abandoned children were represented as vectors (Rodriguez 2006; Tettamanti 2007). 84


integrate in the future were socialized into good work ers (de Gonzalez 2000). Ideas such as these are evident in the various documents that refer to children as the future moral and material capital of the nation (C asaubon in Armus 2007:84). This approach could certainly explain why child ren of the lower social cla sses were the main focus of the Sociedad and government programs as they would represent the largest bulk of the labor force (de Gonzalez 2000). Another less analyzed explanation for institu tionalization has been that of political conversion. Some authors have explained the targeting of poor children because of their representation as potential criminals, but few have talked about their representation as political agitators, especi ally anarchists. Rodriguez (2006) provides an excellent explanation of this situation: Anarchism, considered by many the most explicit challenge to landed, business, and government interests, cam e to be seen by the Argentine elite as the biggest peril of the 1890s. Stat e leaders found themselves in a bind: they needed immigrants for nationa l development and to populate their country in pursuit of national greatness, but they did not like the ideas the immigrants brought with them. Supp ressing such ideas and controlling rising social conflict became crucia l to national goals of successful development [] (Rodriguez 2006:24). The institutionalization of these potential political threats would have represented a feasible solution to future problems as th e children would be disciplined according to the elites political doctrine and moral values. Furthermore, the extensive infrastructure of the Sociedad permitted the referral of children through different types of facilities (experiencing different levels of security) and the option of rein stitutionalization after dismissal was not rare. 85


Medical Education and Practical Training The Argentine State played an important role in the establishment of pediatric medicine as a separate domain of medi cal knowledge and practice. Through the University of Buenos Aires (UBA), it cr eated a suitable place for academic training, discussion, and exchange of information. Dr. Rafael Herrera Vegas, in a speech pronounced during his incorporation into the National Academy of Medicine on December 3 rd 1876 mentioned: In summary, due to the fact that the study of disease in children has great importance from the perspe ctive of science, humanity, and the homeland, it is up to the College of Medicine to make an effort to establish as soon as possible the cour se on children that exists in its academic program. There is no caus e that can be considered an insurmountable obstacle so everyone would accept as glory the inauguration of this gender of st udy, after competing before the law, without any other reward at this time but to do good, hoping meanwhile, that the honorable legislators become convinced, in the same way as us, of the need to save the health and lif e of the children that represent the excess of our mortality [] (Herrera Vegas 1876 in Bonduel 1982). The professionalization of pedi atric medicine began with a course in the academic program of the career in Medicine offere d by the UBA under the name of Ctedra de Partos, Enfermedades de Nios y Medicina Legal. In 1883, under a decree issued by the Executive Power the Ctedra de Enfermedades de los Nios y Clnica was created and Dr. Manuel Blancas was chosen as professor. It is in 1919 that the first Ctedra de Pediatra y Puericultura, an exclusive course on pediatrics, was created at the Universidad de Buenos Aires (Meroni 1982:318) 37 This last course represented an important 37 In order to see historical reconstructions of the course refer to Bonduel 1942, Meroni 1982. 86


transformation in the teaching of pediatric me dicine as it incorporated a preventive and hygienic aspect of medical treat ment that had been absent in the other courses (Colangelo 2008). The Sociedad de Beneficencia played a fundamental role in this process by providing a suitable place where re sidents interested in pediat ric medicine could carry out their practices. It supported the training of pediatricians abroad, the creation of new courses on pediatric medicine, and provided f acilities for medical research. This was a slow process, but by the end of the Nineteenth Century, the Sociedad had a large group of physicians and nurses as permanent staff members. A Medical Council was created. These healthcare professionals worked in the Hospitals, Asylums, and Orphanages administered by the organization. On the one hand, they were important assets in the justification of measures and activities that were of intere st to the Sociedad as they provided a constant medical ev aluation of their programs and facilities and this could be used to strengthen the organizations position in the eyes of the State. On the other hand, they demanded resources and attention from the administration through their requests for personnel, the improvement of the infrastr ucture, and the approval of courses and professional training abroad. Some of the fragments of le tters and meeting minutes i llustrate these points. In 1922, Dr. Madrid Paez, director of the Casa de Expsitos, wrote an evaluation of the organizations model of institutionalization of orphans. Seven deaths occurred due to the smallpox in children of parents with tuberculosis and the contaminat ed environment where they lived is, without a doubt, a deplorable reality th at imposes the need to unite efforts in an intense and decided prophylactic campaign that can protect some 87


many precious existences now in dange r. If these children, instead of entering the HOME had remained in the houses of their wet nurses, without a doubt, they would not have made it enough to occupy a bed in the hospital; they would have fallen one by one, as the others that live outside of this facility (Leg. 1, Letter 14/06/1923). The Sociedad relied on the professional opinion of its doctors whenever it was necessary to change norms of operation or incorporate programs. When problems arose because of an increase in infant deaths the following measures were taken: Name a commission composed of pe diatricians from the Hospital de Nios and Casa de Expsitos with the purpose of studying this issue and all of its details and inform th e Sociedad about the most convenient solution (Leg. 1, exp. 8621, Acta 19/10/1923). The doctors that were part of the permanent staf f also used this power to their benefit. In a letter directed to the administrators of the Casa de Expsitos, Dr. Alfredo Centeno argues that: This Board considers, without re serves, that th e institution of medical inspectors has come to fill a large void in the vigilance of the orphans distributed in the municipali ty, producing palpable benefits from all points of view, but it believes that the number of doctors in charge of inspection is limited, overloading their duties, and the Sociedad would be adopting a convenient measure if they increased this service with the purpose of perfecting this important br anch of the establishment (Letter 23/02/1901). The document presented before where Dr. Madrid Paez praises the role of the Sociedad, ends as follows: All that is left is for me to reite rate to the distinguished Sociedad, almost as a complaint, the request that I have made many times, of the need that our old and modest buildin g has, of the construction of a good pavilion of isolation that can contain a ll of the infectious patients that are present in our Hospital in all seasons of the year, due to the fact that the 88


new Casa de Expsitos, is unfortunately a remote fact because of the current economic conditions of our public funds (Leg. 1 Letter 14/06/1923). The requests that the Sociedad hardly re fused were those pertaining the dictation of courses or establishment of training progr ams in their facilities. Their archival collection is filled with letters written by th eir permanent doctors soliciting permission to use the Casa de Expsitos as an academic and training facility for both students of Medicine and licensed physic ians. Dr. Pedro de Elizalde 38 requested permission every time he intended to teach a course: I have the pleasure to address the Director in order to request the authorization to dictate during the second week of January a course on the perfection of pediatric clinical training for doctors and alumni using the elements and patients of this Hospital (Letter directed to Dr. Cranwell, director, Leg. 2, 21/11/1921). Dr. Cranwells response approved the re quest and justified it by stating: It is my pleasure to inform you of th e favorable response to your request, because it is a course directed at doctors, which will allow them to recognize the benefits th at our institution lends, and make use of this valuable educational material that will improve our knowledge of infant pathology (Leg. 2 3/01/1922). The courses that were taught in facilitie s of the Sociedad by 1944 are included in Table 3 with the name of the doctor in charge. As can be seen, the numbers and specificity of courses imparted for pediatri cians by this time had greatly increased. 38 Dr. Pedro de Elizalde worked at the Casa de Exp sitos for over 40 years, serving in different positions: medical inspector, ad honorem physician, director of the Casa de Exp sitos, and honorary ad honorem physician. In +, the Casa de Exp sitos was actually named after him. As the reader will see, the ethnographic portion of this research was partially carried out in this institution that still carries his name. 89


Table 3. Courses imparted in the Casa de Expositos up to 1944 (Acta 12/07/1944) Course Doctor Puericulture Dr. Pedro de Elizalde Infant Tuberculosis Dr. Pedro de Elizalde Clinical Pediatrics and Puericulture Dr. Pascual R. Cervini Infant Orthopedics and Surgery Dr. Marcelo Gamboa Ear, Nose, and Throat Clinic Dr. Yago Franchini Dermatology Dr. Luis Pienini Puericulture (primary infancy) Dr. Raul Beranger Nourishment Dr. Antonio Giusani Cardiovascular Rheumatism and Elect rocardiography Dr. Ricardo Damorosi The institutions of the Sociedad main tained whole programs like those of the School of Nurses (created in October 5 th 1936) 39 and School of Nannies which also employed physicians and represented important contributions to the training of healthcare professionals in the country. During its final years of operation, the Sociedad incorporated a large number of psychologists and in 1942, th e Board of the organization authorized the creation of an organization de dicated to the permanent synchronization of 39 Reference is made to this school in Sociedad de Beneficencia (1945). 90


the medical and pedagogical e ffort of the Sociedad (Leg. 2 Acta 24/11/1944). This organization would dictate courses on psycholog ical aspects of education to the teachers of the Sociedad and any other pe rson interested in specializing in this area (Leg. 2 Acta 24/11/1944). As it was mentioned before, Argentina ha s always searched for innovative ideas in other countries, especially the United St ates and countries in Europe. Pediatricians were not the exception and many of them carried out practices a nd training programs abroad (Kohn and Aguero 1985:135-136). The Sociedad realized the importance of this exchange and supported those doctors that were willing to travel abro ad as long as they would return to Argentina with informati on relevant to the wo rk being done at the organizations institutions. In 1931, Dr. Madrid Paez wrote a letter to the Board requesti ng for a short leave of absence from Dr. Thompson so that he could travel abroad. I accompany the request of a license from Dr. Alfredo S.B. Thompson, for a period of six months so that he may travel to Europe and North America. Due to the fact that in this case we are dealing with an outstanding physician of this Casa, sc holar and irreproachable personal conditions, I have believed that the So ciedad could take advantage of the permanence of Dr. Thompson in the af orementioned countries and request him ad-honorem, to study the organization of the infant clinics of the states that he visits (Leg. 1, 16/04/1931). The meeting minutes from June 28 th 1946 indicated that: Dr. Agustin A. Salvati, salaried doc tor of the Casa de Expsitos, on his return from his tour of the United St ates of America, presented a report about the different points of medical order that ar e of interest to the institution (Leg. 2, Acta 28/06/1946). 91

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The Dissemination of Medical Knowledge As Colangelo has indicated, the process of professionalization and institutionalization of pediatricians and pedi atric medicine implied the delimitation of a particular object of study and intervention and the legitimating of a new specialization through the creation of academic spaces, sp ecific scientific events, professional associations, and specialized journals (2008:3). The Hosp ital de Nios, created by the Sociedad and administered by them for ove r 50 years, produced the first pediatric scientific publicati on in Argentina, and some even say in South America, in 1897 (Meroni 1982:317). They cal led it Revista del Hospital de Nios (Journal of the Childrens Hospital), and not long after its cr eation it became part of the Archivos Latinoamericanos de Pediatra (Latinameri can Pediatric Archives) (Puga 1982:334). An editorial in the first issue indicated: The specialization in th e area of infant medicine is too extended over Latin America for childrens doctors to keep publishing the fruit of our observations and work in general jour nals of Medicine. Like in Europe, we, doctors that in these countries, ar e in charge of the hygiene and infant medicine, need special organizations a nd have thought of positive interest to gather all of the Latin-American pediatric production in one journal, that can constitute a real Central Page as complete as possible, not only for medicine and surgery, but also for the hygiene of infancy (Puga 1982:334). The creation of an academic journal pertai ning only to pediatric medicine further legitimized the establishment of this discip line as an autonomous area of medical inquiry and practice and it provided the necessary framework for the dissemination of the knowledge produced in Argentina. Although ma ny pediatricians continued to publish in European or North American journals as sing le authors or in collaboration with medical 92

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groups from these countries, a new venue ha d been established for the communication of professionals within Argentina and among Latin American countries. The creation of academic so cieties and their organizati on of professional meetings served this same purpose. In October of 1911, Gregorio Aroz Alfaro, a pediatrician famous for his work on tuberculosis, crea ted the Sociedad Argentina de Pediatra (Argentine Society of Pediatrics) 40 His initiative followed the work that was being carried out in Europe when, in 1907, the first call for the creation of a Societe Internationale de Pediatrie (Internationa l Society of Pediatri cs) was published by a Russian doctor from the University of Kharkow (Colangelo 2008:4) 41 Therefore, the creation of the first pediatric so ciety in Argentina has been in terpreted, first of all, as a turning point, and second, as the ultimate proof of the influence of European medicine on the conceptual frameworks and operating procedures of local doctors. When referring to the creation of this So ciety, Morano argues that Pediatrics is born in our country acquiring from its birth a conceptual characterization of signs that are different to those of the other specialties; and this was a European consequence, particularly French and German of the time. This is the reason why the object of this discipline is the child as a whole, with the biological attributes that confine its growth and development, a nd it is not directed at an organ, a system, or even a particular disease (1982:328). Academic societies took on the task of organizing prof essional meetings. The first pediatric meeting took place in Paris in 1912 42 One year later, Argentine pediatricians 40 This Society would, as of 1929, also direct the Archivos Argentinos de Pediatr a mentioned before (Col ngelo 2008:4). 41 The creation of this society was consolidated in 1910 (Morano 1982:328). 42 The meeting was called First Meeting of the International Association of Pediatrics (Colangelo 2008:4). 93

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organized the first Congreso Americano de l Nino (American Meeting on the Child) in Buenos Aires (Colangelo 2008:4). Several mee tings followed as different institutions and organizations in the country supported them by providing resources in the form of money, personnel or infrastructure. In turn, they were often invited to participate in the meetings by sending physicians as representative s. Such was the case of the Sociedad de Beneficencia. In the meeting minutes of September 27 th of 1940 it is stipulated that The President [of the Sociedad] manifested that the Organizing Committee of the First National Meeti ng on Puericulture had invited the Sociedad, through the Ministry of Forei gn Affairs, to par ticipate in this Meeting that will take place on October 11 th []. The President added that it had authorized, ad referendum of the Assembly, that some of the sessions that were to take place in this Meeting be carried out in the Instituto de Maternidad [Maternity Institute] and the Casa de Expsitos, and that Dr. Peralta Ramos shoul d organize the attendance to the expositions of the Meeting (Leg 2. exp. 1275, Acta 27/09/1940). Physicians that belonged to the permanen t staff of the Sociedad were encouraged to attend as permits were usually granted. It is my pleasure to inform the Insp ectors [of the Casa de Expsitos] that the Presidency approves the leave that Dr. Pedro de Elizal de, director of the institution, requests for 10 days starting on the 29 th of the current month with the purpose of attending the Cuarto Congreso de Pediatra (Fourth Meeting on Pediatrics) that will take place in Chile [] (Leg. 2, Letter 13/11/1941). The participation of the Sociedad in this process of dissemination of medical knowledge by supporting journals, societies, and meetings pertaining solely to pediatric medicine contributed to the legitimating of pe diatric medicine as an important specialty of medical practice. At the same time, it was used to promote the valorization (and justification) of the Sociedad, its institutions and personnel. This search for national and 94

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international recognition certainly played an important role during th e last years of the Sociedads existence when different types of political pressures were pushing towards the elimination of private beneficence and the esta blishment of an entirely public health system. Conclusions This chapter on the medical institutionaliz ation of children has shed light on some of the processes behind the creation of the Argentine pub lic health system and the establishment of pediatric medicine as a legitimate medical specialty. The underlying theme behind this chapter (and the thesis in general), is the politization of healthcare. The ideas and processes behind the creation of the public health system shed light on the larger political and economic models guiding the provision of health care. The creation of a concept of the Argentine nation and the le gitimating of an aut onomous State relied heavily on the use of professional knowledge and practice. Due to immigration policies, economic transformations, the lite rature produced in Europe and the United States, as well as, local political agitation, child ren became of interest to the State. Since professionals were needed to deal with th is new subject, pediatric medicine became institutionalized and legitimized as a medical specialty. Previous studies have only highlight ed the role of the State in the institutionalization of pediatric medicine, but a more thorough analys is of the literature and historical documents, demonstrates that non-governmental actors were fundamental in this process. By examining the activitie s carried out by the Sociedad de Beneficencia from the end of the nineteenth century to the beginning of the tw entieth century, this 95

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chapter has demonstrated that this organization actively participated in all of the axes that led to the professionalization of pediatric me dicine: the creation of infrastructure, the establishment of a particular type of medical training and practice, and the dissemination of medical knowledge through societies, journals, and professional meetings. The analysis of the work of the Socied ad de Beneficencia allows us to question the contemporary literature on NGOs that visualizes them as relatively recent actors. By looking at NGOs historically, not only do we s ee the relevance of these actors, but we also acknowledge that most of the frameworks that are used by NGOs today are actually the product of a larger historical trajectory of beneficence societies, charities, community organizations, etc. As Thompson has indicate d for the case of Argentina, it was around these organizations [previous organized forms of civil society] that the different sectors of Argentine society that responded to di fferent interests became nucleated and ideologies of social action that superpose d, mixed with, and even modeled the social intervention of the State were configured (1995:20). Therefore, the contemporary negotiation of space and resources in the c ontext of healthcare provision between the government and non-governmental sector is the result of both the current political and economic context and the previous experien ces of organizations like the Sociedad. As we move through the other chapters in this thesis, we will see that CCF deals with a public health system that has changed in some ways, but remains intact in many others. In the strive to esta blish themselves as a serious provider of medical services, CCF staff members adapt many of the ideas on childhood, medicine, and the role of State that were presented in this chapter. Their ex periences will appear in many ways linked to the information presented in this chapter as we think of the complexity of the provision of 96

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medical services and the arbitrariness of considering the governmental and nongovernmental sectors as dichotomous entities. 97

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Chapter 5 Childrens Cancer Foundation Most of the things that we do not only have to do with families directly, but they have to do with information, dissemination, concientizati on, and the transformation of health policies. The benefit is directed at children who are sick, but these ne tworks are created to encompass all of this, to change things from the base (Carla, volunteer coordinator). The quote from Carlas interview points to the overall mission of CCF and the way its goals and priorities are framed. According to the staff, the organization encompasses more than the direct provision of services, it generates networks with other organizations and government institutions, it disseminates information through popular media, and it participates in the improveme nt of government policies. The influence exerted by CCF on the treatment of pediat ric oncology in Argentina goes beyond the number of users registered by the staff; it has multiple levels that can only be grasped when taking a closer look at their inte rnal organization and everyday activities. This chapter presents the information obtained through my ethnographic research with the Childrens Cancer Foundation. A brie f description of the hi story, structure, and current organization of CCF is presented a nd the three main issu es around which the ethnography was carried out ar e introduced. The main problems experienced by the NGO staff regarding each of these issues are presented, followed by my analysis of each problem and the recommendations I made to the administration of the organization. 98

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Fragments of the interviews with volunteer s and permanent staff are included to exemplify the most relevant cases. History of the Childrens Cancer Foundation The organization was created in 1994 by th e current president in memory of her daughter, who died of cancer, in order to provide assistance to ch ildren with cancer in Argentina and their families. During the firs t stages of the history of the organization, emphasis was placed on the elaboration and dissemination of short books and pamphlets on pediatric cancer. These books focused on t opics like the insertion of children with cancer into the school system, what to e xpect during chemotherapy and radiotherapy, how to tell the siblings of the child with cancer about the disease and its treatment, and how to help the child deal with pain. Th e books published by the organization are still an important part of the services they provide to the children and their family members. However, the organization has expanded their focus to many other activities and geographical locations, as Figure 2 indicates. 99

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Figure 2. Map of Argentina with CCFs Sedes. Sour ce of the map: Central Intelligence Agency (1996). The number of children and families in its care has expanded as well as the people in its staff. From 2003 to 2006 the organi zation had nearly d oubled its recipient population (from 1202 people to 2393). The staff of the organization is divided in three main groups: permanent staff, temporary sta ff, and volunteers. The former, are thirteen people that receive a salary each month and work full time at the organization. These are the president, vice-pre sident, psychologist, social worker general volunteer coordinator, 100

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accountant, 3 secretaries, coor dinator of Hospital Posadas, coordinator of Hospital de Elizalde, coordinator of Hospital Penna, and coordinator of Hospital de Tucuman. What I have referred to as temporary staff are all of the people that provi de services to the organization but are not part of the perman ent staff like the admi nistrative council (or board of directors), medical and psychological counselors, strategic advisees, and the healthcare professionals that participate in suppo rt meetings and training seminars. Currently, the organization has approxim ately 100 volunteers distributed among its sedes 43 Even though this part of the staff is not remunerated for their employment, they are responsible for working during specific days and cover a specific number of hours per week. Current Activities The organization provides assistance to pediatric oncology patients and their families on the following areas: emotional support, treatment support and social assistance, advocacy, recreation, education, aid networks, and diffusion through mass media. The main idea behind the provision of emotional support is to aid parents during these difficult times. When families first enter the organization, they undergo an interview. During this interview, the orga nizations social worker and the psychologist talk to the parents in order to obtain info rmation on the childs cancer, where they are receiving treatment, the severity of the cas e, their need of assistance, and any other demographic information on the child or family that might be relevant. This information 43 The Spanish word sedes is used here because the English translation is headquarters and it does not have the same connotation in Spanish. Sedes in this context would mean something similar to the different branches of the organization. 101

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is kept in a general database that can be accessed by all permanent staff members. The staff also inform the parents of all of the services provided by the organization and indicate other institutions or organizati ons that might be able to help them. CCF has a parents support meeting once a week for those pa rents that have children in treatment or who have recently fi nished treatment. During these meetings parents talk about the things that concern them, the probl ems they encounter, and how they deal with them. Even though the groups are led by the organizations psychologist, most of the talking is done by the parents a nd those with more expe rience provide advice to those whose children have recently initiated treatment. The organization also holds grief couns eling meetings for those parents whose children have died. During these meetings th e parents talk about how they are dealing with their loss, how it has aff ected other family members and the relationships they have with them, and the strategies they are using to cope with their situation. The meetings are led by the staff psychologist, and open sharing of feelings and thoughts among all group members is encouraged. In those cases where individual therapy might be more convenient, the psychologist mi ght recommend parents to meet with her on an individual basis and avoid group therapy meetings. Special support meetings are held wi th parents that have children with retinoblastoma. There are no other support meeti ngs for specific types of cancer expect for this one. Retinoblastoma is a malignant tumo r of the retina that can be unilateral (in one eye), bilateral (in both eyes) or, in the case of children, can also be trilateral (both eyes and independent brain tumor) (Medical Encyclopedia 2008). In Western countries, 102

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retinoblastoma is the most common form of childhood eye cancers (Oncology Encyclopedia 2008). CCF organizes special m eetings for the parents of children with retinoblastoma because the administration c onsiders it to be the cancer that most dramatically affects the daily routine of children and their family members. During these meetings at CCF parents are informed on how to care for the children, how to stimulate their motor coor dination, and change things around the house in order to suit their needs. The meetings also represent a time when parents can express doubts or concerns to a qualifie d physician that can guide them through the initial stages of caring for a child with this type of cancer. Sedes The staff that has worked at the CCF since its origins 44 recalled how at the beginning they managed with a few mats in the hallways of Hospital de Elizalde where they would play with the child ren while they waited for their medical consultation. Later on, they received a donation of tables and be tter supplies. By the year 1998, CCF had a small room where they could work with the children and then in 2007 the hospital granted them their own recreat ion room. The organization gradually gained space within the hospital. Figure 3 presents a timeline that better illustrates these transformations. 44 There are three staff members that worked with CCF since it was created and that remain in the organization. All of them were interviewed. 103

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1994 CCF is created 2004 Posadas headquarter is created Tucuman headquarter is created 2003 1997 Penna headquarter is created Organization starts having support groupsfor parents De Elizalde gets its own recreational room 2002 CCFs Oncology Drug Bank is created Scholarship program for physicians begins Oncology ward in Tucuman is remodeled CCF organizedthe firstLatin American meeting of organizations that support parents of pediatric oncology patients 2005 Figure 3. Timeline representing the history of CCFs sedes. Most of CCFs achievements at Hospital de Elizalde are due in part to the support of the hospital personnel and administration as the quote from the inte rview with Giselle, de Elizaldes current volunteer coordinator, indicates. Thanks to Dr. K from the oncology ar ea we got this beautiful recreation room to play with the children. She fought against half of the hospital staff, architects, directors, becau se the authorities of the hospital considered that the recreation room was something superfluous, it was not primordial and there was no need for having this type of room in the area of hematoncology. So, it was thanks to her that we got everything we have now (Giselle, de Elizalde volunteer coordinator). The administration of CCF then moved to another location, turning the recreation room in the Hospital de Elizalde into a sede that was to be administered by a coordinator and building the second sede where they were to have their administrative offices. This new building was set up close to one of the largest children s hospitals in the country, Hospital Gutierrez, and in proximity to another childrens hospital where most children 104

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receive oncology care, Hospital Garrahan. This second sede was different from the first in that it was not situated inside a hospital and could provide assist ance to children that were receiving ambulatory care or remained in the hospital for short periods of time during chemotherapy. It also became the admi nistrative focal point of the organization; the place where donations were received, permanent staff worked, and meetings were held. The third sede was establis hed in 2004 inside the Hosp ital Posadas. This hospital is located in the outskirts of Buenos Aires, it has an area of influence of approximately 4 million people, and no other hospital in the c ountry covers the same amount of medical specialties and has the same complexity (Kat z 2004). The CCF sede inside this hospital is different from the one found in Hospital de E lizalde in the sense that the hospital is not a pediatric hospital (it has a policlinic model) and the NGO does not have their own recreational room. Therefore, most of their work is done alongside the beds of the patients in the ICUs or isolation rooms 45 This sede is also different from the other hospital sedes because of the particular history of the Hospital Posadas. It was cr eated in 1957 as a hosp ital of respiratory diseases, but the demand of the population and the unwillingness of the Argentine government to create new hospitals led to th e incorporation of multiple specialties and the increase in wards and services. This ha d negative consequences in the internal distribution and organization of spaces whic h was further complicated when the hospital was used as a clandestine spot of deten tion and torture during the last military 45 Isolation rooms are private rooms for the patient and close family members where oncology patients with low defense mechanisms are kept in order to avoid infections. 105

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dictatorship in Argentina (19741976). As a result of these factors, the current hospital has many narrow hallways (some that do not lead to any room or exit), it is dark, and fails to meet basic security measures. This generates problems for the nearly 10,000 people that visit it every day (Katz 2004). Another aspect to consider while analyzi ng the Posadas is the f act that it is highly politicized in the sense that it has been us ed often as form of partisan support and it contains some of the strongest unions in the country. Katz describes it as follows, the Hospital Posadas was, finally, booty of the struggle for power in Argentina. The resources that the government provided were not few, even though many claimed their insufficiency, and its corrupt administration had allowed until my entrance to feed circuits of financial suppor t for political parties, persona l interests, and even the professional prestige [] of those deemed responsible of public health (2004:96). This situation severely complicates th e work of CCFs staff because throughout the years they have continuously confronted the administration in order to secure the resources necessary for diagnosing and treating the children under thei r care. It was not until CCF starting providing a considerable amount of money to this sede that the staff gained more autonomy, but even then the vol unteers and the coordinator must always supervise how resources are spent so that m oney, medical supplies, and materials for the children and parents (bed sheets, soap, toys, cl othes) are not deviated into activities with different purposes. Furthermore, all of the ac tivities organized by CCFs staff need to be previously approved by the administration. Even though, the volunt eer coordinator at Posadas has been able to establish adequate relationships with th e hospital personnel and administration, this was not an easy task as th e quote from Lauras interview indicates. 106

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In respect to this place, during the fi rst year I struggled greatly with the order and cleanliness of this area [pediatric oncology ward]. I still struggle, but not as much as before because before I had to find out who would be willing to listen to me. Now, at least they listen to me. Another problem we had was related to maintena nce. The people that are in charge of this area are a bit reticent to help us; they usually have a lot of work to do so I am permanently trying to get their attention. Now I go directly and ask them myself, before I had to go through the rest of the hospital personnel or administration and ask them to request it for me. Now I have the courage to do that, but it took so me time (Laura, Posadas volunteer coordinator). This transformation in the relationship be tween CCFs staff and the local hospital staff certainly had to do with becoming fam iliar with the hospital personnel and earning their space within the hospital, as Lauras interview indicate d. However, it is also linked to the financial growth of the organization and the contributions CCF has made to the hospital. For example, the fact that CCF has made an agreement w ith the directors of pediatric oncology to finance the construction of a separate recreati on room (like the one at de Elizalde) has made the hospital admi nistration more open and accessible to the demands of CCFs volunteers and permanent staff members. Another sede was created in 2003, and it is located in the northern part of the country. This sede has its own recreation room and it represents an important source of information and assistance in an area of the country that has been neglected from government services and healthcare throughout most of the history of Argentina. The final sede is found inside Hospital Penna in Bahia Blanca, a city located in the southern part of the country. It was al so created in 2003. This is the smallest sede (there is only one permanent staff member), but it is nonetheless useful to the people in the region. These last two sedes were not part of the sample analyzed in this investigation due to their geographical dist ance and the lack of time and resources available for this 107

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investigation. However, it is important to ta ke them into consideration while reading the following sections of the chapter. Population The users of the services of the organi zation represent a heterogeneous population in the sense that they are of different soci al classes, gender, and geographical origin. However, the people that make more use of the wide array of services provided by the organization are from the lower social cla sses and come from provinces outside of Buenos Aires. The staff explained this phenomenon by indicating that people from higher social classes have othe r resources at their disposal like private therapy or better recreational centers for their ch ildren when compared to people from lower social classes. Furthermore, people from Buenos Aires have th eir social networks available to them and many of the services provided by the organi zation are carried out by people with close relationship to the child and his parents (i.e. counseling, em otional support, recreation, financial support, etc.). Another reason why the services of th e organization are used mostly by people from the lower social classes is that they do not have health insurance. As it was mentioned before, according to the law 23611 46 every child with cancer and with no health insurance has access to free healthcare including oncology drugs for chemotherapy. Those with insurance negotiate the treatment and access to drugs with their particular companies; however, those without insurance are forced to enter a 46 Especially the modification of Article 6 in 2001 that turned the law into law number 25416 (National Senate 2008). 108

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complicated system of bureaucratic processes in order to secure treatment and access to drugs. The legal and bureaucratic pr ocedure includes the following steps 47 : 1. Once the child is diagnosed, the doctor pr epares a protocol for chemotherapy. The parents are informed that they must request those drugs from the Bank of Oncology Drugs. Chemotherapy cannot begin unless all drugs are in the patients possession. 2. If the child is receiving treatment in Bue nos Aires, then the parents must request the drugs from the Bank of Oncology Drugs of the Nation. If the child is receiving treatment in areas outside of Buenos Ai res, the family must request the drugs from the Bank located in La Plata (city found approximately 52 km from Buenos Aires). In order to obtain the drugs th e parents must present a letter from the ANSES certifying that the patient does not have health insurance, a clinical history made by the childs physician, a special form where the physician indicates the dosage of each requested drug, the childs official documentation, and certification of address. Once all of these documents are presented, the order for the drugs is placed and the parents ar e informed on the date they can retrieve the drugs. 3. The drugs should be available one week afte r the order is placed. However, as the social worker of the organization indicate d, what usually happens is that when the parents go to pick up the order, they are told that not all of the drugs have been obtained and they should come back next week. In some cases the delivery of 47 This procedure changes depending slightly depending on the hospital where the child receives treatment and in some cases, depending on the type of cancer the child is diagnosed with. 109

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drugs is even delayed for months which means that the childs chemotherapy is delayed for months, severely aff ecting its chances for survival. 4. The Oncology Drug Bank also has the right to reject an order. The staff indicated that this usually happens when the requested medication is expensive and imported from other countries. In the case of rejection of a request for medication, the parents have to request it from Social Development, a government institution. This request can only be made once the Oncology Drug Bank rejects the order, delaying the entire process. Parents must turn in the following paperwork at Social Development: letter from ANSES, clinical history, chemotherapy protocol, childs documentation, certification of addr ess, a social survey (indicates their economic situation), a handwritten letter requesting the medication and explaining the particular situation of the child, a nd written documentation of the Oncology Drug Banks rejection. An order is pl aced and parents are provided with a specific file number. Th is process can take from one to three months. 5. According to the organizations records, many children need coadjutant medication to accompany the drugs reque sted for chemotherapy. In order to obtain this medication they have to initia te a parallel procedur e. Parents usually try to obtain this medication at the hosp itals pharmacy. If the hospital does not have it, the parents have to go to Accin Social 48 in their corresponding county. They present the same documentation as before and when the medication is not 48 This is a government office dependent of the Ministry of Health (Ministerio de Salud) that has social assistance functions. 110

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expensive it is usually given to them right away; however, if it is expensive or hard to find parents are aske d to come back later. This is an extremely complex process for pare nts that are dealing with a sick child, are not familiar with the city, and might be enc ountering the structure of the public health system for the first time. As a result, th e guidance and support provided by CCF become instrumental in their struggle to secure the medication and best treatment available for their child. CCF not only informs them of the process, but when the Oncology Drug Bank delays the delivery of medication, the organization gives the family the missing drugs so that the child can begin with ch emotherapy with the condition that when the remaining medication arrives at the Drug Bank th e family donate it to CCF so that it can be used by another child. The social worker at CCF also assists parents by finding out which coadjutant medication is available in each county, saving them unnecessary trips. In extraordinary cases, CCF has also obtai ned medication that was missing from all healthcare facilities in the country. For exam ple, a few months ago the president of the organization made an agreement with the Minist ry of Health in order to obtain a large quantity of a drug that was only produced abro ad and build a small storage in one of the organizations sedes. Physicians all over the country could request the drug from the organization as needed. This not only reduced the amount of paperwork required from the parents in order to obtain the drug, but it also secured CCFs position as a healthcare provider and advocate on a national level. 111

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Staff CCF has a hierarchical or ganization of its staff as is indicated in Figure 4. Decisions are usually made between the Pres ident, Operative Director and Board of Directors; however all decisions go through th e Presidents approval. From the outside, this model appeared to work well because it delegated responsibilities to all permanent staff members while making the decision-maki ng process quick. However, from the inside, particularly from the point of view of the permanent staff members, this model was unfair because it did not allow everyone to work equitably in the construction and reconstruction of the NGO. The quote from Carlas interview, the general volunteer coordinator, illustrates this point. I think that our teamwork has been distorted. From the upper positions of the organization to the lower ones or ders are passed on, but from the bottom-up there are no responses or orders allowed. Consensus is not searched from the people in the lowe r ranks, however if those people want to propose something, they have to l ook for consensus from the ones in the higher ranks (Carla, vol unteer coordinator). The social worker and psychologist are the two permanent staff members that have more information about the children and their family members as they conduct interviews with them, direct group meetings and follow-up on their cases. The general volunteer coordinator is in charge of recruiting volunteers and distributing them among the sedes as well as making sure that each sede has the materials it needs to work. Each local volunteer coordinator directs its own se de, assigning time slots and responsibilities to each volunteers. The volunteers carry out mo st of the recreational duties and are more in contact with the children. 112

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President Social Worker Psychologist General volunteer coordinator Board of Directors Operative Director Posadas volunteer coordinator Pedro de Elizalde volunteer coordinator Tucuman volunteer coordinator Penna coordinator Mansilla volunteers Posadas volunteers Pedro de Elizalde volunteers Tucuman volunteers Accounting Administrative staff Consultants or temporary staff Figure 4. Organization of CCFs Personnel Demographics The staff is heterogeneous in terms of age, occupation, number of years in the organization, civil status, and number of children; however, it is composed primarily of women. Of the almost 100 volunteers that make up the organization, only three are men. In the sample analyzed for this thesis, three men were interviewed and the rest of the sample (27 individuals) was composed of wo men. The ages of the interviewees range from the early twenties to the late fifties, however, as Figure 5 shows, most of the staff members interviewed were between 30 and 40 (the mean being 36.6). 113

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Figure 5. Age of the members of CCF s staff that were interviewed. Their occupations vary, but in order to provide a visual representation of their distribution the interviewees were grouped according to 5 groups: students, teachers, psychologists, other professionals, and thos e who are not employed. As Figure 6 shows, the category of other professi onals is the largest group, re presenting 40 percent of the total sample. The staff members in this category worked as lawyers, museum specialists, occupational therapists, business administrators, and designers, among other things. The second largest group is that of students (33.33 percent) and their areas of studied were mainly centered on medicine and psychology. The third group is that of teachers (13.33 percent), which is followed by psychologists (10 percent) and sta ff members that were not working at the time of th e interview (3.33 percent). 114

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Figure 6. Distribution of interviewees by occupation. The number of years that the staff memb ers had been working within the NGO, either as volunteers or permanent staff memb ers, varied, but most of the sample (83 percent) had at least worked for an entire y ear at the time of the interview. Figure 7 presents the distribution of the number of year s working with CCF. Wh at is interesting to see in this graph is that most of CCFs st aff entered the organization recently reflecting not only the current expansion of the organization, but al so the high volunteer turnover rate that we will discuss la ter on in this chapter. 115

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Figure 7. Number of years each interviewee worked in the organization. In terms of civil status, 26.6 percent of the interviewees were married or cohabitating with their partners at the time of the interview, 20 percent were divorced or separated, and 53.4 percent were single. Most of the interviewees did not have ch ildren of their own ( 60 percent), and the ones that did, had between 2 and 3 child ren (66.6 percent of the women that had children). The fact that most of the interview ees did not have childre n could be related to the fact that most of the interviewees are single and unive rsity students. 116

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Figure 8. Number of children each interv iewee had at the time of the interview. The volunteers and staff members that we re interviewed are distributed among the organizations sedes according to their inte rests as is indicated in Table 4. Table 4. Distribution of staff members by sede Headquarter Context Type of activities Permanent staff (interviewed) Volunteers (interviewed) Permanent staff (total) Volunteers (total) Mansilla Non-hospital Recreation, administrative 4 17 10 50 Pedro de Elizalde Hospital and non-hospital Recreation, ICU visits 1 5 1 15 Posadas Hospital Recreation only within ICU and isolation 1 2 1 5 117

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Most of the staff is found at Mansilla which includes the administrations and those volunteers interested in working with children outsi de of a hospital context. Pedro de Elizalde is the second sede in size of staff and here volunteers interested in working with children in a hospital context and those that prefer to work only within recreational rooms are found due to the fact that this sede can provide both opti ons. The sede within Posadas is strictly for those volunteers worki ng within a hospital co ntext as there is no recreational room and most of th e activities with the children are carried out in the ICU or isolation rooms. Tucuman maintains a similar de sign to that of Pedro de Elizalde but it is smaller in terms of staff. Penna is the sm allest sede counting with only one permanent staff member with administrative obligations. Reasons for Working at CCF and the Initiation Process The reason why permanent staff members and volunteers decided to work within the organization varied. For most of the people interviewed the idea of contributing something to society and their interest in working with children played the most important roles in their decisions. Common id eas maintained in society about children and the need to protect them emerged in al most all interviews. The fact that these children were suffering from an aggressive disease also led several of the interviewees to state that they had chosen to work with children in these conditions because it was not fair that they were ill because they had not done anything wrong. This association between disease and culpability has been analyzed by anthropologists in different contexts. In the case of studyi ng children within a medical context, some authors have made comparisons between adult and pediatric pa tients indicating that disease in adults is represented as a normal phenomenon while dise ase (and consequently death) in children 118

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generates multiple contradictions for family members and the staff that cares for the child (Bluebond-Langner 1978). When asked why they were interested in working with children with cancer, 95 percent of the staff indicated that they had not looked for this specifically, and that CCF appeared while they searched for NGOs that worked with children on the web. Even though cancer was not mentioned as a relevant factor in why they chose this NGO, 8 of the interviewees (26.6 pe rcent) mentioned in other parts of the interview that a family member or close friend had suffered or died from cancer. This was interesting to me because the references to past experience with the disease appeared when the staff members had a hard time dealing with specific cases or the death of one of the children. The empathy of these volunteers towards the fa mily members of the child also arose out of remembering how their own experience of accompanying someone through cancer treatment had been. The transfer of these feelings was expe rienced in similar ways by staff members who had not experienced cancer or had relatives who had cancer, but that feared that their loved ones might have cancer in the future. A quote from the interview carried out with Elena, a 46 year old psychologist that ha d been working as volunteer for two years provides a good explanation of this. Sometimes I face some difficulties he re. I am a mother, I have children and working with children that have an illness sometimes makes it difficult to separate things. Someth ing happens to your children and you rush assuming that something bad happened, but you deal with it. Its terrible; last year one of my daughters broke her foot and she had to have a resonance and the first thing that came to my mind was that 50 percent of osteosarcomas appear in the ankle. Until we opened the MRI to see the 119

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result, you cant imagine the stress I we nt through (Elena, volunteer at Mansilla). Ninety percent of the staff members found out about the organization through some sort of mass media (television commercia l, newspaper add, or magazine article). Their next step was to look at the orga nizations web page and apply online for a volunteer position. All permanent staff memb ers except for two had previously been volunteers for several years before they b ecame salaried workers. Therefore, the insertion of all of the people into the organization had similar characteristics. The media savvy nature of the organization and their excel lent use of the medi a were factors that surprised me during the fieldwork. The enti re application process for volunteers was carried out online, each sede had their own mailing list, the webpage was constantly updated with the organizations most recent events, and the information of each child assisted by CCF and his family were uploade d into a general database that could be accessed by each permanent staff member online. After the volunteers had been accepted, they received an email indicating the date and time of their interview at the Mansilla sede. This was their first contact with the staff of the organization and their first tour of CCF During my fieldwork I was allowed to sit in on several of these group interviews a nd even though the inform ation provided to the volunteers was impressive, I could not help but notice how the presentation of the organization was biased. The first impre ssion of the new volunteers was the Mansilla sede. The people that led the interview were only from this sede, they were not properly informed on the activities and working hours of the other sedes, and since they had never worked within a hospital context, they transm itted stereotypes about this type of work to 120

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the volunteers influencing their decisions. Fo r example, hospital work was described as work suitable for specific types of people, usually described as strong.Furthermore, the volunteers did not have the option of vis iting the other sedes before they chose where they wanted to work and they did not have th e possibility of requesti ng a transfer if they changed their mind later. As a consequence, most of the applicants chose to work in Mansilla, severely affecting the number of volunt eers available in Pedro de Elizalde and Posadas. The interviews with the volunteer coordinators in these two hospitals pointed to their understaffing and work overload. These tw o factors generated problems between the general volunteer coordinator at Mansilla and th e local coordinators in Pedro de Elizalde and Posadas because the hospital coordinato rs thought that the general coordinator wanted to keep all of the staff members for herself and deliberately prevented them from working outside of Mansilla. There are some days when there is only one volunteer in our sede or maybe two, but for the amount of work that we have you need minimum 4 volunteers each day. I always tell Ca rla [general volunt eer coordinator] that I need more people because it makes me mad not to be able to sit down and play with the children that co me to our recreational room. It is important for me to be able to talk to them and learn things from them. It also helps the families, because they know that we have time to talk to them, to listen (Giselle, de Elizalde volunteer coordinator). The interview with the general coordinator, however, pointed to the fact that the reason why she did not promote the insertion of volunteers into the other two sedes was that she did not understand the need for more volunteers. The general co ordinator had entered the organization a few months before I started my fieldwork. She had been a volunteer for about five years at the Mansilla sede and when the previous coordinator left 121

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she was offered the position. She had never visited any of the other sedes and had no experience working with pediatric oncology patie nts in a hospital context. To her, the hospitals did not need a lot of volunteers beca use their work was carried out in a smaller place where the children did not require a lot of supervision. Furthermore, the volunteers in the hospitals did not have the administrative obligations of those in Mansilla. The lack of training of permanent sta ff members and volunteers at Mansilla on working with children in a hospital context, their permanence in only one sede, and the lack of communication that existed between se des led to conflicts between coordinators, the under-appreciation of the hospital sedes, a nd the separation of the hospital sedes into isolated groups composed of the corresponding coordinator, her volunteers, and the hospital staff. These factors presented themselves over and over in the interviews representing issues of concern not only in the initial stages of the volunteers trajectory, but accompanying them throughout their traini ng, supervision, and later stages of volunteer involvement. Training and Supervision During the fieldwork, I was told that fre quent training and supervision meetings directed by the psychologist were carried out at CCF. However, during the interviews both volunteers and permanent staff members indi cated that the meetings that used to be once every two weeks were now carried out once every two or three months. These meetings used to be a fundamental part of the volunteers work experience because most of them it was the only time they had to ge t to know the volunteers from other shifts or sedes and to talk about their pr oblems and the strategies they used to deal with them. 122

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One of the interesting things that emerge d while interviewing volunteers was that there were few people with whom they coul d talk about their experience while working with pediatric oncology patients. Like the tw o quotes from the interviews with Daniela and Gina indicate, family members and fr iends did not feel comfortable when the volunteers referred to specific cases, discussed the childre ns family situations, or expressed their feelings after finding out about negative prognos es or a childs death. When we first entered the organization we were told that our family members did not have to know what happened here. If they asked us, it was O.K., but if they didnt, we didnt have to share our experiences with them. Later on you start to understand wh at they [the administration] were talking about. When you tell people what you do, they respond by saying that they could never do that, that only people without feelings can handle situations like those (Danie la, volunteer at Mansilla). Sometimes when you tell another person what you do, they dont understand that this type of work can be pleasant. They picture you as morbid; but it is pleasant because it is another reality where you can collaborate with people. Seeing a kid that just came out of chemo or a punction and he laughed with you for five minutes fills up your soul (Gina, volunteer at Mansilla). Informal quick encounters with volunteers from their same shifts or the general group meetings were the only spaces available for sharing their experience and airing out their concerns. The group meetings directed by a psychologist that specializes on this type of work were not carried out frequently enough, resulting in the lack of the constant supervision and professional guidance that are needed to overcome painful situations. On the one hand, this generated stronger relationships between volunteers as they relied upon each other as important resources for sharing these experiences and seeking for advice, but on the other hand, it made many of them feel alone and doubtful when encountering distressful situations. 123

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We come here without tools because we do not know if we are doing things right. You dont know if youre benefiting the child or not. You might have them jumping up and down a nd then discover that it wasnt the best thing to do at their stage of treatment. I always remember the comment made by the psyc hologist where she said that during social events she always ended up talking to herself. People would be like Oh, how can you work with oncology patie nts? like if it were a negative thing, like a terrible thing. Peopl e around us say, how can you get involved in that? and then they leav e, they dont want to hear about it. []My mom, for example, doesnt even ask me about it. She didnt want me to come; she thought it would be bad for me (Iliana, volunteer at Mansilla). I have many friends or colleagues th at when you tell them that you work with children that have cancer they ask you How can you work with people that are dying? and I respond No, I am working with people that are fighting for their lives. I think that this is what th e children give me and the rest of us; because if I were nt here there would be another crazy girl doing the same thing. That is something that Silvana [ex-volunteer coordinator] would say, that you have to be crazy to be here and we all are a little bit and that brings us together (Valeria, vo lunteer at Mansilla). Another issue related to training emerged from both of the hospital sedes. During the interviews the volunteers indicated that the training sessions they had attended at Mansilla provided them with tools for worki ng with children solely within the setting of Mansilla and not in a hospita l context. They received no training on how to develop recreational activities for children that had re cently come out of surgery, that were in chemotherapy or that had returned from a lumbar punction. Volunteers were not instructed on how to sterilize materials af ter the children had used them to prevent infections or how to take the necessary sani tary measures before entering the isolation rooms. My opinion is that the organization has exceeded its capacity. According to me the dynamic at de Elizalde is to tally different from the one lived at Mansilla. Here you have a kid that just came out of a punction. In Mansilla, from the Gutierrez [nearest childrens hospital] you have five blocks for the child to come down. He re they come and in two seconds we have them in the recreation room. I have never found tools to deal with 124

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that. You play with them as much as you can put up with it, but this is terribly adrift. You dont have informa tion to give parents about what to do with their child after a punction; you dont have the tools to work with children in these conditions. [] Ther e is a lot of change of personnel because of this; because the volunteers do not have the necessary tools to deal with what goes on here (Alb a, volunteer at de Elizalde). Even though most staff members agree on th e fact that many of their problems could be solved by having more frequent meetings, the reason why these have been distanced further apart was due to the work overload suffered by CCFs psychologist and the difficulty of bringing toge ther the volunteers from all se des. The psychologist was in charge of attending to all sedes on a regular basis, she led the initial interviews with parents, and directed all group meetings at CCF. It was impossible for her to deal with all of these obligations and still be available for emergency situations. As the map on page 100 indicates, th e three sedes analyzed during this investigation were not located in close di stance from each other making it hard for the volunteers to travel to Mansilla for the mee tings. Furthermore, the meetings were only set in the afternoon making it difficult for voluntee rs with classes or family obligations to attend. Internal Communication The assessment of the internal co mmunication of CCF was carried out by combining three methods of data collection: participant observati on, interviews through which they identified the people within the or ganization with which they interacted the most, and social network diagrams made by each interviewee where they located themselves within the organization drawing the people they interacted with the most closer to them. According to this information a social network diagram for the entire 125

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organization was elaborated and presented in the report as well as a sample of the staff drawings 49 The use of these visual mechanisms to represent the internal communication of the organization resulted he lpful when presenting the results of the investigation to the NGO administration. As it was mentioned before, each of the sedes of the organization appeared to have established effective networks of co mmunication. Through private email lists they received constant updates on the activities conducted in their specific workplace, they knew when they needed to substitute a volunt eer that could not make their shift, and when additional help was requested for group activities. Each sede had its own notebook where volunteers would write the most important events of the day and let the volunteers from other days know what they coul d expect concerning particular cases 50 Intra-sede meetings were useful for the staff because th ey could get to know the other volunteers, express their concerns, and look for ways to im prove their work strategies. The volunteer coordinators of each sede spent a large amount of time making sure that the information got across to all of their volunteers and that no misunde rstandings were generated. The inter-sede communication and admi nistration-sedes communication was different. As the quotes from the interviews with Carla (general volunteer coordinator) and Ana (social worker) demonstrate, th e miscommunication the organization was experiencing took different shapes in the se nse that information was not getting across and that things were misinterpreted and need ed to be corrected, re presenting a waste of 49 The drawings were scanned and the names of the people identified were erased in order to protect their identities. Generic names like volunteer from Mansilla were inserted instead. 50 These notebooks were also used to let the staff know which children were going into palliative care and which had passed away. 126

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time and resources. Furthermore, the probl ems with communication were linked to a lack of group dynamic (referred to as team work) where each of the permanent staff members could have an equal role to pl ay in the decision-making process of the organization. The state of our internal co mmunication is not good because the administration, which is in charge of the final decisions, are always too busy and it seems as if the issues fo r which we interrupt them are minor. Even though they tell us that we have to check these things with them, there are times when you are confronted with their closed office doors and you cant check with them. Due to th is, maybe you didnt make the right decision or maybe you didnt make any decision and that issue was kept on stand-by and things got postponed. When you try to propose them again, then they have lost importance. So, we dont have the possibility of obtaining permanent feedback from th e administration but at the same time we dont have the possibility of making our own decisions (Carla, volunteer coordinator). The communication is very vertical. It is standardized according to how the President designed the organiza tion where everything must have her approval. For example, I cant give out medication without letting her know first or if I have to contact another organization, then many times she prefers to do it herself because she has built these networks. This doesnt allow us to work as a team, that is, we cant integrate all of the staff into a working group where we could discuss each childs case from our different perspectives. This is due to the fact that the President absorbs such a large amount of work that she does not have time (Ana, social worker). This was also the case for the communication between sedes where the Mansilla sede presented strong and frequent interac tion with the administ ration, but distance was established with de Elizalde and Posadas (s ee Figure 9). These la st two sedes hardly interacted with each other, Mansilla, and the administ ration with the exception of occasional emails. As a consequence, the activ ities that were taking place in de Elizalde and Posadas were not disseminated to the people that frequented Mansilla, their staff, and the general public as it was not included in pr ess releases or CCFs webpage. As it was 127

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mentioned before, this fact was evident during the initial volunteer interviews and was probably one of the main causes of the unequa l distribution of volunteers. However, its negative effect was mostly felt at the level of the parents and thei r children who received care in the hospitals where these two sedes were established but were not informed of the benefits they could receive from the organization as a whole. 128

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De Elizalde Mansilla Posadas VCVol C.C. OD GVC PS SW VC P A Key Internal communication networks established Relationships between individuals (frequent communication) P = President A = Accountant SW = Social worker PS = Psychologist OP = Operative Director GVC = General Volunteer Coordinator VC = Volunteer Coordinator Vol. = Volunteer (Mansilla) Vol. C.C. = Volunteer de Elizalde VolPos = Volunteer Posadas Figure 9. Social Network Diagram of CCF i ndicating communication w ithin and among sedes. 129

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In order to improve the communication am ong sedes, the volunteer coordinators constantly requested more frequent face-to-face meetings and the presence of CCFs President and Operative Director at each of their sedes at least once every two months. Since de Elizalde established its own recr eational room in 2007, CCFs administration had only visited it once. In the case of Po sadas, the only person that had visited the facilities (once in four years) was the Presid ent, and most of the administration did not know how the sede operated. The following quotes from Lauras interview (Posadas volunteer coordinator) a nd Giselles interview (de Elizalde volunteer coordinator) further illustrate this point. What I want is for someone [CCF administration] to come because my presence here is permanent so its like Im one of the family. If someone from the Foundation comes, no matter what category they have, then people would feel like they are unde r some form of supervision, of control. It would give the Founda tion more presence, you know? [] A visible face of CCF every now and th en is important. Important for me too, because they might see things here that I dont see. They might have ideas and make propositions for impr oving what we do (Laura, Posadas volunteer coordinator). CCF has become some sort of mu ltinational company, it has grown so much. There were times when I felt bad because the administration would not come to our sede. They [CCF admi nistration] would tell me that they would come when things were not working the way they should and because de Elizalde was working fine there was no need for them to come. It was hard for me to understand this point because I am a very emotional person and I think that human contact and relationships are very important. [] I would also like th em to see everything we have done (Giselle, de Elizalde volunteer coordinator). This generated resentment among the voluntee r coordinators because they felt that their work was not valued by the administrati on. It distanced them and the volunteers under their supervision from those at Mans illa and led to the creation of volunteer typologies where those at Mansilla were re presented as weak because they were not 130

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emotionally equipped to work within a hospi tal context and those at de Elizalde and Posadas were seen as strong and the most im portant volunteers within CCF because they were the ones in direct c ontact with the patients. CCF [referring to Mansilla] and the hospitals are different. We are there with the child since the moment of diagnosis, we live everyday with them. We see when they are happy, sad, when they relapse, we are with them during punctions and medication, and we take them movies so that they dont get bored during chemo. We are w ith them and their parents during the entire treatment, so our relations hip is different than the one of the people at Mansilla. With the volunteers it is the same thing. The ones here see the children every da y, their bonds with the ch ildren are stronger and their job is emotionally demanding (Giselle, de Elizalde volunteer coordinator). The lack of visits by the administration to each of these sedes also had a notable effect on the role the sedes played within each hospital. The volunteer coordinators mentioned that if the administration provided th em with more visible support, then they would not have to spend so much time defending their place to the hospital administrations. In other words, the presence of CCFs President, who was a legitimate authority on pediatric oncol ogy treatment in the country, would grant each volunteer coordinator with more power to work with the children and would so lidify the position of the sede within the hospital. However, since this was not th e case, the volunteer coordinators sometimes subordinated to th e orders of the hosp ital administrators deviating from the mission of CCF and creating ruptures in their relati onship with the rest of the organizations staff. The direct consequence of these ruptures was the creation of islands (a term used by the volunteer coordinators) where de Eliz alde and Posadas felt completely isolated from the rest of the staff. This is evident in the quote presented below and in the social 131

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network diagrams drawn by the volunteers. A sample of these is included below (Figures 10 to 13) in order to demonstrate how volunt eers from the same organization but from different sedes can present di fferent depictions of the organization, in some cases completely erasing the other sedes. I think that the most important thing here is for the different sedes of the organization to get to know each other. I feel like we are three islands within CCF. Except for some people, ma ny girls from the sede [Mansilla] do not even know that de Elizalde ex ists. For me it is important that besides showing what we do in pictures that they come and get to know what reality is like. That they get to know exactly how we work. We do not have to forget that CCF is what it is because of the people that work within it and all volunteers deserve greater recognition (Giselle, de Elizalde volunteer coordinator). Hierarchical organizatio President Operative Director Me Social worker Coordinator for Mansilla Psychologist No other headquarters are represented The relationship with other volunteers is not identified. Other volunteer Figure 10. Diagram made by Mansilla volunteer 132

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Great distance between personnel Individuals located in the lowest rank aremore close together indicating more communication Figure 11. Diagram made by Mansilla volunteer Figure 12. Diagr a m made b y d e Elizald e volun teer Me Volunteers from same da y P r esi d ent O p erati v e Direct or Coordinator for Mansilla Ps ycholog i s t Hierarch ical Organization No ot her head quarters are included. Me Coordinator for de Elizalde Volunteers same da y Volunteers from other da y s Ps y cholo g ist Equitable Organization No other sede s Individuals clos e together indicate communication 133

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Individuals close together to indicate communication Psychologis Volunteer another day Only external staff member identified No other sedes Coordinator for Posadas Volunteer same day Me Size of the coordinator is bigger to indicate hi g her rank Equitable organization Figure 13. Diagram made by Posadas volunteer The fact is that we are all a little bit disconnected. We are missing activities that can integr ate the whole group; it would be good to integrate each side. I know that everyone is not always available, but like in my case I have been coming here for almost a year and recently there was a meeting and I didnt know anybody (Marco, Mansilla volunteer). Diagram Analysis The analysis of the diagrams shed light on several important issues concerning the internal communication of the organization and the ways in which the volunteers visualized themselves and their work. An elem ent present in most of the diagrams is the lack of inclusion of other sedes. In some cases the interviewees remember to mention one sede (other than their own) but none of the interviewees id entified the five sedes that make up the organization. The distribution of personne l in the diagrams varies. However, it is possible to identify two general patterns: hierarchical and non-hierarchical (or egalitarian). 134

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Hierarchies are expressed in different ways (ladders, levels, and figures in vertical position). The diagrams with non-hierarchical organization tend to situate the different members of the organization in the same horiz ontal level, even if they separate people into groups by drawing circ les or other shapes. In most cases, the people identified ar e the same. Most interviewees locate the volunteers that work with them on the same day and the volunteer coordinator of their sede closer to them indicati ng that they interact with th em the most. People like the psychologist, social worker, general volunteer co ordinator, and operati ve director appear frequently in the diagrams made by volunteers of Mansilla. This might be due to the fact that these permanent staff members work in the same sede as the volunteers from Mansilla. The only member from Mansilla that volunteers from other sedes frequently identify is the psychologist and this is due to the fact that previously she would make constant visits to all of the sedes in order to carry out vol unteer supervisions. When looking at the differences in the diagrams among sedes it is possible to see that the volunteers from de E lizalde were the ones that included the other sedes with more frequency (4 out of 5 interviewees). In the case of Mansilla only 3 out of the 17 people interviewed identified at least one se de besides the one they worked at. The Posadas volunteers failed to identif y other sedes in all cases. Th is analysis is consistent with the interviews where the staff members at Mansilla did not have information on the other sedes (some did not even know they existed), the volunteers at de Elizalde complained that the volunteers at Mansilla had more privileges while not carrying out work as meaningful as theirs, and the volunt eers at Posadas visualized themselves and their work as something separate to CCF. 135

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Conclusions and recommendations In essence, most of the recommendati ons that I made to the organizations administration stemmed from the staff member s that were interviewed. Many had similar proposals for improving the working dynamic of the organization; they had just not found the appropriate way to communicate them. Ther efore, I saw my role during this project as a communicator of all of their concerns, but at the same time, of the strategies the staff thought should be implemented to deal with them. My work was centered on summarizing this information and presenting it in a way that could be easily understood by the administration and that could result in interesting and important changes for them. My recommendations were built on these id eas. The following section presents a summary of the report I delivered to the ad ministration and the staff with the specific recommendations for dealing with the three areas of the organization under evaluation. Reasons for Working at CCF and the Initiation Process As part of the strategies dedicated at the re cruitment of volunteer s, I encouraged the administration to continue to dedicate substantial amounts of energy to update their webpage and take advantage of the contributi ons that technological advances could make to their everyday work 51 These sources of information had brought benefits to them in the past and would certainly continue to grant them visibility in the future. Some of the literature on NGOs has focused on this issue, indicating that accustomed to networking in physical space and hungry for eff ective means of communication and for 51 The organization is currently contemplating implementing an interdisciplinary project with social scientists and computer engineers in order to design a virtual game where children can obtain information about cancer and their particular treatment. 136

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information, NGOs rapidly found electronic netw orks to be another useful and powerful milieu for their organizational and political needs (Lins Ribeiro 1998:336). The use of electronic networks has been essential for NGOs involved in political activism and advocacy as these networks represented channels through which information could be disseminated instantly, where global visibility could be obtained, and where pressure could be exerted on politic al actors (Lins Ribeir o 1998). A relatively unexplored aspect of the use of electronic networks has been th e one presented here where an organization like CCF has adopted th e use of electronic ne tworks for volunteer recruitment, internal communication, and the fi ling of the individual cases of the children who receive the organizations services. As the organization continues to expand geographically and in terms of staff it w ill depend more on these networks and will probably find new ways to adapt them to better suit the needs of the personnel and recipient population. For the volunteer initiation process I r ecommended an in-depth training program (of approximately one month in duration) that included the following elements: Basic instruction on cancer, its diagnos is and treatment, and the ways in which the disease affects the child, th e relationships between the child and his/her family members, and the relationships among family members. Intensive training on recreational activ ities that can be carried out with children in the following situations: terminated treatment, in palliative care, initial stages of chemotherapy, recovering from surgery, coming 137

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from a punction, later stages of chemotherapy, recovering from limb amputation, and the well-siblings of children under treatment. Training on working with parents referring particularly to: recommending recreational activities to carry out at home with their children, referring them to other staff (like the social worker or psychologist) concerning particular issues, or listening to their problems. Training and Supervision The initial training described before n eeds to be constantly reinforced and updated, especially for those vol unteers working within a hosp ital context. Therefore, I proposed monthly internal tr aining sessions where volunteer s could be instructed on activities and strategies they c ould use to work with children in the particular contexts of their sedes 52 Their initial training would be enri ched and the issues that emerged concerning the general training meetings (a t Mansilla) mentioned before would be avoided. Frequent supervision meetings were r ecommended where all volunteers gathered with the organizations psychologist at Mansil la to share the difficulties that they had encountered. The psychologists advice and guidance could prepar e the volunteers for dealing with some of the most common situations they faced when working with the children and their families. For these meetings I recommended using a group format where the interaction among volunteers from different sedes could be promoted and 52 These activities would adhere to the specific limitations in staff, resources, time, and the condition of the children of each headquarter. 138

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everyone could find out about the work carried out in other places. This could help reduce the separation among sedes referred to by Giselle and Laura in the previous interviews. Internal Communication I recommended that the internal communi cation be looked at from three different levels (see Figure 14) within sedes, betw een the administration and each sede, and among sedes. This separation allowed the administra tion to see that different types of problems were encountered at each level that required specific solutions and that while some levels were in great need of reform, the other levels were working fine. Among headquarters Administration and headquarters Within headquarters Figure 14. Diagram indicating the levels of internal communication I identified in CCF. 139

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As it was mentioned before, the communica tion within each sede did not require modification. Each volunteer coordinator had developed their own way of promoting communication with their volunteers. The communication within the administration and between the permanent staff and the volunteer coordinator of de Elizalde and Posadas, however, needed to be improved. In the re port, I included two suggestions that came from the interviews with the permanent st aff members: fixed re gular meetings, and regular visits to the hospital sedes by the President or another member of the administration. The regular meetings needed to be fre quent (maybe once every two weeks) to ensure more direct contact among the staff and a specific time needed to be arranged for them where no distractions occurred. The lack of participation of the President and the Operative Director in meetings or their perm anence for short periods of time was an issue of concern for the rest of the staff (specifi cally for the volunteer coordinators of the hospital sedes). These meetings could al so promote the teamwork that several interviewees thought would be important for the organization because it could be a time where the discussion of the particular cases of children and their families from the points of view of all of those pres ent could take place. The visit to the hospital sedes by the President and other members of the organization would allow the volunteers and vol unteer coordinators of each sedes to be able to show the rest of the organization wh at they have accomplished. It would promote the dissemination of information among the st aff and would enable the recognition of all workers. These visits would also give majo r visibility to CCF within each hospital, solidifying their position and maybe even gr anting them greater autonomy. These visits 140

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could also promote the rotation among all sta ff in the future allowing volunteers to visit other sedes and learn about the work of thei r colleagues, and consequently improving the communication among sedes. In sum, the geographical expansion expe rienced by CCF and the increase in the number of services have provided benefits to the recipient population but have also contributed to the deteriorati on of the internal structure a nd working environment of the organization. The issues of concern to the staff are centered on the reduction of personal contact among the personnel and the lack of time allocated to the training of volunteers. The interviews pointed to the individual ways in which the staff members dealt with these difficulties and their ideas on how the internal working mechanism of the organization could be improved. The interviews not only got the staff thinking a bout these issues, but it got them talking about them and when the report was presented to the entire organization, these problems and possible so lutions were discussed in an open forum. Months after this presentation, I was informed by several of the inte rviewees that some changes had started to take place within CCF as the administration was starting to establish more time for face-to-face meeti ngs and a new volunteer training program was being designed. If CCF had been viewed from a more m acro perspective I would have probably only seen a strong organization in the midst of a large expansion. I would have noticed their increase in sedes, volunteers, and reci pient population representing them as positive factors in the organizations development. Even though all of these things are true, a micro perspective, obtained through ethnographic research, paints a di fferent picture. It sheds light on the complex nature of NGOs, the messiness of its internal organization, 141

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and the fractures in the communication among staff members. As a consequence, the everyday problems of the people that make th e existence of the or ganization possible can be assessed in greater detail and more real istic and tangible soluti ons can be proposed. 142

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Chapter 6 Conclusions This thesis has examined NGO involvement in the provision of healthcare from a historical and ethnographic perspective. The historical portion of the thesis used the particular case of the Sociedad de Beneficencia to illustrate the many different ways organizations can contribute to the provision of health services, the creation of public health facilities, and the training of health care professionals. The ethnographic section uses the case of the Childrens Cancer Foundation to shed light on the contemporary participation of NGOs in healthcare provision, and particularly, on th e experiences of the staff that work with patients. One of the purposes of this investigati on has been to demonstrate that different types of organizations have participated in the creation and maintenance of the Argentine public health system, and therefore to empha size that NGO involvement is not a recent phenomenon, but has been present in one way or another (through community groups, mutual trust organizations, ch arities, beneficence societie s, civil organizations, and foundations) throughout Argentine history. Anot her purpose of the thesis has been to highlight the various forms that NGO involveme nt within the health sphere can take and the particularities of working with children and cancer patients. These particularities are important as they create challenges and difficulti es for the staff that might not be present in other contexts. 143

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In sum, this thesis has demonstrated the relevance of carrying out in-depth ethnographic research with NGOs, the contributi ons anthropologists can make within this field, and the need for future NGO-anthropologis t collaboration. In the pages that follow, I will elaborate on these two purposes dr awing on the previous chapters. Looking at NGOs within th e Public Health System When analyzing NGO involvement in the provision of healthcare, the micro perspective used in this thesis becomes useful because it allows c ontextualization of the work of these organizations within the stru cture and organization of the public health system of particular countries. Argentina wa s selected as the locu s of study and it is not by chance that the Sociedad de Beneficencia wa s chosen as a representative case of the history of the involvement of organizations in health. The ro le played by the Sociedad in the professionalization of pediat ric medicine in the country poi nts to the specific ways in which healthcare was and continues to be visualized in Argentina: as a form of beneficence instead of as a universal human right. I have dedicated a substantial portion of Chapter Four to explaining how the institutionalization of childhood was carried out in Argentina. The purpose of the description of this process wa s to shed light on the class-based notions of charity behind the creation of the nations public hea lth system, and specifically, behind the medicalization of children. Health and educat ion access were in the hands of the highest social classes and it was granted to the lower classes only as a form of beneficence, or charity. Healthcare was a pr ivilege and it was awarded to the lower social classes only when particular political intere sts were at stake. So for example, the immigration waves that arrived to Buenos Aries between 1871 and 1914 were confronted by a young city 144

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without enough infrastructure to provide potab le water, adequate housing, and sanitation to its population (Rodriguez 2006) This led to the emergence of serious infectious disease epidemics that needed to be controlled so that they would not devastate the entire country (Armus 2007; Rodriguez 2006:179). Conceptualizations of hygiene that were imported from Europe and North America were combined with a local need to sanitize the population in order to create a vast public health system (Rodriguez 2006). The State and different types of organi zations usually comprised of upper class women, like the Sociedad, played a fundamental ro le in the creation of this infrastructure and its administration. The Soci edad fought for the elaboration of institutions that could educate and heal the children of the newly ar rived immigrants (protecting themselves and their children from infection) and devised national campaigns to educate their parents. However, this institutionalization and educati on were usually directed at the lower social classes. The children of rich families were seldom admitted to public hospitals, orphanages, correctional facilities or as ylums because they had access to private physicians and facilities. These children had pr ivate care or entered institutions suitable for their class (expensive boarding schools in Argentina or abroad, military or religious institutions, etc.). The reasons for this interest in child ren and the practice of selective public institutionalization have been di scussed in Chapter Four. Government interest in children was related to ideas about the immigran t population maintained by the State and individuals of the elite wh ere this newly arrived populat ion was seen as ignorant, backward, infected, and, in some cases, pol itically dangerous (Armus 2007; Rodriguez 2006). It was the role of the State and the orga nizations at its dispos al to transform this 145

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population into what they believed to be suitable citizens by granting them access to education and healthcare; access for which th ey were not deemed worthy because they were human beings, but because they complied w ith the interests of th e political elite of the time. Katz further illustrates this point by saying that beneficence is the foundational concept that impales the conforma tion and growth of the health system in Argentina not thought of as a public service but as a conversion of its main recipients, that is, orphans, the elderly, mother s, and the shameful poor (2004:151). These notions of rights and healthcare were contested throughout Argentine recent history by a series of political and so cial movements that demanded a socialized system of healthcare. However, even during periods of powerful centralized governments, like the Peronist gover nments of 1946-1952 and 1952-1955, ideas of healthcare as a universal human right were confronted with ideas of healthcare as charity 53 (Katz 2004). What I have discussed so far thus helps to explain contemporary ideas on healthcare and NGO involvement in this area. When we look at the case of CCF and its st aff we are able to see that some of the ideas on the right and access to healthcare are reproduced from earlier times in national history. The staff is primarily composed of women, reproducing a model of social assistance that has prevaile d in Argentine history, and among other Latin American countries, where women are represented as caretakers and benefactors (Tenti Fanfani 1989). Such women belong to middle and upper social classes and provide services to 53 The most important organization dedicated to the provision of healthcare, education, and social assistance during these regimes was the Fundacin Eva Peron, a charitable organization directed by Eva Duarte de Peron (Perons wife) (Thompson 1995). 146

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individuals from the lowest social classes. Even though the provision of healthcare was discussed with all interviewees, none attri buted the problems faced by the children and family members as a violation of their human ri ghts or the failure of th e State to deal with its obligations. Instead, the staff tended to explain the situation of the users of CCF as that of experiencing needs. The role of the organization, according to the interviewees, was to devise strategies to deal with those needs and the organization does this by establishing sedes (branches) within public hospitals. The initial contact with the hospital personnel was full of tension, but these c onflicts gradually disappeared as CCF demonstrated its efficiency, willingness to pr ovide various forms of resources, and, most importantly, its unthreatening quality. By unthr eatening, I refer to the fact that CCF does not attempt to challenge or transform the in ternal working mechanism of the hospital or its staff, therefore does not pose a threat to the hospital administration and high-level health officials. In many ways the involvement of CCF in the provision of health services to pediatric oncology patients and their families appeared to work in synchrony with the structure of the Argentine public heal th system. A longstanding history of governmental/non-governmental collaboration within the health sphere po ints to this fact (Thompson 1995). However, there are three ma in elements that continue to produce difficulties for the staff and the organization in general: its focus on cancer patients, the fact that these patients are children, and the pressures for expansion. 147

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Working with Cancer Patients Cancer poses powerful contradictions: fighting death and accepting death, faith in medical authority and the ending of that faith (Balshem 1999:10). Balshem (1999) here sheds light on th e particular circumstances that cancer generates. If we look at the timing of me dical advances in cancer therapy we can conclude that oncology is a relatively recen t medical specialty (Balshem 1999:4). The small amount of information available on the causes of cancer and the effects and side effects of the treatment when compared to othe r diseases is further evidence to this fact. In some cases, this lack of information a nd its limited dissemination have transformed cancer into a mystery, leaving r oom for misinterpretations. This lack of understanding of the dis ease, its course, and its treatment was common among CCFs staff members and it was one of the main causes of difficulties they experienced when dealing with patients. Many were cognizant of this fact indicating in the interviews that if they had understood the implications of par ticular types of cancer and the stages of its treatment they would have been better equipped to handle difficult situations because they could have anticipated future outcomes. Whether this is true or not is hard to determine, as having larg e amounts of information available does not guarantee being able to handle the death of a loved one. However, learning about the disease and the treatment can grant the st aff members with a greater capacity to empathize with the children and family memb ers and the ability to at least asses the direction towards which a childs case is h eaded. This is the reason why a better training 148

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program, one that could pr ovide substantial information on these topics, was recommended to the administration. Even though cancer survival rates have increased considerably over the last ten years (Young et al. 2002), uncer tainty still remains for those undergoing treatment. This uncertainty becomes difficult to manage fo r patients, family members, and healthcare professionals (Bluebond-Langner 1978; Rothen berg 1974). Individuals develop different mechanisms to deal with uncertainty, including hope (Balshem 1999), aggressive biomedical treatment, use of alternative th erapies (Hess 1999), the reliance on different types of beliefs (Hunt 1999), and so on. Uncerta inty also affects th e other people that interact with the child and the family, lik e CCFs personnel. The few tools they had available for dealing with this uncertainty and the inability of peopl e with whom to share their feelings were frequent topics of convers ation during the interviews. As some of the quotes presented in Chapter Five indicated, many of the volunteers could not share their feelings with close friends or family members; they could only rely on other volunteers or the staff psychologist, in other words people who were not always available. In order to deal with th is problem, I suggested devel oping a constant supervision program for the staff. This supervision progr am would be composed of different types of face-to-face meetings led by CCFs psychologist where these topics could be discussed. The meetings would have different characte ristics depending on the position occupied by the staff member. So, for example, the vol unteers from all three sedes would meet together with the psychologist to share their problems and learn from their experiences, but separate meetings for each sede would also be held in order to deal with the problems 149

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of each particular place. This would be especi ally important for the sedes located within the hospitals, as they are the ones most in co ntact with the patients and their families. Working with Children Another unique quality of CCFs wor k, one that brings another layer of complications, is the fact that it works w ith children -and not just any children, but children who sometimes die. Several anth ropologists have undergone the task of analyzing death during childhood describing the different connotations it has when compared to death in adulthood (Blu ebond-Langner 1978; Scheper-Hughes 1992, 1998). As Bluebond-Langner (1978) has indicated, the di fficulty of dealing with a childs death is linked to ideas about childhood maintained in our society where this lifestage is seen as temporary, as a period of life that will be surpassed by adolescence and adulthood. This represents children into adults in the making, subjects that will become (BluebondLangner 1978:5). Death disrupts this notion of becoming, generating difficulties for the people who care for the child. The difficulties it poses for the family, healthcare professionals and NGO workers are different due to their relationship with the child, but most of them are centered on the belief that childr en (at least those of a certain age) should not die. This is linked to the fact that childhood in Western society is associat ed with innocence; with the need to be safeguarded by adults (Aris 1998). As a result, some parents blame themselves for their childs disease (Young et al. 2002) and healthcar e professionals and other caretakers are f aced with ambivalence in the sense that they are confronted with feelings of sadness and guilt (Rothenberg 1974). 150

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One response to the situation described before is the establishment of channels for the expression of these feelings. This is what I recommended to CCFs administration (see chapter five). The supe rvision program mentioned above and the establishment of regular face-to-face meetings among the st aff might be two ways to improve communication and the possibility of identif ying emotional difficulties experienced by the staff at an early stage. Expanding NGOs: a Look at Organizational Development In the previous sections of this chapter, I emphasized that the difficulties faced by CCFs staff had less to do with working within the public health syst em and more to do with working with pediatric oncology patients. I have explained this situation by arguing that previous non-governmental/government coll aboration in the prov ision of healthcare in Argentina has established the necessary frameworks for organizations like CCF to become involved in the provision of health serv ices today with relatively few difficulties. The only problem with this collaboration is that when the public health system starts to gradually deteriorate, its flaws and the demand of the population exert pressure on these organizations to deal with the needs of more patients and families. This is the reason why the size of CCF today is not the same as it was three years ago, nearly tripling since 2003. The rapid expansion and the failure of the administration to adapt CCF to these changes have had serious consequences on the structure, organization, and communication channels of CCF that if not attended to promptly could generate negative effects in the future. A review of the liter ature on organizational design and development 151

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points to the fact that due to the hierarchi cal organization of CCF, expansion without the previous internal transformation c ould be detrimental to CCFs goals 54 In order to explain this point better, it is important to take a look at the different ways authors have categorized the internal st ructure of organizations. Out of all of the forms of classifying organizations, the one I find the most helpful and suitable for this case is the open system-closed system model proposed by Katz and Kahn (1978) and later used by Mi nk et al. (1979). According to these authors, a closed system is more likely to have rigid hierarchical organizati on, view top-level decisions as final, structure itself by permanent departments, set a formalistic atmosphere, maintain one-way communication through the chain of command, and avoid external feedback (Mink et al. 1979). An open-system is more lik ely to have a broader and more integrated organization, view top-level decisions as s ubject to review, struct ure itself by temporary task forces, set an atmosphere that is goal oriented, communicate up, down, and across, and seek external feedback (Mink et al. 1979). Open systems are based on the idea of functioning as an integrated whole (Mink et al. 1979) and in the case of CCF this would entail c onnecting all sedes with the administration in a dynamic manner. In order for this happen, two main issues need to be addressed. First, all staff members should sh are a common interest in working with CCF 54 In order to understand this point, a review of the work of Peters (1988 in Reilly 1995) is useful. According to this author, contemporary business organizations dedicated to service delivery are recommended to pursue horizontal management by displacing vertical bureaucracy, thus acquiring greater flexibility (Peters in Reilly 1995:253). This recommendation has also been made by Robey where decentralization of the decision making process is recommended for larger organizations (1991:102);and the broadening of the top positions in the hierarchy of staff members is suggested in order to obtain a more integral organization of the personnel (Mink et al. 1979). 152

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and should express the purpose of the organization in a similar manner. As Bacidore and Thakor (2000) and Robey (1991) have indicate d, the existence of a shared purpose is an intrinsic factor in the defini tion of an organization and, in the case of CCF, the presence of multiple ideas on the purpose of CCF across se des contributes to their separation and if not address now could lead to their complete isolation in the future. Second, a clear definition of the role of each staff member needs to be established and communicated to the organization as a whole (Mink et al. 1979). The clarification of e xpectations about job tasks and performance, team roles and rela tionships, and work objectives allows staff members greater clarity and security in th eir everyday activities and fosters better communication among the personnel (Mink et al. 1979). Furthermore, as problems arise staff members can be assisted by coordinators and superv isors based on the specific characteristics of their work (Mink et al. 1999). In the case of CCF, this clarification would be most beneficial for the permanent staff members (psychologist, social worker, volunteer coordinators, President, and Operativ e Director) as it would allow them greater autonomy in their work. This autonomy, how ever, would not be completely gained as long as the verticality of the decision-making process remained the same. In other words, as long as the President and Op erative Director continue to approve every decision made by the other staff members, confusion about roles and work overlap will continue to occur. The clarification of roles between staff members could also improve the supervision program I mentioned before where each member could be provided counseling based on the particular characteristics of their position. An important point to consider here is that this clarification of roles must be accompanied by recognition of the 153

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value of each position within the organization to avoid competition and friction among the staff. In Chapter Five we saw that both hospital sedes requested that the administration visit their sedes more often and when this did not happen they felt their work was not as important to the administrati on as the one carried out at Mansilla. The presence of the administration at the hospital was not interpreted as a form of supervision or control, but as an opportuni ty to show the highest officials of CCF the fruits of their labor. This recognition could also be used as a form of empowerment of the staff which could in turn lead to the establishment of a better working environment. As Welch et al. have indicated, If employees experience one or more of the empowerment dimensions, they will feel more energized and perceptio ns of overwork will be lessened (2000:67). Even though their work is directed more towards a corporate sphere and they use empowerment as a way of dealing with em ployee overwork, the dimensions that they present for empowering the staff might be useful for the case of CCF. The four dimensions include: self-determination (choice in ones actions), meaning (intrinsic value in ones work), impact (making a difference), and competence (degree to which a task can be performed) (Welch et al. 2000:67-69). The empowerment of CCFs staff members by granting them self-determination, recognizing the meaning they attribute to their own work, highlighting the many ways they can make an impact within the organization, and ensuring competence thr ough training and supervision programs could help eliminate the major difficulties experi enced by the staff and contribute to the creation of a better working environment. 154

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Areas of Future Research There is certainly a lot of work to be done within CCF. It would be interesting to see the results a research study focused on all five sedes generates and to analyze how the perception of sedes outside of Buenos Aires (Tucuman and Penna) differs from that of the sedes analyzed in this thesis. It would also be interesting to compare CCF to other NGOs that work with pediatric oncology pa tients and look at the similarities and differences in their internal organization and ho w this benefits or harms their staff. This comparative study could point to models th at could be adapted to CCFs needs. A follow-up study of the relationship be tween CCF and government institutions in Argentina could also point to important i ssues as these relationships are in constant negotiation and undergo changes through time. This would be particularly interesting to do now due to the fact that the legislation in terms of public health involvement and expenditure is suffering transformations. In January of this year the Argentine government signed a treaty with Cuba for th e research, developmen t, and manufacture of oncology drugs and antiretroviral pharmaceuticals. This measure will increase the amount of available drugs in Argentina and it represents the first step in the transference of medical technology between the two countries It would be inte resting to see the position that CCF takes on this matter and how their participation in the provision of oncology drugs to patients is affected. When I returned to Argentina for a br ief period about two months after I had completed the fieldwork, I visited CCFs staff. To my surprise, some of the recommendations that I had made (more face-to-face communication and the volunteer 155

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training program) had already been transl ated into action. As a result, I became convinced not only that anthropologists can ma ke important contributi ons to the internal working mechanisms of NGOs, but also that long-term collaboration between anthropologists and NGOs is possible. In th e end, I think that the contributions that I made to CCF are nothing compared to all of the things that the staff interviewed for this thesis taught me, and, for that I am forever grateful. 156

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