The Everyday Lives of Children With Cancer

The Everyday Lives of Children with Cancerin Argentina: Going beyond the Disease andTreatmentCecilia Vindrola-PadrosDepartment of Applied Anthropology, University of South Florida, Tampa, FL, USA

Most of the literature on paediatric oncology treatment has provided descriptions of childrens

everyday lives that are circumscribed to periods of hospitalisation. In this paper, I argue that

the political and economic context where children receive oncology treatment as well as the

particular trajectories of their families influence their experiences. The narratives from chil-

dren receiving treatment in three public hospitals in Buenos Aires, Argentina, were collected.

Their stories indicate that issues such as the interruption of school, the separation of family

members, the expenses incurred during treatment, and barriers to care influence the everyday

lives of children and should be included in paediatric oncology research. 2011 TheAuthor(s). Children & Society 2011 National Childrens Bureau and Blackwell PublishingLimited.

Keywords: children, cancer, narratives, Argentina.

I entered the hospital today at 8:00 a.m. and I was surprised to see how big it was and how manypeople were walking around in the hallways. Everything seemed a bit chaotic. Each hallway leads toan even bigger hallway or room. There were no signs or people willing to help me or patients findtheir way. Vendors are located in the hospital lobby and in some of the larger rooms in the bottomfloor. They sell everything from a warm breakfast to toilet paper. The advertisement of hot coffeefrom these vendors is fused with the calling of patients names for consultation, the sounds of theportable radios people bring to make the wait more enjoyable, and an occasional cry from a baby.Long lines and overcrowded hallways make it difficult to walk and the dim lights prevent me fromseeing far ahead. The elevator door was open and, in order to prevent people from falling into anopen void, a chair had been placed diagonally. (Field Notes, 14 July 2009)

This excerpt from my field notes is illustrative of one of the contexts in which childrenreceive cancer treatment in Argentina. The scarcity of resources, chaos and frustration ofhealthcare professionals are part of the everyday lives of patients seeking medical attentionin public hospitals. Misdiagnosis, failure to obtain medication, delays and abandonment oftreatment, or the provision of medical services in unsanitary conditions are factors thatbecome engrained in the patients treatment experience.

Previous studies on paediatric oncology have focused on childrens knowledge regardingmedical treatment, their conceptualisation of the disease and body, or the transformations infamily relationships (Bluebond-Langner, 1978; Clarke-Steffen, 1997; Cline and others, 2006;Williams and Bendelow, 2000). The rest of the factors that make up the lives of the patientssuch as the difficulties in securing treatment, loss of parental employment, separation fromfamily members and the interruption of school have not received equal attention. As a

CHILDREN & SOCIETY VOLUME 26, (2012) pp. 430442DOI:10.1111/j.1099-0860.2011.00369.x

2011 The Author(s)Children & Society 2011 National Childrens Bureau and Blackwell Publishing Limited

consequence, the complexity, uncertainty and even messiness of the everyday lives of chil-dren undergoing cancer treatment are underrepresented.

Through the use of child narratives on their own treatment experiences, this paper has thepurpose of identifying the multiple factors that influence the everyday lives of paediatriconcology patients in Argentina. Here, children are considered actors in the processes ofimproving and maintaining their health both inside and outside medical institutions. Further-more, childrens contributions to their household and family organisation are highlighted.The stories of the children and the difficulties encountered by them while trying to accessmedical attention are used to make policy recommendations.

Children and health care

Previous studies on child health have demonstrated that children have clear ideas on physi-cal body functions (Geissler, 1998; Mitchell, 2006), healthy and unhealthy behaviours (Jamesand James, 2004; Oakley and others, 1995), illness (Almarsdottir and Zimmer, 1998; Bir andPodmore, 1990) and medical procedures (Alderson and others, 2006; Bluebond-Langner,1978). Child-focused research has demonstrated that children take active roles in the mainte-nance of their own health by self-medicalising, refusing or seeking medical treatment, andnegotiating decisions with family members and healthcare professionals (Bluebond-Langner,1978; Korbin and Zahorik, 1985). Furthermore, children know how to make themselves andtheir surroundings safer (Mitchell, 2006) and properly care for other children and adults whoare ill (Foster and others, 1996; Robson, 2000).

Many of these studies have analysed child perceptions and behaviours within a clinical set-ting, shedding light on the development and competence models that prevail in biomedicalpractice under which paediatric patients are represented as immature, innocent and incompe-tent and, thus, not allowed to participate in decisions concerning their health (Alderson,2007; Runeson and others, 2002). Child hospitalisation has been seen to produce significantchanges in childrens biographies and can be a stressful, even traumatic, experience (Boydand Hunsberger, 1998; Coyne and others, 2009). Factors such as the interruption of dailyroutines, separation from family members, unsuitable hospital spaces and painful medicalprocedures have been found to negatively influence childrens experiences in hospitals(Adams and others, 2010; Curtis and others, 2004; Forsner and others, 2005; Sartain andothers, 2000; Whitehouse and others, 2001). As a consequence, childrens views on their hos-pital experiences have been sought to improve the attention provided to paediatric patientsand develop child-friendly hospital spaces (Adams and others, 2010; Birch and others,2007; Whitehouse and others, 2001).

In the specific case of cancer treatment, most of the studies that have focused on childrensperspectives have been carried out in first world or developed countries. This researchhas pointed to the disruptive effects of cancer diagnoses and treatments on childrensnarratives (Balen, 2000; Clarke-Steffen, 1997; Woodgate, 2006), the different mechanismschildren use to obtain information on their disease and prognosis during hospitalisation(Bluebond-Langner, 1978; Eiser and Havermans, 1992), the needs and concerns of childrenof different ages during hospitalisation (Aldiss and others, 2009; Wilkinson, 2003), and thelong-term memories and effects of cancer treatment on childrens bodies and family rela-tionships (Balen, 2000; Chen and others, 2000; Meitar, 2004; Woodgate, 2006). Althoughthese studies have provided important insight into the everyday lives of paediatric oncology

The Everyday Lives of Children with Cancer in Argentina 431

2011 The Author(s) CHILDREN & SOCIETY Vol. 26, 430442 (2012)Children & Society 2011 National Childrens Bureau and Blackwell Publishing Limited

patients, they have not indicated the ways in which illness and treatment experiences areinfluenced by political and economic factors such as centralised public health policies,inequalities in the distribution of health services, parental unemployment, underpaid hospi-tal staff, and the scarcity of medical equipment in public hospitals. A direct consequence ofthis research gap has been the creation of general categories of the chronically ill child orthe child with cancer where it is assumed that all children have access to the same typesof medical services.

Paediatric oncology treatment in developing countries

Even though biomedical research and practice have made great advances in the effectivenessof cancer therapies, children accessing care in developing countries have less access to ade-quate medical treatment and lower survival rates (Arora and others, 2007; Howard and oth-ers, 2004). This situation has been produced by the unavailability of treatment in localmedical facilities, lack of training of healthcare professionals, the unreliable supply of medi-cations and delays in initial consultations (Arora and others, 2007; Howard and others,2004). As a consequence, paediatric oncology patients arrive with advanced cases of cancer,have to suspend therapies, have a greater probability of relapse, and experience higher ratesof death produced by toxicity and infections (Howard and others, 2004; Wagner and Antic,1997).

In the case of Argentina, the legislation on the public coverage of medical care allowsall paediatric oncology patients to access free medical attention and medications and pro-vides support for families in the form of stipends, housing and transportation subsidies,and assistance with paperwork (Scopinaro and Casak, 2002; Toziano and others, 2004).The ratification of the UN Convention on the Rights of the Child has been used as apolitical tool to guarantee childrens universal right to health (Beloff, 2008). Even thoughgovernmental support is extensive in many ways, recent studies have demonstrated thatthe poor training received by physicians on paediatric oncology produces delays in diag-nosis, inadequate patient staging and incorrect medical decisions (Casak and others, 1997;Chantada and others, 1999). This situation is further complicated by outdated medicalequipment, drug shortages, excessive bureaucracy, underpaid hospital staff, absence ofoncology wards for children and insufficient hospital beds (Scopinaro and Casak, 2002).Furthermore, the few public hospitals equipped to treat paediatric oncology patients arelocated in the capital of Buenos Aires; forcing families from other regions of the countryto travel long distances and resettle either temporarily or permanently in the capital(Olaviaga and Maceira, 2007; Scopinaro and Casak, 2002). This internal migration posesdifficulties for the children and their parents as travel and resettlement are expensive andlead to the separation of family members sometimes for years (Abriata and Moreno,2010; Toziano and others, 2004).

Most of the research on paediatric oncology patients in Argentina has relied on the useof hospital statistics or is based on short survey instruments directed at parents (e.g. Abri-ata and Moreno, 2010; Casak and others, 1997; Chantada and others, 1999; Toziano andothers, 2004). The lack of qualitative research focused on children has left their everydaylife experiences unexplored. The purpose of this paper is to present the issues of concernto paediatric oncology patients undergoing treatment in the context of a public healthsystem that promotes access to medical attention, but has limited resources. By placingemphasis on the local context, this paper has the goal of demonstrating the different ways

432 Cecilia Vindrola-Padros


in which individual treatment experiences are influenced by larger political and economicprocesses.

Methodology

The data presented here were collected during a three-month research project conducted inBuenos Aires, Argentina (MayAugust 2009). The research was carried out in collaborationwith Fundacion Natal Dafne Flexer (FNDF), a local non-governmental organisation that pro-vides medical and social assistance to paediatric oncology patients and their families. A totalof 10 children who were being treated in three different public hospitals were interviewed inFNDFs headquarters. The interviews had a semi-structured open-ended format and requestedinformation on the history of diagnosis and treatment, the childs family, the ways in whichchildren acquired information and the main difficulties encountered by the child. The inter-view format was flexible enough to allow the children to construct their own narrativesregarding these points and to talk about issues that were of importance to them.

In addition to the interviews, two drawings were requested from each child illustrating theirexperiences with diagnosis and treatment, and their interpretations of the drawings wererecorded separately. This technique has been used frequently in child-focused health researchin order to capture childrens opinions, beliefs or attitudes towards particular topics (Franceand others, 2000; Mitchell, 2006; Sartain and others, 2000). In the case of this study, thedrawings triggered conversation on issues that had not emerged in the interviews, enrichingthe data collection process. This research project also implemented interviews with parentsand participant observation in FNDFs headquarters, but this information is not included inthis article due to lack of space.

The interview recordings and descriptions of the drawings were transcribed and translatedinto English by the researcher. Each participants transcripts were analysed by readingthrough the material and creating a list of themes. The researcher divided the selectionof themes among the following categories: histories of diagnosis and treatment, familyrelationships, and the concerns and difficulties identified by the children. These themeswere used to create a list of codes. Once the list of codes was created, the researcherwent over the transcripts and coded them with computer software (ATLAS. ti ScientificSoftware Development GmbH, Berlin, Germany). The transcripts of all individuals werethen compared according to these codes in order to select the most frequent topics ofconversation and to determine how experiences varied among the participants.

Sample

As it was mentioned earlier, the research project was based on a convenience sample of 10children (aged 816 years) undergoing cancer treatment in three public hospitals in BuenosAires. Table 1 summarises the characteristics of the participants. The names used to identifyeach of the cases are pseudonyms.

The research proposal was analysed and approved by the President of FNDF in Argentina.Once the corresponding authorisations with this organisation were granted, the research wasreviewed and approved by the Institutional Review Board (IRB). The parents of potential par-ticipants were approached individually and the verbal informed consent script previouslyapproved by the IRB explaining the contents of the study, potential risks and benefits, and



the general structure of the interviews was read to them. Once the individuals decided to par-ticipate and gave consent for their children to participate, children were approached individ-ually and were read the verbal assent script. The interviews were carried out in places wherethe participants felt comfortable and where privacy could be assured.

Results

In general, the childrens narratives were filled with stories of struggle, denial and perse-verance demonstrating that healthcare access and delivery were rarely linear and orderlyprocesses. Furthermore, even when asked to describe the treatment they were goingthrough, the children talked about the reorganisation that took place within their families,the ways medical services and other expenses were being paid for, and the effects of thedisease and treatment on their school attendance, social life and plans. All of the stories,in one way or another, pointed to how the experience of living with cancer could not beunderstood in isolation from the other factors that make up the life of the child. Frag-ments from the interview transcripts and drawings are included here to illustrate some ofthese points.

The search for diagnosis and treatment

Most studies on paediatric oncology treatment do not focus on the process of obtainingmedical attention, taking for granted the difficulties children and parents might haveencountered. The moment of diagnosis was important because it was a time of reflectionwhen parents and children evaluated all of the factors at stake before making decisions (seeFigure 1). One of the first decisions involved is deciding whether the diagnosis provided bythe healthcare professional should be trusted or whether a second opinion should be sought.The doubt of this first diagnosis, and what later proved to be misdiagnosis, was present intwo of the stories of the children who were interviewed.

In Paraguay they performed an analysis on me and they told me that I had a tumour. My momasked the doctor if she could take me to another country and he asked her, why do you want totake her to another country? I dont know what my mom told him and we came here and it wassomething else, it was leukaemia. [] They hospitalized me because I needed antibiotics. I had a bigball here [points to her face] and with the antibiotic it was reduced. In Paraguay they were going tocut my face. (Rosa, 9 years, from Paraguay)

Table 1: Characteristics of the research participants

Name Place of origin HospitalAge(years) Gender

Karina Misiones, Argentina De Elizalde 8 FemaleMichelle Paraguay Garrahan 16 FemaleRosa Paraguay Garrahan 9 FemaleCarlos Rio Negro, Argentina Garrahan 11 MaleLuis Entre Rios, Argentina Gutierrez 12 MaleSanti Jujuy, Argentina Garrahan 12 MaleJose Formosa, Argentina Gutierrez 15 MaleMartin Bolivia Gutierrez 12 MaleAdriana Entre Rios, Argentina Garrahan 16 FemaleTamara Buenos Aires, Argentina Garrahan 8 Female



Cecilia: Why did you decide to come to Buenos Aires?Carlos: Because a man, the other doctor, wanted to do head surgery on me, but that was wrong.Cecilia: Where was this other doctor?Carlos: I dont remember his name, but he is the one that told us that what I have has no cure.(Carlos, 11 years, from Rio Negro)

In both cases, the children and their families travelled to another hospital to obtain a secondmedical opinion. In the case of Rosa, she travelled from Paraguay to Argentina with hermother under what can be interpreted as an undocumented migratory status. Carlos and hisfamily travelled a distance of approximately 1500 km from Rio Negro to Buenos Aires. Inthe case of both children, their stories of diagnosis went beyond the procedures carried outat the hospital, the information provided by the physician, or coping with the fact that theyhad cancer. Their narratives contained stories of misdiagnosis that make one wonder whatwould have happened if they had not sought another opinion with their families. The narra-tives also mentioned moving from one place to another which is an issue that I will discusslater on in this paper.

The description of how treatment was initiated also generated interesting stories. In the caseof Rosa, when she arrived to Buenos Aires with her mother, they spent weeks going fromone facility to another waiting to hear a different diagnosis. It was after a family memberwho had been residing in Argentina for some time helped them find a hospital, that theywent to Hospital Garrahan and initiated treatment. Michelles story is similar in this sense.

Cecilia: Were you always treated at Garrahan?Michelle: No, when we got here, because they did not want to treat me, we went to [Hospital]Penna.

Figure 1: Carlos drawing of his diagnosis. The text on the upper part says with fear and worried inSpanish.



Cecilia: Why didnt they want to treat you?Michelle: Because of a thing with the documents, paperwork, those things.Cecilia: how long were you at [Hospital] Penna?Michelle: a month. They told me that this was not the place where I was supposed to be.Cecilia: so where did they send you?Michelle: to [Hospital] Garrahan. (Michelle, 16 years, from Paraguay)

The back and forth experienced by Michelle and her family was produced by the denial ofmedical services by one physician at Hospital Garrahan. This physician refused to admitMichelle to the hospital because she came from Paraguay and did not have Argentine docu-mentation. Michelle was eventually provided medical treatment, but the memories of beingdenied care and moving from one hospital to the other were still part of her story.

Hospitalisations

One of the interesting issues that emerged from the interviews was the small amount ofinformation that the children felt was transmitted to them by healthcare professionals. Thestaff who works in public hospitals in Argentina is underpaid and overworked, leading to thereduction of time spent with individual patients. When asked if they had enough informationabout the disease and treatment, five out of the 10 children who were interviewed respondedno and indicated that they could not ask the healthcare professionals questions. The conver-sation with Martin included below provides details on these communication barriers.

Cecilia: Did you feel like you needed more information?Martin: YesCecilia: What would you have liked to have known?Martin: What they were going to do to me, if they were going to take me to another place.Cecilia: Did you ask anybody or looked for information anywhere?Martin: My mom wouldnt talk to me and I didnt like asking the doctors.Cecilia: Why not?Martin: I dont know, they answer back yelling.Cecilia: Who yells?Martin: They yell, because they say pass me this, pass me that and they get used to yelling. So,when I talk to them, they yell. (Martin, 12 years, from Bolivia)

An important factor to consider is that children did not remain uninformed, but activelysearched for ways to clear their doubts. All five of these children asked their parents aboutthese issues and looked for information on the Internet. Younger children such as Rosa andCarlos looked for key words (tumour, leukaemia, cancer) in search engines, whereas twoof the older children carried out more extensive searches and even became part of onlinecommunities formed by individuals who had their disease. They would chat about the symp-toms, procedures and common outcomes.

Cecilia: and do you know what the symptoms of the disease are?Michelle: I was finding out some information on the InternetCecilia: Why did you look for information on the Internet? Did you need more information?Michelle: YesCecilia: Did you ever ask your doctor?Michelle: NoCecilia: Why not?



Michelle: Because the doctor always comes in and sees me in a hurry, fast, and you cant ask heranything. So I find out on my own.Cecilia: And do you understand what you read on the Internet?Michelle: Sometimes and if I dont, I ask my teacher. I ask her what is this and she explains it tome. (Michelle, 17 years, from Paraguay)

Travelling in search for care

As it was mentioned earlier, six of the children who were interviewed came from provincesoutside of Buenos Aires and three came from neighbouring countries such as Bolivia andParaguay. Therefore, their narratives of diagnosis and treatment were intertwined with storiesof journeys to new countries or cities and the hardships associated with this migration. Chil-drens stories moved from discussing the difficulties of accessing care in their place of origin,to the positive factors found in Buenos Aires, and then tend to go back to the emotionaldifficulties produced by being far away (see Figure 2). Some also talked about wanting to goback after the treatment was completed as the quote and the drawing below demonstrate.

Cecilia: How long has it been since youve been to Bolivia?Martin: About two years. I had already been to Bolivia, but because over there you have to pay thehospital, and I got a disease of the blood and they told my mom that she had to pay all this money,so we came here. Here they treated me. After that I wanted to get to know my uncles and grandpar-ents and so I went back to visit. There are glow-worms and lizards there. (Martin, 12 years, fromBolivia)

Figure 2: Drawing made by Michelle (from Paraguay). The text on the upper parts says The best thingthat happened to me when I got to Argentina was having friends who love me and I love them and the

bad thing is that on Sundays I miss my cousins, aunt, and grandma and here I am alone.



The difficulties of resettlement were not only encountered by the children migrating fromneighbouring countries, but also emerged in the interviews of the Argentine children travellingto Buenos Aires. Homesickness and the difficulties encountered in the new city were mixedwith narratives of culpability where the reason why they (and their parents) had to leave theplace of origin was because of their disease. Associated with this culpability and blame werethe expenses many families incurred in order to migrate, the loss of parental employmentopportunities and the interruption of the education of siblings. Two of the older children eventalked about wanting to stop treatment in order to stop disrupting their families lives.

Adriana: Sometimes I feel like stopping all of this.Cecilia: the treatment?Adriana: Yes, I mean, look at my family, we get 150 pesos from Plan Jefas (a government assistanceprogram) and we have to spend all this money so that I can come here to get the treatment. I havetwo brothers and they have kids, my mom, and my dad and we are paying for the bus ticket for me,and the hotel. We put in the papers for a pension like eight months ago and havent gotten any-thing. (Adriana, 16 years, Entre Rios, Argentina)

Another issue that emerged when children talked about their medical treatment and the needto migrate to Buenos Aires was finding adequate conditions for resettling when they werenot in the hospital. The time of hospitalisation varied for each child according to the type ofcancer treatment and health complications. In many of their treatment histories, there weresometimes weeks or months in between stages of treatment where the children did not needto remain hospitalised but still needed to visit the hospitals for follow-ups. During thesedays, the children and their families needed to find temporary housing. Some stayed withfamily members in the capital (three of the children who were interviewed) whereas six chil-dren moved to low-cost hotels.

A common theme among the children who were interviewed was that only the mothersmigrated with them (only one child migrated with all of the members of the household). Allmothers had to abandon jobs in the place of origin, one migrated with the ill child and thewell siblings, and all faced difficulties obtaining economic support either from their familiesor government institutions. This situated families in a very difficult and precarious situationand, even though medical attention could be obtained for free for the ill child, the rest ofthe family had to struggle to find a proper place to relocate, pay monthly bills, continue witheducation, and support the ill child and accompanying mother. Because their childs cancertreatment was intensive, long and uncertain, most mothers could not look for stable sourcesof employment as they had to take care of their children during hospitalisations. This led tothe resettlement of migrant families in low-income neighbourhoods where they were exposedto urban violence, insecurity and unsanitary housing conditions.

I dont like the place where we live here. We dont have a lot of money because my mom cant workbecause she has to be with me because of the treatment so we rent a room from this house. But Idont like it. I hear gunshots and there a drunk people. [] Sometimes they yell and come into myroom when I am sleeping. (Martin, 12 years, from Bolivia)

The separation of family members as a result of this migration was also mentioned by thechildren as one of the hardest parts of their treatment. These issues were also present in thedrawings as some children chose to draw their houses or family members in their place oforigin.



Cecilia: When you come to Buenos Aires, do you only come with your mom?Santi: Yes me and my mom only. My dad has to work. My sister stays at home with my grandma.Cecilia: Do you miss your family?Santi: Yes. When my dad left, I cried. (Santi, 12 years, from Jujuy, Argentina)Cecilia: did you have any difficulties during treatment?Rosa: I always tell my mom that the hard thing for me is that I want to go back to my country, withmy family and my friends. (Rosa, 9 years, from Paraguay)

Another issue of concern for the children was the interruption of school. The interruption ofeducation is produced by the fact that many families visualise their migration as temporaryand do not see the benefit of enrolling the child in school in the new place, the lack of edu-cation programmes available within public hospitals and the delicate health condition ofchildren during treatment.

I cant go back to school. I want to study. I want to be a paediatrician. But we live outside of BuenosAires and we cant have a home-teacher, so I had to stop. (Rosa, 9 years, from Paraguay)

Discussion

The experiences of children receiving treatment in resource-poor facilities vary consider-ably to those described in other studies on child hospitalisation (Curtis and others, 2004;Whitehouse and others, 2001). The lack of toys, hospital teachers, play specialists, play-grounds and gardens in most paediatric hospitals in Argentina is not conducive to reduc-ing the isolating and frightening effects of hospitals. This is not only linked to the smallbudgets available for public hospitals in the country, but also to the disregard of play,recreation and schooling as important components of the hospitalisation experience ofchildren.

The small amount of time healthcare professionals spent with each patient and the lack ofeducational programmes in the hospital contributed to feelings of disconnection and disin-formation among the children. The Internet, although not always accessible, became animportant companion. The possibility of going online and sharing their experiences trans-formed these children into active participants during the process of their treatment, itrestored the agency they felt had been taken from them through the process of medicalisa-tion. The conversations about their online searchers indicated that, in some cases, thisbecame a reassuring process for these children. They were able to see that they were not theonly ones who had this disease and other individuals were going through the same medicalprocedures and had similar concerns.

The need to travel to Buenos Aires in order to access medical attention was an issue that cre-ated further disruption in the childs life. In the case of the Argentine children, this migrationwas produced by the unavailability of paediatric oncologists and medical equipment in theirplace of origin due to the centralised organisation of the public health system. The storiestold by these children went beyond descriptions of the disease and treatment and includedissues such as travelling to a new city, leaving behind family members and friends, interrupt-ing school and producing changes in the economic capacity of the family. Some of the chil-dren tended to place blame on themselves (and their disease) for all of these changes and, insome cases, discussed wanting to stop their medical treatment and returning to their place oforigin.



Conclusions

The narratives of children with cancer go beyond discussions of their disease and treatmentand include the different elements that make up their everyday lives. Children are not onlyconcerned about their own health and well-being, but also worry about their family mem-bers. Their descriptions of medical treatment are in some cases interlaced with stories ofjourneys to new cities and hospitals and the difficulties associated with these travels. Chil-dren, particularly those from other countries, talk about feeling discriminated when theywere denied medical attention. Migration creates deep transformations in their identities asthe host society is not always welcoming and receptive. The context of resettlement furthercomplicates the treatment experience as the limited family budget forces the children andtheir parents to relocate in low-cost hotels or marginalised neighbourhoods.

Qualitative research with paediatric oncology patients sheds light on the need to situate theirstories within medical institutions, but also in their particular family dynamics, among peergroups, in the larger Argentine society, new cities and spaces, and in the virtual world ofonline cancer communities. The documentation of these stories has practical consequences asthe children talk about the benefits of receiving medical treatment in a country where healthcare is considered a universal human right, but they also point to the limitations of contempo-rary policies. The current Argentine legislation on health places emphasis on the provision offree medical attention and medication but does little to address the inequalities in the distribu-tion of services across the country or the negative health outcomes produced by the precariousliving conditions of a great portion of the population. The fact that the children tended toequate the difficulties of treatment with those faced when leaving their homes and establish-ing residency in Buenos Aires should not be discounted as it illuminates important areas ofpolicy transformation. The stories of the children demonstrate the need of considering healthas a concept that goes beyond the medical sphere and includes all aspects of everyday life.

Acknowledgements

This research could not have been carried out without the support provided by the Institutefor the Study of Latin America and the Caribbean (ISLAC) from the University of SouthFlorida (USF). The authors PhD programme has been funded by the Fulbright-Garcia RoblesGrant, AAUW Doctoral Fellowship, CONACYT Doctoral Scholarship and the University ofSouth Florida. The authors gratitude goes to all of the children and parents who participatedin this research project, Fundacion Natal Dafne Flexer for their collaboration, Dr LindaWhiteford for her guidance, and Dr Donileen Loseke and Dr Rebecca Zarger for their com-ments on earlier versions of this article.

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Correspondence to: Cecilia Vindrola-Padros, Department of Anthropology, University of South Florida, 4202 East

Fowler Avenue, SOC 107, Tampa, FL 33620-8100, USA, Tel.: +1-813-523-3013. E-mail: [email protected]

Accepted for publication 3 February 2011



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