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The Everyday Lives of Children with Cancer in Argentina: Going beyond the Disease and Treatment

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Title: The Everyday Lives of Children with Cancer in Argentina: Going beyond the Disease and Treatment
Language: English
Authors: Vindrola-Padros, Cecilia
Source: Children & Society. Nov 2012 26(6):430-442.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Page Count: 13
Publication Date: 2012
Document Type: Journal Articles
Reports - Research
Descriptors: Children, Foreign Countries, Oncology, Hospitals, Cancer, Pediatrics, Costs, Medical Services, Barriers, Family Relationship, Academic Achievement
Geographic Terms: Argentina (Buenos Aires)
DOI: 10.1111/j.1099-0860.2011.00369.x
ISSN: 0951-0605
Abstract: Most of the literature on paediatric oncology treatment has provided descriptions of children's 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 children 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. (Contains 1 table and 2 figures.)
Abstractor: As Provided
Number of References: 42
Entry Date: 2012
Accession Number: EJ981333
Database: ERIC
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  Value: <anid>AN0082092689;but01nov.12;2019Jun03.14:48;v2.2.500</anid> <title id="AN0082092689-1">The Everyday Lives of Children with Cancer in Argentina: Going beyond the Disease and Treatment. </title> <p>Most of the literature on paediatric oncology treatment has provided descriptions of children's 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 children 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 The Author(s). Children & Society © 2011 National Children's Bureau and Blackwell Publishing Limited</p> <p>Keywords: cancer; narratives; Argentina; children</p> <p>I entered the hospital today at 8:00 a.m. and I was surprised to see how big it was and how many people were walking around in the hallways. Everything seemed a bit chaotic. Each hallway leads to an even bigger hallway or room. There were no signs or people willing to help me or patients find their way. Vendors are located in the hospital lobby and in some of the larger rooms in the bottom floor. They sell everything from a warm breakfast to toilet paper. The advertisement of hot coffee from these vendors is fused with the calling of patients' names for consultation, the sounds of the portable 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 from seeing far ahead. The elevator door was open and, in order to prevent people from falling into an open void, a chair had been placed diagonally. (Field Notes, 14 July 2009)</p> <p>This excerpt from my field notes is illustrative of one of the contexts in which children receive cancer treatment in Argentina. The scarcity of resources, chaos and frustration of healthcare professionals are part of the everyday lives of patients seeking medical attention in public hospitals. Misdiagnosis, failure to obtain medication, delays and abandonment of treatment, or the provision of medical services in unsanitary conditions are factors that become engrained in the patient's treatment experience.</p> <p>Previous studies on paediatric oncology have focused on children's knowledge regarding medical treatment, their conceptualisation of the disease and body, or the transformations in family relationships ([<reflink idref="bib12" id="ref1">12</reflink>]; [<reflink idref="bib17" id="ref2">17</reflink>]; [<reflink idref="bib18" id="ref3">18</reflink>]; [<reflink idref="bib41" id="ref4">41</reflink>]). The rest of the factors that make up the lives of the patients such as the difficulties in securing treatment, loss of parental employment, separation from family members and the interruption of school have not received equal attention. As a consequence, the complexity, uncertainty and even messiness of the everyday lives of children undergoing cancer treatment are underrepresented.</p> <p>Through the use of child narratives on their own treatment experiences, this paper has the purpose of identifying the multiple factors that influence the everyday lives of paediatric oncology patients in Argentina. Here, children are considered actors in the processes of improving and maintaining their health both inside and outside medical institutions. Furthermore, children's contributions to their household and family organisation are highlighted. The stories of the children and the difficulties encountered by them while trying to access medical attention are used to make policy recommendations.</p> <hd id="AN0082092689-2">Children and health care</hd> <p>Previous studies on child health have demonstrated that children have clear ideas on physical body functions ([<reflink idref="bib25" id="ref5">25</reflink>]; [<reflink idref="bib30" id="ref6">30</reflink>]), healthy and unhealthy behaviours ([<reflink idref="bib27" id="ref7">27</reflink>]; [<reflink idref="bib31" id="ref8">31</reflink>]), illness ([<reflink idref="bib6" id="ref9">6</reflink>]; [<reflink idref="bib10" id="ref10">10</reflink>]) and medical procedures ([<reflink idref="bib4" id="ref11">4</reflink>]; [<reflink idref="bib12" id="ref12">12</reflink>]). Child‐focused research has demonstrated that children take active roles in the maintenance of their own health by self‐medicalising, refusing or seeking medical treatment, and negotiating decisions with family members and healthcare professionals ([<reflink idref="bib12" id="ref13">12</reflink>]; [<reflink idref="bib28" id="ref14">28</reflink>]). Furthermore, children know how to make themselves and their surroundings safer ([<reflink idref="bib30" id="ref15">30</reflink>]) and properly care for other children and adults who are ill ([<reflink idref="bib23" id="ref16">23</reflink>]; [<reflink idref="bib33" id="ref17">33</reflink>]).</p> <p>Many of these studies have analysed child perceptions and behaviours within a clinical setting, shedding light on the development and competence models that prevail in biomedical practice under which paediatric patients are represented as immature, innocent and incompetent and, thus, not allowed to participate in decisions concerning their health ([<reflink idref="bib3" id="ref18">3</reflink>]; [<reflink idref="bib34" id="ref19">34</reflink>]). Child hospitalisation has been seen to produce significant changes in children's biographies and can be a stressful, even traumatic, experience ([<reflink idref="bib13" id="ref20">13</reflink>]; [<reflink idref="bib19" id="ref21">19</reflink>]). Factors such as the interruption of daily routines, separation from family members, unsuitable hospital spaces and painful medical procedures have been found to negatively influence children's experiences in hospitals ([<reflink idref="bib2" id="ref22">2</reflink>]; [<reflink idref="bib20" id="ref23">20</reflink>]; [<reflink idref="bib22" id="ref24">22</reflink>]; [<reflink idref="bib35" id="ref25">35</reflink>]; [<reflink idref="bib39" id="ref26">39</reflink>]). As a consequence, children's views on their hospital experiences have been sought to improve the attention provided to paediatric patients and develop 'child‐friendly' hospital spaces ([<reflink idref="bib2" id="ref27">2</reflink>]; [<reflink idref="bib11" id="ref28">11</reflink>]; [<reflink idref="bib39" id="ref29">39</reflink>]).</p> <p>In the specific case of cancer treatment, most of the studies that have focused on children's perspectives have been carried out in 'first world' or 'developed' countries. This research has pointed to the disruptive effects of cancer diagnoses and treatments on children's narratives ([<reflink idref="bib8" id="ref30">8</reflink>]; [<reflink idref="bib17" id="ref31">17</reflink>]; [<reflink idref="bib42" id="ref32">42</reflink>]), the different mechanisms children use to obtain information on their disease and prognosis during hospitalisation ([<reflink idref="bib12" id="ref33">12</reflink>]; [<reflink idref="bib21" id="ref34">21</reflink>]), the needs and concerns of children of different ages during hospitalisation ([<reflink idref="bib5" id="ref35">5</reflink>]; [<reflink idref="bib40" id="ref36">40</reflink>]), and the long‐term memories and effects of cancer treatment on children's bodies and family relationships ([<reflink idref="bib8" id="ref37">8</reflink>]; [<reflink idref="bib16" id="ref38">16</reflink>]; [<reflink idref="bib29" id="ref39">29</reflink>]; [<reflink idref="bib42" id="ref40">42</reflink>]). Although these studies have provided important insight into the everyday lives of paediatric oncology patients, they have not indicated the ways in which illness and treatment experiences are influenced by political and economic factors such as centralised public health policies, inequalities in the distribution of health services, parental unemployment, underpaid hospital staff, and the scarcity of medical equipment in public hospitals. A direct consequence of this research gap has been the creation of general categories of 'the chronically ill child' or 'the child with cancer' where it is assumed that all children have access to the same types of medical services.</p> <hd id="AN0082092689-3">Paediatric oncology treatment in developing countries</hd> <p>Even though biomedical research and practice have made great advances in the effectiveness of cancer therapies, children accessing care in 'developing' countries have less access to adequate medical treatment and lower survival rates ([<reflink idref="bib7" id="ref41">7</reflink>]; [<reflink idref="bib26" id="ref42">26</reflink>]). This situation has been produced by the unavailability of treatment in local medical facilities, lack of training of healthcare professionals, the unreliable supply of medications and delays in initial consultations ([<reflink idref="bib7" id="ref43">7</reflink>]; [<reflink idref="bib26" id="ref44">26</reflink>]). 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 rates of death produced by toxicity and infections ([<reflink idref="bib26" id="ref45">26</reflink>]; [<reflink idref="bib38" id="ref46">38</reflink>]).</p> <p>In the case of Argentina, the legislation on the public coverage of medical care allows all paediatric oncology patients to access free medical attention and medications and provides support for families in the form of stipends, housing and transportation subsidies, and assistance with paperwork ([<reflink idref="bib36" id="ref47">36</reflink>]; [<reflink idref="bib37" id="ref48">37</reflink>]). The ratification of the UN Convention on the Rights of the Child has been used as a political tool to guarantee children's universal right to health ([<reflink idref="bib9" id="ref49">9</reflink>]). Even though governmental support is extensive in many ways, recent studies have demonstrated that the poor training received by physicians on paediatric oncology produces delays in diagnosis, inadequate patient staging and incorrect medical decisions ([<reflink idref="bib14" id="ref50">14</reflink>]; [<reflink idref="bib15" id="ref51">15</reflink>]). This situation is further complicated by outdated medical equipment, drug shortages, excessive bureaucracy, underpaid hospital staff, absence of oncology wards for children and insufficient hospital beds ([<reflink idref="bib36" id="ref52">36</reflink>]). Furthermore, the few public hospitals equipped to treat paediatric oncology patients are located in the capital of Buenos Aires; forcing families from other regions of the country to travel long distances and resettle either temporarily or permanently in the capital ([<reflink idref="bib32" id="ref53">32</reflink>]; [<reflink idref="bib36" id="ref54">36</reflink>]). This internal migration poses difficulties for the children and their parents as travel and resettlement are expensive and lead to the separation of family members sometimes for years ([<reflink idref="bib1" id="ref55">1</reflink>]; [<reflink idref="bib37" id="ref56">37</reflink>]).</p> <p>Most of the research on paediatric oncology patients in Argentina has relied on the use of hospital statistics or is based on short survey instruments directed at parents (e.g. [<reflink idref="bib1" id="ref57">1</reflink>]; [<reflink idref="bib14" id="ref58">14</reflink>]; [<reflink idref="bib15" id="ref59">15</reflink>]; [<reflink idref="bib37" id="ref60">37</reflink>]). The lack of qualitative research focused on children has left their everyday life experiences unexplored. The purpose of this paper is to present the issues of concern to paediatric oncology patients undergoing treatment in the context of a public health system that promotes access to medical attention, but has limited resources. By placing emphasis on the local context, this paper has the goal of demonstrating the different ways in which individual treatment experiences are influenced by larger political and economic processes.</p> <hd id="AN0082092689-4">Methodology</hd> <p>The data presented here were collected during a three‐month research project conducted in Buenos Aires, Argentina (May–August 2009). The research was carried out in collaboration with Fundación Natalí Dafne Flexer (FNDF), a local non‐governmental organisation that provides medical and social assistance to paediatric oncology patients and their families. A total of 10 children who were being treated in three different public hospitals were interviewed in FNDF's headquarters. The interviews had a semi‐structured open‐ended format and requested information on the history of diagnosis and treatment, the child's family, the ways in which children acquired information and the main difficulties encountered by the child. The interview format was flexible enough to allow the children to construct their own narratives regarding these points and to talk about issues that were of importance to them.</p> <p>In addition to the interviews, two drawings were requested from each child illustrating their experiences with diagnosis and treatment, and their interpretations of the drawings were recorded separately. This technique has been used frequently in child‐focused health research in order to capture children's opinions, beliefs or attitudes towards particular topics ([<reflink idref="bib24" id="ref61">24</reflink>]; [<reflink idref="bib30" id="ref62">30</reflink>]; [<reflink idref="bib35" id="ref63">35</reflink>]). In the case of this study, the drawings triggered conversation on issues that had not emerged in the interviews, enriching the data collection process. This research project also implemented interviews with parents and participant observation in FNDF's headquarters, but this information is not included in this article due to lack of space.</p> <p>The interview recordings and descriptions of the drawings were transcribed and translated into English by the researcher. Each participant's transcripts were analysed by reading through the material and creating a list of themes. The researcher divided the selection of themes among the following categories: histories of diagnosis and treatment, family relationships, and the concerns and difficulties identified by the children. These themes were used to create a list of codes. Once the list of codes was created, the researcher went over the transcripts and coded them with computer software (ATLAS. ti Scientific Software Development GmbH, Berlin, Germany). The transcripts of all individuals were then compared according to these codes in order to select the most frequent topics of conversation and to determine how experiences varied among the participants.</p> <hd id="AN0082092689-5">Sample</hd> <p>As it was mentioned earlier, the research project was based on a convenience sample of 10 children (aged 8–16 years) undergoing cancer treatment in three public hospitals in Buenos Aires. Table 1 summarises the characteristics of the participants. The names used to identify each of the cases are pseudonyms.</p> <p>1 Characteristics of the research participants</p> <p> <ephtml> <table><thead valign="bottom"><tr><th>Name</th><th>Place of origin</th><th>Hospital</th><th>Age (years)</th><th>Gender</th></tr></thead><tbody valign="top"><tr><td>Karina</td><td>Misiones, Argentina</td><td>De Elizalde</td><td>8</td><td>Female</td></tr><tr><td>Michelle</td><td>Paraguay</td><td>Garrahan</td><td>16</td><td>Female</td></tr><tr><td>Rosa</td><td>Paraguay</td><td>Garrahan</td><td>9</td><td>Female</td></tr><tr><td>Carlos</td><td>Rio Negro, Argentina</td><td>Garrahan</td><td>11</td><td>Male</td></tr><tr><td>Luis</td><td>Entre Rios, Argentina</td><td>Gutierrez</td><td>12</td><td>Male</td></tr><tr><td>Santi</td><td>Jujuy, Argentina</td><td>Garrahan</td><td>12</td><td>Male</td></tr><tr><td>Jose</td><td>Formosa, Argentina</td><td>Gutierrez</td><td>15</td><td>Male</td></tr><tr><td>Martin</td><td>Bolivia</td><td>Gutierrez</td><td>12</td><td>Male</td></tr><tr><td>Adriana</td><td>Entre Rios, Argentina</td><td>Garrahan</td><td>16</td><td>Female</td></tr><tr><td>Tamara</td><td>Buenos Aires, Argentina</td><td>Garrahan</td><td>8</td><td>Female</td></tr></tbody></table> </ephtml> </p> <p>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 was reviewed and approved by the Institutional Review Board (IRB). The parents of potential participants were approached individually and the verbal informed consent script previously approved 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 participate and gave consent for their children to participate, children were approached individually and were read the verbal assent script. The interviews were carried out in places where the participants felt comfortable and where privacy could be assured.</p> <hd id="AN0082092689-6">Results</hd> <p>In general, the children's narratives were filled with stories of struggle, denial and perseverance demonstrating that healthcare access and delivery were rarely linear and orderly processes. Furthermore, even when asked to describe the treatment they were going through, 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 the disease 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 be understood in isolation from the other factors that make up the life of the child. Fragments from the interview transcripts and drawings are included here to illustrate some of these points.</p> <hd id="AN0082092689-7">The search for diagnosis and treatment</hd> <p>Most studies on paediatric oncology treatment do not focus on the process of obtaining medical attention, taking for granted the difficulties children and parents might have encountered. The moment of diagnosis was important because it was a time of reflection when parents and children evaluated all of the factors at stake before making decisions (see Figure 1). One of the first decisions involved is deciding whether the diagnosis provided by the 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 in two of the stories of the children who were interviewed.</p> <p>Graph: 1 Carlos' drawing of his diagnosis. The text on the upper part says 'with fear and worried' in Spanish.</p> <p>In Paraguay they performed an analysis on me and they told me that I had a tumour. My mom asked the doctor if she could take me to another country and he asked her, 'why do you want to take her to another country?' I don't know what my mom told him and we came here and it was something else, it was leukaemia. [...] They hospitalized me because I needed antibiotics. I had a big ball here [points to her face] and with the antibiotic it was reduced. In Paraguay they were going to cut my face. (Rosa, 9 years, from Paraguay)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 don't remember his name, but he is the one that told us that what I have has no cure. (Carlos, 11 years, from Rio Negro)</p> <p>In both cases, the children and their families travelled to another hospital to obtain a second medical opinion. In the case of Rosa, she travelled from Paraguay to Argentina with her mother under what can be interpreted as an undocumented migratory status. Carlos and his family travelled a distance of approximately 1500 km from Rio Negro to Buenos Aires. In the case of both children, their stories of diagnosis went beyond the procedures carried out at the hospital, the information provided by the physician, or coping with the fact that they had cancer. Their narratives contained stories of misdiagnosis that make one wonder what would have happened if they had not sought another opinion with their families. The narratives also mentioned moving from one place to another which is an issue that I will discuss later on in this paper.</p> <p>The description of how treatment was initiated also generated interesting stories. In the case of Rosa, when she arrived to Buenos Aires with her mother, they spent weeks going from one facility to another waiting to hear a different diagnosis. It was after a family member who had been residing in Argentina for some time helped them find a hospital, that they went to Hospital Garrahan and initiated treatment. Michelle's story is similar in this sense.</p> <p>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.Cecilia: Why didn't 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)</p> <p>The back and forth experienced by Michelle and her family was produced by the denial of medical services by one physician at Hospital Garrahan. This physician refused to admit Michelle to the hospital because she came from Paraguay and did not have Argentine documentation. Michelle was eventually provided medical treatment, but the memories of being denied care and moving from one hospital to the other were still part of her story.</p> <hd id="AN0082092689-8">Hospitalisations</hd> <p>One of the interesting issues that emerged from the interviews was the small amount of information that the children felt was transmitted to them by healthcare professionals. The staff who works in public hospitals in Argentina is underpaid and overworked, leading to the reduction of time spent with individual patients. When asked if they had enough information about the disease and treatment, five out of the 10 children who were interviewed responded no and indicated that they could not ask the healthcare professionals questions. The conversation with Martin included below provides details on these communication barriers.</p> <p>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 wouldn't talk to me and I didn't like asking the doctors.Cecilia: Why not?Martin: I don't 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)</p> <p>An important factor to consider is that children did not remain uninformed, but actively searched for ways to clear their doubts. All five of these children asked their parents about these issues and looked for information on the Internet. Younger children such as Rosa and Carlos looked for key words ('tumour', 'leukaemia', 'cancer') in search engines, whereas two of the older children carried out more extensive searches and even became part of online communities formed by individuals who had their disease. They would chat about the symptoms, procedures and common outcomes.</p> <p>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 can't ask her anything. So I find out on my own.Cecilia: And do you understand what you read on the Internet?Michelle: Sometimes and if I don't, I ask my teacher. I ask her what is this and she explains it to me. (Michelle, 17 years, from Paraguay)</p> <hd id="AN0082092689-9">Travelling in search for care</hd> <p>As it was mentioned earlier, six of the children who were interviewed came from provinces outside of Buenos Aires and three came from neighbouring countries such as Bolivia and Paraguay. Therefore, their narratives of diagnosis and treatment were intertwined with stories of journeys to new countries or cities and the hardships associated with this migration. Children's 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 emotional difficulties produced by being far away (see Figure 2). Some also talked about wanting to go back after the treatment was completed as the quote and the drawing below demonstrate.</p> <p>Graph: 2 Drawing made by Michelle (from Paraguay). The text on the upper parts says 'The best thing that 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'.</p> <p>Cecilia: How long has it been since you've been to Bolivia?Martin: About two years. I had already been to Bolivia, but because over there you have to pay the hospital, 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 grandparents and so I went back to visit. There are glow‐worms and lizards there. (Martin, 12 years, from Bolivia)</p> <p>The difficulties of resettlement were not only encountered by the children migrating from neighbouring countries, but also emerged in the interviews of the Argentine children travelling to Buenos Aires. Homesickness and the difficulties encountered in the new city were mixed with narratives of culpability where the reason why they (and their parents) had to leave the place of origin was because of their disease. Associated with this culpability and blame were the expenses many families incurred in order to migrate, the loss of parental employment opportunities and the interruption of the education of siblings. Two of the older children even talked about wanting to stop treatment in order to stop disrupting their families' lives.</p> <p>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 assistance program) and we have to spend all this money so that I can come here to get the treatment. I have two 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 haven't gotten anything. (Adriana, 16 years, Entre Rios, Argentina)</p> <p>Another issue that emerged when children talked about their medical treatment and the need to migrate to Buenos Aires was finding adequate conditions for resettling when they were not in the hospital. The time of hospitalisation varied for each child according to the type of cancer treatment and health complications. In many of their treatment histories, there were sometimes weeks or months in between stages of treatment where the children did not need to remain hospitalised but still needed to visit the hospitals for follow‐ups. During these days, the children and their families needed to find temporary housing. Some stayed with family members in the capital (three of the children who were interviewed) whereas six children moved to low‐cost hotels.</p> <p>A common theme among the children who were interviewed was that only the mothers migrated with them (only one child migrated with all of the members of the household). All mothers had to abandon jobs in the place of origin, one migrated with the ill child and the well siblings, and all faced difficulties obtaining economic support either from their families or government institutions. This situated families in a very difficult and precarious situation and, even though medical attention could be obtained for free for the ill child, the rest of the family had to struggle to find a proper place to relocate, pay monthly bills, continue with education, and support the ill child and accompanying mother. Because their child's cancer treatment was intensive, long and uncertain, most mothers could not look for stable sources of employment as they had to take care of their children during hospitalisations. This led to the resettlement of migrant families in low‐income neighbourhoods where they were exposed to urban violence, insecurity and unsanitary housing conditions.</p> <p>I don't like the place where we live here. We don't have a lot of money because my mom can't work because she has to be with me because of the treatment so we rent a room from this house. But I don't like it. I hear gunshots and there a drunk people. [...] Sometimes they yell and come into my room when I am sleeping. (Martin, 12 years, from Bolivia)</p> <p>The separation of family members as a result of this migration was also mentioned by the children as one of the hardest parts of their treatment. These issues were also present in the drawings as some children chose to draw their houses or family members in their place of origin.</p> <p>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, with my family and my friends. (Rosa, 9 years, from Paraguay)</p> <p>Another issue of concern for the children was the interruption of school. The interruption of education is produced by the fact that many families visualise their migration as temporary and do not see the benefit of enrolling the child in school in the new place, the lack of education programmes available within public hospitals and the delicate health condition of children during treatment.</p> <p>I can't go back to school. I want to study. I want to be a paediatrician. But we live outside of Buenos Aires and we can't have a home‐teacher, so I had to stop. (Rosa, 9 years, from Paraguay)</p> <hd id="AN0082092689-10">Discussion</hd> <p>The experiences of children receiving treatment in resource‐poor facilities vary considerably to those described in other studies on child hospitalisation ([<reflink idref="bib20" id="ref64">20</reflink>]; [<reflink idref="bib39" id="ref65">39</reflink>]). The lack of toys, hospital teachers, play specialists, playgrounds and gardens in most paediatric hospitals in Argentina is not conducive to reducing the isolating and frightening effects of hospitals. This is not only linked to the small budgets available for public hospitals in the country, but also to the disregard of play, recreation and schooling as important components of the hospitalisation experience of children.</p> <p>The small amount of time healthcare professionals spent with each patient and the lack of educational programmes in the hospital contributed to feelings of disconnection and disinformation among the children. The Internet, although not always accessible, became an important companion. The possibility of going online and sharing their experiences transformed these children into active participants during the process of their treatment, it restored the agency they felt had been taken from them through the process of medicalisation. The conversations about their online searchers indicated that, in some cases, this became a reassuring process for these children. They were able to see that they were not the only ones who had this disease and other individuals were going through the same medical procedures and had similar concerns.</p> <p>The need to travel to Buenos Aires in order to access medical attention was an issue that created further disruption in the child's life. In the case of the Argentine children, this migration was produced by the unavailability of paediatric oncologists and medical equipment in their place of origin due to the centralised organisation of the public health system. The stories told by these children went beyond descriptions of the disease and treatment and included issues such as travelling to a new city, leaving behind family members and friends, interrupting school and producing changes in the economic capacity of the family. Some of the children tended to place blame on themselves (and their disease) for all of these changes and, in some cases, discussed wanting to stop their medical treatment and returning to their place of origin.</p> <hd id="AN0082092689-11">Conclusions</hd> <p>The narratives of children with cancer go beyond discussions of their disease and treatment and include the different elements that make up their everyday lives. Children are not only concerned about their own health and well‐being, but also worry about their family members. Their descriptions of medical treatment are in some cases interlaced with stories of journeys to new cities and hospitals and the difficulties associated with these travels. Children, particularly those from other countries, talk about feeling discriminated when they were denied medical attention. Migration creates deep transformations in their identities as the host society is not always welcoming and receptive. The context of resettlement further complicates the treatment experience as the limited family budget forces the children and their parents to relocate in low‐cost hotels or marginalised neighbourhoods.</p> <p>Qualitative research with paediatric oncology patients sheds light on the need to situate their stories within medical institutions, but also in their particular family dynamics, among peer groups, in the larger Argentine society, new cities and spaces, and in the virtual world of online cancer communities. The documentation of these stories has practical consequences as the children talk about the benefits of receiving medical treatment in a country where health care is considered a universal human right, but they also point to the limitations of contemporary policies. The current Argentine legislation on health places emphasis on the provision of free medical attention and medication but does little to address the inequalities in the distribution of services across the country or the negative health outcomes produced by the precarious living conditions of a great portion of the population. The fact that the children tended to equate the difficulties of treatment with those faced when leaving their homes and establishing residency in Buenos Aires should not be discounted as it illuminates important areas of policy transformation. The stories of the children demonstrate the need of considering health as a concept that goes beyond the medical sphere and includes all aspects of everyday life.</p> <hd id="AN0082092689-12">Acknowledgements</hd> <p>This research could not have been carried out without the support provided by the Institute for the Study of Latin America and the Caribbean (ISLAC) from the University of South Florida (USF). The author's PhD programme has been funded by the Fulbright‐Garcia Robles Grant, AAUW Doctoral Fellowship, CONACYT Doctoral Scholarship and the University of South Florida. The author's gratitude goes to all of the children and parents who participated in this research project, Fundación Natalí Dafne Flexer for their collaboration, Dr Linda Whiteford for her guidance, and Dr Donileen Loseke and Dr Rebecca Zarger for their comments on earlier versions of this article.</p> <ref id="AN0082092689-13"> <title> References </title> <blist> <bibl id="bib1" idref="ref55" type="bt">1</bibl> <bibtext> Abriata M, Moreno F. 2010. Cáncer en la Población de Menores de 15 Años en Argentina. Revista Argentina de Salud Pública 1 : 42 – 45.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref22" type="bt">2</bibl> <bibtext> Adams A, Theodore D, Goldenberg E, McLaren C, McKeever P. 2010. Kids in the atrium: comparing architectural intentions and children's experiences in a pediatric hospital lobby. 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European Journal of Cancer Care 15 : 8 – 18, doi: 10.1111/j.1365‐2354.2005.00614.x.</bibtext> </blist> </ref> <aug> <p>By Cecilia Vindrola‐Padros</p> <p>Reported by Author</p> </aug> <nolink nlid="nl1" bibid="bib12" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib17" firstref="ref2"></nolink> <nolink nlid="nl3" bibid="bib18" firstref="ref3"></nolink> <nolink nlid="nl4" bibid="bib41" firstref="ref4"></nolink> <nolink nlid="nl5" bibid="bib25" firstref="ref5"></nolink> <nolink nlid="nl6" bibid="bib30" firstref="ref6"></nolink> <nolink nlid="nl7" bibid="bib27" firstref="ref7"></nolink> <nolink nlid="nl8" bibid="bib31" firstref="ref8"></nolink> <nolink nlid="nl9" bibid="bib10" firstref="ref10"></nolink> <nolink nlid="nl10" bibid="bib28" firstref="ref14"></nolink> <nolink nlid="nl11" bibid="bib23" firstref="ref16"></nolink> <nolink nlid="nl12" bibid="bib33" firstref="ref17"></nolink> <nolink nlid="nl13" bibid="bib34" firstref="ref19"></nolink> <nolink nlid="nl14" bibid="bib13" firstref="ref20"></nolink> <nolink nlid="nl15" bibid="bib19" firstref="ref21"></nolink> <nolink nlid="nl16" bibid="bib20" firstref="ref23"></nolink> <nolink nlid="nl17" bibid="bib22" firstref="ref24"></nolink> <nolink nlid="nl18" bibid="bib35" firstref="ref25"></nolink> <nolink nlid="nl19" bibid="bib39" firstref="ref26"></nolink> <nolink nlid="nl20" bibid="bib11" firstref="ref28"></nolink> <nolink nlid="nl21" bibid="bib42" firstref="ref32"></nolink> <nolink nlid="nl22" bibid="bib21" firstref="ref34"></nolink> <nolink nlid="nl23" bibid="bib40" firstref="ref36"></nolink> <nolink nlid="nl24" bibid="bib16" firstref="ref38"></nolink> <nolink nlid="nl25" bibid="bib29" firstref="ref39"></nolink> <nolink nlid="nl26" bibid="bib26" firstref="ref42"></nolink> <nolink nlid="nl27" bibid="bib38" firstref="ref46"></nolink> <nolink nlid="nl28" bibid="bib36" firstref="ref47"></nolink> <nolink nlid="nl29" bibid="bib37" firstref="ref48"></nolink> <nolink nlid="nl30" bibid="bib14" firstref="ref50"></nolink> <nolink nlid="nl31" bibid="bib15" firstref="ref51"></nolink> <nolink nlid="nl32" bibid="bib32" firstref="ref53"></nolink> <nolink nlid="nl33" bibid="bib24" firstref="ref61"></nolink>
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  Data: The Everyday Lives of Children with Cancer in Argentina: Going beyond the Disease and Treatment
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  Data: 10.1111/j.1099-0860.2011.00369.x
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  Data: Most of the literature on paediatric oncology treatment has provided descriptions of children's 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 children 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. (Contains 1 table and 2 figures.)
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      – SubjectFull: Oncology
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