Choosing a miracle: Impoverishment, mistrust, and discordant views in abandonment of treatment of children with cancer in El Salvador.

OBJECTIVE: In El Salvador, at the only hospital offering pediatric oncology care, the number of children abandoning treatment for cancer has decreased in recent years (13%-3%). An investigation of caregivers' motives for abandonment was performed over 15 months from 2012 to 2014. Caregiver and health team perspectives on abandonment are reported using the explanatory model (EM) framework. METHOD: Semistructured in-depth interviews and in hospital participant observations were conducted with caregivers of children diagnosed with cancer, who abandoned their child's treatment or were considering abandoning, and with members of the medical team. RESULTS: Of the 41 caregivers interviewed, 26 caregivers (of 19 children) abandoned their child's treatment, returned from a series of missed appointments, or showed a risk of abandoning. Caregivers of 8 children stated that a miraculous cure was the main reason for abandoning; increasing impoverishment and misgivings toward treatment and outcomes were also mentioned. The responses of the medical team demonstrated a discordant EM for the child's cancer and treatment effects and that only biomedical treatment was effective for cure. CONCLUSIONS: The caregivers' increasing impoverishment (not only financial) and misgivings about the child's treatment caused them to reconsider their therapeutic choices and rely on their belief in a miraculous cure, thus abandoning. The caregivers and medical team's discordant EM about the child's cancer and treatment must be acknowledged and shared decision making considered, together with consistency in the strategies that currently demonstrate to be effective decreasing abandonment.

Childhood cancer in El Salvador: A preliminary exploration of parental concerns in the abandonment of treatment.

PURPOSE: In El Salvador, children under 12 diagnosed with cancer have access to free treatment at a specialized national facility. Until recently, 13 percent of patients annually abandoned therapy--a serious loss of lives and scarce resources. This qualitative study explores how some parents perceived their child's cancer and treatment, and what led them to stop bringing their child for chemotherapy. METHOD: In in-depth interviews, parents of six children who abandoned their child's cancer treatment discussed sickness and life circumstances during the course of treatment. RESULTS: Poverty, effects of treatment, mistrust, emotions and religious convictions all figured in the parents' explanation of their actions. However, each family weighed these concerns differently. It was the interaction of the concerns, and not the concern per se, that represented the explanatory frameworks the families used to explain stopping their child's treatment. This finding illustrates the parents' navigation among a collection of variable concerns, rather than exposing one fixed cause for their behavior. For example, poverty affects a parent's worldview as well as concrete living conditions, and therefore has a complex relationship with abandonment of treatment. Thus, it follows that strategies to reduce treatment abandonment (and increase a child's chance for survival) must be multidimensional. CONCLUSIONS: Qualitative studies of how families perceive childhood cancer and treatment can illuminate the processes and relationships involved in abandonment of treatment. This approach can also show how families' living circumstances frame their perceptions and inform strategies to improve how medical services are provided, thus reducing abandonment of treatment.

The chemo and the mona: inhalants, devotion and street youth in Mexico City.

UNLABELLED: This paper understands inhalant use--the deliberate inhalation of volatile solvents or glues with intentions of intoxication--as a socially and culturally constituted practice. It describes the inhalant use of young street people in Mexico City from their perspective ("the vicioso or inhalant fiend's point of view"). BACKGROUND: Even if inhalant use is globally associated with economic inequality and deprivation, there is a marked lack of ethnography. Incomprehension and indignation have blocked our understanding of inhalant use as a form of marginalised drug use. The current explanation models reduce inhalant consumption to universal factors and individual motives; separating the practice from its context, these models tend to overlook gustatory meanings and experiences. METHODS: The paper is informed by long-term, on-going fieldwork with young street people in Mexico City. Fieldwork was done from 1990 through 2010, in regular periods of fieldwork and shorter visits, often with Mexican colleagues. We created extensive sets of fieldnotes, which were read and re-read. RESULTS: "Normalcy" is a striking feature of inhalant use in Mexico City. Street-wise inhabitants of popular neighbourhoods have knowledge about inhalants and inhalant users, and act accordingly. Subsequently, Mexico City's elaborate street culture of sniffing is discussed, that is, the range of inhalants used, how users classify the substances, and their techniques for sniffing. The paper also distinguishes three patterns of inhalant use, which more or less correlate with age. These patterns indicate embodiments of street culture: the formation within users of gusto, that is, an acquired appetite for inhalants, and of vicio, the inhalant fiends' devotion to inhalants. CONCLUSION: What emerges from the ethnographic findings is an elaborate street culture of sniffing, a complex configuration of shared perspectives and embodied practices, which are shaped by and shaping social exclusion. These findings are relevant to appreciate and address the inhalant fiends' acquired appetite and habit.

"My body breaks. I take solution." Inhalant use in Delhi as pleasure seeking at a cost.

BACKGROUND: Inhalant use has existed in India since the 1970s and has increased significantly over the last decades, especially among street-oriented young people. The latter constitute a heterogeneous category: children from street families, children 'of' the street, rag pickers, and part-time street children. There are also inhalant-using schoolchildren and young people in slums. METHODS: Fieldwork was conducted for 1 year. Team ethnography, multi-sited and comparative research, flexibility of methods and writing field notes were explicit parts of the research design. Most research was undertaken with six groups in four areas of Delhi, exemplifying six generic categories of inhalant-using street-oriented young people. RESULTS: Inhalants in India are branded: Eraz-Ex diluter and whitener, manufactured by Kores, are used throughout Delhi; Omni glue in one specific area. There is a general lack of awareness and societal indifference towards inhalant use, with the exception of the inhalant users themselves, who possess practical knowledge. They conceive of inhalants as nasha, encapsulating the materiality of the substances and the experiential aspects of intoxication and addiction. Fragments of group interviews narrate the sensory appeal of inhalants, and an ethnographic vignette the dynamics of a sniffing session. These inhalant-using street children seek intoxication in a pursuit of pleasure, despite the harm that befalls them as a result. Some find nasha beautiful, notwithstanding the stigmatization, violence and bodily deterioration; others experience it as an overpowering force. CONCLUSION: A source of attraction and pleasure, inhalants ravage street children's lives. In this mysterious space of lived experience, their self-organization evolves. Distinguishing between hedonic and side effects, addiction helps to understand inhalant use as at once neurobiological, cultural, and involving agency. The implications are that India needs to develop a policy of treatment and employment to deal with the addiction.

La banda y sus choros: Un grupo de niños de la calle hilando historias de edad, género y liderazgo / La banda and their choros: A group of street children narrating tales about leadership, gender and age

Este artículo narra la historia de los chavos de Bucareli, un grupo de niños de la calle de la Ciudad de México, quienes también eran conocidos como "la banda del metro Juárez". Documentar su vida cotidiana por un periodo de tres años me ha permitido formular tres puntos de análisis relacionados con la diferenciación interna del poder, puntos también válidos para otras 15 bandas de niños de la calle de la Ciudad de México. Primero, es importante poner en una perspectiva de edad las dinámicas sociales de liderazgo y género que se dan al interior de la banda y entre las diferentes bandas. Segundo, los principios que estructuran la vida en las calles, como el liderazgo, el género y la edad, tienen un carácter inherentemente evanescente como consecuencia de la interacción de limitaciones internas y externas a la banda. Tercero, la falta de vivienda genera un mundo de paradojas y contradicciones. La diferenciación de poder entre personas que carecen relativamente de poder es una contradicción; y las dinámicas de liderazgo, género y edad demuestran las paradojas de las relaciones internas de la banda. Dichas paradojas pueden ser particularmente alienantes en las relaciones entre los niños de calle y los adultos que fungen como padres o madres sustitutos. Este análisis etnográfico de la "enloquecedora falta de una vivienda" es relevante para la salud mental. Las historias narradas por los "gamines" en torno al liderazgo, el género y la edad esconden su fragilidad, porque en ellas los niños de la calle se atribuyen un poder del cual carecen en realidad. Más que meramente síntomas de locura o una personalidad manipuladora, estas historias testifican la creatividad y la resiliencia de estos jóvenes. El poder ilusorio de sus "choros" les facilita vivir con aparente armonía en las condiciones en que viven.

This article recounts the story of the Bucareli boys, a group of street children in Mexico City who were also known as the banda of metro Juárez. Documenting the "Buca" boys over a period of three years allowed me to formulate three insights about the internal power differentiation in terms of leadership, gender, and age. These insights are valid as well, I think, for the other 15 bandas where I did fieldwork. First, it is important to place the dynamics of leadership and gender relations in an age perspective. Second, as structuring principles of street life, leadership, gender and age have an inherently evanescent character, due to an interplay of constraints that are both internal and external to the banda. My third suggestion concurs with Liebow in that homelessness creates a world of paradoxes and contradictions. Power differentiation among relatively powerless people is a contradiction in terms; and the dynamics of leadership, gender and age disclose paradoxical social ties within the banda. These can be particularly harrowing in the relations between street kids and the young adults posing as surrogate fathers and mothers. This ethnographic analysis of "crazy-making homelessness" is relevant for mental health. The kids' story-telling about leadership and gender relations veiled their fragility, since in these tales they attributed themselves a power which they did not have in reality. More than mere symptoms of psychopathology or a manipulative personality disorder, these stories testify to the creativity and resilience of these young people. The illusory power of the choros, the bullshit tales about street children, enables them to live in apparent harmony under the conditions in which they live.