RESUMEN
Resumen: El trabajo de campo etnográfico, que implica el encuentro con la otredad, es utilizado por la antropología médica para acercarse a la comprensión de problemáticas sociales relacionadas con la salud, la enfermedad, la atención y la muerte. El objetivo del trabajo fue realizar una reflexión ética de diversas situaciones conflictivas experimentadas por tres antropólogas durante sus investigaciones en México, a través del análisis de sus diarios de campo. Con este fin, se realizó un análisis grupal e interdisciplinario desde una perspectiva ética. Los conflictos encontrados se clasificaron en: 1. Dilemas éticos (como la sinceridad vs. ocultamiento de información); 2. Disonancias éticas (como la justicia en el acceso de los informantes a los servicios médicos, el acceso y la identidad del antropólogo en campo, los límites de la intervención, la reciprocidad y las emociones del investigador); y 3. Otros (conflictos éticos tales como la observación del paternalismo médico y las diferencias disciplinares entre el quehacer antropológico y el médico). Este análisis permitió comprender a través de una alerta ético-metodológica los posicionamientos epistemológicos, metodológicos y, principalmente, éticos de las investigadoras que, de manera subrepticia, guían la construcción del quehacer antropológico. Asimismo, la investigación permitió vislumbrar la responsabilidad de las acciones o inacciones del investigador frente a las personas observadas dentro de un contexto de atención en salud.
Abstract: Ethnographic fieldwork, which implies the encounter with otherness, is used by medical anthropology to approach the understanding of social problems related to health, illness, care and death. The objective of the work was to carry out an ethical reflection on various conflictive situations experienced by three anthropologists during their research in Mexico, by means of the analysis of their field diaries. To this end, a group and interdisciplinar y analysis was carried out from an ethical perspective. The conflicts found were classified as: 1. Ethical dilemmas (such as sincerity vs. concealment of information); 2. Ethical dissonances (such as fairness in informants' access to medical services, access and identity of the anthropologist in the field, limits of the intervention, reciprocity, and the emotions of the researcher); and 3. Others (ethical conflicts such as the observation of medical paternalism and the disciplinary differences between anthropological and medical work). This analysis allowed us to understand, through an ethical-methodological alert, the epistemological, methodological and, mainly, the ethical positions of the researchers who, surreptitiously, guide the construction of the anthropological task. Likewise, the investigation allowed us to glimpse the responsibility of the actions or inactions of the researcher vis a vis of the people observed within a context of health care.
Resumo: O trabalho de campo etnográfico, que implica o encontro com a alteridade, é utilizado pela antropologia médica para abordar a compreensão dos problemas sociais relacionados à saúde, doença, cuidado e morte. O objetivo do trabalho foi realizar uma reflexão ética sobre diversas situações conflituosas vivenciadas por três antropólogos durante suas pesquisas no México, por meio da análise de seus diários de campo. Para tanto, realizou-se uma análise grupal e interdisciplinar a partir de uma perspectiva ética. Os conflitos encontrados foram classificados em: 1. Dilemas éticos (como sinceridade x ocultação de informações); 2. Dissonâncias éticas (como equidade no acesso dos informantes aos serviços médicos, acesso e identidade do antropólogo em campo, limites de intervenção, reciprocidade e emoções do pesquisador); e 3. Outros (conflitos éticos como a observação do paternalismo médico e as diferenças disciplinares entre o trabalho antropológico e o médico). Essa análise permitiu compreender, por meio de um alerta ético-metodológico, as posições epistemológicas, metodológicas e, principalmente, éticas dos pesquisadores que, sub-repticiamente, orientam a construção da tarefa antropológica. Da mesma forma, a investigação permitiu vislumbrar a responsabilidade das ações ou omissões do pesquisador diante das pessoas observadas em um contexto de atenção à saúde.
RESUMEN
BACKGROUND: The children's agency and that exercised by parents and health professionals in palliative care, along with structural limitations imposed by the conditions of inequality, will provide a new perspective from medical anthropology and biomedicine to improve pediatric palliative care in complex therapeutic scenarios. The main purpose of the study was to analyze the ways in which pediatric patients have agency in relation to their parents and palliative care (PC) professionals within the hospital setting, as well as the structural circumstances that constrain said agency. METHOD: A hospital ethnography (by means of non-participant observation and interviews) of the palliative care (PC) unit in a children's hospital was conducted over the course of six months. A thematic analysis was performed using the ATLAS.ti software . RESULTS: Thirteen cases were reconstructed of underage patients of both sexes patients together with their families; five health professionals were interviewed. The analysis identified the following 6 thematic axes, around which this article is organized: 1. The relationship between the exercise of proxy agency and the medical decisions concerning underage patients. 2. Negotiating agency and support in decision-making. 3. Child autonomy. 4. The experiences of health professionals. 5. Limitations of palliative care. 6. Bureaucratization of palliative care. CONCLUSIONS: In pediatric palliative care, agency is a process whereby different agencies intertwine: lack of pediatric patients 'agency, the parents' agency, the parents' agency as representatives of their children (proxy agency), and the agency of health professionals. The concept of relational agency is proposed, defined as a set of group actions and decision-making centered around the pediatric patients's agency and the proxy agency.
