Social networks as education strategies for indigenous patients with rheumatoid arthritis during COVID-19 pandemic. Are they useful?

INTRODUCTION: The use of online education strategies has been introduced as a tool to support health care in patients with rheumatic disease. However, it is important to consider the patient's sociocultural environment. OBJECTIVE: To design and assessment of bilingual audiovisual material acceptability, by means of two social networks, for patients with rheumatoid arthritis (RA) in the qom community in Argentina. METHODS: A qualitative study was performed in two stages: (1) audiovisual material design, development, and validation implementing a collaborative action research method. (2) Publishing of the material on two social networks at two different times. The selected topic was the coronavirus disease 2019 impact on patients with RA. A qualitative and quantitative data analysis was performed. RESULTS: Forty subjects participated into the initial validation stage with a 70% acceptance rate. First, 28 subjects (70%) participated on Facebook and 25 (62.5%) joined the WhatsApp group. Then, the same number of subjects participated on Facebook, while only 45% of subjects participated on WhatsApp. Most of them participated using short phrases such as "I like it." The 60% of the participants played the videos. However, less than 10% shared them. Videos in Spanish were the once most shared. Participation dramatically fell during the second time, and 40% of the WhatsApp subjects never participated. CONCLUSION: The strategies developed for this indigenous community were of no utility, probably because of socio-cultural, economic, and digital barriers. They should be designed and implemented identifying the target group and its environment. Key Points • Online education strategies should be designed with cultural sensitivity. • Technological barriers make digital inequality visible in vulnerable groups. • Educational interventions should have a collaborative design and they should be created together with the communities. • The COVID-19 pandemic has deepened inequalities in the health care and follow-up of patients with rheumatic diseases, especially between most socially and economically disadvantaged groups.

Dilemas, disonancias y conflictos éticos del trabajo de campo en antropología médica en contextos institucionales de atención a la salud / Dilemmas, Dissonances, and Ethical Conflicts of Field Work in Medical Anthropology in Institutional Contexts of Health Care / Dilemas, dissonancias e conflitos éticos do trabalho de campo em antropología médica em contextos institucionais de atenido a saúde

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.

The relationship between proxy agency and the medical decisions concerning pediatric patients in palliative care: a qualitative study.

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.

Access to healthcare system of indigenous communities with musculoskeletal disorders and rheumatic disease in Chaco, Argentina: a qualitative study.

INTRODUCTION/OBJECTIVES: The objective of this study is to describe the local healthcare system from the perspective of the health professionals, community health workers, and local representatives of the qom community living in the province of Chaco, Argentina. METHODS: A qualitative study, with an ethnographic approach, was carried out using two techniques: non-participant observations and semi-structured interviews. A guide for the interviews was designed and developed by a multidisciplinary group of GLADERPO researchers. The main aspects included were the following: reference into the local healthcare system and accessibility to the system. Andersen's base conceptual model of health service utilization was applied for the analysis and for structuring the results. RESULTS: A total of 21 people were interviewed, twelve women and nine men with an age ranging between 25 and 60 years old. The main findings were different barriers (communication and cultural) between the community and the healthcare system; "navigation" within the health system carried out by the qom community; and migration and bureaucratization of the health system. CONCLUSIONS: These findings should be incorporated into educational strategies to improve access to healthcare system and adherence to medical treatment, establishing an interaction between the different levels of the local care system and providing community health workers with an appropriate training with the support of the community representatives. Key Points • The different barriers between the community and the healthcare system were described. • The "navigation" within the health system carried out by the qom community and the migration were relevant points. • The bureaucratization of the health system and the need to design and implement educational strategies in the future were highlighted.