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.

«Living with rheumatoid arthritis¼ in an indigenous qom population in Argentina. A qualitative study.

INTRODUCTION: Rheumatoid arthritis (RA) is a chronic disease which impacts patients' quality of life. The prevalence of RA in the qom population was 2.4% and represented an aggressive and disabling disease. The study goal was to describe the experience of the indigenous qom community individual suffering from RA, along with their experience with the local health care system in the city of Rosario, Santa Fe, Argentina. METHODS: Qualitative Study using techniques of participant observation and semi-structured interviews; following a guideline developed by a multidisciplinary research group comprising anthropologists, rheumatologists, nurses, and psychologists. A triangulation strategy was implemented for the analysis. RESULTS: A total of 33 interviews were conducted in 29 individuals with RA. The results showed a "normalization" of their symptoms and of their limitations in performing daily tasks. The individuals' relationship with the local health care system was complex and limited in several aspects (e.g. access to health care, continuity of treatment, complexity of medical care pathway and lack of cultural competence). CONCLUSIONS: RA is a disease that has a negative impact on the daily lives of the qom people living in Rosario. Improving the relationship between this population and the local health care system as well as the implementation of multidisciplinary work should be priorities.

«Vivir con artritis reumatoide» en una población indígena qom en la Argentina. Un estudio cualitativo / «Living with Rheumatoid Arthritis» in an Indigenous Qom Population in Argentina. A Qualitative Study

Introducción: La artritis reumatoide (AR) es una enfermedad crónica que impacta la vida de los pacientes. La prevalencia de AR en la población qom fue de 2,4% y representó una enfermedad agresiva y limitante. El objetivo del estudio fue describir la experiencia de los individuos de la comunidad indígena qom que sufrían de AR y su experiencia con el sistema de salud local en la ciudad de Rosario, Santa Fe, Argentina. Materiales y métodos: Estudio cualitativo, de corte etnográfico, utilizando técnicas de observación de los participantes y entrevistas semiestructuradas; siguiendo una guía desarrollada por un grupo multidisciplinario de antropólogos, reumatólogos, enfermeras y psicólogos. Se realizó un análisis temático basado en las narrativas reconstruidas y una estrategia de triangulación entre investigadores. Resultados: Se realizaron 33 entrevistas a 29 individuos con AR. Los resultados mostraron una «normalización» de los síntomas y de sus limitaciones al realizar tareas diarias. La relación entre los individuos y el sistema de salud local fue complejo y limitado en diferentes aspectos (p. ej., acceso al sistema de salud, continuidad del tratamiento, complejidad en las vías de acceso a la asistencia médica y falta de competencia cultural). Conclusiones: La AR es una enfermedad que tiene un impacto negativo en la vida diaria de la población qom que vive en Rosario. Mejorar la relación entre esta población y el sistema de salud, así como implementar un trabajo multidisciplinario debe ser una prioridad.(AU)

Introduction: Rheumatoid arthritis (RA) is a chronic disease which impacts patients’ quality of life. The prevalence of RA in the qom population was 2.4% and represented an aggressive and disabling disease. The study goal was to describe the experience of the indigenous qom community individual suffering from RA, along with their experience with the local health care system in the city of Rosario, Santa Fe, Argentina. Methods: Qualitative Study using techniques of participant observation and semi-structured interviews; following a guideline developed by a multidisciplinary research group comprising anthropologists, rheumatologists, nurses, and psychologists. A triangulation strategy was implemented for the analysis. Results: A total of 33 interviews were conducted in 29 individuals with RA. The results showed a «normalization» of their symptoms and of their limitations in performing daily tasks. The individual relationships with the local health care system was complex and limited in several aspects (e.g. access to health care, continuity of treatment, complexity of medical care pathway and lack of cultural competence). Conclusions: RA is a disease that has a negative impact on the daily lives of the qom people living in Rosario. Improving the relationship between this population and the local health care system as well as the implementation of multidisciplinary work should be priorities.(AU)

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.

«Living with Rheumatoid Arthritis¼ in an Indigenous Qom Population in Argentina. A Qualitative Study. / «Vivir con artritis reumatoide¼ en una población indígena qom en la Argentina. Un estudio cualitativo.

INTRODUCTION: Rheumatoid arthritis (RA) is a chronic disease which impacts patients' quality of life. The prevalence of RA in the qom population was 2.4% and represented an aggressive and disabling disease. The study goal was to describe the experience of the indigenous qom community individual suffering from RA, along with their experience with the local health care system in the city of Rosario, Santa Fe, Argentina. METHODS: Qualitative Study using techniques of participant observation and semi-structured interviews; following a guideline developed by a multidisciplinary research group comprising anthropologists, rheumatologists, nurses, and psychologists. A triangulation strategy was implemented for the analysis. RESULTS: A total of 33 interviews were conducted in 29 individuals with RA. The results showed a «normalization¼ of their symptoms and of their limitations in performing daily tasks. The individual relationships with the local health care system was complex and limited in several aspects (e.g. access to health care, continuity of treatment, complexity of medical care pathway and lack of cultural competence). CONCLUSIONS: RA is a disease that has a negative impact on the daily lives of the qom people living in Rosario. Improving the relationship between this population and the local health care system as well as the implementation of multidisciplinary work should be priorities.