RESUMO
Día tras día aumenta la presencia de las redes sociales virtuales en el campo sanitario; sin embargo, pocos autores reportan los avances y dificultades que enfrentan al usarlas. Realizamos un trabajo participativo en Guadalajara, México utilizando dichas redes en cuatro proyectos sobre la enfermedad renal: una investigación, un canal en YouTube, un libro digital y una página en Facebook. Académicos, enfermos, familiares y asociaciones participaron en el proceso. Obtuvimos la información mediante triangulación metodológica e hicimos análisis de contenido. Según nuestros resultados, destaca el análisis del panorama hispanoamericano sobre este tema, la difusión del trabajo colaborativo a la población general y la diversidad de usos de las redes sociales por individuos enfermos. Concluimos que se requiere continuar esta línea de trabajo para ampliar su potencial en el campo sanitario, mediante la colaboración de académicos y otros actores sociales.
Virtual social networks are increasingly present in the health field; however, few authors report the advances and difficulties related to their use. A participatory study using such networks was conducted in Guadalajara, Mexico. Four projects involving kidney disease were implemented: a survey, a YouTube channel, an e-book, and a Facebook page. Students, patients, family members, and associations participated in the process. Information was obtained through method triangulation and content analysis. The findings of this study highlight the analysis of the Hispanic-American perspective on this theme, the diffusion of the collaborative work to the population, and the diversity of uses of social networks by sick individuals. The study concluded that it is necessary to continue this line of work in order to expand its potential in the health field through the collaboration of students and other social actors.
Dia a dia, a presença de redes sociais virtuais aumenta no campo da saúde; no entanto, poucos autores relatam os avanços e as dificuldades que enfrentaram ao usá-las. Realizamos um trabalho participativo em Guadalajara, México, usando tais redes. Implementamos quatro projetos sobre a doença renal: uma pesquisa, um canal no YouTube, um livro digital e uma página no Facebook. Acadêmicos, pacientes, familiares e associações participaram do processo. Obtivemos informações através da triangulação de métodos e análise de conteúdo. De acordo com nossos resultados, destaca-se a análise do panorama hispano-americano sobre esse tema, a difusão do trabalho colaborativo para a população e a diversidade de usos das redes sociais por indivíduos doentes. Concluímos que é necessário continuar esta linha de trabalho para expandir seu potencial no campo da saúde e através da colaboração de acadêmicos e outros atores sociais.
Assuntos
Humanos , Masculino , Feminino , Insuficiência Renal CrônicaRESUMO
OBJECTIVE: Describe the use of online social networks by people with chronic kidney disease, their caregivers, and family members, living in Hispanic American countries, and identify the most frequent topics and subtopics in their postings. METHODS: A qualitative study was conducted of postings by chronic kidney patients, their caregivers, and family members, living in Hispanic America, on five social networks: Blogger, Facebook, Twitter, WordPress, and YouTube, from 2010 to 2012. The internal search engines of each network were used with medical and lay terms in Spanish: chronic kidney disease, renal failure, peritoneal dialysis, hemodialysis, renal transplant, renal patient, nephropathy, and kidney patients association. An analysis was carried out of the thematic content of 1 846 postings on Facebook, Blogger, and WordPress. RESULTS: A total of 162 social network accounts were identified (97 individuals and 65 groups); the majority was in Mexico (46), with others in Argentina, Chile, Colombia, and Peru (44 accounts). The most frequent topics were exchange of information (46.0%), descriptions of experiences as patients (17.9%), support (15.6%), descriptions of experiences with health services (8.5%), interaction with peers (3.5%), and promotion of behavior change (3.4%). CONCLUSIONS: Chronic kidney patients living in Hispanic America use online social networks to inform and to be informed, describe their experiences with the disease and health services, and as a support mechanism. This produces knowledge that is different from and complementary to knowledge conveyed by health professionals. There is a pressing need to promote studies of the opportunities that these technologies offer in the Americas, a region characterized by enormous social inequality.
Assuntos
Cuidadores , Família , Internet/estatística & dados numéricos , Insuficiência Renal Crônica , Apoio Social , Humanos , América Latina , Fatores de TempoRESUMO
OBJETIVO: Describir la utilización de las redes sociales virtuales (RSV) por parte de personas con enfermedad renal crónica, sus cuidadores y familiares, residentes en países hispanoamericanos e identificar los temas y subtemas más frecuentes en sus publicaciones. MÉTODOS: Se realizó un estudio cualitativo de las publicaciones de los enfermos renales crónicos, sus cuidadores y familiares, residentes en Hispanoamérica en cinco redes sociales: Blogger, Facebook, Twitter, Wordpress y YouTube, entre 2010 y 2012. Se utilizaron los motores internos de cada red con términos médicos y legos: enfermedad renal crónica, insuficiencia renal, diálisis peritoneal, hemodiálisis, trasplante renal, enfermo renal, paciente renal, nefrópata y asociación de enfermos renales. Se realizó el análisis de contenido temático de 1 846 publicaciones de Facebook, Blogger y Wordpress. RESULTADOS: Se identificaron 162 cuentas (97 individuales y 65 colectivas); la mayoría se localizó en México (46) y en Argentina, Chile, Colombia y Perú (44 cuentas). Los temas más frecuentes fueron el intercambio de información (46,0%), el relato de vivencias como enfermo (17,9%), el apoyo (15,6%), los relatos sobre experiencias con los servicios de salud (8,5%), la interacción con pares (3,5%) y la promoción de cambios de conducta (3,4%). CONCLUSIONES: Los enfermos renales crónicos residentes en Hispanoamerica utilizan las RSV para informar e informarse, relatar sus vivencias con la enfermedad y los servicios de salud, y como mecanismo de apoyo. Esto genera conocimientos diferentes y complementarios a los aportados por los profesionales de la salud. Urge fomentar estudios sobre las posibilidades que brindan estas tecnologías en las Américas, región caracterizada por una enorme desigualdad social.
OBJECTIVE: Describe the use of online social networks by people with chronic kidney disease, their caregivers, and family members, living in Hispanic American countries, and identify the most frequent topics and subtopics in their postings. METHODS: A qualitative study was conducted of postings by chronic kidney patients, their caregivers, and family members, living in Hispanic America, on five social networks: Blogger, Facebook, Twitter, WordPress, and YouTube, from 2010 to 2012. The internal search engines of each network were used with medical and lay terms in Spanish: chronic kidney disease, renal failure, peritoneal dialysis, hemodialysis, renal transplant, renal patient, nephropathy, and kidney patients association. An analysis was carried out of the thematic content of 1 846 postings on Facebook, Blogger, and WordPress. RESULTS: A total of 162 social network accounts were identified (97 individuals and 65 groups); the majority was in Mexico (46), with others in Argentina, Chile, Colombia, and Peru (44 accounts). The most frequent topics were exchange of information (46.0%), descriptions of experiences as patients (17.9%), support (15.6%), descriptions of experiences with health services (8.5%), interaction with peers (3.5%), and promotion of behavior change (3.4%). CONCLUSIONS: Chronic kidney patients living in Hispanic America use online social networks to inform and to be informed, describe their experiences with the disease and health services, and as a support mechanism. This produces knowledge that is different from and complementary to knowledge conveyed by health professionals. There is a pressing need to promote studies of the opportunities that these technologies offer in the Americas, a region characterized by enormous social inequality.
