Facultad de Ciencias Sociales, Instituto de Sociología, Programa de Antropología, Pontificia Universidad Católica de Chile, Av. Vicuña Mackena 4860, Santiago, Chile.
Facultad de Medicina, Escuela de Medicina, Departamento de Inmunologìa Clìnica y Reumatologìa, Pontificia Universidad Católica de Chile, Av. Diagonal Paraguay 362, Santiago, Chile.
Clin Rheumatol. 2017 Dec;36(12):2789-2797. doi: 10.1007/s10067-017-3866-4. Epub 2017 Nov 2.
Health education is fundamental in the management of RA patients. This study explored patient needs for educational material appropriate for RA patients in our region through a website. This study includes seven focus groups and semi-structured interviews across 4 countries (Argentina, Chile, Colombia, and Mexico) with 71 RA patients. Transcripts were analyzed by anthropologists using qualitative analysis (QA), resulting in themes and subthemes to be developed. Five themes and over 50 subthemes of interest were identified by patients. Grouped into categories as follows: (1) knowing the disease, (2) living with arthritis, (3) treatment and therapies for RA, (4) psychosocial support, and (5) information for families. A response was written by the team in plain Spanish on patient subthemes of interest including additional areas that the team considered relevant. Three videos for YouTube were produced: on patient-doctor relationships, patients at work, and home and at the clinic. Illustrations in a comic book format on RA diagnosis were created. The educational site on RA of PANLAR can be found at htpp://artritisreumatoide.cl. This project accomplished a comprehensive list of RA patient interests, revealing the complex relationship between the information on the disease, the experience of a chronic disease, and the way in which patients approach, conceive, and manage their disease. We expect to gather information on how the website will be used in the future for patients and their families and maintain and improve the website as well as adapt its content to different socioeconomic realities.
健康教育在 RA 患者的管理中至关重要。本研究通过网站探讨了我们地区 RA 患者对适合他们的教育材料的需求。本研究包括在 4 个国家(阿根廷、智利、哥伦比亚和墨西哥)进行的 7 个焦点小组和半结构化访谈,共 71 名 RA 患者参与。人类学家使用定性分析(QA)对转录本进行分析,得出主题和子主题。患者确定了 5 个主题和 50 多个相关子主题。分为以下几类:(1)了解疾病,(2)与关节炎共存,(3)RA 的治疗和疗法,(4)心理社会支持,(5)为家庭提供信息。团队以西班牙语为患者感兴趣的子主题撰写了回复,包括团队认为相关的其他领域。制作了三个 YouTube 视频:关于医患关系、工作中的患者以及家庭和诊所。还创作了关于 RA 诊断的漫画书格式插图。PANLAR 的 RA 教育网站可在 htpp://artritisreumatoide.cl 找到。该项目完成了一份全面的 RA 患者兴趣清单,揭示了疾病信息、慢性病经历以及患者对待、理解和管理疾病的方式之间的复杂关系。我们希望收集有关该网站未来将如何供患者及其家属使用的信息,并维护和改进该网站,以及根据不同的社会经济现实调整其内容。