Herrera Andrea, Leiva Loreto, Espinoza Iris, Ríos-Erazo Matías, Shakhtur Nailah, Wurmann Pamela, Rojas-Alcayaga Gonzalo
Behavioral Science Area, Institute for Research in Dental Science, Faculty of Dentistry, Universidad de Chile, Santiago 8380544, Chile.
Department of Psychology, Faculty of Social Sciences, Universidad de Chile, Santiago 7800284, Chile.
J Clin Med. 2024 May 30;13(11):3228. doi: 10.3390/jcm13113228.
: Sjögren's Syndrome (SS) is a chronic degenerative rheumatic disease. Because of its chronic nature, it significantly affects the quality of life of those who suffer from it. : This qualitative study investigated disease experience among women suffering from SS to understand its impact on their overall well-being. In-depth interviews were conducted with 15 women who suffer from SS. Interviews were analyzed using the Grounded Theory methodology, using open, axial, and selective coding. : Three central phenomena of disease experience were identified: invisibility; uncontrollability; and unpredictability. : SS disease experience has a strong imprint on emotional well-being and sense of self-control among middle-aged women. Understanding SS impacts on women's lives is important to better understand the disease and contribute to recognizing potential areas of management and social support in relevant windows of opportunity within the health-disease continuum.
干燥综合征（SS）是一种慢性退行性风湿性疾病。由于其慢性性质，它严重影响患者的生活质量。：这项定性研究调查了干燥综合征女性患者的疾病体验，以了解其对她们整体幸福感的影响。对15名干燥综合征女性患者进行了深入访谈。使用扎根理论方法，通过开放式、轴心式和选择性编码对访谈进行分析。：确定了疾病体验的三个核心现象：不可见性；不可控性；以及不可预测性。：干燥综合征的疾病体验对中年女性的情绪幸福感和自我控制感有强烈影响。了解干燥综合征对女性生活的影响对于更好地理解该疾病以及在健康 - 疾病连续体的相关机会窗口中识别潜在的管理和社会支持领域具有重要意义。
