Escudero-Carretero María José, García-Toyos Noelia, Prieto-Rodríguez María Ángeles, Pérez-Corral Olivia, March-Cerdá Joan Carles, López-Doblas Manuela
Escuela Andaluza de Salud Pública, Campus Universitario de Cartuja, Granada, España.
Reumatol Clin. 2010 Jan-Feb;6(1):16-22. doi: 10.1016/j.reuma.2009.04.008. Epub 2009 Sep 13.
To know the experiences and expectations of persons with fibromyalgia towards the health system and its professionals.
Qualitative study with three focal groups. The first focal group included patients with fibromyalgia, 20 women and 1 man, receiving care in the public health system, with different assistance paths and progression. Informed Consent was required. Content analysis was done.
Patients describe a difficult experience, with symptoms that may involve incapacity for daily activities. Until knowing their diagnosis, they feel a lack of understanding and also loneliness. They develop different coping strategies, as looking for information or association. From the health system they expect: attention and a fast diagnosis, accessibility to consultations, medical exams and therapies or an impulse for research. They want trained professionals, proactive attitudes, interest, empathy and information.
Qualitative methods seem suitable for delving into patient experience. Health assistance must improve patients' quality of life, facilitating their assistance process and offering companionship, interest, comprehension and support.
了解纤维肌痛患者对卫生系统及其专业人员的体验和期望。
采用三个焦点小组进行定性研究。第一个焦点小组包括在公共卫生系统接受护理的纤维肌痛患者，20名女性和1名男性，他们有着不同的就医途径和病程。研究需要获得知情同意。进行了内容分析。
患者描述了一段艰难的经历，其症状可能包括无法进行日常活动。在得知诊断之前，他们感到不被理解且孤独。他们制定了不同的应对策略，如寻找信息或加入相关团体。他们对卫生系统的期望是：得到关注并快速诊断、能够方便地获得会诊、医学检查和治疗，或者得到研究方面的推动。他们希望有训练有素的专业人员、积极主动的态度、关心、同理心和信息。
定性方法似乎适合深入探究患者的体验。卫生援助必须改善患者的生活质量，便利他们的就医过程，并给予陪伴、关心、理解和支持。
