Fair Betty Samford
University of Texas Health Science Center at Houston, School of Nursing, 1100 Holcombe Boulevard, Houston, TX 77030, USA.
J Nurs Scholarsh. 2003;35(4):339-44. doi: 10.1111/j.1547-5069.2003.00339.x.
To investigate explanations of rheumatoid arthritis (RA) from young women's perceptions of the illness experience and providers' understanding of the disease.
This ethnographic study included 17 women from age 26 to 40 years who were under medical care for RA, and five health care providers of these participants.
Two main themes were identified: (a) having RA "is a pain" and (b) it changed me. The first theme represented the participants' physical and emotional suffering, interferences in their everyday lives, and aggravations in receiving health care. The second theme represented the life and lifestyle changes the women experienced as a result of having RA. The providers' explanations included two themes: (a) functioning in a normal manner and (b) controlling the disease. The first theme was keeping the women's physical functioning as normal as possible. The second theme was the providers' goal to control the disease, which they believed would lead to the preservation of joint function and manageable pain levels. Regarding results of health care, the participants and providers had comparable beliefs about decreasing the physical pain and improving joint function but they had disparate notions about the participants' being active partners in communication and negotiation processes of their health care.
The findings indicated the importance of discovering potential disparities in patients' and providers' explanations of RA, and revealed the participants' desire for clinical support in becoming partners in their own health care.
从年轻女性对疾病经历的认知以及医疗服务提供者对疾病的理解方面，探究类风湿性关节炎（RA）的相关解释。
这项人种学研究纳入了17名年龄在26至40岁之间、正在接受RA治疗的女性，以及这些参与者的5名医疗服务提供者。
确定了两个主要主题：（a）患RA“很痛苦”，以及（b）它改变了我。第一个主题代表了参与者的身体和情感痛苦、对其日常生活的干扰以及接受医疗保健时的加重情况。第二个主题代表了这些女性因患RA而经历的生活和生活方式的变化。医疗服务提供者的解释包括两个主题：（a）正常运作，以及（b）控制疾病。第一个主题是使女性的身体功能尽可能保持正常。第二个主题是医疗服务提供者控制疾病的目标，他们认为这将有助于保护关节功能并使疼痛程度可控。关于医疗保健的结果，参与者和医疗服务提供者在减轻身体疼痛和改善关节功能方面有类似的信念，但在参与者成为其医疗保健沟通和协商过程中的积极伙伴这一点上，他们有不同的观念。
研究结果表明，发现患者和医疗服务提供者对RA解释中的潜在差异很重要，并揭示了参与者渴望在成为自身医疗保健伙伴方面获得临床支持。
