Mendelson Cindy
University of New Mexico College of Nursing, Albuquerque, USA.
Qual Health Res. 2006 Sep;16(7):982-97. doi: 10.1177/1049732306290132.
Systemic lupus erythematosus is a systemic autoimmune illness that affects women more frequently than men and disproportionately affects women of color. Because so little is known about living with lupus, the author undertook a qualitative study to identify salient aspects of affected women's daily experiences. Seven women with lupus participated in three interviews, each separated by 1 month, and they also maintained a daily symptom journal. In addition, 23 women recruited from the Internet submitted narrative accounts of their experiences of living with lupus. Analysis of the findings suggests that living with lupus involves managing a medically and socially complex life. The complexity of life with lupus is dimensionalized by the overlapping themes, identified as a life of uncertainty, a shifting sense of identity, and managing the financial burden of illness.
系统性红斑狼疮是一种全身性自身免疫性疾病，女性比男性更易患病，且对有色人种女性的影响尤为严重。由于对狼疮患者的生活了解甚少，作者开展了一项定性研究，以确定受影响女性日常经历的显著方面。七名狼疮患者参与了三次访谈，每次访谈间隔1个月，她们还记录了每日症状日志。此外，从网上招募的23名女性提交了她们患狼疮的生活经历叙述。对研究结果的分析表明，患狼疮意味着要应对医疗和社会层面都很复杂的生活。狼疮患者生活的复杂性体现在一些相互重叠的主题上，包括不确定的生活、不断变化的身份感以及应对疾病的经济负担。
