Arthritis Care Res (Hoboken). 2013 Nov;65(11):1752-65. doi: 10.1002/acr.22032.
Systemic lupus erythematosus (SLE) is a chronic inflammatory autoimmune disease that significantly impairs patients’ quality of life and can be life threatening. This study aimed to describe the experiences and perspectives of adults living with SLE.
We conducted a systematic review and thematic synthesis of qualitative studies that explored the experiences of adults living with SLE. We searched MEDLINE, Embase, PsycINFO, CINAHL (to November week 1, 2012), Google Scholar, a thesis database, and reference lists of relevant articles.
Forty-six studies involving 1,385 participants were included. Five themes were identified: restricted lifestyle(including subthemes of pervasive pain, debilitating fatigue, mental deterioration, disruptive episodic symptoms, and postponing parenthood), disrupted identity (gaining diagnostic closure, prognostic uncertainty, being a burden, hopelessness, heightened self-consciousness, fearing rejection, and guilt and punishment), societal stigma and indifference(illness trivialization, socially ostracized, and averse to differential treatment), gaining resilience (optimism, control and empowerment, being informed and involved, and valuing mutual understanding), and treatment adherence (preserving health, rapport with clinicians, negotiating medication regimens, and financial burden).
SLE has a severe and pervasive impact on patients’ self-esteem and independence. Their physical and social functioning is limited and they feel anxious about their future. Patients perceive that SLE is trivialized, misunderstood,and stigmatized by their family, friends, and physicians, which intensifies their sense of isolation. Educational, psychosocial, and self-care interventions are needed to promote mental resilience, positive coping strategies, self-advocacy, and capacities for social participation, and thereby to achieve better treatment and health outcomes in patients with SLE.
系统性红斑狼疮（SLE）是一种慢性炎症性自身免疫性疾病，严重影响患者的生活质量，并可能危及生命。本研究旨在描述成年 SLE 患者的经历和观点。
我们对探讨成年 SLE 患者经历的定性研究进行了系统评价和主题综合分析。我们检索了 MEDLINE、Embase、PsycINFO、CINAHL（截至 2012 年 11 月第 1 周）、Google Scholar、一个论文数据库和相关文章的参考文献列表。
纳入了 46 项研究，涉及 1385 名参与者。确定了 5 个主题：受限的生活方式（包括普遍疼痛、使人衰弱的疲劳、精神恶化、发作性症状中断和推迟生育）、身份中断（获得诊断性封闭、预后不确定、成为负担、无望、自我意识增强、害怕被拒绝、内疚和惩罚）、社会耻辱和冷漠（疾病被轻视、被社会排斥和厌恶差别对待）、获得韧性（乐观、控制和授权、知情和参与、重视相互理解）和治疗依从性（保持健康、与临床医生保持良好关系、协商药物治疗方案、经济负担）。
SLE 对患者的自尊和独立性产生严重而普遍的影响。他们的身体和社会功能受限，对未来感到焦虑。患者认为 SLE 被他们的家人、朋友和医生轻视、误解和污名化，这加剧了他们的孤立感。需要进行教育、心理社会和自我保健干预，以促进心理韧性、积极的应对策略、自我倡导和社会参与能力，从而改善 SLE 患者的治疗和健康结局。
