The Lived Experiences of Older Adults with Systemic Lupus Erythematosus: Patient Perspectives.

IF 3.6 2区 医学 Q2 RHEUMATOLOGY
Sarah B Lieber, Sarah R Young, Yvonne Shea, Sarah P Gottesman, Robyn Lipschultz, Dongmei Sun, M Carrington Reid, Lisa A Mandl, Iris Navarro-Millán
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Abstract

Objective: Little is known about perceptions of aging among individuals living with systemic lupus erythematosus (SLE). Gaining this knowledge could help to identify targets for future behavioral interventions aimed at successful aging with SLE. This qualitative study sought to elicit the lived experiences, and essence, of aging from older adults with SLE.

Methods: We conducted semi-structured interviews with adults ≥65 years of age with SLE seen at a single tertiary center. Qualitative data were analyzed thematically using a phenomenological approach. We collected data on sociodemographic characteristics and disease features prior to each qualitative interview.

Results: Among 30 participants with mean age of 71.3 years and mean SLE duration of 26.3 years (range 5 to 62 years), four overarching themes emerged to describe the essence of aging with SLE: SLE and comorbid conditions, cumulative impact of SLE symptoms, SLE disease trajectory, and self-perceptions of aging. Older adults with SLE shared variable aging experiences, including perspectives on multimorbidity and disease trajectory and self-perceptions of aging.

Conclusion: We identified both positive and negative self-perceptions of aging, often informed by participants' lived experiences of cumulative impact of SLE symptoms and SLE disease trajectory and underscoring the diversity of their experiences. Understanding self-perceptions of aging in this population could inform development of evidence-based strategies to empower older adults with SLE to harness their positivity and resilience and thus improve health-related outcomes, including health-related quality of life.

系统性红斑狼疮老年患者的生活经历:患者的视角。
目的:人们对系统性红斑狼疮(SLE)患者对衰老的看法知之甚少。获得这方面的知识有助于确定未来旨在帮助系统性红斑狼疮患者成功步入老年的行为干预目标。这项定性研究旨在从患有系统性红斑狼疮的老年人那里获得有关衰老的生活经验和本质:我们对在一家三级中心就诊的年龄≥65 岁的系统性红斑狼疮患者进行了半结构化访谈。我们采用现象学方法对定性数据进行了专题分析。我们在每次定性访谈前都收集了有关社会人口学特征和疾病特征的数据:30名参与者的平均年龄为71.3岁,平均系统性红斑狼疮病程为26.3年(5至62年不等)。在这些参与者中,我们发现了四个描述系统性红斑狼疮衰老本质的重要主题:系统性红斑狼疮和并发症、系统性红斑狼疮症状的累积影响、系统性红斑狼疮的疾病轨迹以及对衰老的自我认知。患有系统性红斑狼疮的老年人有着不同的衰老经历,包括对多病症和疾病轨迹的看法以及对衰老的自我认知:我们发现参与者对衰老既有积极的自我认知,也有消极的自我认知,这些认知往往来自于参与者对系统性红斑狼疮症状累积影响和系统性红斑狼疮疾病轨迹的生活经历,并强调了他们经历的多样性。了解这一人群对衰老的自我认知可以为制定循证策略提供参考,从而增强患有系统性红斑狼疮的老年人的能力,使他们能够利用自己的积极性和恢复力,从而改善与健康相关的结果,包括与健康相关的生活质量。
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来源期刊
Journal of Rheumatology
Journal of Rheumatology 医学-风湿病学
CiteScore
6.50
自引率
5.10%
发文量
285
审稿时长
1 months
期刊介绍: The Journal of Rheumatology is a monthly international serial edited by Earl D. Silverman. The Journal features research articles on clinical subjects from scientists working in rheumatology and related fields, as well as proceedings of meetings as supplements to regular issues. Highlights of our 41 years serving Rheumatology include: groundbreaking and provocative editorials such as "Inverting the Pyramid," renowned Pediatric Rheumatology, proceedings of OMERACT and the Canadian Rheumatology Association, Cochrane Musculoskeletal Reviews, and supplements on emerging therapies.
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