"Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study
"Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study
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DOI：
10.1136/ard.2005.037077
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发表时间：
2006-05-01
影响因子：
27.4
通讯作者：
Kitas, GD
中科院分区：
文献类型：
--
作者：
Hale, ED;Treharne, GJ;Kitas, GD
目的：检查系统性红斑狼疮（SLE）患者的看法，他们的医疗保健提供在UnitedKingdom.Methods：半结构式访谈进行了10名妇女，年龄在26至68岁，被诊断为SLE 1至12年前。访谈录音，逐字转录，并使用解释现象学分析组织的重要性，以participator.Results的主题进行分析：出现了四个主题：诊断困难;理解;沟通;和综合保健。在诊断之前，人们担心自己是否真的生病了，并需要为这种情况贴上标签。诊断后，参与者仍然遇到卫生保健专业人员谁是不了解SLE。家人、朋友和雇主不了解SLE的波动性，这往往导致孤立。参与者认为，即使是专门从事SLE的医疗保健专业人员也不能完全理解这种疾病的心理社会影响，因此没有提供满足这些需求的信息。参与者不知道他们接触过的许多医疗保健专业人员中的哪一个来解决他们的问题。缺乏跨学科水平的沟通，让他们觉得没有人“加入点”为他们的healthcare.Conclusions：SLE患者不觉得理解的医疗保健提供者或接近他们的人。来自训练有素的SLE志愿者的支持，如在达德利（英国西米德兰兹郡）的开放式狼疮诊所提供的支持，将确保从有个人经验的人那里获得更充分的信息。这些服务可以改善沟通，并有助于减少SLE患者的孤立。
Objectives: To examine the perceptions of patients with systemic lupus erythematosus (SLE) about their health care provision in the United Kingdom.Methods: Semistructured interviews were conducted with 10 women aged 26 to 68 years who were diagnosed with SLE one to 12 years earlier. Interviews were audio recorded, transcribed verbatim, and analysed using interpretative phenomenological analysis to organise the themes of importance to participants.Results: Four themes emerged: diagnostic difficulties; understanding; communication; and integrated health care. Before diagnosis there was concern to appear legitimately ill and to have a label for the condition. After diagnosis participants still encountered health care professionals who were poorly informed about SLE. Family, friends, and employers did not understand the fluctuating nature of SLE, which often led to isolation. Participants felt that even health care professionals who specialised in SLE could not fully understand the psychosocial impact of the condition, and therefore did not provide information to meet those needs. Participants did not know which of the many health care professionals they had contact with to approach about their concerns. Lack of communication at an interdisciplinary level left them feeling that nobody was "joining the dots'' for their health care.Conclusions: Patients with SLE do not feel understood by health care providers or people close to them. Support from trained volunteers with SLE, as available at the open access lupus clinic in Dudley ( West Midlands, UK), would ensure more adequate information from someone with personal experience. Such services may improve communication and help minimise SLE patients' isolation.