Dermatology Research Centre, Institute Inflammation and Repair, The University of Manchester, Manchester, Academic Health Science Centre, Manchester, UK.
Br J Dermatol. 2013 Feb;168(2):354-61. doi: 10.1111/j.1365-2133.2012.11217.x. Epub 2012 Nov 2.
Psoriasis is a life-long inflammatory condition that can impact on quality of life, psychological and social functioning. Previous literature suggests patient dissatisfaction with psoriasis management; however, little is known about people's specific experiences of health care consultations.
The study aimed to explore in depth the perspectives of people living with psoriasis including coping responses, self-care strategies and how consultations with health care professionals in both primary and secondary care are experienced.
Qualitative semistructured interviews were carried out with a diverse sample of 29 people with psoriasis generated purposively and recruited from community sources in North West England. Interviews were coded using Framework Analysis to produce a thematic framework incorporating key emerging issues and concepts.
Participants experienced psoriasis as a complex condition involving physical, psychological and social challenges, as well as issues of control, but perceived that these were largely unacknowledged by practitioners in health care consultations. Practitioners were perceived as lacking knowledge and expertise in the management of psoriasis, lacking empathy with the effects of psoriasis and failing to manage it as a long-term condition. This perceived lack of support resulted in some participants withdrawing from conventional health service providers and seeking alternative sources of help.
Psoriasis needs to be recognized and managed as a complex long-term condition with emotional and social needs that are addressed alongside appropriate diagnosis and regular reviews of treatments which may involve referrals to specialist care.
银屑病是一种终身炎症性疾病,会影响生活质量、心理和社会功能。既往文献提示患者对银屑病管理不满意;然而,人们对医疗保健咨询的具体体验知之甚少。
本研究旨在深入探讨银屑病患者的观点,包括应对方式、自我护理策略以及他们在初级和二级保健中与医疗保健专业人员的咨询体验。
采用半结构式定性访谈,对来自英格兰西北部社区来源的 29 名银屑病患者进行了有目的的多样化样本访谈。使用框架分析对访谈进行编码,生成一个主题框架,纳入关键的新兴问题和概念。
参与者将银屑病视为一种复杂的疾病,涉及身体、心理和社会挑战,以及控制问题,但他们认为这些问题在医疗保健咨询中基本上未得到医生的认可。医生被认为缺乏管理银屑病的知识和专业技能,缺乏对银屑病影响的同理心,未能将其作为一种长期疾病进行管理。这种被感知到的缺乏支持导致一些参与者不再寻求传统的医疗服务提供者,转而寻求其他来源的帮助。
银屑病需要被视为一种复杂的长期疾病,其需要兼顾适当的诊断和定期对治疗方案的评估与回顾,以管理疾病,同时还需要满足患者的情感和社会需求,而这些可能需要将患者转诊到专科护理。