Department of Dermatology, Imperial College Healthcare NHS Trust, London, UK.
Storytellers and Filmmakers, London, UK.
Clin Exp Dermatol. 2021 Jul;46(5):888-895. doi: 10.1111/ced.14594. Epub 2021 Mar 19.
Psoriasis is a long-term skin condition associated with considerable life impairment. Extensive literature regarding the needs of patients with psoriasis is not translated into clinical practice.
To explore and communicate the experience of living with psoriasis and interacting with healthcare professionals (HCPs).
In total, 21 patients attending a tertiary adult psoriasis service were interviewed individually. Interviews were recorded and transcribed, then the transcripts were examined and thematic analyses and qualitative content analysis performed. The results were communicated via a short film.
Three key themes were identified: comparison with cancer, misalignment of response with need and fear of social exclusion. Cancer comparison subthemes included poorer services, lack of awareness and trivialization of psoriasis compared with cancer. Misalignment subthemes related to lack of knowledge and inappropriate response of HCPs and society towards psoriasis. Fear of social exclusion subthemes included erroneous belief of psoriasis being contagious and the expectation of rejection. Consequent emotions of fear, shame and anxiety resulted in avoidant behaviours, which perpetuated social exclusion. Participants valued active listening, shared decision-making and communication of hope regarding treatment by HCPs.
Despite extensive research into psoriasis and the availability of effective treatment for many patients, people with psoriasis live unnecessarily impaired lives and have unsatisfactory healthcare experiences. Storytelling techniques provide a method to communicate scientific information in a way that may drive change in delivery of healthcare and improve the lives of patients.
银屑病是一种长期的皮肤疾病，会导致相当大的生活障碍。大量关于银屑病患者需求的文献并没有转化为临床实践。
探索和交流患有银屑病的生活体验以及与医疗保健专业人员（HCP）的互动。
共有 21 名在三级成人银屑病门诊就诊的患者接受了单独访谈。访谈进行了录音和转录，然后对转录本进行了检查和主题分析以及定性内容分析。结果通过短片进行了传达。
确定了三个关键主题：与癌症的比较、反应与需求的不匹配以及对社会排斥的恐惧。癌症比较子主题包括服务较差、缺乏对银屑病的认识以及对其的轻视，与癌症相比。不匹配的子主题涉及 HCP 和社会对银屑病的知识不足和不当反应。对社会排斥的恐惧子主题包括错误地认为银屑病具有传染性以及对拒绝的期望。由此产生的恐惧、羞耻和焦虑情绪导致了回避行为，从而加剧了社会排斥。参与者重视 HCP 的积极倾听、共同决策和治疗希望的沟通。
尽管对银屑病进行了广泛的研究，并且许多患者都有有效的治疗方法，但银屑病患者的生活仍受到不必要的影响，医疗体验也不尽如人意。叙事技巧提供了一种传达科学信息的方法，可能会推动医疗保健服务的改变，改善患者的生活。
