Kocher Agnes, Adler Sabine, Spichiger Elisabeth
Department of Rheumatology, Clinical Immunology and Allergology, Inselspital, Bern University Hospital, Switzerland.
Musculoskeletal Care. 2013 Sep;11(3):168-78. doi: 10.1002/msc.1051. Epub 2013 Mar 27.
Skin and mucosal manifestations such as skin thickening, pruritus, reduced microvascular circulation, digital lesions, appearance-related changes, and dryness of the eyes and mucosa are common in systemic sclerosis (SSc). A specific skin and mucosa care education programme for patients and their family caregivers should increase their self-efficacy and improve coping strategies.
The aims of this qualitative study were to explore the participants' experiences of both everyday life with skin and mucosal manifestations and the programme itself, while identifying unmet needs for programme development.
Narrative interviews were conducted with eight SSc patients and two family caregivers of individuals with SSc. Using qualitative content analysis techniques, the transcribed interviews were systematically summarized and categories inductively developed.
The findings illustrated participants' experiences of skin and mucosal symptoms and revealed them to be experts in finding the right therapy mix alone (before diagnosis) and also in collaboration with health professionals (after diagnosis). Participants emphasized that the programme gave them useful education on skin and mucosa care. They described how they had to cope alone with the lack of information on pathophysiology, people's reactions, and the impact on their family and working lives. Nevertheless, participants said that they maintained a positive attitude by not dwelling on future disabilities.
Patients and family caregivers benefited from the individualized and SSc-specific education on skin and mucosa care. Future improvements to the programme should focus on imparting understandable information on SSc pathophysiology, dealing with disfigurement and seeking reliable disease information, as well as facilitating peer support.
皮肤增厚、瘙痒、微血管循环减少、指端病变、外观改变以及眼干和黏膜干燥等皮肤和黏膜表现，在系统性硬化症（SSc）中很常见。为患者及其家庭护理人员开展特定的皮肤和黏膜护理教育项目，应能提高他们的自我效能感并改善应对策略。
这项定性研究的目的是探索参与者在日常生活中出现皮肤和黏膜表现的经历以及对该项目本身的体验，同时确定项目开发中未满足的需求。
对8名系统性硬化症患者和2名系统性硬化症患者的家庭护理人员进行了叙事访谈。运用定性内容分析技术，对转录的访谈内容进行系统总结，并归纳出类别。
研究结果阐述了参与者皮肤和黏膜症状的经历，并表明他们在单独（诊断前）以及与医护人员合作（诊断后）寻找合适治疗组合方面是专家。参与者强调该项目为他们提供了有关皮肤和黏膜护理的有用教育。他们描述了自己如何不得不独自应对关于病理生理学、他人反应以及对家庭和工作生活影响方面信息的匮乏。尽管如此，参与者表示他们通过不纠结于未来的残疾而保持积极的态度。
患者和家庭护理人员从针对皮肤和黏膜护理的个性化且特定于系统性硬化症的教育中受益。该项目未来的改进应侧重于传授关于系统性硬化症病理生理学的易懂信息、应对毁容问题以及获取可靠的疾病信息，同时促进同伴支持。
