Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study

Background
Systemic sclerosis, or scleroderma, is a chronic and rare connective tissue disease with negative physical and psychological implications. Sources of emotional distress and the impact they have on the lives of people with scleroderma are not well understood.
Objectives
To gain an in-depth understanding of the emotional experiences and sources of emotional distress for women and men living with scleroderma through focus group discussions.
Methods
Three semi-structured focus group discussions were conducted (two in English, one in French) with a total of 22 people with scleroderma recruited through the Scleroderma Society of Ontario in Hamilton, Ontario and a scleroderma clinic in Montreal, Canada. Interviews were recorded, transcribed, and then coded for emerging themes using thematic inductive analysis.
Results
Core themes representing sources of emotional distress were identified, including: (a) facing a new reality; (b) the daily struggle of living with scleroderma; (c) handling work, employment and general financial burden; (d) changing family roles; (e) social interactions; and (f) navigating the health care system. Collectively, these themes refer to the stressful journey of living with scleroderma including the obstacles faced and the emotional experiences beginning prior to receiving a diagnosis and continuing throughout the participants’ lives.
Conclusion
Scleroderma was portrayed as being an unpredictable and overwhelming disease, resulting in many individuals experiencing multiple sources of emotional distress. Interventions and supportive resources need to be developed to help individuals with scleroderma and people close to them manage and cope with the emotional aspects of the disease.

背景：系统性硬化症（Systemic sclerosis，又称硬皮病（scleroderma））是一种慢性罕见结缔组织疾病，会对患者的生理与心理健康造成负面影响。目前学界对于硬皮病患者的情绪困扰来源及其对患者生活的影响尚未得到充分了解。

研究目标：通过焦点小组讨论，深入了解硬皮病患者（无论男女）的情绪体验与情绪困扰来源。

研究方法：本研究通过加拿大安大略省汉密尔顿市的安大略省硬皮病协会，以及加拿大蒙特利尔的一家硬皮病专科门诊，共招募22名硬皮病患者，开展3场半结构化焦点小组讨论（其中2场以英语开展，1场以法语开展）。所有讨论均进行录音与转录，并采用归纳式主题分析法对转录文本进行编码，以提炼新兴主题。

研究结果：本研究识别出代表情绪困扰来源的核心主题，具体包括：(a) 直面全新的生活现实；(b) 罹患硬皮病后的日常抗争；(c) 应对工作、就业与整体经济负担；(d) 家庭角色的转变；(e) 社交互动；(f) 适配医疗保健体系。上述主题共同勾勒出硬皮病患者充满压力的患病历程，涵盖了确诊前便已出现的各类困境与情绪体验，且这一历程贯穿患者的整个人生。

研究结论：参与者将硬皮病描述为一种难以预测且极具压迫感的疾病，导致众多患者承受多维度的情绪困扰。亟需开发相关干预手段与支持资源，以帮助硬皮病患者及其亲友应对与调适该疾病带来的情绪层面问题。