Lady Davis Institute for Medical Research, Jewish General Hospital , Montréal , Canada.
Department of Educational and Counselling Psychology, McGill University , Montréal , Canada.
Disabil Rehabil. 2019 Oct;41(21):2506-2515. doi: 10.1080/09638288.2018.1470263. Epub 2018 May 9.
The purpose of this study was to explore challenges faced by patients with systemic sclerosis, also called scleroderma, in coping with their disease and the strategies they used to face those challenges. Five focus groups were held with scleroderma patients (4 groups, = 34) and health care professionals who have experience treating scleroderma (1 group, = 8). Participants' discussions were recorded, transcribed and analyzed using thematic analysis. Participants reported challenges accessing information (e.g., knowledgeable specialists), dealing with negative emotions (e.g., stress due to misunderstandings with loved ones), and accessing resources (e.g., helpful products or devices). Strategies for overcoming challenges were also discussed (e.g., advocating for own needs). When faced with significant challenges while coping with scleroderma, patients develop strategies to manage better and improve their quality of life. To help them cope, patients would benefit from easier access to supportive interventions, including tailored scleroderma self-management programs. Although the challenges experienced by patients with scleroderma are unique, findings from this study might help better understand patients' perspectives regarding coping and disease management for other chronic diseases as well. Implications for Rehabilitation People living with rare diseases, including the rare autoimmune disease scleroderma, face unique challenges and often do not have access to disease-specific educational or other support resources. People with scleroderma report that they face challenges in accessing information, including knowledgeable healthcare providers; managing difficult social interactions and negative emotions; and accessing resources. Strategies employed by scleroderma patients to overcome these challenges include seeking connections to other people with scleroderma or scleroderma patient organizations, actively seeking out local resources, and learning to communicate and advocate more effectively. Rehabilitation professionals can support people with scleroderma by providing them with information on connecting with scleroderma patient organizations or by facilitating local patient support networks.
本研究旨在探讨系统性硬化症（也称为硬皮病）患者在应对疾病时所面临的挑战，以及他们应对这些挑战所采用的策略。我们共开展了 5 组焦点小组访谈，参与者分别为硬皮病患者（4 组，共 34 人）和有治疗硬皮病经验的医疗保健专业人员（1 组，共 8 人）。我们对参与者的讨论内容进行了录音、转录和主题分析。参与者报告了在获取信息（如了解病情的专家）、应对负面情绪（如因与亲人之间的误解而产生的压力）和获取资源（如有用的产品或设备）方面所面临的挑战。此外，他们还讨论了克服挑战的策略（如为自身需求发声）。当患者在应对硬皮病时面临重大挑战时，他们会制定策略来更好地应对并改善生活质量。为了帮助他们应对挑战，患者将受益于更容易获得支持性干预措施，包括针对硬皮病的个体化自我管理项目。虽然硬皮病患者所面临的挑战具有独特性，但本研究的结果可能有助于更好地理解患者在应对和疾病管理方面的观点，进而适用于其他慢性疾病。
康复意义 患有罕见病的人群，包括罕见的自身免疫性疾病硬皮病患者，面临着独特的挑战，并且往往无法获得特定于疾病的教育或其他支持资源。硬皮病患者报告称，他们在获取信息方面面临挑战，包括了解病情的医疗保健提供者；在管理困难的社交互动和负面情绪方面存在困难；以及在获取资源方面存在困难。硬皮病患者克服这些挑战所采用的策略包括与其他硬皮病患者或硬皮病患者组织建立联系，积极寻找当地资源，以及学习更有效地沟通和倡导。康复专业人员可以通过为患者提供与硬皮病患者组织建立联系的信息，或促进当地患者支持网络，来为硬皮病患者提供支持。
