Christon Lillian M, Chandler Jessica, Benfield Katie, Pairet Samantha, Hoffman Maria, Treiber Frank, James W Ennis
Medical University of South Carolina (MUSC), College of Medicine, Department of Psychiatry & Behavioral Sciences.
MUSC, College of Nursing, Department of Nursing, Technology Applications Center for Healthful Lifestyles.
Fatigue. 2023;11(1):14-34. doi: 10.1080/21641846.2022.2154499. Epub 2022 Dec 7.
Sarcoidosis-associated fatigue is a debilitating consequence of sarcoidosis, a multi-system inflammatory disease, and may be related to increased stress associated with sarcoidosis. Breathing awareness meditation has potential as an intervention for managing stress and fatigue for sarcoidosis patients (SPs). This project's aim was to obtain feedback from key informants to design and tailor a patient-centered (SPARC) mHealth App developed for SPs to manage fatigue and stress at home using breathing awareness meditation.
We used a mixed-method patient/user-centered design with triangulation to understand SPs experiences of sarcoidosis-associated fatigue and stress ( 13), and obtain feedback on the SPARC App-prototype integrating breathing awareness meditation from these SPs and health care team members (HCTMs; = 5). Using deductive content analysis, transcribed interviews were coded for themes and subthemes.
We report on findings from qualitative interviews and assessment of SPs' experiences including themes describing fatigue/stress interactions. Themes indicated that SPs find fatigue to be a profoundly difficult experience affecting multiple domains of functioning for which they perceive few effective strategies to cope. SPs and HCTMs shared feedback on the SPARC App-prototype after a test session; it was reported to be user friendly and to have potential for improving fatigue/stress, and key points for tailoring the App to SPs were shared.
Sarcoidosis-associated fatigue poses a significant burden for SPs. The SPARC App-prototype with breathing awareness meditation was acceptable and feasible to use and was well-received by SPs and HCTMs. Future iterations of the SPARC App to test the effect of breathing awareness meditation on fatigue will need to incorporate recommendations for tailoring for SPs.
结节病相关疲劳是结节病（一种多系统炎症性疾病）的一种使人衰弱的后果，可能与结节病相关的压力增加有关。呼吸觉察冥想有潜力作为一种干预措施，用于管理结节病患者（SPs）的压力和疲劳。本项目的目的是从关键信息提供者那里获得反馈，以设计和定制一款以患者为中心的（SPARC）移动健康应用程序，该应用程序为结节病患者开发，用于在家中通过呼吸觉察冥想管理疲劳和压力。
我们采用了以患者/用户为中心的混合方法设计，并进行三角验证，以了解结节病患者与疲劳和压力相关的经历（13例），并从这些患者和医疗团队成员（HCTMs；n = 5）那里获得关于整合了呼吸觉察冥想的SPARC应用程序原型的反馈。使用演绎性内容分析法，对转录的访谈进行主题和子主题编码。
我们报告了定性访谈的结果以及对结节病患者经历的评估，包括描述疲劳/压力相互作用的主题。主题表明，结节病患者发现疲劳是一种极其困难的经历，影响到多个功能领域，他们认为应对的有效策略很少。在一次测试 session 后，结节病患者和医疗团队成员分享了对SPARC应用程序原型的反馈；据报告该应用程序用户友好，有改善疲劳/压力的潜力，并分享了针对结节病患者定制该应用程序的关键点。
结节病相关疲劳给结节病患者带来了重大负担。带有呼吸觉察冥想的SPARC应用程序原型使用起来是可接受且可行的，并且受到了结节病患者和医疗团队成员的好评。SPARC应用程序未来的迭代版本，以测试呼吸觉察冥想对疲劳的影响，将需要纳入针对结节病患者定制的建议。
