Institute of Higher Education and Research in Healthcare, University of Lausanne, Lausanne, Switzerland
Geneva University Hospitals, Geneva, Switzerland.
BMJ Open. 2023 May 12;13(5):e068340. doi: 10.1136/bmjopen-2022-068340.
Chronic obstructive pulmonary disease (COPD) is responsible for 2.9 million deaths annually in Europe. Symptom burden and functional decline rise as patients reach advanced stages of the disease enhancing risk of vulnerability and dependency on informal caregivers (ICs).Evidence shows that hope is an important psycho-social-spiritual construct that humans use to cope with symptom burden and adversity. Hope is associated with increased quality of life (QoL) comfort and well-being for patients and ICs. A better understanding of the meaning and experience of hope over time as patients transition through chronic illness may help healthcare professionals to plan and deliver care more appropriately.
This is a longitudinal multicentre mixed-methods study with a convergent design. Quantitative and qualitative data will be collected from dyads of advanced COPD patients and their ICs in two university hospitals at two points in time. The Herth Hope Index, WHO Quality of Life BREF, Functional Assessment of Chronic Illness Therapy-Spiritual Well-being and the French version of the Edmonton Symptom Assessment Scale will be used to collect data. Dyadic interviews will be conducted using a semi-structured interview guide with five questions about hope and their relationship with QoL.Statistical analysis of data will be carried out using R V.4.1.0. To test whether our theoretical model as a whole is supported by the data, structural equation modelling will be used. The comparison between T1 and T2 for level of hope, symptom burden, QoL and spiritual well-being, will be carried out using paired t-tests. The association between symptom burden, QoL, spiritual well-being and hope will be tested using Pearson correlation.
This study protocol received ethical approval on 24 May 2022 from the Canton of Vaud. The identification number is 2021-02477.
慢性阻塞性肺疾病（COPD）在欧洲每年导致 290 万人死亡。随着患者进入疾病的晚期，症状负担和功能下降，增加了脆弱性和对非正规护理者（ICs）的依赖的风险。有证据表明，希望是人类用来应对症状负担和逆境的一个重要的心理-社会-精神结构。希望与患者和 ICs 的生活质量（QoL）舒适度和幸福感的提高有关。随着患者在慢性疾病中过渡，更好地了解希望的意义和体验随时间的变化，可能有助于医疗保健专业人员更恰当地规划和提供护理。
这是一项具有收敛设计的纵向多中心混合方法研究。将在两个时间点从两所大学医院的一对晚期 COPD 患者及其 IC 中收集定量和定性数据。将使用 Herth 希望指数、世界卫生组织生活质量简表、慢性病治疗功能评估-精神幸福感和法语版埃德蒙顿症状评估量表来收集数据。使用半结构化访谈指南，对希望及其与 QoL 的关系进行五次访谈，以进行联合访谈。将使用 R V.4.1.0 对数据进行统计分析。为了测试我们的理论模型是否被数据所支持，将使用结构方程模型。使用配对 t 检验比较 T1 和 T2 时的希望、症状负担、QoL 和精神幸福感的水平。使用 Pearson 相关性测试症状负担、QoL、精神幸福感和希望之间的关系。
该研究方案于 2022 年 5 月 24 日获得沃州的伦理批准。识别号为 2021-02477。
