背景：慢性阻塞性肺疾病是一种常反复发生急性加重的慢性气道疾病，国内外指南推荐将呼吸康复作为慢阻肺稳定期管理的重要内容。与在医疗机构开展的呼吸康复相比，家庭呼吸康复在可及性方面更具优势，但也面临着缺乏监督、依从性不佳等问题。现有研究表明让家属参与到呼吸康复中有利于提高慢阻肺患者的康复依从性，促进患者获益，但目前尚缺乏慢性阻塞性肺疾病患者家属参与式呼吸康复方案。

目的：本研究旨在构建慢阻肺患者家属参与式呼吸康复方案，并对方案的可行性和有效性进行初步验证。

方法：基于循证的方法，完成对慢阻肺患者家庭呼吸康复相关指南、系统评价和专家共识的检索、筛选和质量评价，总结慢阻肺患者家庭呼吸康复护理的最佳证据。通过文献分析法，明确家属在呼吸康复中承担的任务，结合慢阻肺患者家庭呼吸康复护理的最佳证据，形成初步的慢阻肺患者家属参与式呼吸康复方案，邀请4名呼吸科专家对方案进行修订并结合患者意见对方案进行完善，形成最终的慢阻肺患者家属参与式呼吸康复方案。选取稳定期慢阻肺患者开展为期8周的家属参与式呼吸康复，并在干预后对6例患者和4名家属进行半结构化访谈，深入了解患者和家属在接受家属参与式呼吸康复过程中的体验和收获。通过比较干预前后相关结局指标的变化，结合访谈结果，对家属参与式呼吸康复方案的有效性进行评价。

结果：通过对文献进行系统检索、筛选、评价，总结提炼出慢阻肺患者家庭呼吸康复护理9个方面的共28条最佳证据。通过文献分析，明确家属在慢阻肺患者疾病管理中的参与形式，主要包括：和患者共同学习、监督陪伴患者、记录患者相关健康信息并向医务人员反馈等。纳入21名慢阻肺患者开展为期8周的家属参与式呼吸康复，干预后患者的双侧握力、CAT评分、APGAR评分、SDS评分以及6分钟步行距离较干预前有所改善（P＜0.05），mMRC评分、FEV₁%pred较康复前无显著差异（P＞0.05）。将半结构访谈的录音转为文本材料，分析患者和家属接受家属参与式呼吸康复后的体验和收获，提炼出患者对自身获益的感知、患者对呼吸康复的适应、情感需求得到满足、促使康复训练长期坚持的因素等4个方面的主题。

结论：本研究基于文献分析并结合专家意见和患者建议构建的慢阻肺患者家属参与式呼吸康复方案，构建过程具有科学性。方案初步通过探索性研究验证，对改善慢阻肺患者运动耐力、握力、生活质量、抑郁情绪和家庭支持起到了一定的促进作用。

Background: Chronic obstructive pulmonary disease (COPD) is a chronic airway disease with recurrent acute exacerbation. Domestic and foreign guidelines recommend pulmonary rehabilitation as an important part of the management of stable COPD. Compared with central-based pulmonary rehabilitation, home-based pulmonary rehabilitation has advantages in terms of accessibility, but it also faces problems such as lack of supervision and poor compliance. Studies have shown that involving family members in pulmonary rehabilitation is beneficial to improve patients' compliance and promote their benefits. However, there is still a lack of family-integrated pulmonary rehabilitation programs for patients with COPD.

Objective: This study aims to develop a family-integrated pulmonary rehabilitation program for COPD patients, and preliminarily verify the feasibility and effectiveness of the program.

Methods: All the evidence about home-based pulmonary rehabilitation for patients with COPD was systematically searched, screened and evaluated through evidence-based mehods. The types of literature include guidelines，systematic reviews，evidence summaries，clinical decisions，expert consensuses and randomized controlled trials. We summarized the best evidence for home-based pulmonary rehabilitation nursing in patients with COPD and defined the tasks of family members in pulmonary rehabilitation through literature analysis. Through combining the best evidence and the tasks of family members, a preliminary family-integrated pulmonary rehabilitation programs for patients with COPD was formed. Revise the program based on the patient's suggestions and the opinions of four respiratory experts. Then, the final family-integrated pulmonary rehabilitation program for COPD patients was formed. Patients with stable COPD were selected to participate in the program for 8 weeks. After the intervention, six patients and four family members underwent semi-structured interviews to express their experiences and gains during the program. By comparing the changes in relevant outcome indicators before and after the intervention, combined with interview results, the evaluation of the effectiveness of family-integrated pulmonary rehabilitation programs is conducted.

Results: A total of 28 pieces of best evidence on 9 aspects of home-based pulmonary rehabilitation nursing for COPD patients were summarized. Through literature analysis, the forms of how family members participate in the management of COPD have been clarified, mainly including: learning together with patients, supervising and accompanying patients, recording patients’ health information and providing feedback to medical staff.Twenty-one patients with COPD were included for 8 weeks of family-integrated pulmonary rehabilitation program. The patient's bilateral grip strength, CAT score, APGAR score, SDS score, and 6MWD improved after the intervention (P<0.05), while mMRC score and FEV₁%pred were not significantly different compared with that before intervention (P > 0.05). The audio recordings of semi-structured interviews were converted into written materials, and the experiences and gains of patients and the family members after the program were analyzed. The contents of four themes were extracted, including patients' perception of their own benefits, patients' adaptation to pulmonary rehabilitation, satisfaction of emotional needs, and factors that promote long-term adherence to pulmonary rehabilitation.

Conclusions: Based on literature analysis and combined with experts’ opinions and patients' suggestions, this study constructed a family-integrated pulmonary rehabilitation program for COPD patients scientificly. The program has been preliminarily verified by exploratory studies, and has played a certain role in improving exercise endurance, grip strength, quality of life, depression and family support of patients with COPD.