Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Department of Psychology, King's College London, London, UK.
BMJ Open Respir Res. 2024 Feb 20;11(1):e002061. doi: 10.1136/bmjresp-2023-002061.
Remote delivery may improve access to pulmonary rehabilitation (PR). Existing studies are largely limited to individuals with COPD, and the interventions have lacked codesign elements to reflect the needs and experiences of people with chronic respiratory disease, their carers/families and healthcare professionals. The aim of this study was, using experience-based codesign (EBCD), to collaborate with people with interstitial lung disease (ILD), their carers/families and healthcare professionals, to codesign a remote PR programme ready for testing in a future study.
EBCD comprises interviews, stakeholder workshops and codesign meetings. One-to-one videorecorded interviews with purposively selected people with ILD with experience of PR, their carers/families and healthcare professionals, were edited into a 20 min film. The film was shown at three audiorecorded stakeholder feedback events to identify key themes and touchpoints, and short-list key programme components. The programme was finalised at two further codesign workshops.
Ten people with ILD, four carers/families and seven healthcare professionals were interviewed. Participants in the codesign workshops included service-user group: n=14 and healthcare professional group: n=11; joint event: n=21. Final refinements were made with small codesign teams, one comprising three people with ILD and one carer/family member, one with five healthcare professionals. The final codesigned model is a group based, supervised programme delivered by videoconference. Key elements of programme specific to ILD include recommendations to ensure participant safety in the context of desaturation risk, dedicated time for peer support and adaption of the education programme for ILD needs, including signposting to palliative care.
In this EBCD project, a remote PR programme for people with ILD was codesigned by service-users, their carers/families and multidisciplinary healthcare professionals. Future research should explore the feasibility and acceptability of this intervention.
远程交付可能会增加参与肺康复（PR）的机会。现有研究主要局限于 COPD 患者，干预措施缺乏共同设计元素，无法反映慢性呼吸系统疾病患者、其照顾者/家属和医疗保健专业人员的需求和体验。本研究旨在通过基于经验的共同设计（EBCD），与间质性肺病（ILD）患者、其照顾者/家属和医疗保健专业人员合作，共同设计一个准备好进行未来研究测试的远程 PR 方案。
EBCD 包括访谈、利益相关者研讨会和共同设计会议。通过有目的地选择有 PR 经验的ILD 患者、他们的照顾者/家属和医疗保健专业人员进行一对一的录像访谈，将访谈编辑成一个 20 分钟的电影。该电影在三次录音利益相关者反馈活动中播放，以确定关键主题和接触点，并确定关键方案组件的候选名单。该方案在另外两次共同设计研讨会上敲定。
对 10 名ILD 患者、4 名照顾者/家属和 7 名医疗保健专业人员进行了访谈。在共同设计研讨会上的参与者包括服务用户组：n=14 和医疗保健专业人员组：n=11；联合活动：n=21。小团队进行了最终的改进，其中一个团队由 3 名ILD 患者和 1 名照顾者/家属组成，另一个团队由 5 名医疗保健专业人员组成。最终共同设计的模型是一个基于小组的、通过视频会议提供的监督方案。ILD 特定的方案的关键要素包括在出现血氧饱和度降低风险的情况下确保参与者安全的建议、专门用于同伴支持的时间以及根据 ILD 的需求调整教育方案，包括向姑息治疗方向的引导。
在这个 EBCD 项目中，ILD 患者的远程 PR 方案由服务用户、他们的照顾者/家属和多学科医疗保健专业人员共同设计。未来的研究应该探索这种干预措施的可行性和可接受性。
