PDF(Pubmed)
Abstract：
BACKGROUND: Many Covid-19 survivors are living with unresolved, relapsing and remitting symptoms and no \'one size\' of treatment is likely to be effective for everyone. Supported self-management for the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co-design framework to guide replication and evaluation.
METHODS: We used the improvement methodology, Experience-Based Co-Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from \'Bridges Self-Management\' (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co-designed resources are also central to Bridges. Adults who self-identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co-design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content.
RESULTS: People with LC (n = 28), and HCPs (n = 9) supported co-design of a book (hard-copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co-design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co-design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments.
CONCLUSIONS: We have developed a new personalised support intervention, with core principles to be used in one-to-one sessions delivered by trained HCPs, with a new co-designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the \'LISTEN\' intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions.
UNASSIGNED: The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co-design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co-authors of this paper.
METHODS: We used the improvement methodology, Experience-Based Co-Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from \'Bridges Self-Management\' (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co-designed resources are also central to Bridges. Adults who self-identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co-design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content.
RESULTS: People with LC (n = 28), and HCPs (n = 9) supported co-design of a book (hard-copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co-design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co-design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments.
CONCLUSIONS: We have developed a new personalised support intervention, with core principles to be used in one-to-one sessions delivered by trained HCPs, with a new co-designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the \'LISTEN\' intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions.
UNASSIGNED: The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co-design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co-authors of this paper.
摘要：
背景：许多新冠肺炎幸存者生活在悬而未决的环境中，复发和缓解症状和没有“一个大小”的治疗可能对每个人都有效。英国国家健康与护理卓越研究所建议对LongCovid(LC)的各种症状进行支持的自我管理。我们旨在使用结构化的共同设计框架来指导复制和评估，为患有LC的人开发一种新的个性化支持干预措施。
方法：我们使用了改进方法，基于经验的联合设计，以加速的形式利用LC人的集体经验。结合来自“桥梁自我管理”（桥梁）的证据，一种对医疗保健专业人员（HCP）进行培训以支持知识的方法，长期生活条件下的个人的信心和技能。共同设计的资源也是桥梁的核心。自称与LC生活在一起或从LC康复的成年人，来自英格兰或威尔士，18岁及以上被招募，和HCP,具有支持LC人员的经验。与会者参加了一系列小型联合设计小组会议和较大的混合会议，以商定优先事项，核心原则，并生成资源和干预内容。
结果：患有LC的人（n=28），和HCP（n=9）支持书籍（硬拷贝和数字形式）的共同设计，以与受过训练的HCP进行1：1支持会话。共同设计阶段优先考虑关于身体症状的故事，以及随之而来的心理和社会挑战，非线性旅程和将稳定性重新概念化为进步，丰富的战略描述和链接到有信誉的建议和支持导航医疗保健服务。共同设计使八项核心干预原则得以制定，这些原则是HCP和保真度评估所使用的培训和语言的基础。
结论：我们开发了一种新的个性化支持干预措施，核心原则将用于由训练有素的HCP提供的一对一课程，用一本新的共同设计的书作为使用叙述构建个性化策略和计划的提示，想法,以及其他人使用LC的解决方案。“LISTEN”干预措施的有效性和成本效益将在更新的“开发和评估复杂干预措施框架”的背景下，在随机对照试验中进行评估。
■倾听公众和患者参与（PPI）组包括7名患有LC的人。他们都为这项研究的设计做出了贡献，五名成员是本文描述的更大的共同设计社区的一部分。他们通过解释干预设计的阶段和结果分析为本文做出了贡献。我们PPI小组的三名成员是本文的合著者。
方法：我们使用了改进方法，基于经验的联合设计，以加速的形式利用LC人的集体经验。结合来自“桥梁自我管理”（桥梁）的证据，一种对医疗保健专业人员（HCP）进行培训以支持知识的方法，长期生活条件下的个人的信心和技能。共同设计的资源也是桥梁的核心。自称与LC生活在一起或从LC康复的成年人，来自英格兰或威尔士，18岁及以上被招募，和HCP,具有支持LC人员的经验。与会者参加了一系列小型联合设计小组会议和较大的混合会议，以商定优先事项，核心原则，并生成资源和干预内容。
结果：患有LC的人（n=28），和HCP（n=9）支持书籍（硬拷贝和数字形式）的共同设计，以与受过训练的HCP进行1：1支持会话。共同设计阶段优先考虑关于身体症状的故事，以及随之而来的心理和社会挑战，非线性旅程和将稳定性重新概念化为进步，丰富的战略描述和链接到有信誉的建议和支持导航医疗保健服务。共同设计使八项核心干预原则得以制定，这些原则是HCP和保真度评估所使用的培训和语言的基础。
结论：我们开发了一种新的个性化支持干预措施，核心原则将用于由训练有素的HCP提供的一对一课程，用一本新的共同设计的书作为使用叙述构建个性化策略和计划的提示，想法,以及其他人使用LC的解决方案。“LISTEN”干预措施的有效性和成本效益将在更新的“开发和评估复杂干预措施框架”的背景下，在随机对照试验中进行评估。
■倾听公众和患者参与（PPI）组包括7名患有LC的人。他们都为这项研究的设计做出了贡献，五名成员是本文描述的更大的共同设计社区的一部分。他们通过解释干预设计的阶段和结果分析为本文做出了贡献。我们PPI小组的三名成员是本文的合著者。
