PDF(Pubmed)
Abstract：
Digital assistive technologies have the potential to address the pressing need for adequate therapy options for patients with long COVID (also known as post-COVID-19 condition) by enabling the implementation of individual and independent rehabilitation programs. However, the involvement of the target patient group is necessary to develop digital devices that are closely aligned to the needs of this particular patient group.
Participatory design approaches, such as cocreation, may be a solution for achieving usability and user acceptance. However, there are currently no set methods for implementing cocreative development processes incorporating patients. This study addresses the following research questions: what are the tasks and challenges associated with the involvement of patient groups? What lessons can be learned regarding the adequate involvement of patients with long COVID?
First, a literature review based on a 3-stage snowball process was conducted to identify the tasks and challenges emerging in the context of the cocreation of digital assistive devices and services with patient groups. Second, a qualitative analysis was conducted in an attempt to extract relevant findings and criteria from the identified studies. Third, using the method of theory adaptation, this paper presents recommendations for the further development of the existing concepts of cocreation in relation to patients with long COVID.
The challenges of an active involvement of patients in cocreative development in health care include hierarchical barriers and differences in the levels of specific knowledge between professionals and patients. In the case of long COVID, patients themselves are still inexperienced in dealing with their symptoms and are hardly organized into established groups. This amplifies general hurdles and leads to questions of group identity, power structure, and knowledge creation, which are not sufficiently addressed by the current methods of cocreation.
The adaptation of transdisciplinary methods to cocreative development approaches focusing on collaborative and inclusive communication can address the recurring challenges of actively integrating patients with long COVID into development processes.
Participatory design approaches, such as cocreation, may be a solution for achieving usability and user acceptance. However, there are currently no set methods for implementing cocreative development processes incorporating patients. This study addresses the following research questions: what are the tasks and challenges associated with the involvement of patient groups? What lessons can be learned regarding the adequate involvement of patients with long COVID?
First, a literature review based on a 3-stage snowball process was conducted to identify the tasks and challenges emerging in the context of the cocreation of digital assistive devices and services with patient groups. Second, a qualitative analysis was conducted in an attempt to extract relevant findings and criteria from the identified studies. Third, using the method of theory adaptation, this paper presents recommendations for the further development of the existing concepts of cocreation in relation to patients with long COVID.
The challenges of an active involvement of patients in cocreative development in health care include hierarchical barriers and differences in the levels of specific knowledge between professionals and patients. In the case of long COVID, patients themselves are still inexperienced in dealing with their symptoms and are hardly organized into established groups. This amplifies general hurdles and leads to questions of group identity, power structure, and knowledge creation, which are not sufficiently addressed by the current methods of cocreation.
The adaptation of transdisciplinary methods to cocreative development approaches focusing on collaborative and inclusive communication can address the recurring challenges of actively integrating patients with long COVID into development processes.
摘要：
背景：数字辅助技术有可能通过实施个人和独立的康复计划来满足长期COVID（也称为COVID-19后疾病）患者对适当治疗选择的迫切需要。然而,目标患者组的参与对于开发与该特定患者组的需求密切相关的数字设备是必要的。
目标：参与式设计方法，比如共同创造，可能是实现可用性和用户接受度的解决方案。然而,目前尚无固定的方法来实施纳入患者的联合创作发展过程。这项研究解决了以下研究问题：与患者群体的参与相关的任务和挑战是什么？关于长期COVID患者的充分参与，可以学到什么教训？
方法：首先，我们进行了一项基于3阶段滚雪球流程的文献综述,以确定在数字辅助设备和服务与患者组共同创建的背景下出现的任务和挑战.第二,我们进行了定性分析,试图从已确定的研究中提取相关发现和标准.第三，使用理论适应的方法，本文提出了关于长期COVID患者的现有共同创造概念的进一步发展建议.
结果：患者积极参与医疗保健中的协同发展的挑战包括专业人员和患者之间的等级障碍和特定知识水平的差异。在长COVID的情况下，患者本身在处理症状方面仍然缺乏经验，并且很难组织成既定的团体。这放大了一般的障碍，并导致了群体身份的问题，权力结构,和知识创造，目前的共同创造方法没有充分解决这些问题。
结论：跨学科方法适应以协作和包容性沟通为重点的协同发展方法，可以解决将长期COVID患者积极纳入发展过程的反复挑战。
目标：参与式设计方法，比如共同创造，可能是实现可用性和用户接受度的解决方案。然而,目前尚无固定的方法来实施纳入患者的联合创作发展过程。这项研究解决了以下研究问题：与患者群体的参与相关的任务和挑战是什么？关于长期COVID患者的充分参与，可以学到什么教训？
方法：首先，我们进行了一项基于3阶段滚雪球流程的文献综述,以确定在数字辅助设备和服务与患者组共同创建的背景下出现的任务和挑战.第二,我们进行了定性分析,试图从已确定的研究中提取相关发现和标准.第三，使用理论适应的方法，本文提出了关于长期COVID患者的现有共同创造概念的进一步发展建议.
结果：患者积极参与医疗保健中的协同发展的挑战包括专业人员和患者之间的等级障碍和特定知识水平的差异。在长COVID的情况下，患者本身在处理症状方面仍然缺乏经验，并且很难组织成既定的团体。这放大了一般的障碍，并导致了群体身份的问题，权力结构,和知识创造，目前的共同创造方法没有充分解决这些问题。
结论：跨学科方法适应以协作和包容性沟通为重点的协同发展方法，可以解决将长期COVID患者积极纳入发展过程的反复挑战。
