participatory development

参与式发展
  • 文章类型: Review
    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。
    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.
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  • 文章类型: Journal Article
    背景:对于智障人士(ID)而言,使用电子健康比一般人群更具挑战性,因为这些技术通常不适合拥有ID的人的复杂需求和生活环境。已开发的技术与用户的需求和能力之间存在转化差距。已经开发了用户参与方法来克服设计过程中的这种不匹配,发展,和技术的实施过程。eHealth的有效性和使用受到了学术界的广泛关注,但对用户参与方法知之甚少。
    目的:在本范围审查中,我们的目标是确定目前用于设计的包容性方法,发展,并为有身份证的人实施电子健康。我们回顾了具有ID的人员和其他利益相关者如何以及在哪些阶段被包括在这些过程中。我们使用了从电子卫生研究和疾病管理路线图中心确定的9个领域,放弃,以及扩大规模的挑战,传播,和可持续性框架,以深入了解这些过程。
    方法:我们通过在PubMed中的系统搜索确定了科学和灰色文献,Embase,PsycINFO,CINAHL,科克伦,WebofScience,谷歌学者,和相关中间(医疗保健)组织(的网站)。我们纳入了自1995年以来发表的显示设计的研究,发展,或具有ID的人的eHealth的实施过程。对9个领域的数据进行了分析:参与式发展,迭代过程,值规格,价值主张,技术开发和设计,组织,外部上下文,实施,和评价。
    结果:搜索策略导致了10,639项研究,其中17人(0.16%)符合纳入标准。使用了各种方法来指导用户参与(例如,以人为或用户为中心的设计和参与式开发),其中大多数主要在技术开发过程中应用了迭代过程。对最终用户以外的利益攸关方的参与描述不那么详细。文献侧重于电子健康在个人层面的应用,没有考虑组织背景。设计和开发阶段的包容性方法得到了很好的描述;然而,执行阶段仍未得到充分利用。
    结论:参与式发展,迭代过程,技术开发和设计领域显示出在开发开始时和开发期间应用的包容性方法,而只有少数方法涉及最终用户和过程结束时和实施过程中的迭代过程。文献主要集中在该技术的个人使用上,和外部,组织,财务背景前提条件受到的关注较少。然而,该目标群体的成员依靠他们的(社会)环境来照顾和支持。这些代表性不足的领域需要更多的关注,和关键利益相关者应进一步包括在过程中,以减少存在于开发技术和用户需求之间的转化差距,能力,和背景。
    The use of eHealth is more challenging for people with intellectual disabilities (IDs) than for the general population because the technologies often do not fit the complex needs and living circumstances of people with IDs. A translational gap exists between the developed technology and users\' needs and capabilities. User involvement approaches have been developed to overcome this mismatch during the design, development, and implementation processes of the technology. The effectiveness and use of eHealth have received much scholarly attention, but little is known about user involvement approaches.
    In this scoping review, we aimed to identify the inclusive approaches currently used for the design, development, and implementation of eHealth for people with IDs. We reviewed how and in what phases people with IDs and other stakeholders were included in these processes. We used 9 domains identified from the Centre for eHealth Research and Disease management road map and the Nonadoption, Abandonment, and challenges to the Scale-up, Spread, and Sustainability framework to gain insight into these processes.
    We identified both scientific and gray literature through systematic searches in PubMed, Embase, PsycINFO, CINAHL, Cochrane, Web of Science, Google Scholar, and (websites of) relevant intermediate (health care) organizations. We included studies published since 1995 that showed the design, development, or implementation processes of eHealth for people with IDs. Data were analyzed along 9 domains: participatory development, iterative process, value specification, value proposition, technological development and design, organization, external context, implementation, and evaluation.
    The search strategy resulted in 10,639 studies, of which 17 (0.16%) met the inclusion criteria. Various approaches were used to guide user involvement (eg, human or user-centered design and participatory development), most of which applied an iterative process mainly during technological development. The involvement of stakeholders other than end users was described in less detail. The literature focused on the application of eHealth at an individual level and did not consider the organizational context. Inclusive approaches in the design and development phases were well described; however, the implementation phase remained underexposed.
    The participatory development, iterative process, and technological development and design domains showed inclusive approaches applied at the start of and during the development, whereas only a few approaches involved end users and iterative processes at the end of the process and during implementation. The literature focused primarily on the individual use of the technology, and the external, organizational, and financial contextual preconditions received less attention. However, members of this target group rely on their (social) environment for care and support. More attention is needed for these underrepresented domains, and key stakeholders should be included further on in the process to reduce the translational gap that exists between the developed technologies and user needs, capabilities, and context.
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