PDF(Pubmed)
Abstract：
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.
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.
摘要：
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。
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。
