Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications.
Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications.
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DOI：
10.3389/fdgth.2022.992838
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发表时间：
2022
影响因子：
--
通讯作者：
Percy, Stephen
中科院分区：
文献类型：
--
作者：
Asan, Onur;Elkefi, Safa;Clouser, Katharine N.;Percy, Stephen
关键词：
有医疗复杂性的儿童(CMC)是脆弱的人群，需要持续的护理和监督。CMC家庭照顾者在试图满足CMC患者的需求时遇到了许多挑战，这将这些照顾者置于压力之下，可能会对CMC患者的护理产生负面影响。消费者信息学可能会帮助这些照顾者协调护理。然而，很少有消费者信息学应用程序明确地专注于支持CMC照顾者的需求。这一系统的地图文献回顾旨在提供一个概述和对为CMC及其照顾者设计的消费者信息学的结构化理解。我们遵循了系统的绘图文献回顾过程，以提供CMC现有的消费者信息学文献的概述，这是我们的研究范围。我们使用预设的网状术语列表筛选了IEEE Xplore、Web of Science和PubMed数据库，这些术语涵盖了患有医疗复杂性的儿童及其照顾者对医疗信息学的使用。选定的文章是同行评议的英文出版物，从2002年1月到2022年1月进行了实证验证。在选择和筛选文章后，我们根据预设的映射问题，使用以下标准进行分析：出版年份、出版来源、研究类型、投稿类型、经验类型、满足的需求、目标受众、技术用户和消费者信息学类型。最初的搜索结果是一些(N = 2,275)篇文章，其中包括17种选定的出版物。结果显示，随着时间的推移，人们对CMC消费者信息学出版物的兴趣与日俱增。大多数研究发表于2021年，可行性研究是主要的研究类型。使用最多的技术是远程医疗和远程医疗，其次是移动医疗。这些技术解决了各种需求，包括协调和跟踪、医疗安全、教育和社会支持、日常生活活动、共享决策、信息寻求和情感支持。大多数努力的重点是确保良好的协调和后续行动。CMC消费者信息学是一个很有前途的研究领域，它提出了管理照顾者工作量的新倡议和方法。未来的研究应该转向提供更多基于证据的研究，以检验CMC消费者信息学解决方案的有效性，并确定相关的挑战和限制。
Children with medical complexity (CMC) are fragile populations that require continuous care and supervision. CMC family caregivers experience many challenges trying to address CMC patients' needs which puts these caregivers in a stressful situation that may negatively impact the care of CMC patients. Consumer informatics might help these caregivers in coordinating care. However, few consumer informatics applications explicitly focus on supporting CMC caregivers' needs. This systematic mapping literature review aims to provide an overview and a structured understanding of the consumer informatics designed for CMC and their caregivers. We followed a systematic mapping literature review process to provide an overview of the existing Consumer Informatics literature for CMC, which is the scope of our study. We screened IEEE Xplore, Web of Science, and PubMed databases using a preset list of mesh terms that cover the use of medical informatics by children with medical complexities and their caregivers. The selected articles are peer-reviewed English publications that were empirically validated from January 2002 to January 2022. After selecting and filtering the articles, we analyzed them based on the preset mapping questions using the following criteria: publication year, publication source, research type, contribution type, empirical type, the need addressed, target audience, technology users, and consumer informatics' type. The initial search resulted in a number of (N = 2,275) articles, and 17 selected publications were included. The results showed an increasing interest in CMC consumer informatics publications over time. Most of the studies were published in 2021, and feasibility research is the dominant research type. The most used technology was telehealth and telemedicine, followed by mobile health. The technologies addressed various needs, including; coordination & follow-up, medical safety, education & social support, daily living activities, shared decision making, information seeking, and emotional support. Most of the efforts were focused on ensuring good coordination and follow-up. CMC consumer informatics is a promising research field to present novel initiatives and approaches to manage the caregivers' workload. Future research should be shifted toward providing more evidence-based studies to examine the effectiveness of CMC consumer informatics solutions and identify the related challenges and limitations.
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