Bird Marissa, Li Lin, Ouellette Carley, Hopkins Kylie, McGillion Michael H, Carter Nancy
School of Nursing, McMaster University, Hamilton, ON, Canada.
McMaster Children's Hospital, Hamilton, ON, Canada.
JMIR Pediatr Parent. 2019 Nov 21;2(2):e15106. doi: 10.2196/15106.
Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their families at home has shown promise for improving outcomes and increasing access to care for this medically fragile and resource-intensive population. However, a comprehensive description of the various models of synchronous home digital health interventions does not exist, nor has the impact of such interventions been summarized to date.
We aim to describe the various models of synchronous home digital health that have been used in pediatric populations with special health care needs, their outcomes, and implementation barriers.
A systematic scoping review of the literature was conducted, guided by the Arksey and O'Malley Scoping Review Framework. MEDLINE, CINAHL, and EMBASE databases were searched from inception to June 2018, and the reference lists of the included systematic reviews and high-impact journals were hand-searched.
A total of 38 articles were included in this review. Interventional articles are described as feasibility studies, studies that aim to provide direct care to children with special health care needs, and studies that aim to support family members to deliver care to children with special health care needs. End-user involvement in the design and implementation of studies is evaluated using a human-centered design framework, and factors affecting the implementation of digital health programs are discussed in relation to technological, human, and systems factors.
The use of digital health to care for children with special health care needs presents an opportunity to leverage the capacity of technology to connect patients and their families to much-needed care from expert health care providers while avoiding the expenses and potential harms of the hospital-based care system. Strategies to scale and spread pilot studies, such as involving end users in the co-design techniques, are needed to optimize digital health programs for children with special health care needs.
使用同步数字健康技术为有特殊医疗需求的儿童(患有慢性身体、行为、发育或情感疾病且资源使用量大)及其家庭提供居家护理,已显示出有望改善治疗效果,并增加为这个医疗脆弱且资源密集型群体提供护理的机会。然而,目前尚无对同步家庭数字健康干预的各种模式的全面描述,此类干预的影响至今也未得到总结。
我们旨在描述已用于有特殊医疗需求的儿科人群的同步家庭数字健康的各种模式、其效果及实施障碍。
在阿克西和奥马利范围综述框架的指导下,对文献进行了系统的范围综述。检索了MEDLINE、CINAHL和EMBASE数据库,时间跨度从建库至2018年6月,并人工检索了纳入的系统综述和高影响力期刊的参考文献列表。
本综述共纳入38篇文章。干预性文章被描述为可行性研究、旨在为有特殊医疗需求的儿童提供直接护理的研究,以及旨在支持家庭成员为有特殊医疗需求的儿童提供护理的研究。使用以人为本的设计框架评估最终用户对研究设计和实施的参与情况,并从技术、人力和系统因素方面讨论影响数字健康项目实施的因素。
利用数字健康为有特殊医疗需求的儿童提供护理,为利用技术能力将患者及其家庭与专家医疗服务提供者提供的急需护理相连接提供了契机,同时避免了基于医院的护理系统的费用和潜在危害。需要扩大和推广试点研究的策略,如让最终用户参与协同设计技术,以优化针对有特殊医疗需求儿童的数字健康项目。