在智力障碍领域设计,开发和实施电子健康的包容性方法:范围审查
Julia F E van Calis1, Kirsten E Bevelander1, Anneke W C van der Cruijsen1
1Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, Netherlands.
Journal of medical Internet research
|May 30, 2023
概括
对于智力障碍 (ID) 的人来说,使用电子健康是具有挑战性的. 需要包括的设计和开发方法,但实施和上下文因素需要更多的注意力来弥合翻译差距.
科学领域:
- 医疗信息学 医疗信息学
- 关于残疾人的研究.
- 人与计算机的交互
背景情况:
- 由于技术和用户需求之间的不匹配,电子健康对智力残疾人 (ID) 提出了独特的挑战.
- 在开发的电子健康技术和ID患者的复杂需求之间存在着显著的翻译差距.
- 虽然用户参与策略旨在弥合这一差距,但其在ID电子卫生中的应用尚未得到充分研究.
研究的目的:
- 确定和审查用于ID患者电子健康设计,开发和实施的包容性方法.
- 检查ID患者和其他利益相关者参与电子健康过程的程度和阶段.
- 通过使用已建立的框架来了解这些过程,例如电子健康研究和疾病管理中心的路线图以及非采用,放弃和扩大,扩散和可持续性框架的挑战.
主要方法:
- 对科学和灰色文献进行了全面的范围审查.
- 在主要数据库 (PubMed,Embase,PsycINFO,CINAHL,Cochrane,Web of Science,Google Scholar) 和相关组织网站上进行了系统的搜索.
- 自1995年以来发表的详细介绍ID患者电子健康设计,开发或实施的研究被纳入并分析了9个关键领域.
主要成果:
- 在10,639项研究中,只有17项符合纳入标准,突出了研究中的差距.
- 以人为中心和参与式的设计方法,通常是代的,主要用于技术开发阶段.
- 文献主要侧重于个人使用电子健康,对最终用户以外的利益相关方参与的细节较少,对实施阶段和组织背景的关注有限.
结论:
- 包容性方法在参与式开发,代过程和技术设计阶段最为明显.
- 实施阶段和关键的上下文因素 (外部,组织,财务) 没有得到足够的关注,尽管ID患者依赖他们的社会环境.
- 在整个过程中进一步纳入最终用户和关键利益相关者是必不可少的,以减少翻译差距,并确保电子健康满足用户的需求和能力.
相关概念视频
01:29Intellectual Disability
123
Intellectual disability (ID) is a neurodevelopmental condition characterized by deficits in intellectual and adaptive functioning that manifest during the developmental period. This condition encompasses challenges in reasoning, memory, problem-solving, and learning, accompanied by impairments in everyday life skills, such as communication, self-care, and social interactions. Intellectual disability affects approximately 1% of the population in the United States, impacting an estimated 5...
123
01:25Learning Disabilities
222
Learning disabilities are cognitive disorders caused by neurological impairments that affect cognitive functions like language and reading, without indicating overall intellectual or developmental challenges. These disabilities differ from global intellectual or developmental disabilities as they are limited to distinct cognitive functions. Common learning disabilities include dysgraphia, dyslexia, and dyscalculia, each of which impacts unique aspects of learning.
Dyslexia
Dyslexia is a...
Dyslexia
Dyslexia is a...
222
01:30Community Based Intervention
66
Community-based interventions in mental health represent a paradigm shift from institution-centered care to treatments embedded within the fabric of local communities. By prioritizing inclusion and leveraging existing societal structures, this approach fosters a supportive environment conducive to addressing mental health challenges while promoting individual dignity and agency.
Foundations of Community Mental Health Programs
Central to the success of community-based interventions is the...
Foundations of Community Mental Health Programs
Central to the success of community-based interventions is the...
66
01:26Methods Of Healthcare Delivery System
3.3K
At the different levels of the healthcare system, we see varying methods of healthcare used. These methods include managed care systems, case management, and primary healthcare.
Managed Care System:
The managed care system is designed to control the cost while maintaining the quality of care. The patient's care from admission to discharge is planned by the primary care provider or the case manager, also known as the gatekeeper. In a managed care system, the number of care providers is...
Managed Care System:
The managed care system is designed to control the cost while maintaining the quality of care. The patient's care from admission to discharge is planned by the primary care provider or the case manager, also known as the gatekeeper. In a managed care system, the number of care providers is...
3.3K
01:21Dimensions of Health and Illness
7.5K
The factors influencing the health-illness continuum can be internal or external and may or may not be under conscious control. They are related to the following eight human dimensions, and each dimension is interrelated to one other.
7.5K
01:19Autism Spectrum Disorder
167
Autism spectrum disorder (ASD) is a neurodevelopmental condition marked by persistent deficits in social communication and interaction alongside restrictive and repetitive behaviors or interests. ASD is sometimes accompanied by intellectual impairment.
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
167