Yin Kathleen, Jung Joshua, Coiera Enrico, Laranjo Liliana, Blandford Ann, Khoja Adeel, Tai Wan-Tien, Phillips Daniel Psillakis, Lau Annie Y S
Centre for Health Informatics, Australian Institute of Health Innovation, Macquarie University, North Ryde, Australia.
UCL Interaction Centre, University College London, London, United Kingdom.
J Med Internet Res. 2020 Jun 2;22(6):e16656. doi: 10.2196/16656.
Having patients self-manage their health conditions is a widely promoted concept, but many patients struggle to practice it effectively. Moreover, few studies have analyzed the nature of work required from patients and how such work fits into the context of their daily life.
This study aimed to review the characteristics of patient work in adult patients. Patient work refers to tasks that health conditions impose on patients (eg, taking medications) within a system of contextual factors.
A systematic scoping review was conducted using narrative synthesis. Data were extracted from PubMed, Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO, including studies from August 2013 to August 2018. The included studies focused on adult patients and assessed one or more of the following: (1) physical health-related tasks, (2) cognitive health-related tasks, or (3) contextual factors affecting these tasks. Tasks were categorized according to the themes that emerged: (1) if the task is always visible to others or can be cognitive, (2) if the task must be conducted collaboratively or can be conducted alone, and (3) if the task was done with the purpose of creating resources. Contextual factors were grouped according to the level at which they exert influence (micro, meso, or macro) and where they fit in the patient work system (the macroergonomic layer of physical, social, and organizational factors; the mesoergonomic layer of household and community; and the microergonomic triad of person-task-tools).
In total, 67 publications were included, with 58 original research articles and 9 review articles. A variety of patient work tasks were observed, ranging from physical and tangible tasks (such as taking medications and visiting health care professionals) to psychological and social tasks (such as creating coping strategies). Patient work was affected by a range of contextual factors on the micro, meso, or macro levels. Our results indicate that most patient work was done alone, in private, and often imposing cognitive burden with low amounts of support.
This review sought to provide insight into the work burden of health management from a patient perspective and how patient context influences such work. For many patients, health-related work is ever present, invisible, and overwhelming. When researchers and clinicians design and implement patient-facing interventions, it is important to understand how the extra work impacts one's internal state and coping strategy, how such work fits into daily routines, and if these changes could be maintained in the long term.
让患者自我管理健康状况是一个广泛推广的概念，但许多患者难以有效地付诸实践。此外，很少有研究分析患者所需开展工作的性质以及此类工作如何融入他们的日常生活背景。
本研究旨在回顾成年患者的患者工作特征。患者工作是指健康状况在一系列背景因素系统中加诸于患者的任务（例如服药）。
采用叙述性综合法进行系统的范围综述。数据从PubMed、医学文摘数据库（EMBASE）、护理学与健康相关文献累积索引数据库（CINAHL）和心理学文摘数据库（PsycINFO）中提取，包括2013年8月至2018年8月的研究。纳入的研究聚焦于成年患者，并评估以下一项或多项内容：（1）与身体健康相关的任务，（2）与认知健康相关的任务，或（3）影响这些任务的背景因素。任务根据出现的主题进行分类：（1）该任务是否始终对他人可见或是否属于认知性任务，（2）该任务必须协作完成还是可单独完成，以及（3）该任务是否旨在创造资源。背景因素根据其发挥影响的层面（微观、中观或宏观）以及在患者工作系统中的契合点进行分组（身体、社会和组织因素的宏观工效学层面；家庭和社区的中观工效学层面；以及人-任务-工具的微观工效学三元组）。
总共纳入67篇出版物，其中58篇原创研究文章和9篇综述文章。观察到各种各样的患者工作任务，从身体和实际任务（如服药和就诊医疗专业人员）到心理和社会任务（如制定应对策略）。患者工作受到微观、中观或宏观层面一系列背景因素的影响。我们的结果表明，大多数患者工作是独自在私下完成的，并且通常在支持较少的情况下带来认知负担。
本综述旨在从患者角度深入了解健康管理的工作负担以及患者背景如何影响此类工作。对许多患者而言，与健康相关的工作始终存在、无形且繁重。当研究人员和临床医生设计并实施面向患者的干预措施时，了解额外工作如何影响一个人的内在状态和应对策略、此类工作如何融入日常生活以及这些改变能否长期维持是很重要的。
