Patient Work and Their Contexts: Scoping Review

Abstract

Background 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. Objective 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. Methods 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). Results 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. Conclusions 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.

How Patient Work Changes Over Time for People With Multimorbid Type 2 Diabetes: Qualitative Study

“…Table 2 outlines the nine phases in the Chronic Illness Trajectory Model, their definitions [ 16 ], and example quotes from our cohort. Table 3 lists the patient work tasks involved in each phase.…”

“…More quotes supporting each of the phases can be found in Multimedia Appendix 2 . Details of patient work tasks can be found in our previous review [ 16 ], which outlines the different task categories, how the categories were defined and created, and what examples were available for each category.…”

“…KY and JJ coded all transcripts separately and established codes that emerged from the data, which described either the work conducted to manage health or how the experience of self-management changed over time. These emerged codes were then deductively placed into themes that aligned with the phases and trajectories in the Chronic Illness Trajectory Model [ 5 ] and patient work tasks established in our previous scoping review [ 16 ]. Codes that did not fit into any existing themes in either of the frameworks were then read and placed into emergent themes over multiple readings.…”

Minimally disruptive medicine (MDM) in clinical practice: a qualitative case study of the human immunodeficiency virus (HIV) clinic care model

“…Few studies have examined the extent to which existing care models align with the concepts of MDM [ 26 ]; where they have, with the exception of this report, they have found little alignment [ 29 ]. From the perspective of patients and healthcare professionals, the examined model of care seems to overcome specific issues identified as challenging to patients’ workload-capacity balance [ 9 ]. For example, past research has identified clinic-level factors preventing adherence and retention in care such as trouble getting appointments, lack of communication amongst clinicians, uncaring clinical teams, and inability to customize patient care plans to fit their lives [ 16 , 19 , 30 , 31 ].…”

“…Alternatively, supporting capacity may help overwhelmed patients experience better outcomes [ 7 ]. The evidence-based work of CuCoM supported the framework of MDM care model as one that pursues patient goals while minimizing the footprint/impact of healthcare with attention to capacity and workload, which is particularly important for patients with complex or chronic conditions [ 8 , 9 ].…”