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.
Background The experiences of patients change throughout their illness trajectory and differ according to their medical history, but digital support tools are often designed for one specific moment in time and do not change with the patient as their health state changes. This presents a fragmented support pattern where patients have to move from one app to another as they move between health states, and some subpopulations of patients do not have their needs addressed at all. Objective This study aims to investigate how patient work evolves over time for those living with type 2 diabetes mellitus and chronic multimorbidity, and explore the implications for digital support system design. Methods In total, 26 patients with type 2 diabetes mellitus and chronic multimorbidity were recruited. Each interview was conducted twice, and interviews were transcribed and analyzed according to the Chronic Illness Trajectory Model. Results Four unique illness trajectories were identified with different patient work goals and needs: living with stable chronic conditions involves patients seeking to make patient work as routinized and invisible as possible; dealing with cycles of acute or crisis episodes included heavily multimorbid patients who sought support with therapy adherence; responding to unstable changes described patients currently experiencing rapid health changes and increasing patient work intensity; and coming back from crisis focused on patients coping with a loss of normalcy. Conclusions Patient work changes over time based on the experiences of the individual, and its timing and trajectory need to be considered when designing digital support interventions. International Registered Report Identifier (IRRID) RR2-10.1136/bmjopen-2018-022163
Objective To understand the nature of health consumer self-management workarounds during the COVID-19 pandemic, to classify these workarounds using the Substitution, Augmentation, Modification, and Redefinition (SAMR) framework, and to see how digital tools had assisted these workarounds. Materials and Methods We assessed 15 self-managing elderly patients with Type 2 diabetes, multiple chronic co-morbidities, and low digital literacy. Interviews were conducted during COVID-19 lockdowns in May-June 2020 and participants were asked about how their self-management had differed from before. Each instance of change in self-management were identified as consumer workarounds and were classified using the SAMR framework to assess the extent of change. We also identified instances where digital technology assisted with workarounds. Results Consumer workarounds in all SAMR levels were observed. Substitution, describing change in work quality or how basic information was communicated, was easy to make and involved digital tools that replaced face-to-face communications, such as the telephone. Augmentation, describing changes in task mechanisms that enhanced functional value, did not include any digital tools. Modification, which significantly altered task content and context, involved more complicated changes such as making video calls. Redefinition workarounds created tasks not previously required, such as using Google Home to remotely babysit grandchildren, had transformed daily routines. Discussion and Conclusion Health consumer workarounds need further investigation as health consumers also use workarounds to bypass barriers during self-management. The SAMR framework had classified the health consumer workarounds during COVID, but the framework needs further refinement to include more aspects of workarounds.
IntroductionMany have argued that a “one-size-fits-all” approach to designing digital health is not optimal and that personalisation is essential to achieve targeted outcomes. Yet, most digital health practitioners struggle to identify which design aspect require personalisation. Personas are commonly used to communicate patient needs in consumer-oriented digital health design, however there is often a lack of reproducible clarity on development process and few attempts to assess their accuracy against the targeted population. In this study, we present a transparent approach to designing and validating personas, as well as identifying aspects of “patient work,” defined as the combined total of work tasks required to manage one's health and the contextual factors influencing such tasks, that are sensitive to an individual's context and may require personalisation.MethodsA data-driven approach was used to develop and validate personas for people with Type 2 diabetes mellitus (T2DM), focusing on patient work. Eight different personas of T2DM patient work were constructed based physical activity, dietary control and contextual influences of 26 elderly Australian participants (median age = 72 years) via wearable camera footage, interviews, and self-reported diaries. These personas were validated for accuracy and perceived usefulness for design, both by the original participants and a younger (median age bracket = 45–54 years) independent online cohort f 131 T2DM patients from the United Kingdom and the United States.ResultsBoth the original participants and the independent online cohort reported the personas to be accurate representations of their patient work routines. For the independent online cohort, 74% (97/131) indicated personas stratified to their levels of exercise and diet control were similar to their patient work routines. Findings from both cohorts highlight aspects that may require personalisation include daily routine, use of time, and social context.ConclusionPersonas made for a specific purpose can be very accurate if developed from real-life data. Our personas retained their accuracy even when tested against an independent cohort, demonstrating their generalisability. Our data-driven approach clarified the often non-transparent process of persona development and validation, suggesting it is possible to systematically identify whether persona components are accurate or. and which aspects require more personalisation and tailoring.
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.
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