Patient Work – A Scoping Review (Preprint)

K Yin, J Jung, E Coiera, L Laranjo, Ann Blandford, A Khoja, W-T Tai, DP Phillips, AYS Lau
in Working/Discussion Paper


Self-management (or self-care) is widely promoted but many patients struggle to practise it effectively. Moreover, few studies have analysed the nature and volume of work required from patients in self-care and how such work fits into the context of their daily life.

                    To review the characteristics of patient work in adult patients. Patient work refers to the tasks that health conditions impose on patients (e.g., taking medications) and the contextual factors affecting these tasks.

                    A systematic scoping review was conducted using narrative synthesis. Data was extracted from PubMed, Embase, CINAHL, and PSYCHInfo, including studies from August 2013 to August 2018. Included studies focussed on adult patients and assessed one or more of the following: a) physical self-care tasks; b) cognitive self-care tasks; or c) contextual factors affecting these tasks. Tasks were categorised according to the themes that emerged 1) whether the task could be conducted alone or require the assistance of others, 2) are visible or 'invisible' to other people, and 3) whether the task created resources. Contextual factors were grouped according to the level at which they exert influence (i.e. micro, meso, macro), as well as where they fitted in the patient work framework (physical, social, and organisational).

                    In total 67 publications were included with 58 original research articles and 9 review articles. Patients work was observed for a variety of goals, ranging from physical and tangible goals (such as taking care of one's body and improving physical capacity), to psychological and social goals (such as sense-making and creating resources for coping). Such work was affected by a range of contextual factors on micro, meso, or macro levels. Our results indicate most patient work was done alone in private, often imposing cognitive burden only, in circumstances where few interventions were readily available to provide support or relief.

                    This review seeks to provide insight into the work burden of self-care from a patient perspective, and how patient context influences such work.  For many patients, the work of self-care is ever-present, invisible and overwhelming. When designing and implementing self-care interventions, it is important to understand how the work required impacts on one's internal state and coping strategy, how such work fits into daily routines, and whether these changes could be maintained in the long-term.