Patient Work in Long-Term Conditions

Long-term conditions are one of the major causes to morbidity and death worldwide. Management of such conditions in healthcare settings has been framed as a challenge for healthcare systems, and people living with long-term conditions often experience fragmented care. Integrated care approaches have been advocated as the solution, but few studies include the work done by patients and its significance for care processes. The present study aimed to explore the work of people with long-term conditions in the unfolding of their care trajectories. The study is based on semi-structured interviews of people living with chronic obstructive pulmonary disease and musculoskeletal disorders. The participants were all home-dwelling and living in Norway. Reflexive thematic analysis was used to guide the analysis. Theory about work as theorized by Strauss et al. was central to the analysis. The persons highlight that they feel that it is up to them to ask questions and initiate care, that they monitor their bodies to be equipped to act adequately when changes occur, and that they engage in deliberative interaction with healthcare personnel. The findings add depth to current knowledge and highlight that people living with long-term conditions participate in the unfolding of their care trajectories by doing comprehensive work. Framing what people with long-term conditions do when participating in their care trajectories as work brings forth aspects of healthcare use that may be less visible for healthcare personnel and enables addressing individual care trajectories as intertwined with patient work.