Exploring the role of temporal structures in experiences of chronically ill patients and their relatives

Context: The way patients experience healthcare provision is substantially influenced by time related aspects. The importance of temporal structures in hospitals has been recognized, but there is a call for further studies addressing the way patients experience them. Beside objective characteristics like duration and pace, this experience can also be influenced by subjective factors such as prior visits to e.g. a chemotherapy unit, interaction with caregivers at the hospital, and the imagined future of being frequently confronted with these sessions. Our paper investigates how chronically ill patients and their relatives experience such time-related factors. Methods: An exploratory-descriptive qualitative research design (EDQ) was used. EDQ research is considered suitable to study areas within healthcare practice that have previously received little or no attention. Data was collected through face-to face interviews with chronically ill patients (i.e., oncology, Crohn’s disease, ulcerative bowel disease, kidney failure with dialysis) (n=52) supplemented with patients’ diaries (n=9), interviews with one of their close relatives (n=6), employers (n=2) and one occupational health expert. The interviews ranged in length from 60 to 154 minutes. Abductive thematic analysis was conducted using NVivo, following Braun and Clarke's six-phase model. The study is grounded in the theories of intersubjective time. Results: Our empirical findings showed that time plays an important role in the experiences of chronically ill patients during the care process. Patients reported that sometimes they clashed with temporal structures from different organizations. For example, appointments had been scheduled without taking into account daily morning traffic jams or without considering the opening hours of the patient children’s nursery. Our results demonstrated that some patients adapt to the hospital’s temporal structure (entrain), whereas other patients ask for a change in the appointment time (resist). Remarkably, when physicians do not align with the temporal structures of hospitals, as they often start late or run over time, patients adjust their expectations because they interpret this as a consequence of the physician's workload. Furthermore, most patients reported being accompanied by a relative during treatment and hospital visits. The interviews highlighted how these relatives had to cope with temporal structures imposed by their employer. Discussion: Chronically ill patients encounter multiple temporal structures in their care process and interpret them individually. The individual temporal schemata of patients and their close relatives are shaped by the temporal structures of various organizations they interact with and by how they perceive and navigate them. Moreover, caregivers have individual temporal schemata of their own. This all leads to a complex network of intersubjective time relationships. This goes largely beyond the one-to-one patient–physician encounter. Further research could explore intersubjective time in all relationships. This would require pursuing a multilateral approach in which time perceptions and experiences of all actors involved are explored. How temporal schemata and structures are experienced by patients and relatives may cause effects on their (psychological) well-being, particularly for patients with chronic diseases involving periodic treatments. For hospitals, this implies that designing temporal structures such as appointment systems should involve more than optimizing the hospital’s internal processes.