‘People need to be a bit more understanding that my body is wrecked’: A qualitative exploration of inpatient hospital care for people living with multiple long-term conditions

Abstract

BACKGROUND: Living with multiple long-term conditions (MLTC) is becoming increasingly common with far-reaching consequences for individuals and healthcare systems. People with MLTC often face complex care pathways through health systems - especially hospitals, which are largely configured for specialist treatment of single conditions - yet evidence on people with MLTC's lived experience in the hospital setting is limited. This study aimed to understand the hospital care experiences of people living with MLTC who had recently had an inpatient stay. METHODS: People with MLTC who had experienced an inpatient stay in hospital within the previous six months were recruited via three hospitals in England and via patient networks. Semi-structured one-to-one interviews were conducted with each participant, focussing on their experiences of care from admission to discharge. An inductive thematic analysis was undertaken. RESULTS: A total of 44 people (mean age 68.4 years, 23 women) who reported living with between 2 and 11 long-term conditions, the majority of whom (96%) reported that their most recent hospital stay was unplanned, participated in the study. Three themes were constructed from the interview data, reflecting perceptions at individual, interpersonal and organisational levels. Participants' experiences were shaped by internalised narratives of hospital care, where care was expected to be focussed primarily on single conditions within a resource-constrained environment. Relationally, the degree of alignment between clinician and patient knowledge on conditions was a key contributor to whether hospital care was experienced positively or negatively, and participants' perceptions of organisational constraints to holistic care gave insights into their views on system-level barriers shaping the provision of care for MLTC in the hospital setting. CONCLUSIONS: Experiences of inpatient hospital care for people with MLTC are complex, diverse and shaped by expectations of care in a specialist setting configured to provide care for single conditions. Healthcare professionals should incorporate patients' experiential expertise into decision-making processes through consultation with people with lived experience of MLTC. Redesigning hospital services to provide holistic care will require flexibility to respond to the wide spectrum of MLTC experiences.