Experience, influences, and impacts on breathlessness among people receiving care in the intensive care unit: A qualitative study

INTRODUCTION: Breathlessness is frequently experienced by patients in the intensive care unit (ICU) and associated with anxiety and delays in weaning from mechanical ventilation. Breathlessness in this clinical setting remains under-recognised in clinical guidelines, and little is known about patient experiences in the Australian ICU context. OBJECTIVE: The aim of this study was to describe patients' experiences of breathlessness recalled in the ICU and identify factors that modified (exacerbated or relieved) the experience, within an Australian ICU. DESIGN: A descriptive qualitative study was conducted. METHOD: Semistructured interviews were conducted with adults admitted to a single metropolitan ICU (stay >48 h) who experienced breathlessness, within 2 weeks of transfer to a general ward. The interview topic guide was developed in collaboration with healthcare experts, including consumers with past ICU experience. Interviews were audiotaped, transcribed, anonymised, and analysed using inductive content analysis. Clinical and demographic data were obtained from medical records. FINDINGS: Twenty people were interviewed a mean of 1.6 days post ICU transfer (female n = 11; mean age: 63.4 [standard deviation: 17.4] years; mean ICU stay: 5.8 [4.3] days; invasive/noninvasive ventilation n = 7/10). Six major categories were reported: two related to experiences before and after ICU and four specific to the ICU: (i) intensely difficult breathlessness (sensations, feelings, thoughts, and immediate impacts); (ii) factors exacerbating breathlessness (procedures, pain-anxiety cycles, miscommunication, and intubation/masks); (iii) factors relieving breathlessness (practical strategies enacted by staff, self, and family including calm, empathic communication and ventilation); and (iv) beliefs about causes of breathlessness (physiological origins, medical interventions, anxiety, lifetime exposures, and health behaviours). CONCLUSION: This study provides new insights into the lived experience of breathlessness among ICU patients, highlighting its physiological, emotional, and cognitive impacts. Small, nonpharmacological adjustments to care contributed to meaningful relief or, at times, escalation of breathlessness, underscoring the importance of integrating breathlessness assessment and individualised management into routine ICU care. This study prospectively registered with the Australian New Zealand Clinical Trials Registry, ACTRN12622000701729.