“Thrust out of normality”—How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study

Aim and objectives To explore the experience of pulmonary exacerbation from the perspective of adults with cystic fibrosis. Background While management of pulmonary exacerbations is a pillar of cystic fibrosis care, little is known of patients’ perspectives. Understanding the patient's experience is essential for developing and evaluating interventions in support of patient self‐management. Design Qualitative study with longitudinal study in a subsample. Methods The study took place from 2015–2016 in a university hospital. Eighteen patients with cystic fibrosis were included who were ≥18 years of age and had no solid organ transplant. Patients’ experiences were explored through semistructured interviews and analysed using framework analysis. They each participated in one interview, with a subsample (N = 7) being interviewed twice during and once after antibiotic therapy. Results Patients (11 men and 7 women; median age 29.5 years, range 19–55 years; median FEV1 45%, range FEV1 23%–105%) experienced pulmonary exacerbations as disruptions of their normality, which led to a substantial increase in their emotional distress. Exacerbations represented a period of threat and domination by CF; that is, symptoms and treatment consumed energy, restricted physical activity and daily life roles. “Noting change,” “waiting until antibiotics help,” “returning to normality” and “establishing a new normality” characterised their descriptions of the pulmonary exacerbation trajectory. Emotional distress was the major driver for patients’ self‐management, and personal goals and illness beliefs influenced also patients’ self‐management decisions. Conclusion The experienced degree and source of emotional distress are drivers for self‐management decisions in patients with cystic fibrosis who experience a pulmonary exacerbation. Relevance to clinical practice Our data provide new understanding that will be essential to informing clinical practice, future patient‐reported outcomes measures and intervention development.