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"Thrust out of normality"-How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative
Gabriela Schmid-Mohler1, Ann-Louise Caress2, Rebecca Spirig3
1Centre of Clinical Nursing Science, University Hospital Zurich, Zurich, Switzerland.
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.