Header

UZH-Logo

Maintenance Infos

"Thrust out of normality"-How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study


Schmid-Mohler, Gabriela; Caress, Ann-Louise; Spirig, Rebecca; Benden, Christian; Yorke, Janelle (2019). "Thrust out of normality"-How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study. Journal of Clinical Nursing, 28(1-2):190-200.

Abstract

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 FEV 45%, range FEV 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.

Abstract

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 FEV 45%, range FEV 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.

Statistics

Citations

Dimensions.ai Metrics
4 citations in Web of Science®
4 citations in Scopus®
Google Scholar™

Altmetrics

Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Hospital Zurich > Clinic for Pneumology
Dewey Decimal Classification:610 Medicine & health
Scopus Subject Areas:Health Sciences > General Nursing
Language:English
Date:January 2019
Deposited On:03 Jan 2019 11:58
Last Modified:29 Jul 2020 08:52
Publisher:Wiley-Blackwell Publishing, Inc.
ISSN:0962-1067
OA Status:Closed
Publisher DOI:https://doi.org/10.1111/jocn.14646
PubMed ID:30091490

Download

Full text not available from this repository.
View at publisher

Get full-text in a library