“Thrust Out of Normality”—How Adults Living with Cystic Fibrosis Experience Pulmonary Exacerbations

A Qualitative Study

Gabriela Schmid-Mohler, Ann Louise Caress, Rebecca Spirig, Christian Benden, Janelle Yorke

Research output: Contribution to journalArticle

2 Citations (Scopus)

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 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.

Original languageEnglish
Pages (from-to)190-200
Number of pages11
JournalJournal of Clinical Nursing
Volume28
Issue number1-2
Early online date9 Aug 2018
DOIs
Publication statusPublished - 1 Jan 2019
Externally publishedYes

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Cystic Fibrosis
Self Care
Lung
Interviews
Anti-Bacterial Agents
Longitudinal Studies
Exercise
Transplants
Therapeutics

Cite this

Schmid-Mohler, Gabriela ; Caress, Ann Louise ; Spirig, Rebecca ; Benden, Christian ; Yorke, Janelle. / “Thrust Out of Normality”—How Adults Living with Cystic Fibrosis Experience Pulmonary Exacerbations : A Qualitative Study. In: Journal of Clinical Nursing. 2019 ; Vol. 28, No. 1-2. pp. 190-200.
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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 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.",
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“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.

In: Journal of Clinical Nursing, Vol. 28, No. 1-2, 01.01.2019, p. 190-200.

Research output: Contribution to journalArticle

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