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"Thrust out of normality"-How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study
JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift)
 
ID 4519968
Author(s) Schmid-Mohler, Gabriela; Caress, Ann-Louise; Spirig, Rebecca; Benden, Christian; Yorke, Janelle
Author(s) at UniBasel Spirig, Rebecca
Year 2019
Title "Thrust out of normality"-How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study
Journal Journal of clinical nursing
Volume 28
Number 1-2
Pages / Article-Number 190-200
Keywords acute care; adult nursing; childhood illness; chronic illness; emotional distress; qualitative study; respiratory nursing; self-management; symptom control; symptom perception
Mesh terms Adult; Anti-Bacterial Agents, therapeutic use; Anxiety, etiology, psychology; Cystic Fibrosis, complications, psychology; Female; Humans; Longitudinal Studies; Male; Middle Aged; Patient Reported Outcome Measures; Pulmonary Disease, Chronic Obstructive, etiology, psychology; Qualitative Research; Severity of Illness Index; Young Adult
Abstract To explore the experience of pulmonary exacerbation from the perspective of adults with cystic fibrosis.; 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.; Qualitative study with longitudinal study in a subsample.; 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.; Patients (11 men and 7 women; median age 29.5 years, range 19-55 years; median FEV; 1; 45%, range FEV; 1; 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.; The experienced degree and source of emotional distress are drivers for self-management decisions in patients with cystic fibrosis who experience a pulmonary exacerbation.; Our data provide new understanding that will be essential to informing clinical practice, future patient-reported outcomes measures and intervention development.
Publisher Wiley
ISSN/ISBN 0962-1067 ; 1365-2702
edoc-URL https://edoc.unibas.ch/73422/
Full Text on edoc No
Digital Object Identifier DOI 10.1111/jocn.14646
PubMed ID http://www.ncbi.nlm.nih.gov/pubmed/30091490
ISI-Number WOS:000453228000018
Document type (ISI) Article
 
   

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