"Thrust out of normality"-How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study.
J Clin Nurs
; 28(1-2): 190-200, 2019 Jan.
Article
em En
| MEDLINE
| ID: mdl-30091490
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.
Palavras-chave
Texto completo:
1
Bases de dados:
MEDLINE
Assunto principal:
Ansiedade
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Índice de Gravidade de Doença
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Fibrose Cística
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Doença Pulmonar Obstrutiva Crônica
Tipo de estudo:
Etiology_studies
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Observational_studies
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Prognostic_studies
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Qualitative_research
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Risk_factors_studies
Limite:
Adult
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Female
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Humans
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Male
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Middle aged
Idioma:
En
Revista:
J Clin Nurs
Assunto da revista:
ENFERMAGEM
Ano de publicação:
2019
Tipo de documento:
Article
País de afiliação:
Suíça