Adult patients’ experiences of symptom management during pulmonary exacerbations in cystic fibrosis: A thematic synthesis of qualitative research

Objective The aim of this review was to describe how patients experience an exacerbation of cystic fibrosis in terms of symptom management. Methods A systematic literature search was performed in MEDLINE, CINAHL, EMBASE, PSYCINFO and ASSIA. Studies were included that contained any direct quotes or s...

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Bibliographic Details
Published in:Chronic Illness 2019-12, Vol.15 (4), p.245-263
Main Authors: Schmid-Mohler, Gabriela, Yorke, Janelle, Spirig, Rebecca, Benden, Christian, Caress, Ann-Louise
Format: Article
Language:English
Subjects:
Clinical medicine
Cystic fibrosis
Delayed
Goal setting
Help seeking behavior
Intervention
Medical personnel
Normality
Patient communication
Patients
Physiology
Psychological problems
Qualitative research
Selfmanagement
Symptom management
Symptoms
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Summary:Objective The aim of this review was to describe how patients experience an exacerbation of cystic fibrosis in terms of symptom management. Methods A systematic literature search was performed in MEDLINE, CINAHL, EMBASE, PSYCINFO and ASSIA. Studies were included that contained any direct quotes or summaries of quotes from patients with cystic fibrosis aged 16 or older and were related to symptom experience and management during an exacerbation. Framework analysis, guided by Symptom Management Theory, was used to present the findings. Results The review included 18 qualitative studies. In addition to physiological symptoms, patients highlighted the significant role of psychological symptoms. Delayed help-seeking was a common first response. Participants choose their self-management strategies taking both physiological and psychological symptoms into account. Maintaining normality was an important short-term outcome for patients, leading to conflict with health professionals. Patients’ symptom management during exacerbation was greatly influenced by the structure of cystic fibrosis care. Discussion Our findings provide an initial understanding of factors influencing patient self-management during an exacerbation. The transferal of these findings into clinical practice will provide a basis for shared goal setting and intervention planning. In addition, our findings have implications for future development of patient-reported outcome measures and intervention research.
ISSN:1742-3953
1745-9206
DOI:10.1177/1742395318772647