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


Schmid-Mohler, Gabriela; Yorke, Janelle; Spirig, Rebecca; Benden, Christian; Caress, Ann-Louise (2019). Adult patients' experiences of symptom management during pulmonary exacerbations in cystic fibrosis: A thematic synthesis of qualitative research. Chronic Illness, 15(4):245-263.

Abstract

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.

Abstract

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.

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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
Language:English
Date:1 December 2019
Deposited On:03 Jan 2019 12:11
Last Modified:29 Sep 2019 05:55
Publisher:Sage Publications Ltd.
ISSN:1742-3953
OA Status:Closed
Publisher DOI:https://doi.org/10.1177/1742395318772647
PubMed ID:29742923

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