“It is like a pet in a way”: The self‐management experiences of people with cystic fibrosis diabetes

Author:

Collins Sarah1ORCID,Jones Andrew1,Woodward Sue2,Sturt Jackie2

Affiliation:

1. Royal Brompton & Harefield Hospitals London UK

2. King's College London London UK

Abstract

AbstractBackgroundCystic fibrosis diabetes (CFD) is a very common co‐morbidity affecting the lives of people with cystic fibrosis. Surprisingly, minimal research has been undertaken to understand the experiences of people with CFD and how they self‐mange this condition.MethodsUsing interpretative phenomenological analysis, the present study examined the self‐management experiences of people with CFD. In‐depth semi‐structure interviews were conducted with eight people who had CFD.ResultsThe following three superordinate themes were identified: forming a relationship with CFD, balancing the CFD self‐management triad, and the unmet need for information and support.ConclusionsThe findings suggest that the management of CFD is challenging and, although people with CFD experience many adaptation and management processes similar to people with type 1 diabetes, they struggle with the additional complexity of balancing CF and CFD. The provision of appropriate education, support and person‐centred care needs to be addressed.

Publisher

Wiley

Subject

Nutrition and Dietetics,Medicine (miscellaneous)

Reference53 articles.

1. Cystic Fibrosis Trust. UK Cystic Fibrosis Registry Annual Data Report 2021 [Online]. Cystic Fibrosis Trust;2022. Available from:https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/reporting-and-resources

2. CF-related diabetes: Containing the metabolic miscreant of cystic fibrosis

3. Epidemiology, Pathophysiology, and Prognostic Implications of Cystic Fibrosis–Related Diabetes

4. ISPAD Clinical Practice Consensus Guidelines 2018: Management of cystic fibrosis-related diabetes in children and adolescents

5. Cystic Fibrosis Trust. Management of Cystic Fibrosis Diabetes [Online]. London: Cystic Fibrosis Trust;2022. Available from:https://www.cysticfibrosis.org.uk/sites/default/files/2022-12/CF%20Diabetes%20Consensus%20FINAL_0.pdf

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