TY - JOUR
T1 - The experience of living with and managing cystic fibrosis related diabetes
T2 - a qualitative review
AU - Collins, Sarah
AU - Jones, Andrew
AU - Woodward, Sue
AU - Sturt, Jackie
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This article represents independent research arising from a Clinical Doctoral Research Fellowship. Sarah Collins, ICA-CDRF-2015-01-023 is supported by the National Institute for Health Research and Health Education England. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research, Health Education England, or the Department of Health.
Publisher Copyright:
© The Author(s) 2022.
PY - 2022/12
Y1 - 2022/12
N2 - Background: Improved survival rates for people with cystic fibrosis have led to increased rates of co-morbidity, of which diabetes is the most common. Cystic fibrosis related diabetes affects 19% of adolescents and up to 50% of adults, although little is known about their experiences of this co-morbidity. Aims: To investigate the experiences of living with and managing cystic fibrosis related diabetes among adolescents and adults. Methods: Systematic review and thematic analysis of qualitative evidence. Results: Six studies, rated good quality, were included in the review and four main themes emerged from the data: knowledge and understanding; emotional and social impact; balancing both conditions; acceptance and adjustment. Although the main themes reflect adolescent and adult experiences, there were subtle variations in their sub-themes. Participants' overriding story was of journeying towards acceptance and integration of cystic fibrosis related diabetes into their lives. This included their unpreparedness for the likely onset of cystic fibrosis related diabetes and their struggles to balance the competing demands of living with and managing cystic fibrosis and diabetes. Conclusions: The diagnosis of cystic fibrosis related diabetes and its incorporation into daily life is challenging for many people with cystic fibrosis. Review findings indicate opportunities for cystic fibrosis related diabetes interventions pre-diagnosis, at diagnosis, and during ongoing management, which need integrating into routine cystic fibrosis care.
AB - Background: Improved survival rates for people with cystic fibrosis have led to increased rates of co-morbidity, of which diabetes is the most common. Cystic fibrosis related diabetes affects 19% of adolescents and up to 50% of adults, although little is known about their experiences of this co-morbidity. Aims: To investigate the experiences of living with and managing cystic fibrosis related diabetes among adolescents and adults. Methods: Systematic review and thematic analysis of qualitative evidence. Results: Six studies, rated good quality, were included in the review and four main themes emerged from the data: knowledge and understanding; emotional and social impact; balancing both conditions; acceptance and adjustment. Although the main themes reflect adolescent and adult experiences, there were subtle variations in their sub-themes. Participants' overriding story was of journeying towards acceptance and integration of cystic fibrosis related diabetes into their lives. This included their unpreparedness for the likely onset of cystic fibrosis related diabetes and their struggles to balance the competing demands of living with and managing cystic fibrosis and diabetes. Conclusions: The diagnosis of cystic fibrosis related diabetes and its incorporation into daily life is challenging for many people with cystic fibrosis. Review findings indicate opportunities for cystic fibrosis related diabetes interventions pre-diagnosis, at diagnosis, and during ongoing management, which need integrating into routine cystic fibrosis care.
KW - cystic fibrosis
KW - cystic fibrosis related diabetes
KW - healthcare interventions
KW - life experience
KW - qualitative review
UR - http://www.scopus.com/inward/record.url?scp=85141550556&partnerID=8YFLogxK
U2 - 10.1177/17449871221116970
DO - 10.1177/17449871221116970
M3 - Article
AN - SCOPUS:85141550556
SN - 1744-9871
VL - 27
SP - 735
EP - 753
JO - Journal of Research in Nursing
JF - Journal of Research in Nursing
IS - 8
ER -
