The experience of living with and managing cystic fibrosis related diabetes: a qualitative review

Abstract

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.

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

“…Within the present study, managing nutrition was challenging, with dietary changes resulting in needing to pay more attention to blood glucose levels and insulin doses. Difficulties in dealing with dietary aspects of CFD and balancing it with maintaining weight are not uncommon, 15 but require support and individualised advice as part of routine CF care.…”

“…The first researcher (SC), a dietitian known to the participants, conducted all the semi‐structured interviews, face‐to‐face, between July and October 2017. The interview schedule (Table 2) was developed from existing literature 19–21 and the findings from the meta‐synthesis 15 . The interview schedule was piloted with the first two participants and no amended were required for it use in subsequent interviews.…”

“…The interview schedule (Table 2) was developed from existing literature [19][20][21] and the findings from the metasynthesis. 15 The interview schedule was piloted with the first two participants and no amended were required for it use in subsequent interviews. Participants were encouraged to tell their experiences in their own words; the questions were intended to facilitate this process of gathering rich, in-depth data, rather than narrowing it to predetermine categories.…”

“…It is unclear what the barriers and facilitators are to help people with CF manage the additional demands of CFD, and specifically what interventions are needed to help improve self‐management of CFD. A previous qualitative meta‐synthesis 15 highlighted that individual perception of CFD directly affected its management. Living with CF and CFD is a complex multi‐dimensional process where the two conditions are closely intertwined but difficult to balance.…”

Special Collection Editorial: Nursing through times of challenge and adversity

“…Nurses must adapt to these changing dynamics, empowering patients and engaging them in their own healthcare journey. We believe Collins et al (2022) in their paper ‘exploring the experience of living with and managing cystic fibrosis related diabetes’, eloquently highlight the ever-changing complexities of illness and chronic diseases and the need for nurses to constantly adapt their approaches for patients struggling to live with and manage complex multi-morbid conditions.…”