Working to Have a Normal Life With Cystic Fibrosis in an Adherence-Driven Health Care System

Abstract

BACKGROUND: Adults with cystic fibrosis (CF) must continuously manage their condition, while working for a living, and want a normal life. Adherence rates to treatments/medications are less than optimal. Existing theory offers little to explain adherence rates. The purpose of this study was to develop a theory to further the understanding of how people with CF manage their condition in an adherence-driven health care system. METHODS: Constructivist Grounded Theory methodology was used to conduct 27 semistructured interviews with adults with CF, family members, and health care providers. Data collection and analysis were simultaneous, using constant comparative methods, initial and focused coding, and category identification and reduction to develop a theory. RESULTS: Doing what works to balance life and CF is the theory generated from this study. The main concern of participants was to be seen as normal. The theory depicts what participants with CF and their family members do about their concerns and involves 4 interrelated processes: working overtime, receiving support, passing as normal, and facing disease progression. CONCLUSION: Participants did not relate to the term nonadherent; rather they described working overtime to manage CF, to work, and to have a normal life. Health care provider and researcher perspectives on adherence differ from those of people with CF. Engaging adults with CF and health care providers in a dialogue in which expectations are shared may lead to individualized treatment regimens that work, because adults with CF will do what works.

Cystic fibrosis-related diabetes (CFRD) and cognitive function in adults with cystic fibrosis

“…completing tasks at work etc.) may require more effort in those with CF compared to healthy peers (82) and cognitive performance is likely to be worsened during pulmonary exacerbations (14). This resonates with patient-reported indicators of a pulmonary exacerbation and indicators of improvement, which highlighted the importance of concentration and fatigue (83,84).…”