Living with cystic fibrosis: Patients' experiences of diagnosis in adulthood

Sharma, Nisha

Abstract

There is a paucity of research investigating what it is like to be diagnosed and to live with cystic fibrosis (CF) in adulthood. Understanding the experiences of these adults and the impact of the condition can provide information to help healthcare professionals deliver appropriate support for their patients. This research aimed to address this gap in the literature. In-depth semi-structured interviews were carried out with sixteen participants (ten females and six males) diagnosed with CF in adulthood. Using thematic analysis, four themes were identified “No, you can’t possibly have CF”, Emotions around diagnosis, “It did kind of take over my life” and “I no longer wish to argue with it”. These themes described participants’ frustrations with their contact with healthcare providers before diagnosis, their ambivalence around their diagnosis, the various impact and challenges faced with day-to-day living, work-life, finances, relationships, fertility, life plans, the future, treatment burden and their acceptance and adjustment to their CF. A key finding was the mismatch between patient need and healthcare provision. The main recommendations made included: 1) raising a greater awareness amongst non-CF specialist healthcare professionals and the general public of the possibility of receiving a CF diagnosis in adulthood, 2) ensuring CF healthcare professionals delivering the news of an adult CF diagnosis have the appropriate training and support and 3) ensuring CF healthcare professionals adequately assess individual’s information needs and provide appropriate and relevant information. The implications for health psychology practice include support for patients to help make sense of the diagnosis, develop adaptive coping strategies and adjust to living with a chronic condition. The role of the psychologist would involve working with specialist CF healthcare professionals through providing educative training, reflective practice and supervision.

Citation

Sharma, N. Living with cystic fibrosis: Patients' experiences of diagnosis in adulthood. (Thesis). University of the West of England. Retrieved from https://uwe-repository.worktribe.com/output/3321017

• Thesis Type: Thesis
• Deposit Date: Sep 27, 2019
• Publicly Available Date: Jul 28, 2020
• Public URL: https://uwe-repository.worktribe.com/output/3321017
• Award Date: Jul 28, 2020