IMPROVING THE EXPERIENCE OF LIVING WITH CYSTIC FIBROSIS: A STUDY ON THE DESIGN OF PRODUCTS AND SERVICES USED IN THE MANAGEMENT OF THE DISEASE

Date

2023-6-13

Author

Palamut, Yaren

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Living with cystic fibrosis (CF) is associated with numerous challenges, in terms of diagnosis, treatment, healthcare transition and management. Since it is a progressive and life-threatening disease, requiring time-consuming and overlapping treatment regimens, with the median predicted age of survival around 45 years, the research studies mainly focus on the physical well-being of people with CF. This includes efforts to improve life expectancy and develop new treatments and therapies. To understand the experience of living with CF along with the impact of CF on overall well-being (social, emotional, physical and mental), and to explore the needs and expectations of people with CF regarding the products and services used in the management of CF, in-depth research on CF, treatment-related needs and well-being patients was reviewed. The products and services used in the management of CF, including those for airway clearance, hygiene, and exercise, as well as mobile applications and conceptual design projects, were examined. The aim was to gain insights into the daily life of CF patients, including contributing stakeholders in the management of CF, to provide design insights on the areas of improvement regarding the products and services. A two-staged study (first stage: an online questionnaire; second stage: semi-structured in-depth interview and a collaborative activity) was conducted. In the analysis of the gathered data, a combination of quantitative and qualitative methods was used. This thesis provides a comprehensive understanding of the experience of living with CF and explores areas in the management of CF to improve the quality of life.

Subject Keywords

Cystic Fibrosis, Management of cystic fibrosis, Well-being, Airway clearance products

URI

https://hdl.handle.net/11511/104507

Collections

Graduate School of Natural and Applied Sciences, Thesis