Working with Cystic Fibrosis
File version
Author(s)
Sufian, BS
Passamano, JA
Griffith University Author(s)
Primary Supervisor
Other Supervisors
Editor(s)
Bush, Andrew
Amaral, Margarida D
Davies, Jane C
Simmonds, Nicholas J
Taylor-Cousar, Jennifer L
Ranganathan, Sarath C
Date
Size
File type(s)
Location
License
Abstract
The number of people with cystic fibrosis (CF) graduating from high school and pediatric care has rapidly increased. With improved survival, fulfilling meaningful lives through education, careers, relationships and having a family are now opportunities most people with CF can contemplate and drive toward. Planning for the future is a key component for care providers to broach at all stages of care delivery for individuals with CF from the newborn to the older adult. This chapter explores key areas of the lives of adolescents and adults with CF and includes career choices, independent living, health insurance, social security and disclosing a CF diagnosis. While it is recognized that health insurance and social safety nets vary by country, we have used the systems in Australia, Canada, United Kingdom and United States to demonstrate similarities and differences for care coverage. The work also discusses the impacts of choosing a career in healthcare for a person with CF and the likely impacts of enhanced quality of life with the prescription of CF transmembrane conductance regulator modulators to a growing proportion of the CF population. Lessons of virtual care delivery especially during the pandemic are also discussed, as well as how these lessons may support the adult with CF to pursue education, careers and to live their lives to the fullest.
Journal Title
Conference Title
Book Title
Hodson and Geddes’ Cystic Fibrosis
Edition
5th
Volume
Issue
Thesis Type
Degree Program
School
Publisher link
Patent number
Funder(s)
Grant identifier(s)
Rights Statement
Rights Statement
Item Access Status
Note
Access the data
Related item(s)
Subject
Persistent link to this record
Citation
Bell, SC; Sufian, BS; Passamano, JA, Working with Cystic Fibrosis, Hodson and Geddes’ Cystic Fibrosis, 2023, 5th, pp. 465-476