Factors associated with quality of life for cystic fibrosis family caregivers

Whitney Nesser; Scott Snyder; Kimberly A Driscoll; Avani C Modi

doi:10.1007/s44192-023-00046-1

Factors associated with quality of life for cystic fibrosis family caregivers

Discov Ment Health. 2023 Oct 16;3(1):20. doi: 10.1007/s44192-023-00046-1.

Authors

Whitney Nesser¹, Scott Snyder², Kimberly A Driscoll³, Avani C Modi⁴

Affiliations

¹ Department of Applied Clinical and Educational Sciences, Indiana State University, 401 N. 7th Street, Room 302B, Terre Haute, IN, 47809, USA. whitney.nesser@indstate.edu.
² School of Education, University of Alabama at Birmingham, Birmingham, AL, USA.
³ Department of Clinical and Health Psychology, University of Florida, Gainesville, FL, USA.
⁴ Center for Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.

Abstract

Cystic Fibrosis (CF) is a genetic and chronic disease affecting 32,100 people in the United States as of 2021, with a life expectancy of 56 years for people with CF (PwCF) born between 2018 and 2022. While there is extensive literature about cystic fibrosis, there are few studies examining the complexity and challenges experienced by family caregivers for PwCF. The aim of this study was to examine the Caregiver Quality of Life Cystic Fibrosis (CQOLCF) scale using data (N = 217) from two separate studies that used the scale to determine if its items represent multiple factors relevant to CF family caregiver QoL. Factor analysis was conducted on the Seven distinct factors were found with analysis of the CQOLCF. Factors were Existential Dread (12%), Burden (11%), Strain (7%), Support (7%), Positivity (6%), Finance (5%) and Guilt (3%). Study findings indicated it is important for healthcare providers and researchers who use the CQOLCF to be knowledgeable and aware of the multiple factors associated with quality of life in this population in addition to an overall quality of life score.