A Partial Picture, Without a Frame: Measuring Quality of Life in Cystic Fibrosis Caregivers

Abstract

ABSTRACT Background Significant advances in the treatment of Cystic Fibrosis (CF) have extended life expectancy, increasing the number of CF caregivers who deliver demanding daily treatment regimens and manage uncertainty. With the impact these changes have on CF caregivers, it is critical to understand CF caregiver quality of life (QoL). Purpose To examine how QoL is measured in CF caregiver research and identify which QoL domains from the World Health Organization (WHO) framework are represented in CF caregiver QoL outcomes. Methods Literature published from 2003 to the present was searched to identify all relevant articles in online academic databases related to measurement of CF caregiver QoL. Results Findings suggest there is inconsistency within QoL measurement with CF caregivers and no existing scale accounts for all aspects of CF caregiver QoL from the WHO’s framework. Discussion The disconnect between how CF caregiver QoL is measured and how it is defined presents a challenge in utilizing information gleaned to best provide targeted and relevant services and resources to CF caregivers. Translation to Health Education Practice: A better understanding of caregiver QoL across all WHO domains will allow development of targeted programs to adequately address challenges for CF caregivers.