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ERIC Number: EJ1387422
Record Type: Journal
Publication Date: 2023
Pages: 9
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1932-5037
EISSN: EISSN-2168-3751
A Partial Picture, without a Frame: Measuring Quality of Life in Cystic Fibrosis Caregivers
Nesser, Whitney; Grace Yi, Eun-Hye; Wotring, Amy J.; Hutchins, Matthew D.; Snyder, Scott
American Journal of Health Education, v54 n3 p233-241 2023
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.
Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A