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

Autor/inn/en	Nesser, Whitney; Grace Yi, Eun-Hye; Wotring, Amy J.; Hutchins, Matthew D.; Snyder, Scott
Titel	A Partial Picture, without a Frame: Measuring Quality of Life in Cystic Fibrosis Caregivers
Quelle	In: American Journal of Health Education, 54 (2023) 3, S.233-241 (9 Seiten) PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Nesser, Whitney) ORCID (Grace Yi, Eun-Hye)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1932-5037
DOI	10.1080/19325037.2023.2186984
Schlagwörter	Quality of Life; Chronic Illness; Genetic Disorders; Caregivers; Measurement Techniques; Measures (Individuals); Physical Health; Mental Health; Interpersonal Relationship; Religion; Health Education; Stress Variables; Daily Living Skills; Environment + Suchen Sie Ihr Suchwort? Lebensqualität; Chronic disease; Chronische Krankheit; Caregiver; Carer; Betreuungsperson; Pfleger; Messtechnik; Messdaten; Gesundheitszustand; Psychohygiene; Interpersonal relation; Interpersonal relations; Interpersonelle Beziehung; Zwischenmenschliche Beziehung; Gesundheitsaufklärung; Gesundheitsbildung; Gesundheitserziehung; Alltagsfertigkeit; Umwelt
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. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01