Development and validation of a short form psychometric tool assessing the caregiving Challenge of Living with Cystic Fibrosis (CLCF-SF) in a child

McCray, Gareth, Hope, Holly FF, Glasscoe, Claire ORCID: 0000-0003-1600-8202, Hill, Jonathan, Quittner, Alexandra, Southern, Kevin WW ORCID: 0000-0001-6516-9083 and Lancaster, Gillian AA (2023) Development and validation of a short form psychometric tool assessing the caregiving Challenge of Living with Cystic Fibrosis (CLCF-SF) in a child. PSYCHOLOGY & HEALTH, ahead- (ahead-). pp. 1-23.

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Official URL: http://dx.doi.org/10.1080/08870446.2023.2231489

Abstract

<h4>Objective</h4>Caring for a child with cystic fibrosis (CF) is a rigorous daily commitment for caregivers and treatment burden is a major concern. We aimed to develop and validate a short form version of a 46-item tool assessing the Challenge of Living with Cystic Fibrosis (CLCF) for clinical or research use.<h4>Design</h4>A novel genetic algorithm based on 'evolving' a subset of items from a pre-specified set of criteria, was applied to optimise the tool, using data from 135 families.<h4>Main outcome measures</h4>Internal reliability and validity were assessed; the latter compared scores to validated tests of parental well-being, markers of treatment burden, and disease severity.<h4>Results</h4>The 15-item CLCF-SF demonstrated very good internal consistency [Cronbach's alpha 0.82 (95%CI 0.78-0.87)]. Scores for convergent validity correlated with the Beck Depression Inventory (Rho = 0.48), State Trait Anxiety Inventory (STAI-State, Rho = 0.41; STAI-Trait, Rho = 0.43), Cystic Fibrosis Questionnaire-Revised, lung function (Rho = -0.37), caregiver treatment management (<i>r</i> = 0.48) and child treatment management (<i>r</i> = 0.45), and discriminated between unwell and well children with CF (Mean Difference 5.5, 95%CI 2.5-8.5, <i>p</i> < 0.001), and recent or no hospital admission (MD 3.6, 95%CI 0.25-6.95, <i>p</i> = 0.039).<h4>Conclusion</h4>The CLCF-SF provides a robust 15-item tool for assessing the challenge of living with a child with CF.

Item Type:	Article
Uncontrolled Keywords:	Caregiver, child, cystic fibrosis, genetic algorithm, short-form, treatment burden
Divisions:	Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Institute of Life Courses and Medical Sciences
Depositing User:	Symplectic Admin
Date Deposited:	07 Jul 2023 15:04
Last Modified:	15 Mar 2024 02:14
DOI:	10.1080/08870446.2023.2231489
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3171527