Development and preliminary validation of the challenges of living with cystic fibrosis (CLCF) questionnaire: a 46-item measure of treatment burden for parent/carers of children with CF.

Glasscoe, C., Hope, H. F., Lancaster, G. A., McCray, G., West, K., Patel, L., Patel, T., Hill, J., Quittner, A. L. and Southern, K. W. (2023) Development and preliminary validation of the challenges of living with cystic fibrosis (CLCF) questionnaire: a 46-item measure of treatment burden for parent/carers of children with CF. Psychology & Health, 38 (10). pp. 1309-1344. ISSN 1476-8321 doi: 10.1080/08870446.2021.2013483

Abstract/Summary

Treatments for cystic fibrosis (CF) are complex, labour-intensive, and perceived as highly burdensome by caregivers of children with CF. An instrument assessing burden of care is needed. A stepwise, qualitative design was used to create the CLCF with caregiver focus groups, participant researchers, a multidisciplinary professional panel, and cognitive interviews. Preliminary psychometric analyses evaluated the reliability and convergent validity of the CLCF scores. Cronbach's alpha assessed internal consistency and t-tests examined test-retest reliability. Correlations measured convergence between the Treatment Burden scale of the Cystic Fibrosis Questionnaire-Revised (CFQ-R) and the CLCF. Discriminant validity was assessed by comparing CLCF scores in one vs two-parent families, across ages, and in children with vs without ( ). Six Challenge subscales emerged from the qualitative data and the professional panel constructed a scoresheet estimating the Time and Effort required for treatments. Internal consistency and test-retest reliability were adequate. Good convergence was found between the Total Challenge score and Treatment Burden on the CFQ-R ( =-0.49,  = 0.02,  = 31). A recent infection signalled higher Total Challenge for caregivers ( (23)11.72,  = 0.002). The CLCF, developed in partnership with parents/caregivers and CF professionals, is a timely, disease-specific burden measure for clinical research.

Item Type	Article
URI	https://reading-clone.eprints-hosting.org/id/eprint/104208
Item Type	Article
Refereed	Yes
Divisions	Life Sciences > School of Psychology and Clinical Language Sciences > Department of Psychology
Uncontrolled Keywords	treatments, measure development, cystic fibrosis, 2226, caregivers, treatment burden, children
Publisher	Taylor & Francis
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