Translation and validation of the Swahili pediatric quality of life family impact module for caregivers of children with congenital heart disease

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Abstract
The Pediatric Quality of Life Inventory™ (PedsQL™) family impact module is a widely used tool for assessing the health-related quality of life (HRQoL) of caregivers of children with chronic illnesses; however, it has not been available in Swahili. This study aimed to translate, culturally adapt, and validate the Swahili version of the PedsQL family impact module (FIM) among caregivers of children with heart disease in Tanzania. As a secondary aim, the study explored differences in caregiver HRQoL between those whose children had undergone surgery and those who had not, using the newly translated tool. A cross-sectional survey was conducted among 204 primary caregivers at a national cardiac referral centre. Standardised translation and adaptation procedures were followed. Psychometric evaluation included internal consistency reliability, construct validity through known-groups comparisons, and effect size estimation. The Swahili version demonstrated excellent internal consistency (Cronbach’s α = 0.99) and good construct validity. Socioeconomic status was the only consistent predictor of HRQoL in multivariable models. Caregivers in the operated group consistently reported higher HRQoL scores, highlighting the potential benefit of surgical intervention on family well-being. These findings strongly support the Swahili PedsQL FIM as a culturally appropriate and psychometrically sound tool. It offers promise for clinical care and future outcome evaluations in similar settings.

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