article · Scientific Reports
Caregivers of children with chronic illnesses face significant challenges, but assessment tools for health-related quality of life have lacked Swahili adaptations. To address this gap, the Pediatric Quality of Life Inventory family impact module was translated, culturally adapted, and evaluated among 204 primary caregivers of children with heart disease at a national cardiac referral centre in Tanzania. Psychometric testing revealed excellent internal consistency and sound construct validity. Multivariable analysis showed that socioeconomic status served as the only consistent predictor of caregiver quality of life. Furthermore, caregivers of children who had received surgical intervention reported significantly higher quality of life scores compared to those caring for children who had not undergone surgery. The Swahili version provides a reliable and culturally suitable instrument to evaluate family well-being in clinical settings.
Measuring the well-being of families caring for ill children requires assessment tools adapted to local languages and cultures. Validating this instrument in Swahili enables healthcare teams to reliably measure the burden on caregivers, capture the broader family benefits of paediatric heart surgery, and better allocate clinical and social support based on socioeconomic and medical needs.
The translated instrument is an applied and tested clinical assessment tool ready for immediate adoption by hospitals, clinical research organisations, and healthcare monitoring programmes. While it serves primarily as an operational health measurement asset rather than a conventional commercial product, it can be integrated into digital health platforms and clinical trial outcome frameworks serving Swahili-speaking healthcare environments.
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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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DOI: 10.1038/s41598-025-04838-z
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