The Impact of Congenital Heart Disease on the families of affected children in African setting: Reliability and the Validity of The PedsQL Family Impact Module- The Swahili Version

Abstract

Background The Pediatric Quality of Life Inventory™ (PedsQL™) Family Impact Module, a valuable assessment tool for health-related quality of Life (HRQoL), is not accessible in Swahili. This study evaluated the construct validity of the PedsQL™ Family Impact Module in assessing HRQoL for Swahili speakers in Eastern Africa, Tanzania, particularly focusing on families of chronic congenital heart disease (CHD) with both operated and unoperated children. Methods The cross-sectional study involved primary caregivers at a national referral cardiac centre. Descriptive statistics for continuous and categorical variables were employed. Translation and cross-cultural adaptation of the Family Impact Module (FIM) were conducted. The "known-groups method" was used to establish construct validity, while internal consistency reliability was assessed using Cronbach's alpha coefficient at a value of ≥ 0.70. HRQoL was measured using a Likert linear analogue scale. Mean scores, standard error of the mean (SEM) and Cohen's d-effect size were used to summarize the results. Group comparisons were made using a t-test, and predictors of HRQoL were analysed using generalized linear models. The significance level was set at a p < 0.05. Results The Swahili version of the FIM for internal consistency showed high reliability (α = 0.99). The module was applied to 204 primary caregivers and was mostly answered by mothers, 74.0% of whom had an average of 9.5 + 3.6 years of schooling. The socioeconomic status (SES) of families was moderate at 0.68 ± 0.17 but statistically significantly higher in the operated group (0.71 ± 0.14; p-value < 0.001): This group also had a significantly higher HRQoL (91.5 vs. 84.7, d = 0.60, p-value < 0.001 and a much better emotional well-being (d = 0.71). Notably, the overall family functioning, particularly the family relations and communication, did not differ between groups. SES and operative status were the only significant predictors of the caregiver’s HRQoL, with p < 0.001. Principally, QoL was not predicted by the child’s age, CHD severity, number of cardiac lesions, medication use, or the parent's level of education. Conclusion The study validated the Swahili PedsQL™ Family impact module for chronic illnesses in the Swahili-speaking population. It highlighted improved quality of life due to cardiac treatment and ongoing issues in communication, family dynamics and functioning post-surgery. Recommendations included health care providers addressing these gaps proactively, advocating community support for affected families and caregivers prioritizing positive family relationships to enhance overall well-being.