Psychometric validation study demonstrates strong reliability of an adapted uncertainty scale among parents of children with genetic conditions, suggesting utility for guiding family-centered care.
Background: Parents' inability to generate meaning in events related to their child, especially a chronic illness, leads to uncertainty. This could negatively impact the management and outcome of their child and family well-being. Nevertheless, there is no available tool to measure parental uncertainty in Indonesia. Objective: The study aimed to evaluate the validity and reliability of the Indonesian version of the Parent's Perception of Uncertainty Scale (PPUS) using an exploratory approach. Methods: This was a psychometric properties study conducted in 2020 among parents of children with genetic conditions, i.e., congenital adrenal hyperplasia (CAH), type 1 diabetes mellitus (T1DM), and Down syndrome (DS), recruited from pediatric endocrinology clinics in secondary and tertiary hospitals, and a genetic research center in Semarang, Central Java, Indonesia. The original PPUS was translated and back-translated into Indonesian and English. Principal Axis Factoring (PAF) was performed to measure its validity and reliability. IBM SPSS version 26 and JASP version 0.18 were utilized to perform descriptive and parallel analysis, respectively. Partitioning Around Medoids (PAM) was analyzed using RStudio version 2026.05.0 on R version 4.6.0. Results: < 0.01). The Indonesian version of PPUS comprised 24 items forming three subscales, i.e., Ambiguity, Unpredictability, and Lack of Clarity (α = 0.839). Conclusion: Despite requiring further refinement in a homogeneous sample, the Indonesian PPUS demonstrated potential use in research on parental uncertainty and proposing future nursing interventions aimed at improving family-centered care.
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Larasati et al. (2026) studied this question.
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