Parental Uncertainty About a Child’s Health Scale (PUCHS): Development and Validation of a Novel Measure

Abstract

Importance Understanding perceptions of uncertainty among parents of children with chronic conditions—and health care providers’ opportunities to help parents effectively cope—is limited by existing measures. Objective To develop a novel, outcomes-oriented scale to measure parental perceptions of uncertainties about the health of a child. Design, Setting, and Participants Informed by existing literature and interviews with parents, items were generated to capture disease-centered uncertainties (about diagnosis, prognosis, treatment) and patient-centered uncertainties (about familial, reproductive, social, and existential implications). After pilot testing, the Parental Uncertainty About a Child’s Health Scale (PUCHS) was administered in 3 studies assessing parental uncertainty in the context of caring for a child with an undiagnosed medical condition. Data from 2 studies (n = 149) were used to refine the hypothesized measurement model, and data from a third study (n = 417) were used to conduct a confirmatory factor analysis to determine the fit of the resulting measurement model. Results A 4-factor model (diagnostic, therapeutic, familial, social) satisfied overall model fit statistics and structural validity as indicated by standardized loadings, reliability, and variance extracted for each of the constructs. Additionally, each of the constructs satisfied convergent and discriminant validity. These findings across multiple samples in varying contexts suggest that the model demonstrates configural invariance across applications. Conclusions As a valid, reliable measure of parental uncertainties about children with chronic undiagnosed medical conditions, the PUCHS will advance understanding and thereby inform development of interventions to manage uncertainties. Communication of these uncertainties and their effective management are fundamental components of patient-centered care.