Evaluating the 'Parental Understanding of Neurodisability Questionnaire' as a measure of change

Abstract

This thesis aimed to provide a second validation phase of a recently developed measure: the Parental Understanding of Neurodisability Questionnaire (PUN-Q) (Moran et al., submitted). The PUN-Q is a thirteen item self-report questionnaire measuring parents’ understanding of their child’s neurodisability. This thesis prospectively validated the PUN-Q over three time points, prior to and following a child’s attendance at a Tier-Four paediatric diagnostic assessment, for queries regarding social communication. Four main aims were investigated: 1) to establish prospective Construct Validity by comparing the PUN-Q to two other parent-report measures (perceived self-efficacy and parenting stress); 2) to examine test-retest reliability of the PUN-Q by comparing two pre-assessment time points; 3) to examine whether the PUN-Q is sensitive measuring potential pre-and-post assessment changes to parental understanding; 4) to explore the relationship between the PUN-Q and child emotional, behavioural and social communication difficulties. These objectives were addressed using data collected from 37 parents, due to time constraints the study was underpowered at Times two and three (n=26, n=11, respectively); bootstrapping confidence intervals were therefore estimated for non-parametric data. Evidence was provided for Construct Validity at Time 1, but not at Time 3. Test-retest reliability was suggested for the PUN-Q between two non-intervention time points. Results suggested that the PUN-Q is responsive to changes over time, and that the clinic’s diagnostic assessment is effective in enhancing parental understanding. The PUN-Q was not shown to be related to child-related outcomes. These preliminary results suggest that the PUN-Q is an important measure that can reliably and conveniently measure parental understanding of their child’s neurodisability symptoms. This study suggests a role for parental understanding within a wider model of parenting stress and coping with disability. Further validation is needed to allow dissemination to the wider neurodisability service, and to less complex symptom presentations.