A new ARCH Lab study titled “Response shift in parent-reported disability in children with chronic physical illness: results from the MY LIFE study” looks at how parents report changes in their child’s disability over time when the child has a chronic physical illness. Researchers focused on something called “response shift”—when people change how they think about or rate health and disability as they gain new experiences.
Using data from more than 250 children in the MY LIFE study, parents completed a standard questionnaire about their child’s daily functioning over several years. The researchers examined whether parents’ understanding of their child’s abilities shifted over time in ways that might affect the results.
They found some evidence of small to moderate response shifts, especially in areas like mobility and household activities. This means that parents sometimes adjusted how they judged their child’s abilities as they adapted to their circumstances. However, these shifts were not large enough to meaningfully distort the overall results.
Importantly, the study concludes that these parent-reported measures remain reliable for tracking changes in children’s disability over time. In other words, even though perspectives may evolve, clinicians and researchers can still trust these tools to monitor progress.
These findings support the continued use of standardized questionnaires in long-term studies and clinical care for children with chronic health conditions
