Proxy-respondent's Strategies in Answering Questions on Child Disability

Background: Worldwide efforts to improve the availability, quality and comparability of disability prevalence rates stem from the desire for evidence-based policy formation and the need to equitably distribute legally mandated entitlements for disabled persons.  However, there has been a wide discrepancy in the reporting of disability prevalence amongst and within countries. Representatives from UNICEF and the UN’s Washington Group on Disability Statistics developed a set of questions covering 12 domains designed to comprehensively identify the population of children and youth who are at high risk of having disabilities. The purpose of this project was to evaluate the performance of Washington Group’s disability questions and, in particular, to identify cross-national differences in response patterns and processes.

Methods: Cognitive interviews were conducted with a total of 214 individuals in five countries (India, Oman, U.S., Montenegro and Belize). A purposive sample was recruited of parents or guardians of children ages 2 to 17 who may difficulties in seeing, hearing, walking, learning, and/or behavior. Retrospective, intensive verbal probing was used to collect response process data. Data were analyzed using the constant comparative method of analysis.  Analysts used an analysis software tool (Q-Notes) to facilitate data organization and analysis. 

Results:  Respondents relied on four main strategies in order to answer questions about their children’s difficulties: their own assessment, child assessment, professional assessment and comparisons with others. The differences in the ways these strategies are employed impact data quality.