Psychometric Properties of Two Measures of Crisis and Distress in Parents of Children With Intellectual and Developmental Disabilities

Abstract

ABSTRACTIntroduction: Parents and their children with Intellectual and Developmental Disabilities (IDD) are under significant amounts of stress (Lecavalier, Leone & Wiltz, 2006). When stress escalates to crisis, some children with IDD are admitted to the emergency department or an inpatient unit. While existing measures evaluate stress over time, we lack a valid measure to assess the experience of crisis. The current study aimed to validate a measure of crisis in a clinical sample of parents of children with IDD. Validating such a measure will provide a precise depiction of a family’s perception of crisis and their relative distress, and improve communication between clinicians and families. Methods: Parents and caregivers of children and adolescents, age 5 to 17 and diagnosed with IDD including autism spectrum disorder completed measures, reporting on their level of caregiver strain (using the Caregiver Strain Questionnaire-CGSQ) and their current level of crisis (using the Brief Family Distress Scale-BFDS). Psychometric data from the BFDS and CGSQ were analyzed to examine aspects of reliability and validity. Results: Results from analyses indicated significant associations between the CGSQ and BFDS and excellent overall internal consistency within the CGSQ. Additionally, the BFDS detected differences between inpatient and outpatient conditions and validly categorized participants into crisis groups. Conclusions: Validation of the BFDS further demonstrates its clinical utility and continues to clarify the experience of parents of children with IDD in times of crisis. Future research should examine the role of problem behavior in crisis and the utility of the BFDS as a measure of change.