Ease of Caregiving for Children: A measure of parent perceptions of the physical demands of caregiving for young children with cerebral palsy

The Ease of Caregiving for Children is a parent-completed measure of how difficult it is for them to safely help their children participate in activities of daily living. The objectives of this study were to determine the internal consistency, test-retest reliability, and construct validity (known groups methods) of the Ease of Caregiving for Children and create an interval-level scale. Participants included 429 parents of children with cerebral palsy (CP) and 110 parents of children without motor delay. Children ranged in age from 18 to 60 months. Parents completed the Ease of Caregiving for Children and therapists assessed children's gross motor function. The Rasch model of item response analysis was used to create an interval-level scale. Results indicated high internal consistency and acceptable test-retest reliability. Ease of caregiving varied by children's ages for parents of children without motor delay, however there was no significant difference by age for parents of children with CP. Parents of children with less gross motor ability reported more difficulty in caregiving than parents of children with higher gross motor ability. Rasch analysis for children with CP resulted in a hierarchical ordering of items by difficulty with good fit and logical ordering. Findings support the Ease of Caregiving for Children as a reliable and valid measure of parents' perceptions of their difficulty to safely assist their children to perform activities of daily living. The measure should enable health care providers to assess and provide interventions that address families' needs in caring for their children with CP.