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Developing a follow-up survey focused on participation of children and youth with acquired brain injuries after discharge from inpatient rehabilitation

Abstract

Objective: To describe the development and content of a follow-up survey designed to monitor needs and outcomes of children and youth with acquired brain injuries (ABI) and their families after discharge from inpatient rehabilitation. Preliminary findings pertaining to the core measure of the survey that focused on participation in home, school and community life will be presented as well.

Methods: The follow-up survey was completed by sixty caregivers of children with ABI discharged from one pediatric inpatient rehabilitation program in the Northeast, USA. Time since discharge ranged from 4 months to 6.5 years. Children's ages at discharge ranged from 4 months to 21~years and at follow-up ranged from 3 to 27 years.

Results: Preliminary evidence of reliability, internal consistency and criterion-related validity was demonstrated for the participation measure. Results from exploratory factor analyses and Rasch analyses suggest that the participation measure may be measuring essentially one construct that may encompass two dimensions: Participation in movement-related activities and participation in communication and school-based social activities. Age, activity performance and child and environmental factors were associated with children's overall extent of participation.

Conclusions: The results presented are preliminary yet promising. The follow-up survey is being further developed and tested. Future research also will investigate clinical utility, differences in scores among children and youth with different diagnostic conditions, and feasibility of creating separate versions of the participation measure for different age groups.