Facilitating Respite, Communication, and Care for Children With Intellectual and Developmental Disabilities: Preliminary Evaluation of the Caregiver Pain Information Guide

Background: Pain is common in children with intellectual and developmental disabilities (I/DD) and yet is an understudied issue. Respite workers commonly care for children with I/DD but are lacking in resources to assist in pain assessment and management for this population. Without adequate knowledge in this domain, children with I/DD are at risk of their pain being underrecognized and undermanaged. A resource for caregivers was developed to address this issue, facilitating communication between parents and respite workers and better addressing the complex pain-related needs of children with I/DD. The objective of this study was to solicit initial feedback on the content, feasibility, and usability of the resource. Method/Procedure: Semi-structured individual interviews and questionnaires were completed with 7 parents of children with I/DD and 6 respite workers. Results: All participants viewed the resource as important and potentially useful. Content analyses indicated that participants appreciated the comprehensiveness and format of the resource, whereas the modifiability was identified as an area for improvement. Participants believed that the resource would be useful across settings with a variety of caregivers. Three categories of considerations were identified as potential facilitators and barriers for implementation: consideration of how the resource is being completed, who is completing it, and organization-based procedures. Discussion/Conclusions: Results from this study suggest that the Caregiver Pain Information Guide is a promising resource for helping respite workers better understand pain in children with I/DD. Future work is needed on implementation and impact of this resource in community settings.