The population of individuals with severe and profound
intellectual disabilities (ID) is extremely heterogeneous, and the unique
pain-related behaviors of each individual might not be satisfactorily captured using a standardized checklist such as the Noncommunicating Children's
Pain Checklist or the Revised Faces, Legs, Arms, Cry, and Consolability tools. There has been increasing appreciation of the importance of recognizing the idiosyncratic
pain behaviors of these individuals. The investigators developed a tool, the Tailored Observational
Pain Screen (
TOPS), to facilitate recognition of
pain in the individual who lacks verbal communication, based on caregivers' descriptions of the individual's unique
pain-related behaviors. The aim of this study was to elicit caregivers' evaluations of this personalized
pain screen, using qualitative analysis of semi-structured interviews. The participants were the primary caregivers of 13 children with severe or profound ID and ongoing
pain issues who were interviewed after they had used the
TOPS for 6 weeks. The investigators identified themes from the interviews, including: using the
TOPS to recognize and evaluate
pain; using the
TOPS to facilitate communication; limitations of the
TOPS; and recommendations for its improvement. For clinical purposes, the
TOPS shows promise as a tool for helping caregivers to share with others the ways that
pain of these children can be detected.