Grant: Travel Awards - Institute Community Support

Children with severe motor and communication impairment (SMCI) form less than 1% of Canadian children but account for approximately 10% of pediatric health care expenditures. Their low speech or language and motor capacity make them more vulnerable to social isolation, often resulting in 47% greater wellbeing concerns compared to other children. Yet they are unable to complete self-report assessments (patient-reported outcome measures (PROMs)) that would allow systems to capture this disparity. We aim to identify/appraise options for obtaining wellbeing directly from children with SMCI. A systematic scoping review will be conducted via grey and peer-reviewed databases. Searches will be based on: 1) (non-verbal/non-written) methods for capturing self-expression; 2) wellbeing; and 3) severe impairment. Articles will be excluded if focused on >25 years of age, autism, or typically developing children. Preliminary results from MEDLINE, INSPEC, and Compendex (5353 non-duplicate studies screened) identified 24 potentially suitable options. Three options found accessed wellbeing information directly from the child (observation, microswitch, and a facial expression detection system (FacEx-Comm)). Twelve high technology options were found: switch device, joystick, sensor, physiological measure, chorded keyboard, eye-tracking, FacEx-comm, and a communication jacket. Four low-technology options were found: Picture Exchange Communication System, non-speech-based qualitative methods, interviews, and observations. High-technology options appear too individualized to obtain information from children with SMCI who vary greatly across specific impairments. Utilizing low-technology options may bridge the gap between sender and receiver communication for a greater range of children with SMCI to express their wellbeing. Appropriate options found can be tested and implemented within learning health systems to enhance wellbeing health services for children with disabilities in Canada.