Assessing mental health of people with complex communication needs : A systematic review

Mental health is “a state of wellbeing” as per the World Health Organisation. People with disabilities generally experience poorer wellbeing than those without disabilities. Instruments which assess wellbeing or its three core components (emotional, psychological, social) may be less accessible or appropriate for people with complex communication needs (CCN). This study aimed to identify and describe instruments used to measure wellbeing in people with CCN. A systematic review following PRISMA guidelines was conducted. Six databases were searched to identify studies where wellbeing was measured in people with CCN. Two reviewers extracted data to describe the studies, participants, instrument(s) used, and adaptations applied. Instrument items were then mapped to indicators of mental health. Twenty-six studies were included. Participants’ receptive language ranged normal to profoundly impaired and they used a variety of expressive communication methods. Twenty-two different instruments were identified; ten of which were quality-of-life measures. Adaptations were made to instruments in eight studies, mostly to administration procedures. Item mapping revealed that while some wellbeing indicators were represented within the included instruments, coverage was insufficient to consider any instrument a “measure of wellbeing” for this population. Some instruments had features which made them more appropriate for people with CCN: ensuring communication access; recognising the relative importance of wellbeing indicators to an individual; collecting information from multiple sources when using proxy-report; and acknowledging environmental factors. Research is required to develop or adapt an instrument for valid and reliable measurement of wellbeing in people with CCN, ensuring the instrument addresses their communication access needs.

© 2025 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).