Increasing disability support workers’ capacity to identify pain in people with intellectual disability and limited communication

Dr Stella Koritsas1, Dr Nick Hagiliassis1, Professor Rachael McDonald2, Ms Tessa-May Zirnsak1

1Scope (Aust) – Melbourne, Vic, Hawthorn, Australia, 2Swinburne University, Hawthorn, Australia

Pain in people with intellectual disability is often not recognised and left untreated, which can have a negative impact on quality of life. The aims of this project were to explore whether: 1) an online course can help improve disability support workers’ knowledge about pain in people with intellectual disability, and 2) a checklist can be used to help disability support workers identify pain in this group.

Participants were disability support workers who completed: (1) an online training course about pain in people with intellectual disability; (2) a pain checklist when an adult with intellectual disability that they worked with was content; and (3) a pain checklist when the same person with intellectual disability was experiencing pain. Participants also completed a survey asking them about their knowledge, including what they had learned from the course.

Ninety-eight disability support workers completed the training course and ~70% reported that it helped improve their knowledge.

Pain checklist data indicated there were different patterns of behaviour when the person with intellectual disability was content as opposed to when he/she was thought to be experiencing pain. For example, turning down of mouth, not smiling, and a change in eyes (including squinting of eyes, eyes opened wide, eye frowning) were more common when people were experiencing pain than when they were thought to be content.

The online training course and the pain checklist could be used to increase capacity in disability support workers to identify pain in adults with intellectual disability.


Tessa-May Zirnsak is a Research Assistant at Scope Australia in the Keeping Pain in Check project. She is currently completing her PhD in violence against people with disability at La Trobe University and has worked as a Research Fellow on the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.