Talking Mats as a Self-Reporting Pain Assessment Tool for Children and Young People with Cerebral Palsy.

Our thanks for this guest blog go to Meredith Smith, Paediatric Physiotherapist and Lecturer in Physiotherapy in the School of Allied Health Science and Practice at the University of Adelaide. In this blog, Meredith talks about the development of a Talking Mats resource to facilitate self-reporting in pain assessments for children and young people with cerebral palsy.

Our research team has been working on modifying pain assessment tools so they are more appropriate, relevant and accessible to children and young people with cerebral palsy (CP). People with CP have varying functional, communication and cognitive abilities, which makes existing assessment tools (often pen and paper questionnaires) difficult to use across the spectrum of ability. As a result, children and young people with CP often don’t have the opportunity to self-report how pain is impacting their function.

We are based in Australia and our team is made up of physiotherapists, an occupational therapist, a medical practitioner, researchers and people with lived experience of CP. One of the first things we did as part of this project was to ask people with lived experience of CP and clinicians what we could do to make two specific pain assessment tools more accessible and relevant to people with CP and different abilities. One of the clinicians (a speech pathologist), suggested we consider a Talking Mat alternative for each of the assessment tools. These two assessments focused on two concepts – 1) how pain interferes with function and 2) pain-related fear. We were keen to focus on these assessments as this would help us to not only open up a conversation about pain with children and young people with CP, but would also provide us with a way of identifying children who might benefit from particular pain interventions, and allow us to monitor the effectiveness of these interventions.

Prior to this suggestion I had heard of Talking Mats but never used it. Our research team underwent Talking Mats foundation training which was excellent, and we were all really impressed with the concept and its application in varying contexts. We had initially thought that we might need a Talking Mat to get feedback from children on the assessment tools, but we all agreed that converting the pain assessment itself into a Talking Mat would make the most sense for now.

Working with the Talking Mats team was a fantastic experience. We all really appreciated the expertise of the consultants in considering how we worded some of the assessment tool items. The symbols created were also excellent, and when we tested them with children and young people with CP they were simple and easy to understand.

Here is an example of a Talking Mat discussing pain interference with function. The lead in phrase is ‘how much does pain get in the way of……’. This Talking Mat was easily understood by most children with CP, even those with moderate cognitive impairment and complex communication needs.

The second Talking Mat looked at pain related fear, with the lead in phrase ‘pain makes me……’. This was a more challenging and abstract concept, but was much easier to explore using the mat than on a standard pen and paper questionnaire. The Talking Mat versions can be interpreted as a 5-point response scale (the three response options and then two in-between sections), allowing us to still total an overall score for the assessment.

The feedback from children, young people and their families has been very positive. Families of children with cognitive impairment or complex communication needs have shared with us that previously it was assumed that their child could not self-report pain, and often they were asked to proxy-report on their behalf. Parents have told us how difficult it is to proxy-report on personal concepts such as pain-related fear, and that they couldn’t possibly know for certain how pain was making their child feel.

We are in the process of continuing to test the Talking Mats resource and look forward to making the it more widely available in the future.

Keep an eye on our website for more information about the Pain Assessment Resource as this project progresses.

If you are interested in completing Talking Mats Foundation Training, you can find out more here.