​​Hosted by SISP student committee, McGill University

& Department of Educational and Counselling Psychology

McMaster Children’s Hospital. Dr. McMurtry’s research and clinical interests focus on acute and chronic pain, medical procedure-related fear, as well as communication and family influences in these contexts.

Mcgill School Psychology Summer Institute © All Rights Reserved.

Pain Management for Those Caring for Children with Intellectual and Developmental Disabilities

​by Olivia Dobso, B.Sc. & C. Meghan McMurtr, PhD 

Sponsored by 

​Pain is a universal experience. We can all relate to the desire to avoid feeling pain. Pain can result from injuries (e.g., a skinned knee from falling), a painful medical procedure like a needle, or maybe due to chronic pain (i.e., pain that lasts for 3+ months). Children with Intellectual and Developmental Disabilities (IDDs) are a vulnerable group who very commonly experience pain, but often, their pain is ignored, misunderstood, or otherwise poorly managed1,2,3.

In order to manage a child’s pain, we must first be able to accurately detect when they’re experiencing pain. Historically, there has been a misconception that people with an IDD are less sensitive to pain compared to those without an IDD4. Misconceptions about pain in children with IDDs likely have complex roots; we’ll briefly explore three potential reasons. First, pain experience (what one feels internally) is not simply determined by the amount of tissue damage, but is impacted by a collection of biological, psychological, and social factors. For example, the crowded, bright, and loud (social) environment of a mass vaccination clinic may exacerbate the pain from a needle poke more for a child with an IDD and sensory sensitivities than it might for a typically developing child.

Second, pain experience is also not the same thing as pain expression (observable behaviours, such as facial expressions). To measure pain, we often focus on self-report, which makes sense given that pain is subjective. But, for children with an IDD, their ability to self-report might be reduced and they may also show their pain differently than we’d expect5. For example, children with an IDD that impacts their communication may have unique non-verbal behaviours that signal they’re in pain6. The child may express pain by whining/moaning (vocalizations), puckering their lips (facial expressions), jumping around, or stiffening up (body movements)6.

Third, like pain expression, children with an IDD may also cope with their pain differently than we’d expect. For example, after a painful event in daily life, a study found children with an IDD displayed less help-seeking behaviour compared to typically developing children7. But this doesn’t mean that the child wasn’t injured or feeling pain. So, as caregivers and service providers, we must 1) be on the lookout for children with IDD’s unique pain expression and coping behaviours, 2) gather self-report when possible, using adapted language and methods if necessary8, and 3) take the pain of children with IDDs seriously.

As pain is biopsychosocial in nature, so too are pain management strategies. For example, see Table 1 for strategies to manage needle-related pain.

Many of the pain management strategies in Table 1 can be effective for children with IDDs, such as using distraction and topical anesthetics to manage needle-related pain3. However, healthcare staff and caregivers have reported that rigidly sticking to protocols, at the expense of accommodating for special needs, is not helpful10. For example, verbal distraction may not be appropriate for a child with communication challenges and a child with sensory sensitivity to touch may require additional support around the use of topical anesthetics.

When it comes to medical procedures, caregivers may also consider seeking healthcare providers who are experienced and comfortable working with children with disabilities11. Lack of awareness about a child’s disability can lead to suboptimal management of their pain12.

Caregivers have a wealth of knowledge when it comes to the pain behaviours of their child with special needs and what helps to relieve their pain5. In particular, caregivers’ familiarity with what their child’s typical/non-pain behavioural state looks like helps them

to accurately assess their child’s pain1. Caregivers of children with IDDs have reported feeling underutilized by healthcare providers when it comes to the assessment and management of their child’s pain1. Therefore, in addition to formal pain assessment and management tools, caregiver knowledge should be embraced as a resource to better understand and treat children’s pain.1,5

Overall, it is important to know that children with IDDs do experience pain, but they may express and cope with it differently than we’d expect. As people caring for children with IDDs, we can help by taking their pain seriously, working together to detect and manage their pain, and accommodating existing pain management strategies to meet the child’s unique needs.

Resources:

• “Psychology Works” Fact Sheet: Pain in Children with Intellectual Disabilities who are Nonverbal. Canadian Psychological Association: https://cpa.ca/docs/File/Publications/FactSheets/PsychologyWorksFactSheet_PainInChildrenWithCognitiveImpairments.pdf
  
• The CARD system resource for managing needle-related pain: https://www.aboutkidshealth.ca/card
  
• Needle fear and needle-related fainting resources: https://pphc.uoguelph.ca/needle-fear-resources/

 
References:

1. Carter, McArthur, E., & Cunliffe, M. (2002). Dealing with uncertainty: parental assessment of pain in their children with profound special needs. Journal of Advanced Nursing, 38(5), 449–457. https://doi.org/10.1046/j.1365-2648.2002.02206.x

2. Knoll, A., McMurtry, C., & Chambers, C. (2013). Pain in children with autism spectrum disorder: Experience, expression, and assessment. Pediatric Pain Letter, Special Interest Group on Pain in Childhood, International Association for the Study of Pain. http://ppl.childpain.org/issues/v15n2_2013/v15n2_mcmurtry.pdf

3. Slifer, K. J., Hankinson, J. C., Zettler, M. A., Frutchey, R. A., Hendricks, M. C., Ward, C. M., & Reedman, J. (2011). Distraction, exposure therapy, counterconditioning, and topical anesthetic for acute pain management during needle sticks in children with intellectual and developmental disabilities. Clinical Pediatrics, 50(8), 688-697. https://doi.org/10.1177/0009922811398959

4. Symons, F. J., Shinde, S. K., & Gilles, E. (2008). Perspectives on pain and intellectual disability. Journal of Intellectual Disability Research, 52(4), 275-286. https://doi.org/10.1111/j.1365-2788.2007.01037.x

5. Carter, B. (2020). Communicating pain: the challenge of pain assessment in children with profound cognitive impairment. Comprehensive Child and Adolescent Nursing, 43(1), 10-14. https://doi.org/10.1080/24694193.2020.1715105

6. Genik, L. M., McMurtry, C., & Breau, L. (2014). “Psychology Works” Fact Sheet: Pain in Children with Intellectual Disabilities who are Nonverbal. Canadian Psychological Association. https://cpa.ca/docs/File/Publications/FactSheets/PsychologyWorksFactSheet_PainInChildrenWithCognitiveImpairments.pdf

7. Gilbert-MacLeod, C. A., Craig, K. D., Rocha, E. M., & Mathias, M. D. (2000). Everyday pain responses in children with and without developmental delays. Journal of Pediatric Psychology, 25(5), 301-308. https://doi.org/10.1093/jpepsy/25.5.301

8. Genik, L.M., Constantin, K., Symons, F., & McMurtry, C.M. (2019). Pain. In J.L. Matson (Ed.), Handbook of Intellectual Disabilities: Integrating theory, research, and practice (pp. 1011-1036). New York, NY: Springer.

9. Taddio, A., McMurtry, C. M., Shah, V., Riddell, R. P., Chambers, C. T., Noel, M., ... & Lang, E. (2015). Reducing pain during vaccine injections: Clinical practice guideline. Canadian Medical Association Journal (CMAJ), 187(13), 975–982. https://doi.org/10.1503/cmaj.150391

10. Taghizadeh, N., Heard, G., Davidson, A., Williams, K., & Story, D. (2019). The experiences of children with autism spectrum disorder, their caregivers and health care providers during day procedure: A mixed methods study. Pediatric Anesthesia, 29(9), 927–937. https://doi.org/10.1111/pan.13689

11. Kupzyk, S., & Allen, K. (2019). A review of strategies to increase comfort and compliance with medical/dental routines in persons with intellectual and

developmental disabilities. Journal of Developmental and Physical Disabilities, 31(2), 231–249. https://doi.org/10.1007/s10882-018-09656-y

12. Liu, J., Chen, L. L., Shen, S., Mao, J., Lopes, M., Liu, S., & Kong, X. (2020). Challenges in the diagnosis and management of pain in individuals with autism spectrum disorder. Review Journal of Autism and Developmental Disorders, 1-1

C. Meghan McMurtry is an Associate Professor in Psychology at the University of Guelph, director of the Pediatric Pain, Health, and Communication Lab, and a Clinical and Health Psychologist with the Pediatric Chronic Pain Program at 

Olivia Dobson is a Master's student in Clinical Child and Adolescent Psychology at the University of Guelph, Ontario. Her research is currently funded by the Autism Scholars Award and the Ontario Graduate Scholarship (2021-22). She holds a Bachelor of Science degree in psychology from Acadia University. Her research aims to understand the experiences of autistic children and their caregivers during needle procedures to find inclusive ways of reducing needle-related fear and pain in this population.

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