Understanding Pain in Patients With Intellectual Disabilities

Marilyn Masterson, BA, BSN, MSN, RN, PhD


Am Nurs Journal. 2011;6(10) 

In This Article

Abstract and Introduction


"How would you rate your pain today?" the nurse asks Michael, age 21. Along with autism spectrum disorder (a pervasive developmental disorder), he has intellectual and other disabilities. Michael has been diagnosed with a cancerous tumor about 6 cm in size, which occupies most of his nasopharyngeal cavity. He looks at the pain scale chart and answers in a soft voice without changing expression, "It's a 10."

Like many patients with intellectual disabilities (IDs), Michael rarely demonstrates pain through crying or facial contortions. Would you know how to evaluate his response and intervene appropriately?

If you're an experienced nurse, you might "know" your patient is in pain even if he or she can't communicate verbally. But for Michael and others like him, pain may manifest atypically. Chances are your experiences haven't prepared you to identify pain in ID patients with limited ability to communicate or understand. As a result, you might not know the patient's in pain. Typical indicators, such as crying, grimacing, elevated blood pressure, or tachycardia, may be absent due to central nervous system (CNS) damage accompanying the ID. Although the heart rate or blood pressure may rise in some ID patients, these aren't always reliable pain indicators in those with severe ID. What's more, a fast pulse or high blood pressure also may stem from infection or stress. In addition, some patients with IDs exhibit self-injurious behaviors, which some professionals may mistakenly interpret as insensitivity to pain. In fact, these inappropriate behaviors may be a response to pain.

Early assessment and appropriate intervention for pain can enhance the quality of life for those with IDs. Unfortunately, these patients are less likely to see healthcare practitioners regularly or have their pain recognized and treated promptly, especially if they're nonverbal. They're also more likely to suffer chronic medical conditions and subsequent illnesses related to some facet of their disability. For instance, those with cerebral palsy are likely to have multiple musculoskeletal impairments, which may require range-of-motion and stretching exercises—leading, in turn, to significant pain. In persons with limited ability to move on their own, injections, infections, and other conditions may cause discomfort. Even worse, these patients are at increased risk for injuries, such as compromised skin integrity, due to incontinence or infrequent position changes.


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