When They Can’t Tell You About the Hurt: Assessing Pain in People with Intellectual or Developmental Disabilities

By Sylvia Foley, AJN senior editor

Coffee Time (detail) / by S.M. Drawing used with permission of family.

When S.M., a 47-year-old resident at a facility for people with intellectual or developmental disabilities, started hitting himself in the left eye, his caregivers weren’t sure why. S.M., whose developmental quotient is equivalent to that of a two- or three-year-old, couldn’t tell them. Some thought he was frustrated at not being allowed to drink as much coffee as he wanted; others thought a recent decrease in his medication—quetiapine (Seroquel)—might be a factor. But a chart review revealed that both his father and brother had a history of cluster headaches. Was S.M.’s behavior an indicator of headache pain? How could clinicians best assess him?

In this month’s CE feature, authors Kathy Baldridge and Frank Andrasik provide an overview of pain assessment in people with intellectual or developmental disabilities, summarize the relevant research, and discuss the applicability of the American Society for Pain Management Nursing practice guidelines for assessing pain in nonverbal patients. The guidelines describe various behavioral pain assessment tools, some of which might be useful with S.M. and others like him. Other assessment methods include

a search for pathologic conditions or other problems or procedures known to cause pain; the observation of behaviors that might indicate pain; and the use of proxy reports (also called surrogate reports) by people who know the person best, whether family caregivers or professionals.

S.M. was encouraged to draw himself and what the “hurt” felt like; two of these drawings illustrate the article (a detail from one is shown above). The authors also profile one facility’s approach to pain assessment of its patients. And they discuss collaborative team solutions with AJN interim editor-in-chief Shawn Kennedy in this podcast interview.

Have you  faced the challenge of assessing pain in patients like S.M.?

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2016-11-21T13:14:41+00:00 December 14th, 2010|Ethics, nursing perspective, pain management|3 Comments

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  1. Barbara H. Portland OR August 2, 2011 at 11:15 am

    When using Tylenol, if nothing else, assess your patient before and after administration, focusing on his body’s response, his breathing or other small and subtle indications that the administration was effective.

    I remember a patient whose only indication he was in pain was his middle finger on his right hand would twitch. He was in a coma. It would stop twitching when we treated him with Tylenol for pain.

  2. Aldouine Lafosse August 1, 2011 at 8:52 pm

    I have found myself in this situation many times. As much as I want to alleviate a patient’s pain, I also do not like to administer medication unnecessarily because of possible side effects. One of my patients is a young man in a vegetative state following head trauma. He has a trach, is on tube feeding, opens and closes his eyes, but the body movements are really muscle spasms. He is on Baclofen and some iron and vitamins. When her mother visits, she always asks us to give him Tylenol liquid which he has as needed. I always give him some Tylenol on my shift, however I keep asking myself if he is really in pain. I suppose so, but how can I be sure?

  3. Barbara H. Portland OR December 14, 2010 at 1:06 pm

    Just doing any assessment is a challenge with those with developmental disabilities. Even those who can verbalize cannot verbalize coherently what they feel or where they feel it. I have found that when I focus on the patient and not completely on the caregiver’s assessment, I get a better picture of my client/patient. I have found that observation is a key component. Pain is one of the hardest to assess.

    While I do not work exclusively with the developmentally disabled, I am guardian to my developmentally disabled sister.

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