Recognizing and Tracking Pain, in Children with Developmental Disabilities: Part Two: AAMR Promotes Progressive Policies, Sound Research, Effective Practices, and Universal Human Rights for People with Intellectual Disabilities

Article excerpt

There is a growing recognition that it is important to know how to recognize pain in children, especially non-verbal children with developmental disabilities, and ways to help manage the pain.

Parents know their child best and are the best advocates for their child and their child's pain management. As we state throughout this column, it is important to know how to assess whether your child is in pain, how bad the pain is, where the pain is located and what works best for your child's pain. (This latter point will be addressed more fully later in this series.)

Pain is an individualized experience. We all experience pain at some time in our lives and how that pain affects the quality of our life and what measures work to decrease or eliminate the pain will differ for every person.

Individuals have different ways of expressing their pain. If someone says that they are having pain, believe them, no matter what their cognitive ability, because they are experiencing pain.

There are no ideal assessment tools available for children with developmental disabilities, so it is important to find something that works best for your child. Research has shown that children with developmental disabilities are assessed less often for pain, have their pain level underestimated and are given less pain medication than children without developmental disabilities by health care professionals. However, hospitals and physicians' offices also have a new appreciation of pain in all patients and healthcare personnel are learning to be more sensitive to pain relief needs.

In this column, we will explain ways to recognize and assess pain, manage the pain and advocate for proper control of pain in children with developmental disabilities.

Recognizing and Assessing Pain

There are a number of ways that a child tells us that he or she is in pain. In infancy, that way is to cry, although it is often difficult to know where the pain is. As the child gets older, they learn words that they can use to tell us they have pain, where the pain is located and to describe how the pain feels (e.g., stabbing, sharp, dull, all over, etc.). A child with developmental disabilities may not be able to do this. It is important that parents be able to recognize when their child is in pain. A list of these physical signs are given below:

* Increased crying, that may be inconsolable

* Facial grimaces not regularly seen

* Increased physical movements which may include self-injurious behaviors (e.g. biting)

* Rocking and/or head banging

* Increased sounds, such as grunting

* Less playful

* Change in eating habits

* Change in mood, depressed, sad, irritable, withdrawn, and/or less cooperative

* Flushed skin

A health professional may also note that there may be a rise in temperature, an increase in blood pressure and a higher heart rate.

Children who are verbal and know words to use for pain may choose not to tell a parent that they are in pain. This may be because they think the parent already knows that they do not know what to do and/or they are scared that if they tell they will have to see a health care professional, go to the hospital and/or have a procedure (e.g., a shot) that will further be painful. Other children may not know the words to use to tell about their pain and are poor reporters of where it hurts and how much it hurts. Parents should be aware that some neurological conditions affect pain sensors and the sensation of the pain for the child is altered.

Here are some questions that you can ask your child:

* Tell me about a time when you had pain before. …