A five-year-old boy enters the hospital and remains curled in a fetal position, face to the wall, refusing to talk. Medical interventions to treat the reason for the admission are instituted, but the child remains withdrawn. Given the stage of illness, a trial of round-the-clock pain medication is given, and he begins to get up, go to the playroom and enjoy life again.

A three-year-old girl, finished with the physical exam, chooses an animal pop-up book to "read" while the phlebotomist prepares to draw blood. Grandma sits with the child in her lap asking about all the animals, distracting the child's attention away from the procedure. After a moment's focus upon the needle "stick," she exhales a deep breath to "blow the hurt away" and the procedure is over. With a hug from Grandma and the technician, the child replaces the book and waves good-bye 'til the next visit.

Children with HIV/AIDS experience pain throughout the course of the disease. Initially, periodic pain associated with procedures may be tantamount, but as disease progresses and children reach the end of life, pain and pain management become more complex. Historically, pain in children has been underrecognized, underreported and undertreated (Schecter, 1991; Eland, 1977). For children living with HIV, history is repeating itself.

There has been little research done in the area of pediatric HIV and pain. Although there are few reports in the literature, clinicians who have cared for large numbers of children with HIV recognize pain as a serious problem. In adults with HIV, pain is a frequently reported symptom during all stages of disease (O'Neill & Sherrard, 1993; Hewitt, 1997). Patients report headaches, mouth and throat pain, chest pain, myalgia (muscle ache), peripheral neuritis, arthralgia (joint pain) and the pain associated with medical procedures (O'Neill & Sherrard, 1993; Lebovitz, 1989; Singer, 1993). Like patients with cancer and other diseases, pain in patients with HIV has been severely undertreated (Breitbart, 1996).

A few studies document that children with HIV also have similar types of pain. Hirschfeld et al. (1996) reported a pain incidence of 59% in 61 children with HIV infection as compared to an incidence of 47% in children with cancer. Types of pain experienced by children with HIV include headache, abdominal pain, oral cavity pain, neuromuscular pain, peripheral neuropathy, chest pain, earache, odynophagia (pain while swallowing), myalgia and arthralgia (Czarniecki, 1993).

Yet barriers to recognition and treatment of pain are considerable. Despite increasing research to the contrary (Anand, 1987), myths regarding children's pain persist. Some clinicians continue to believe that children do not experience pain. The belief that nerve cell myelination was incomplete in infants and young children has resulted in the erroneous assumption that children do not experience the same kind or intensity of pain as adults, and therefore do not need the same pain prevention (anesthesia) or pain relief (analgesia). A second myth is that children do not remember painful experiences. "The sooner we get this over with, the sooner he'll forget" is a common attitude when performing painful procedures. Anyone who has witnessed a three year old begin to cry at the sight of the hospital entrance knows that children do remember and associate their pain.

A third myth is that children cannot tell where it hurts. It is true that children may not have the same vocabulary, and much of what is communicated may be nonverbal, but using reliable pain assessment tools (such as the Eland coloring tool) allows children to communicate the location, frequency and intensity of their discomfort. As children, clinicians and family members become increasingly familiar and competent in the use of such tools, a better understanding and subsequent management of children's pain can be expected. Pain assessment should be as routine a component of data collection as vital signs.

The assumption that children who watch TV, play or sleep must not be in pain is also a myth. As with adults who distract themselves from noxious stimuli, so do children find a way to focus attention away from the pain. Sleep, unfortunately, is a too common remedy used by children to escape from pain.

Managing Pain

The effective treatment of pain in children with HIV/AIDS can be challenging. Developing an appropriate pain management strategy may include pharmacologic and nonpharmacologic (complementary) therapies tailored to a child's age, development, culture, type of pain and past experience.

Specific barriers can sometimes hinder clinicians. Children may be nonverbal because of age or neurologic complications, and cannot self-report their pain. But even when the children do express themselves, parents and health care professionals may deny a child's pain because it represents progression of disease. Also, families who have a history of substance abuse may be very resistant to the use of opioid analgesics for fear of addiction.

Effective pain management requires several essential components. First, pain must be recognized. Pain is whatever the child says it is and wherever the child says it hurts. When there is a reason to suspect pain, but the child is unable to communicate due to age or cognition, a trial of pain management should be offered. Using the example of the five-year-old boy, it is clear that the responsibility for considering pain as the source for signs of depression is the clinician's. Children express pain in a number of different ways. Besides crying, grimacing or thrashing about, children with chronic pain may simply become withdrawn, quiet, depressed, inactive and anorectic.

Secondly, pain should be treated even as the underlying cause is being determined. Reluctance or refusal to medicate a child in acute pain for fear of "masking the symptoms" is neither ethically acceptable nor medically indicated. The family of a child doubled over with acute abdominal pain should expect that a correct diagnosis will be based upon appropriate medical and laboratory evaluations and not solely on a pain assessment. Even when a specific diagnosis for pain is elusive, which is not uncommon for children with HIV, pain relief is essential.

Lastly, the backbone of good pain management is the appropriate use of analgesics according to a pain ladder (Pediatric Supportive Care/Quality of Life Committee, 1995). The following is based upon the World Health Organization guidelines.

  1. Mild pain: acetaminophen or nonsteroidal anti-inflammatory drugs (NSAIDs such as ibuprofen or naproxen).
  2. Moderate pain: continue NSAIDs or acetaminophen and add a mild opioid such as codeine.
  3. Severe pain: continue NSAIDs or acetaminophen and add a strong opioid such as morphine, oxycodone or fentanyl.

The dose of opioids to achieve pain relief can go very high. Longer-acting opioids such as liquid methadone or time-released morphine can be used once the correct dose is determined by using short-acting morphine. The fentanyl patch, a transdermal system that provides timed-released fentanyl over three days, has been extremely helpful for opioid-experienced patients who cannot tolerate oral medications. Whenever a long-acting agent is administered, the patient must also be given prescriptions for a short-acting opioid for breakthrough pain. As tolerance develops, the clinician can calculate the 24-hour requirement for short-acting medication and adjust upward the long-acting opioid.

Certain adjuvant medications such as anticonvulsants and antidepressants have been found useful for neuropathic pain. Hydroxyzine, which can help with nausea, also has an analgesic affect and can reduce the amount of opioid required. Side effects of opioids such as nausea, constipation, itching and drowsiness should be anticipated and treated aggressively.

Families must be educated about the difference between physical dependence and addiction. The clinician needs to explore with the patient and family the meaning of pain to them and their previous experience with pain and pain medications. In families where substance abuse exists, the issue must be discussed directly with them and there must be mutual understanding and agreement about the giving of opioid prescriptions.

Anticipating and preventing pain, rather than alleviating existing pain is the goal of appropriate pain management. "Round-the-clock" as opposed to PRN (as needed) dosing maintains a constant analgesic level. The goal is to attain maximum pain relief with minimum side effects. Once pain relief has been attained, it is essential that the schedule be continued and not reduced because the child is now pain-free.

Coping Techniques

Pain is more than a physiologic response to a noxious experience. If we again consider the three-year-old who bursts into tears at the sight of the hospital, it is clear that the discomfort is more than the moment of the needle stick associated with a blood draw. Recognizing that anticipatory anxiety has a profound impact on the child's quality of life, appropriate interventions to decrease the fear associated with the painful procedure should be instituted.

Strategies to meet this need are primarily based upon the child's developmental level. Infants and young children respond to distraction techniques such as bubbles, pop-up books or pinwheels. As children become older, visualization techniques such as imagining the pain controlled by a switch which the child can "turn down" may assist in coping with chronic pain. Visualizing the sights, sounds and smells of a visit to Grandma's house may allow the child to relax, thereby decreasing the muscle tension associated with acute pain. More sophisticated interventions, such as altering the level of consciousness and attaining a deep state of relaxation through hypnosis require professional training but can make a significant impact on pain control, particularly for children with chronic pain.

Nonpharmacologic interventions can be enormously successful but should never be used in place of appropriate pharmacologic pain management. The use of a topical anesthetic, such as EMLA cream, 2.5 grams applied to the venipuncture site 45 to 60 minutes before the painful procedure (as in the example of the three-year-old) will avoid the development of anticipatory anxiety since the pain will be eliminated. In the meantime stress management techniques can be applied to return control of the experience to the child.

Recognizing, assessing and treating the acute and chronic pain associated with HIV disease in children is frustrating and time-consuming. But successful interventions are both possible and necessary and offer incalculable rewards.


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