GMHC Treatment Issues 1997 Jul/Aug 1; 11(7/8): 17
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instituted, but the child remains withdrawn.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
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
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.
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
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
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.
* Mild pain: acetaminophen or nonsteroidal anti-inflammatory
drugs (NSAIDs such as ibuprofen or naproxen).
* Moderate pain: continue NSAIDs or acetaminophen and add a
mild opioid such as codeine.
* 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
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.
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.
Anand KJS, Hickey PR. The New England Journal of Medicine.
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Breitbart W et al. Pain. May-June 1996; 65(2-3):243-9.
Czarniecki L et al. PAAC Notes. 1993; 5:492-5.
Czarniecki L et al. Pain in HIV/AIDS (48-52). Washington, D.C.,
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Eland JM, Anderson JE. The experience of pain in children.
Pain: a Sourcebook for Nurses and Other Health Professionals.
Boston, Little, Brown, 1977.
Hewitt DJ et al. Pain. April 1997; 70(2-3):117-23.
Hirschfeld S et al. Pediatrics. September 1996; 98(3 Pt
Lebovitz A et al. Clinical Journal of Pain. September 1989;
O'Neill W, Sherrard J. Pain. July 1993; 54(1):3-14.
Pediatric Supportive Care/Quality of Life Committee of the
NIAID's Pediatric ACTG, (1995). "Enhancing supportive care and
promoting quality of life: clinical practice guidelines.
Pediatric AIDS and HIV Infection: Fetus to Adolescent," 6,
Schecter N. Pediatric Clinics of North America. August 1989;
Singer BJ et al. Pain. July 1993; 54(1):15-9.
* National Pediatric & Family HIV Resource Center, University of Medicine
and Dentistry of New Jersey