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The child who is hurting
The Child Who Is Hurting Joann M. Eland
EVERAL YEARS AGO, the control of cancer pain was identified as a national health priority. Matthews, Zarro, and Osterholm I identified the five leading causes of severe pain: (1) obstruction of a viscus or vessel, (2) bone infarction and reabsorption, (3) necrosis or inflammation,-(4) invasion or entrapment of nerves, and (5) edema. These same pathologies exist in children but have not been used as an objective data base for documentation of why a child might be hurting. One only need look at the list of intervention strategies to appreciate the extent to which health professionals have attempted to manage what can be a very difficult problem for the cancer patient and family. But these interventions have been applied better to adults than to the pediatric population. When it is a child who is hurting there are problems: Who is to be held accountable for pain control in children? What are the learning priorities of the health care team? What myths about children's pain still prevail? This article will examine these questions and provide some suggestions for assessment and intervention. Accountability for pain control is still a major problem, as is clear from attending medical or nursing rounds. Data are discussed about vital signs, intravenous (IV) flow rates, and diagnostic tests, but rarely are data communicated about pain control. Physicians and nurses are held accountable by peers if the wrong IV solution is ordered or administered but may not be held accountable for failure to achieve adequate pain control. Learning priorities of health care professionals are closely tied to the problem of accountability. The amount of knowledge required of health professionals is so voluminous that priorities must be established. We are rewarded when we learn about fluid and electrolyte balance, acid and base disturbances, shock, and other life-threatening complications. We are not rewarded when we learn about pain control. Learners in clinical set-
S
From the College of Nurshlg, The UniversiO" of Iowa, Iowa
City. Address reprint requests to Joann M. Eland, RN, MA, PhD, 316 Nursing BIdg, The University of Iowa, Iowa City, IA 52242. © 1985 by Grune & Stratton, Inc. 0749-2081/85/0102-0007S05.00/0 116
tings become aware of these priorities and focus their study time accordingly. To add to the problem, there has been a notable lack of information in the literature about children's pain. Prior to 1977 there was no reliable and valid w@ to assess children's pain, and very little research had been done in the area of interventions. Now the practitioner can choose from a variety of visual analogue scales adapted for children or use the Eland Color Tool to assess children's pain. 2"3 The information on interventions remains sparse but is currently the focus of many researchers. MYTHS
Nurses and pbysicians have been plagued with a number of myths surrounding children's pain. 4 Myth No. 1: Children's nervous systems are not the same as aduhs and therefore children do not experience pain with the.intensiO' that adults do. At one point in time, it was thought that myelinization of nerves was essential to the pain fibers' ability to function. This is not true, and in fact there are data to support the exact opposite. Children's pain fibers may be more sensitive to pain than their adult counterparts. 5"6 Myth No. 2: Active children cannot be in pain. Adults experiencing pain often retreat to their beds and remain inactive. This may or may not be the case with a child since the child who remains in the hospital b e d r o o m can be " f o u n d . " Being found means that one can be examined, poked, prodded, stuck, or taken off to who knows where. If one cannot be found, in the mind of a child eight years of age or younger, such awful things may not happen. For example, on a postoperative cardiac unit, nurses and physicians were very astute about adults' pain but quite insensitive to children's pain. When they were questioned, the reason given for failure to attend to pain was "children get better quicker and are up and around." One only needs to examine the situation from a child's view to understand why children were ambulating quicker than their adult counterparts. Staying in one's bedroom meant being a "sitting duck" for anyone who might draw arterial blood gases, strip chest tubes, poke incisions, tear tape off the body, maSeminars in Oncology Nursing, Vol I, No 2 (May), 1985: pp 116-122
THE COMPLEXITIES OF CHILDREN'S PAIN
nipulate IV equipment, administer shots, and insist that one cough. In addition, the only television on the unit was at the end of the hall in a patient lounge. To a child with limited cognitive ability, it is possible to avoid being hurt if one is not physically present. Thus, the credo of experienced hospitalized children becomes " k e e p moving and stay out of your bedroom." Being active is also a way some children respond to pain. In watching such children, it seems they are trying to escape the pain or that activity may be a way they effectively distract themselves from the pain.
Myth No. 3: It is mlsafe to athnhlister narcotics to children because they become addicted. In a study by Porter and Jick, only four of 11,882 hospitalized patients became addicted to their narcotic, and all four had prior histories of drug abuse. 7 Narcotics must be used in children when other drugs do not c o n t r o l pain. Part o f the problem in this situation is that health professionals lack information about addiction and may be unfamiliar with analgesics, especially narcotics. The renal or diabetic patient who does not receive his medication may have measurable physiologic consequences for which health professionals are held accountable. Few professionals ask the question, "What will happen to this child if we do not control the pain'?." Children whose pain is uncontrolled cease social interaction with peers; stop going to school; may become very active or totally inactive; become sad, depressed, or withdrawn; are not themselves; and in general cease to exist in a psychosocial sense. When intractable pain is brought under control, children express it best by spontaneously saying, "1 am me again!" All children have a right to have their pain controlled and to become " m e " again. Myth No. 4: Narcotics always depress respiration in children. Given enough narcotic, any human being will respond by cessation of respiration, but narcotics are safe when administered in appropriate dosages. In a study by Miller and Jick, only three of 3,263 patients developed significant respiratory depression from their narcotic analgesic. Two of the patients received 50 mg and one received 25 mg of meperidine hydrochloride. 8 Myth No. 5: Children always tell you if the)" have pain. There are several reasons why children may not tell you they have pain. For example, no one enjoys giving injections, and children are quite
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honest in their responses to injections with exclamations such as " l hate y o u . " Such responses may cause nurses to avoid administering injections even when they know an injection may be necessary. Consider, for example, the postoperative child who probably is in pain but when asked responds, " N o . " The nurse may choose to believe the child and may not act to relieve pain. The child learned in the postoperative period that a positive response to the question, " D o you hurt?" was met with an injection. Young children are not able to perceive benefit from injections because an injection and pain relief do not happen simultaneously. Children over the age of seven have a time concept and can understand what 45 minutes means but are still hesitant to admit to pain because they do not like needles. In addition, a child may not be able to cognitively compare the intensity of pain he is experiencing to the pain of injection. The obvious solution is to give analgesics by another route. IV analgesics are viewed with suspicion in pediatrics because nurses are unfamiliar with their administration. While nurses willingly give large amounts of antibiotics and chemotherapeutic agents IV, they do not have the same attitude about analgesics. Certainly, with the number of IV pumps available, the nurse who is fearful can administer narcotics more slowly. Narcotics are also available for oral use and in rectal suppository form. Children may not tell you the truth about pain for another reason. Children who have had a gradual onset of pain may not know they are in pain until the pain is alleviated. Julie was eight years old and had been suffering from a brain stem tumor. Six months after her initial chemotherapy and radiation, she entered the hospital with an abrupt onset of paralysis. Radiologic exam revealed a herniated spinal cord at C 5-6, and bone destruction at T 9-10 and C 2-3. When asked about pain, Julie denied it. However, because of her pathology, she was begun on around-the-clock codeine and acetaminophen. Forty-eight hours later Julie was "herself" and spontaneously said, " I ' m lots b e t t e r . " When asked why she was better, she stated because "'1 don't hurt." When questioned about her earlier denial of pain her response was, " I ' m mixed up. I didn't think I hurt either, but I think it was those white pills that are making me better." Ordering and administering analgesics to pa-
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tients who deny pain is contradictory to what health professionals are taught, ie, specifically, to believe what the patient tells them. But when a child has known pathology that is likely to cause pain, intervention may be needed despite the child's denial of pain. Myth No. 6: Children cannot tell you where they hurt. It is unlikely that children will ever tell you as accurately as will an adult that they are experiencing a pain that follows the distribution of the ulnar nerve, or is sharp, lancinating, searing, and burning. Sick children use words like "hurt" or " o w i e " to relate their pain and discomfort. Young children often get word labels confused, but upon exploration the choices are appropriate. A child with throbbing ischemic pain once told this author that " m y heart is beating in my knee." Children can also demonstrate on an outline of the body where they hurt. This technique is particularly useful since many children do not know the names of body parts. 4 Myth No. 7: The best way to admhdster analgesics is by injection. Injection is probably the worst possible way to administer any drug to a child. When 242 chronically ill hospitalized children were asked, " O f all the things that have ever hurt you, what has been the worst?" 49.7% replied " s h o t " or "needles. ''9 Recently, the author has been interviewing children with cancer and asking what the worst source of their pain was: bone marrow aspiration, lumbar puncture, or venipuncture. Without exception, the children have said venipunctures or added their own category of shots. When asked to explain, the consistent response was that bone marrows and lumbar punctures do not happen very often, but IVs and shots are a day-to-day reality. A substantial effort needs to be made by health professionals on behalf of children to prevent injections and venipunctures by inexperienced hands and to identify ways of making both procedures hurt less. Myth No. 8: Parents know all the answers about children's pain. Parents are probably the single best source of information about their child but may never have seen the child in a pain-producing situation or may be so stressed that they cannot focus their attention on pain. A group of parents' most frequent responses regarding pain were "the nurse would know if my child was in pain and would take care of it," "the nurse wouldn't let my child suffer," or "'I've never seen a child\vith
JOANN M. ELAND
this, but the nurse has taken care of many children with it and would know if my child hurt." Myth No. 9: The chiM is cl3'ing because he is restrained, not because he hurts. When professionals perform procedures on children, they often try to convince themselves that they are not hurting the children as a coping mechanism. This rationale should not be used by any professional to deny pain relief to a child. Procedures are easier for everyone if performed on cooperative children. It is far more appropriate to use chemical restraint, such as analgesics, than physical restraint. Most professionals know that children hate the burning and stinging caused by injecting a local anesthetic, and some children prefer no anesthetic to these unpleasant sensations. It is appropriate to use short-acting anesthetics such as chloroprocaine hydrochloride (Nesacaine, Pennwalt, Rochester, NY), or to combine short and long acting drugs such as bupivacaine hydrochloride (Marcaine, Breon, New York) rather than using the traditional intermediate anesthetics such as lidocaine hydrochloride (Xylocaine, Astra, Worcester, Mass), procaine hydrochloride (Novocaine, Breon) or mepivacaine hydrochloride (Carbocaine Hydrochloride, Winthrop, New York). The onset of chloroprocaine hydrochloride is within two to three seconds of injection and shortens the burning and stinging that children hate. The duration of bupivacaine hydrochloride can be as long as eight hours and helps the subsequent ache associated with bone marrow aspiration. These combinations of drugs are not often used by nurses and physicians because they are unfamiliar with them. Anesthesiologists are more experienced in combining local anesthetics in varying concentrations and should be approached for their recommendations in this area. INTERDISCIPLINARY COMMUNICATION OF PAIN
Nurses are in the unique position of being with patients 24 hours a day. They are witnesses to the pain and suffering of the child and family, and frequently must assume the role of advocate for both. Nurses are also the primary contact person for patients and their families in outpatient or home settings. One major problem nurses may have is communicating what they observe to the physician. In an inpatient setting, the scenario is often that a nurse identifies that a child is in pain. After ap-
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propriate comfort measures and analgesics have failed, the nurse attempts to locate the physician. Sometimes such attempts are not successful on the first try, and the nurse begins to get frustrated. The child's pain is unrelieved, and the suffering of both the child and family increases. Since the nurse is not insensitive to pain and suffering, she becomes more and more upset. When the physician and nurse finally make contact, the nurse may not communicate clearly why she feels there is need for stronger analgesics. The physician is faced with a dilemma. Earlier in the day the patient and parent reported that things were ,all right" but now there is conflicting information. Several factors may be operating here: (1) the pain itself may have changed; (2) early morning rounds may find sleepy patients and parents who do not give accurate information; (3) other priorities such as the next chemotherapy treatment or impending discharge may have been what came into the minds of the sleepy child and parent; or (4) the nurse may not be communicating clearly what has been happening because she is distraught. In such situations, nurses need to communicate information clearly. The use of a flow sheet such as that shown in Meinhart and McCaffery I° to record pain rating, vital signs, time, and the administration of analgesics and other pain relief measures is one way of objectifying the pain experience. If health professionals regularly use and review such flow sheets, they can evaluate the past pattern of pain, and plan appropriately for the future.
Assessment of Pah~ The two best methods for assessing pain in children are probably the visual analogue scale and the Eland Color Tool. Visual analogue scales have been used for many years and can easily be adapted for children who have numerical ability. A nurse or any health professional can draw a line on any piece of paper and equally place the numbers one through five along the line as shown below. 1
2
3
4
5
Explain to the child that number one is no hurt and five is the worst possible hurt, and ask the child to indicate current pain. The Eland Color Tool is the result of ten years
of research on assessment of children's pain and is the only pediatric tool that has consistently proven to be reliable and valid. 3'9"11-22 This instrument used body outlines and markers or crayons for children to indicate where and how much they hurt. The interview protocol for the Eland Color Tool is as follows: Begin by asking the child, "What kind of things have hurt you bef o r e ? " If the child does not reply ask, " H a s anyone ever stuck your finger for blood? What did that feel like?" After discussing several things that have hurt the child in the past ask, " O f all the things that have ever hurt you, what has been the worst7" I. Present eight crayons to the child in a random order. 2. Ask the child, " O f these colors, which color is like . . . " (The event identified by the child as hurting the most.) 3. Place the crayon away from the other crayons. (Represents severe pain.) 4. Ask the child, "Which color is like a hurt but not quite as much as . . . ? " (Event identified by the child as hurting the most.) 5. Place the crayon with the crayon chosen to represent severe pain. 6. Ask the child, "Which color is like something that hurts just a little?" 7. Place the crayon with the others. 8. Ask the child, "Which color is like no hurt at all?" 9. Show the four crayon choices to the child in order from their worst hurt color to the no hurt color. I0. Ask the child to show on the body outline where he hurts using the crayon for worst, middle, little, or no hurt. Then ask if the hurt is right now or from earlier in the day. Ask why the area hurts. The Eland Color Tool is also diagnostic since children will often identify hurts before there are objective signs and symptoms of disease. It is helpful with younger children who do not know the names of body parts. Children can also show on the body outlines how their pain changes after pain relief measures have been implemented. Both visual analogue scales and the Eland Color Tool are quick and can be used by any member of the health care team and parents. However, if the response to a child's indication of pain is an injection, further assessment of pain with either method will probably not be fruitful. As with any
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JOANN M. ELAND
assessment tool, reevaluation after whatever intervention has been undertaken is essential. PAIN RELIEF GOALS AND INTERVENTION STRATEGIES
Rankin's research 23 indicated that nurses did not discuss patient goals and did not validate pain relief measures in their adult patients with cancerrelated pain. Health professionals need to sit down with children and their parents and mutually decide on appropriate pain relief goals. For instance, is it desirable to return a child to the school room, to once more ride his bicycle, or to sit at the family table for meals? Is it realistic to expect to eliminate all pain or to reduce it to a " 1 " or a " 2 " or the least hurt color? Following interventions, it is appropriate to reevaluate pain relief goals with family in order to validate success or failure. Health professionals are in the process of acquiring a body of knowledge to discover the optimal pain relief interventions for children. While research is being conducted and completed, the clinician is still faced with the fact that many children need interventions now. Analgesics will not be discussed further, but the reader is referred to a review of pharmacologic agents elsewhere in this issue and to the earlier discussion of analgesics in this article. The following discussion is by no means all-inclusive, but is a review of interventions that work specifically with children who have cancer-related pain.
Hypnosis For a number of years, Spinetta z4 and Gardner and Olness 25 have used hypnosis as an intervention for pain relief in children who have cancer. Spinetta has worked primarily with leukemic children, and Gardner's and Olness' efforts have been with children with many diagnoses, including cancer. Their research and practice indicated that hypnosis is particularly useful with children because they are more suggestible than adults, and techniques can be learned in two or three sessions as opposed to the eight or nine sessions required by adults.
Audiotapes Clinton 12 and Eland (unpublished data) have studied the use of audiotapes with children undergoing the painful procedures of bone marrow aspiration, lumbar puncture, and venipuncture, The child chooses from a variety of available tapes and
listens to the tape with a small portable tape player and headphones. Some children prefer to listen to the tapes prior to, during, and after the procedures. Others do not want to listen during the procedure so that they may concentrate on what is happening to them. All but one of the children in Ciinton's and Eland's studies found the tape beneficial. Audiotapes made by parents or others of a child's favorite stories can also be beneficial during procedures or in the middle of the night if the child wakes up and wants to hear a familiar voice. One creative mother of an adolescent with sepsis taped the evening bedtime routine of her five children. The bedtime monotony of " I f you don't get yourselves in your pajamas there will be no snack" was a welcome sound to an adolescent who had not heard it for a month.
On-Cidl Lists Another creative adult patient came up with the idea of an on-call phone list that is useful when parents cannot stay with their hospitalized child. On a specific night, a particular person is "'on call." If the child wakes up in the middle of the night, is lonely, or is in pain, he (or his nurse) can call the individual and talk. This approach is especially useful with relatives such as grandparents who may live a long distance away and feel as though they would like to do something to help. It is also appropriate when caring family members become worn out during long hospitalizations. The on-call person can wake up, talk for a long time, know that he was helpful to the child in pain, and then can sleep the rest of the week without interruption. Other family members can sleep soundly knowing that the child's needs will be met. Families have also used on-call lists of significant others who live in the same locale and can physically come to the hospital when the child needs someone to be with him.
Transclttaneotts Electrical Nerve Sthmdators Transcutaneous electrical nerve stimulators (TENS) can also be used with children who have cancer pain. TENS units are small electrical devices that consist of a battery pack (approximately 3 x 4 x 2 inches in size) attached by cables to electrodes that are placed on the surface of the skin. The)' relieve pain by stimulating fibers that inhibit pain. Placement of the electrodes is critical with a TENS unit because the difference between
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success and failure may be as little as one sixteenth of an inch. Experimentation often is the rule to correct electrode placement and settings on the TENS unit. Children like TENS units because they do not hurt, have virtually no side effects, and allow them to control their own pain relief measures. Part of the success with children and TENS can be attributed to the fact that children do not have all of the preconceived notions about pain relief that adults have acquired. For those interested in learning more about TENS, the reader is referred to Mannheimer and Lampe, 26 who provide an excellent clinical reference.
A cupressttre Acupressure used the principles of acupuncture but without the needles. It has not been used extensively with children in this country, mainly because of the limited number of experts who have the required knowledge and skills. Specifically, the same reference points are used as with acupuncture, but finger pressure is applied to them instead of needles. After successful acupressure, a patient's endorphins (the b o d y ' s own morphine) will become elevated. Acupressure does work with some children and has the additional advantage that it can be taught to a child or parent. As with
TENS units, children usually do not have preconceived notions about acupressure that might enhance or inhibit its effectiveness. To the author's knowledge, no research has been undertaken in this country to document the benefits of acupressure with children. SUMMARY
The problem of children's pain is a complex one that requires the careful attention of all health professionals. For years, children's pain has been shrouded in myths and traditions that are inaccurate or inappropriate. Instruments now exist to accurately assess the pain a child is experiencing, but problems still remain within the sphere of what to do for a child who is hurting. Intervention strategies still need to be developed specifically for use with children. Practitioners are faced with children who need relief from their pain. Until a body of knowledge is acquired about effective 'pain control in children, clinicians must try anything that works and communicate it to others. All children have a right to be free of their pain. Children with cancer have a right to quality in their lives whether they are in remission or exacerbation, and the relief of pain is a key part of quality of life.
REFERENCES
I. MatthewsGJ, Zarrow V, OsterholmJL: Cancer pain and its treatment. Semin Dmg Treatment 3:45-53, 1973 2. Johnson JE, Rice VH: Sensory and distress components of pain. Nurs Res 23:203-209, 1974 3. Eland JM: Pain, in Hart L, Reese J, Fearing M (eds): Concepts Common to Acute Illness. St Louis, Mosby, 1982, pp 164-196 4. Eland JM: The role of the nurse in children's pain, in Copp LA (ed): Recent Advances in Nursing: Perspectives on Pain. Edinburgh,Churchill Livingstone, 1985, pp 29-45 5. Haslam DR: Age and the perception of Pain. Psychonomic Sci 15:86-87, 1969 6. Kaiko RF: Age and morphineanalgesiain cancer patients with postoperative pain. Clin Pharmacol Rev 28:823-826, 1980 7. Porter J, Jick H: Addiction rare in patients treated with narcotics. N Engl J Med 302:123, 1980 8. MillerRR, Jick H: Clinical effects of meperidinein hospitalized medicalpatients. J Clin Pharmacol 18:180-189, 1978 9. ElandJM, AndersonJE: The experience of pain in children, in Jacox A (ed): Pain: A Source Book for Nurses and Other Health Professionals. Boston, Little, Brown, 1977, pp 453-476 10. MeinhartNT, McCaffery M: Pain: A NursingApproach to Assessment and Analysis. Norwalk, Conn, Appleton-Century-Crofts, 1983, p 361
11. Calamaras DM, Sullivan CL: The Importanceof Pediatric Pain Cues as Perceivedby Nurses. MA Thesis, University of Virginia, 1980 12. Clinton PK: Music as a Nursing Inte~'entionfor Children During Painful Procedures. MA Thesis, University of Iowa, 1984 13. Eland JM: Children's Communication of Pain. MA Thesis, Universityof Iowa, 1974 14. Eland JM: Minimizingpain associated with prekindergarten intramuscularinjections. Issues in Comp Pediatr Nurs 5:361-372, 1982 15. ElandJM: Children's pain: Developmentallyappropriate efforts to improve identificationof source, intensity, and relevant intervening variables, in Felton G, Albert M (eds): Nursing Research: A Monograph for Non-nurse Researchers, Universityof Iowa Press, 1983, pp 64-79 16. Hammond NI: Nitrous oxide analgesia and children's perception of pain. MA Thesis, Universityof Iowa, 1982 17. Hester NK: The preoperational child's reaction to immunization. Nurs Res 28:250-252, 1979 18. Leobach S: The Use of Color to Facilitate Communication of Pain in Children. MA Thesis, Universityof Washington, 1979 19. Lollar DJ, Smits SJ, Patterson DL: Assessment of pediatric pain: An empiricalperspective. J Pediatr Psych 7:267277, 1982
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20. Lukens MM: The Identification of Criteria Used by Nurses in the Assessment of Pain in Children. MA Thesis, University of Cincinnati, 1982 21. Schroeder P: A Descriptive Study of Pain Associated With Therapeutic Procedures in the Burned School-age Child. MA Thesis, University of Cincinnati, 1981 22. Varchol D: The Relationship Between Nurses" and Children's Perceptions of Pain in the Acute and Chronic Pain Experiences of Children. MA Thesis, University of Cincinnati, 1983
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23. Rankin MA, Snider B: Nurses" perceptions of cancer patients' pain. Cancer Nurs 7:149-155, 1984 24. Spinetta J, Deasy-Spinetta P: Living With Childhood Cancer. St Louis, Mosby, 1981, p 145-146 25. Gardner G, Olness K: Hypnosis and Hypnotherapy With Children. Orlando, Fla, Grune & Stratton, 1981 26. Mannheimer J, Lampe G: Clinical Transcutaneous Electrical Nerve Stimulation. Philadelphia, Davis, 1984
EVERAL YEARS AGO, the control of cancer pain was identified as a national health priority. Matthews, Zarro, and Osterholm I identified the five leading causes of severe pain: (1) obstruction of a viscus or vessel, (2) bone infarction and reabsorption, (3) necrosis or inflammation,-(4) invasion or entrapment of nerves, and (5) edema. These same pathologies exist in children but have not been used as an objective data base for documentation of why a child might be hurting. One only need look at the list of intervention strategies to appreciate the extent to which health professionals have attempted to manage what can be a very difficult problem for the cancer patient and family. But these interventions have been applied better to adults than to the pediatric population. When it is a child who is hurting there are problems: Who is to be held accountable for pain control in children? What are the learning priorities of the health care team? What myths about children's pain still prevail? This article will examine these questions and provide some suggestions for assessment and intervention. Accountability for pain control is still a major problem, as is clear from attending medical or nursing rounds. Data are discussed about vital signs, intravenous (IV) flow rates, and diagnostic tests, but rarely are data communicated about pain control. Physicians and nurses are held accountable by peers if the wrong IV solution is ordered or administered but may not be held accountable for failure to achieve adequate pain control. Learning priorities of health care professionals are closely tied to the problem of accountability. The amount of knowledge required of health professionals is so voluminous that priorities must be established. We are rewarded when we learn about fluid and electrolyte balance, acid and base disturbances, shock, and other life-threatening complications. We are not rewarded when we learn about pain control. Learners in clinical set-
S
From the College of Nurshlg, The UniversiO" of Iowa, Iowa
City. Address reprint requests to Joann M. Eland, RN, MA, PhD, 316 Nursing BIdg, The University of Iowa, Iowa City, IA 52242. © 1985 by Grune & Stratton, Inc. 0749-2081/85/0102-0007S05.00/0 116
tings become aware of these priorities and focus their study time accordingly. To add to the problem, there has been a notable lack of information in the literature about children's pain. Prior to 1977 there was no reliable and valid w@ to assess children's pain, and very little research had been done in the area of interventions. Now the practitioner can choose from a variety of visual analogue scales adapted for children or use the Eland Color Tool to assess children's pain. 2"3 The information on interventions remains sparse but is currently the focus of many researchers. MYTHS
Nurses and pbysicians have been plagued with a number of myths surrounding children's pain. 4 Myth No. 1: Children's nervous systems are not the same as aduhs and therefore children do not experience pain with the.intensiO' that adults do. At one point in time, it was thought that myelinization of nerves was essential to the pain fibers' ability to function. This is not true, and in fact there are data to support the exact opposite. Children's pain fibers may be more sensitive to pain than their adult counterparts. 5"6 Myth No. 2: Active children cannot be in pain. Adults experiencing pain often retreat to their beds and remain inactive. This may or may not be the case with a child since the child who remains in the hospital b e d r o o m can be " f o u n d . " Being found means that one can be examined, poked, prodded, stuck, or taken off to who knows where. If one cannot be found, in the mind of a child eight years of age or younger, such awful things may not happen. For example, on a postoperative cardiac unit, nurses and physicians were very astute about adults' pain but quite insensitive to children's pain. When they were questioned, the reason given for failure to attend to pain was "children get better quicker and are up and around." One only needs to examine the situation from a child's view to understand why children were ambulating quicker than their adult counterparts. Staying in one's bedroom meant being a "sitting duck" for anyone who might draw arterial blood gases, strip chest tubes, poke incisions, tear tape off the body, maSeminars in Oncology Nursing, Vol I, No 2 (May), 1985: pp 116-122
THE COMPLEXITIES OF CHILDREN'S PAIN
nipulate IV equipment, administer shots, and insist that one cough. In addition, the only television on the unit was at the end of the hall in a patient lounge. To a child with limited cognitive ability, it is possible to avoid being hurt if one is not physically present. Thus, the credo of experienced hospitalized children becomes " k e e p moving and stay out of your bedroom." Being active is also a way some children respond to pain. In watching such children, it seems they are trying to escape the pain or that activity may be a way they effectively distract themselves from the pain.
Myth No. 3: It is mlsafe to athnhlister narcotics to children because they become addicted. In a study by Porter and Jick, only four of 11,882 hospitalized patients became addicted to their narcotic, and all four had prior histories of drug abuse. 7 Narcotics must be used in children when other drugs do not c o n t r o l pain. Part o f the problem in this situation is that health professionals lack information about addiction and may be unfamiliar with analgesics, especially narcotics. The renal or diabetic patient who does not receive his medication may have measurable physiologic consequences for which health professionals are held accountable. Few professionals ask the question, "What will happen to this child if we do not control the pain'?." Children whose pain is uncontrolled cease social interaction with peers; stop going to school; may become very active or totally inactive; become sad, depressed, or withdrawn; are not themselves; and in general cease to exist in a psychosocial sense. When intractable pain is brought under control, children express it best by spontaneously saying, "1 am me again!" All children have a right to have their pain controlled and to become " m e " again. Myth No. 4: Narcotics always depress respiration in children. Given enough narcotic, any human being will respond by cessation of respiration, but narcotics are safe when administered in appropriate dosages. In a study by Miller and Jick, only three of 3,263 patients developed significant respiratory depression from their narcotic analgesic. Two of the patients received 50 mg and one received 25 mg of meperidine hydrochloride. 8 Myth No. 5: Children always tell you if the)" have pain. There are several reasons why children may not tell you they have pain. For example, no one enjoys giving injections, and children are quite
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honest in their responses to injections with exclamations such as " l hate y o u . " Such responses may cause nurses to avoid administering injections even when they know an injection may be necessary. Consider, for example, the postoperative child who probably is in pain but when asked responds, " N o . " The nurse may choose to believe the child and may not act to relieve pain. The child learned in the postoperative period that a positive response to the question, " D o you hurt?" was met with an injection. Young children are not able to perceive benefit from injections because an injection and pain relief do not happen simultaneously. Children over the age of seven have a time concept and can understand what 45 minutes means but are still hesitant to admit to pain because they do not like needles. In addition, a child may not be able to cognitively compare the intensity of pain he is experiencing to the pain of injection. The obvious solution is to give analgesics by another route. IV analgesics are viewed with suspicion in pediatrics because nurses are unfamiliar with their administration. While nurses willingly give large amounts of antibiotics and chemotherapeutic agents IV, they do not have the same attitude about analgesics. Certainly, with the number of IV pumps available, the nurse who is fearful can administer narcotics more slowly. Narcotics are also available for oral use and in rectal suppository form. Children may not tell you the truth about pain for another reason. Children who have had a gradual onset of pain may not know they are in pain until the pain is alleviated. Julie was eight years old and had been suffering from a brain stem tumor. Six months after her initial chemotherapy and radiation, she entered the hospital with an abrupt onset of paralysis. Radiologic exam revealed a herniated spinal cord at C 5-6, and bone destruction at T 9-10 and C 2-3. When asked about pain, Julie denied it. However, because of her pathology, she was begun on around-the-clock codeine and acetaminophen. Forty-eight hours later Julie was "herself" and spontaneously said, " I ' m lots b e t t e r . " When asked why she was better, she stated because "'1 don't hurt." When questioned about her earlier denial of pain her response was, " I ' m mixed up. I didn't think I hurt either, but I think it was those white pills that are making me better." Ordering and administering analgesics to pa-
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tients who deny pain is contradictory to what health professionals are taught, ie, specifically, to believe what the patient tells them. But when a child has known pathology that is likely to cause pain, intervention may be needed despite the child's denial of pain. Myth No. 6: Children cannot tell you where they hurt. It is unlikely that children will ever tell you as accurately as will an adult that they are experiencing a pain that follows the distribution of the ulnar nerve, or is sharp, lancinating, searing, and burning. Sick children use words like "hurt" or " o w i e " to relate their pain and discomfort. Young children often get word labels confused, but upon exploration the choices are appropriate. A child with throbbing ischemic pain once told this author that " m y heart is beating in my knee." Children can also demonstrate on an outline of the body where they hurt. This technique is particularly useful since many children do not know the names of body parts. 4 Myth No. 7: The best way to admhdster analgesics is by injection. Injection is probably the worst possible way to administer any drug to a child. When 242 chronically ill hospitalized children were asked, " O f all the things that have ever hurt you, what has been the worst?" 49.7% replied " s h o t " or "needles. ''9 Recently, the author has been interviewing children with cancer and asking what the worst source of their pain was: bone marrow aspiration, lumbar puncture, or venipuncture. Without exception, the children have said venipunctures or added their own category of shots. When asked to explain, the consistent response was that bone marrows and lumbar punctures do not happen very often, but IVs and shots are a day-to-day reality. A substantial effort needs to be made by health professionals on behalf of children to prevent injections and venipunctures by inexperienced hands and to identify ways of making both procedures hurt less. Myth No. 8: Parents know all the answers about children's pain. Parents are probably the single best source of information about their child but may never have seen the child in a pain-producing situation or may be so stressed that they cannot focus their attention on pain. A group of parents' most frequent responses regarding pain were "the nurse would know if my child was in pain and would take care of it," "the nurse wouldn't let my child suffer," or "'I've never seen a child\vith
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this, but the nurse has taken care of many children with it and would know if my child hurt." Myth No. 9: The chiM is cl3'ing because he is restrained, not because he hurts. When professionals perform procedures on children, they often try to convince themselves that they are not hurting the children as a coping mechanism. This rationale should not be used by any professional to deny pain relief to a child. Procedures are easier for everyone if performed on cooperative children. It is far more appropriate to use chemical restraint, such as analgesics, than physical restraint. Most professionals know that children hate the burning and stinging caused by injecting a local anesthetic, and some children prefer no anesthetic to these unpleasant sensations. It is appropriate to use short-acting anesthetics such as chloroprocaine hydrochloride (Nesacaine, Pennwalt, Rochester, NY), or to combine short and long acting drugs such as bupivacaine hydrochloride (Marcaine, Breon, New York) rather than using the traditional intermediate anesthetics such as lidocaine hydrochloride (Xylocaine, Astra, Worcester, Mass), procaine hydrochloride (Novocaine, Breon) or mepivacaine hydrochloride (Carbocaine Hydrochloride, Winthrop, New York). The onset of chloroprocaine hydrochloride is within two to three seconds of injection and shortens the burning and stinging that children hate. The duration of bupivacaine hydrochloride can be as long as eight hours and helps the subsequent ache associated with bone marrow aspiration. These combinations of drugs are not often used by nurses and physicians because they are unfamiliar with them. Anesthesiologists are more experienced in combining local anesthetics in varying concentrations and should be approached for their recommendations in this area. INTERDISCIPLINARY COMMUNICATION OF PAIN
Nurses are in the unique position of being with patients 24 hours a day. They are witnesses to the pain and suffering of the child and family, and frequently must assume the role of advocate for both. Nurses are also the primary contact person for patients and their families in outpatient or home settings. One major problem nurses may have is communicating what they observe to the physician. In an inpatient setting, the scenario is often that a nurse identifies that a child is in pain. After ap-
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propriate comfort measures and analgesics have failed, the nurse attempts to locate the physician. Sometimes such attempts are not successful on the first try, and the nurse begins to get frustrated. The child's pain is unrelieved, and the suffering of both the child and family increases. Since the nurse is not insensitive to pain and suffering, she becomes more and more upset. When the physician and nurse finally make contact, the nurse may not communicate clearly why she feels there is need for stronger analgesics. The physician is faced with a dilemma. Earlier in the day the patient and parent reported that things were ,all right" but now there is conflicting information. Several factors may be operating here: (1) the pain itself may have changed; (2) early morning rounds may find sleepy patients and parents who do not give accurate information; (3) other priorities such as the next chemotherapy treatment or impending discharge may have been what came into the minds of the sleepy child and parent; or (4) the nurse may not be communicating clearly what has been happening because she is distraught. In such situations, nurses need to communicate information clearly. The use of a flow sheet such as that shown in Meinhart and McCaffery I° to record pain rating, vital signs, time, and the administration of analgesics and other pain relief measures is one way of objectifying the pain experience. If health professionals regularly use and review such flow sheets, they can evaluate the past pattern of pain, and plan appropriately for the future.
Assessment of Pah~ The two best methods for assessing pain in children are probably the visual analogue scale and the Eland Color Tool. Visual analogue scales have been used for many years and can easily be adapted for children who have numerical ability. A nurse or any health professional can draw a line on any piece of paper and equally place the numbers one through five along the line as shown below. 1
2
3
4
5
Explain to the child that number one is no hurt and five is the worst possible hurt, and ask the child to indicate current pain. The Eland Color Tool is the result of ten years
of research on assessment of children's pain and is the only pediatric tool that has consistently proven to be reliable and valid. 3'9"11-22 This instrument used body outlines and markers or crayons for children to indicate where and how much they hurt. The interview protocol for the Eland Color Tool is as follows: Begin by asking the child, "What kind of things have hurt you bef o r e ? " If the child does not reply ask, " H a s anyone ever stuck your finger for blood? What did that feel like?" After discussing several things that have hurt the child in the past ask, " O f all the things that have ever hurt you, what has been the worst7" I. Present eight crayons to the child in a random order. 2. Ask the child, " O f these colors, which color is like . . . " (The event identified by the child as hurting the most.) 3. Place the crayon away from the other crayons. (Represents severe pain.) 4. Ask the child, "Which color is like a hurt but not quite as much as . . . ? " (Event identified by the child as hurting the most.) 5. Place the crayon with the crayon chosen to represent severe pain. 6. Ask the child, "Which color is like something that hurts just a little?" 7. Place the crayon with the others. 8. Ask the child, "Which color is like no hurt at all?" 9. Show the four crayon choices to the child in order from their worst hurt color to the no hurt color. I0. Ask the child to show on the body outline where he hurts using the crayon for worst, middle, little, or no hurt. Then ask if the hurt is right now or from earlier in the day. Ask why the area hurts. The Eland Color Tool is also diagnostic since children will often identify hurts before there are objective signs and symptoms of disease. It is helpful with younger children who do not know the names of body parts. Children can also show on the body outlines how their pain changes after pain relief measures have been implemented. Both visual analogue scales and the Eland Color Tool are quick and can be used by any member of the health care team and parents. However, if the response to a child's indication of pain is an injection, further assessment of pain with either method will probably not be fruitful. As with any
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assessment tool, reevaluation after whatever intervention has been undertaken is essential. PAIN RELIEF GOALS AND INTERVENTION STRATEGIES
Rankin's research 23 indicated that nurses did not discuss patient goals and did not validate pain relief measures in their adult patients with cancerrelated pain. Health professionals need to sit down with children and their parents and mutually decide on appropriate pain relief goals. For instance, is it desirable to return a child to the school room, to once more ride his bicycle, or to sit at the family table for meals? Is it realistic to expect to eliminate all pain or to reduce it to a " 1 " or a " 2 " or the least hurt color? Following interventions, it is appropriate to reevaluate pain relief goals with family in order to validate success or failure. Health professionals are in the process of acquiring a body of knowledge to discover the optimal pain relief interventions for children. While research is being conducted and completed, the clinician is still faced with the fact that many children need interventions now. Analgesics will not be discussed further, but the reader is referred to a review of pharmacologic agents elsewhere in this issue and to the earlier discussion of analgesics in this article. The following discussion is by no means all-inclusive, but is a review of interventions that work specifically with children who have cancer-related pain.
Hypnosis For a number of years, Spinetta z4 and Gardner and Olness 25 have used hypnosis as an intervention for pain relief in children who have cancer. Spinetta has worked primarily with leukemic children, and Gardner's and Olness' efforts have been with children with many diagnoses, including cancer. Their research and practice indicated that hypnosis is particularly useful with children because they are more suggestible than adults, and techniques can be learned in two or three sessions as opposed to the eight or nine sessions required by adults.
Audiotapes Clinton 12 and Eland (unpublished data) have studied the use of audiotapes with children undergoing the painful procedures of bone marrow aspiration, lumbar puncture, and venipuncture, The child chooses from a variety of available tapes and
listens to the tape with a small portable tape player and headphones. Some children prefer to listen to the tapes prior to, during, and after the procedures. Others do not want to listen during the procedure so that they may concentrate on what is happening to them. All but one of the children in Ciinton's and Eland's studies found the tape beneficial. Audiotapes made by parents or others of a child's favorite stories can also be beneficial during procedures or in the middle of the night if the child wakes up and wants to hear a familiar voice. One creative mother of an adolescent with sepsis taped the evening bedtime routine of her five children. The bedtime monotony of " I f you don't get yourselves in your pajamas there will be no snack" was a welcome sound to an adolescent who had not heard it for a month.
On-Cidl Lists Another creative adult patient came up with the idea of an on-call phone list that is useful when parents cannot stay with their hospitalized child. On a specific night, a particular person is "'on call." If the child wakes up in the middle of the night, is lonely, or is in pain, he (or his nurse) can call the individual and talk. This approach is especially useful with relatives such as grandparents who may live a long distance away and feel as though they would like to do something to help. It is also appropriate when caring family members become worn out during long hospitalizations. The on-call person can wake up, talk for a long time, know that he was helpful to the child in pain, and then can sleep the rest of the week without interruption. Other family members can sleep soundly knowing that the child's needs will be met. Families have also used on-call lists of significant others who live in the same locale and can physically come to the hospital when the child needs someone to be with him.
Transclttaneotts Electrical Nerve Sthmdators Transcutaneous electrical nerve stimulators (TENS) can also be used with children who have cancer pain. TENS units are small electrical devices that consist of a battery pack (approximately 3 x 4 x 2 inches in size) attached by cables to electrodes that are placed on the surface of the skin. The)' relieve pain by stimulating fibers that inhibit pain. Placement of the electrodes is critical with a TENS unit because the difference between
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success and failure may be as little as one sixteenth of an inch. Experimentation often is the rule to correct electrode placement and settings on the TENS unit. Children like TENS units because they do not hurt, have virtually no side effects, and allow them to control their own pain relief measures. Part of the success with children and TENS can be attributed to the fact that children do not have all of the preconceived notions about pain relief that adults have acquired. For those interested in learning more about TENS, the reader is referred to Mannheimer and Lampe, 26 who provide an excellent clinical reference.
A cupressttre Acupressure used the principles of acupuncture but without the needles. It has not been used extensively with children in this country, mainly because of the limited number of experts who have the required knowledge and skills. Specifically, the same reference points are used as with acupuncture, but finger pressure is applied to them instead of needles. After successful acupressure, a patient's endorphins (the b o d y ' s own morphine) will become elevated. Acupressure does work with some children and has the additional advantage that it can be taught to a child or parent. As with
TENS units, children usually do not have preconceived notions about acupressure that might enhance or inhibit its effectiveness. To the author's knowledge, no research has been undertaken in this country to document the benefits of acupressure with children. SUMMARY
The problem of children's pain is a complex one that requires the careful attention of all health professionals. For years, children's pain has been shrouded in myths and traditions that are inaccurate or inappropriate. Instruments now exist to accurately assess the pain a child is experiencing, but problems still remain within the sphere of what to do for a child who is hurting. Intervention strategies still need to be developed specifically for use with children. Practitioners are faced with children who need relief from their pain. Until a body of knowledge is acquired about effective 'pain control in children, clinicians must try anything that works and communicate it to others. All children have a right to be free of their pain. Children with cancer have a right to quality in their lives whether they are in remission or exacerbation, and the relief of pain is a key part of quality of life.
REFERENCES
I. MatthewsGJ, Zarrow V, OsterholmJL: Cancer pain and its treatment. Semin Dmg Treatment 3:45-53, 1973 2. Johnson JE, Rice VH: Sensory and distress components of pain. Nurs Res 23:203-209, 1974 3. Eland JM: Pain, in Hart L, Reese J, Fearing M (eds): Concepts Common to Acute Illness. St Louis, Mosby, 1982, pp 164-196 4. Eland JM: The role of the nurse in children's pain, in Copp LA (ed): Recent Advances in Nursing: Perspectives on Pain. Edinburgh,Churchill Livingstone, 1985, pp 29-45 5. Haslam DR: Age and the perception of Pain. Psychonomic Sci 15:86-87, 1969 6. Kaiko RF: Age and morphineanalgesiain cancer patients with postoperative pain. Clin Pharmacol Rev 28:823-826, 1980 7. Porter J, Jick H: Addiction rare in patients treated with narcotics. N Engl J Med 302:123, 1980 8. MillerRR, Jick H: Clinical effects of meperidinein hospitalized medicalpatients. J Clin Pharmacol 18:180-189, 1978 9. ElandJM, AndersonJE: The experience of pain in children, in Jacox A (ed): Pain: A Source Book for Nurses and Other Health Professionals. Boston, Little, Brown, 1977, pp 453-476 10. MeinhartNT, McCaffery M: Pain: A NursingApproach to Assessment and Analysis. Norwalk, Conn, Appleton-Century-Crofts, 1983, p 361
11. Calamaras DM, Sullivan CL: The Importanceof Pediatric Pain Cues as Perceivedby Nurses. MA Thesis, University of Virginia, 1980 12. Clinton PK: Music as a Nursing Inte~'entionfor Children During Painful Procedures. MA Thesis, University of Iowa, 1984 13. Eland JM: Children's Communication of Pain. MA Thesis, Universityof Iowa, 1974 14. Eland JM: Minimizingpain associated with prekindergarten intramuscularinjections. Issues in Comp Pediatr Nurs 5:361-372, 1982 15. ElandJM: Children's pain: Developmentallyappropriate efforts to improve identificationof source, intensity, and relevant intervening variables, in Felton G, Albert M (eds): Nursing Research: A Monograph for Non-nurse Researchers, Universityof Iowa Press, 1983, pp 64-79 16. Hammond NI: Nitrous oxide analgesia and children's perception of pain. MA Thesis, Universityof Iowa, 1982 17. Hester NK: The preoperational child's reaction to immunization. Nurs Res 28:250-252, 1979 18. Leobach S: The Use of Color to Facilitate Communication of Pain in Children. MA Thesis, Universityof Washington, 1979 19. Lollar DJ, Smits SJ, Patterson DL: Assessment of pediatric pain: An empiricalperspective. J Pediatr Psych 7:267277, 1982
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20. Lukens MM: The Identification of Criteria Used by Nurses in the Assessment of Pain in Children. MA Thesis, University of Cincinnati, 1982 21. Schroeder P: A Descriptive Study of Pain Associated With Therapeutic Procedures in the Burned School-age Child. MA Thesis, University of Cincinnati, 1981 22. Varchol D: The Relationship Between Nurses" and Children's Perceptions of Pain in the Acute and Chronic Pain Experiences of Children. MA Thesis, University of Cincinnati, 1983
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23. Rankin MA, Snider B: Nurses" perceptions of cancer patients' pain. Cancer Nurs 7:149-155, 1984 24. Spinetta J, Deasy-Spinetta P: Living With Childhood Cancer. St Louis, Mosby, 1981, p 145-146 25. Gardner G, Olness K: Hypnosis and Hypnotherapy With Children. Orlando, Fla, Grune & Stratton, 1981 26. Mannheimer J, Lampe G: Clinical Transcutaneous Electrical Nerve Stimulation. Philadelphia, Davis, 1984