Appropriate routes

Appropriate routes 150 150 Tony Guo
  • Appropriate routes
    • Oral
      • Nursing actions
        • Route is preferred due to convenience, cost, and ability to maintain steady blood levels
        • Take 1 to 2 hr to reach peak analgesic effects. Oral medications are not suited for children experiencing pain that requires rapid relief or pain that is fluctuating in nature
    • Topical/transdermal
      • Nursing actions
        • Lidocaine and prilocaine is available in a cream or gel
          • Used for any procedure in which the skin will be punctured (IV insertion, biopsy) 60 min prior to a superficial puncture
          • Place an occlusive dressing over the cream after application
          • Prior to procedure, removing the dressing and clean the skin. Indication of an adequate response is reddened or blanched skin
          • Demonstrate to the child that the skin is not sensitive by tapping or scratching lightly
          • Instruct parents to apply medication at home prior to the procedure
        • Fentanyl
          • Use for children older than 12 years of age
          • Use to provide continuous pain control. Onset of 12 to 24 hr and a duration of 72 hr
          • Use an immediate-release opioid for breakthrough pain
          • Treat respiratory depression with naloxone
    • Intravenous
      • Nursing actions
        • Bolus
          • Rapid pain control in approximately 5 min
          • Use for medications (morphine, hydromorphone)
          • Continuous: provides steady blood levels
        • Patient-controlled analgesia (PCA)
          • Self-administration of pain medication
          • Can be basal, bolus, or combination
          • Has lockout to prevent overdosing
        • Family-controlled analgesia
          • Same concept as PCA
          • Parent or caregiver manages the child’s pain
    • Nonpharmacological measures
      • Distractions
        • Tell jokes or a story to the child
        • Involve parent and child in identifying strong distractors.
        • Involve child in play; use radio, smartphone, tablet, or computer game; have child sing or use rhythmic breathing.
        • Have child take a deep breath and blow it out until told to stop.
        • Have child blow bubbles to “blow the hurt away.”
        • Have child concentrate on yelling or saying “ouch,” with instructions to “yell as loud or soft as you feel it hurt; that way I know what’s happening.”
        • Have child look through kaleidoscope (type with glitter suspended in fluid-filled tube) and encourage him or her to concentrate by asking, “Do you see the different designs?”
        • Use humor, such as watching cartoons, telling jokes or funny
        • stories, or acting silly with child.
        • Have child read, play games, or visit with friends.
      • Relaxation
        • Infant or young child
          • Hold or rock the infant or young child
            • Rock in a wide, rhythmic arc in a rocking chair, or sway back and forth, rather than bouncing child.
          • Assist older children into a comfortable position, well-supported position, such as vertically against the chest and shoulder
          • Assist with breathing techniques
  • Repeat one or two words softly, such as “Mommy’s here.”
  • Slightly older child
    • Ask child to take a deep breath and “go limp as a rag doll” while exhaling slowly; then ask child to yawn (demonstrate if needed)
    • Help child assume a comfortable position (e.g., pillow under neck and knees).
    • Begin progressive relaxation: starting with the toes, systematically instruct child to let each body part “go limp” or “feel heavy.” If child has difficulty relaxing, instruct child to tense or tighten each body part and then relax it.
    • Allow child to keep eyes open, since children may respond better if eyes are open rather than closed during relaxation.
  • Guided imagery
    • Assist the child in an imaginary experience
      • Including as many senses as possible (e.g., “feel the cool breezes,” “see the beautiful colors,” “hear the pleasant music”).
    • Have the child describe the details and write down or record scripts
    • Encourage child to concentrate only on the pleasurable event during the painful time; enhance the image by recalling specific details by reading the script or playing the tape.
    • Combine with relaxation and rhythmic breathing
  • Positive self-talk
    • Have the child say positive things during a procedure or painful episode
      • “I will be feeling better soon,” or “When I go home, I will feel better, and we will eat ice cream”).
  • Thought Stopping
    • Identify positive facts about the painful event (e.g., “It does not last long”).
    • Identify reassuring information (e.g., “If I think about something else, it does not hurt as much”).
    • Condense positive and reassuring facts into a set of brief statements, and have child memorize them (e.g., “Short procedure, good veins, little hurt, nice nurse, go home”).
    • Have child repeat the memorized statements whenever thinking about or experiencing the painful event.
  • Behavioral contracting
    • Informal: May be used with children as young as 4 or 5 years of age:
      • Use stickers or token as a reward
      • Give time limits for the child to cooperate
        • Give a child who is uncooperative or procrastinating during a procedure a limited time (measured by a visible timer) to complete the procedure.
        • Proceed as needed if child is unable to comply
      • Reinforce cooperation with a reward
    • Formal: Use written contract, which includes the following:
      • Realistic (seems possible) goal or desired behavior
      • Measurable behavior (e.g., agrees not to hit anyone during procedures)
      • Contract written, dated, and signed by all people nvolved in any of the agreements
      • Identified rewards or consequences that are reinforcing
      • Goals that can be evaluated
      • Commitment and compromise requirements for both parties (e.g., while timer is used, nurse will not nag or prod child to complete procedure)
  • Containment
    • Swaddle the infant
    • Place rolled blankets around the child 
    • Maintain proper positioning
  • Nonnutritive sucking
    • Offer pacifier with sucrose before, during, and after painful procedure
    • Offer nonnutritive sucking during episodes of pain
  • Kangaroo care
    • Skin-to-skin contact between infants and parents
  • Complementary and alternative medicine
    • Classifications of CAM are grouped into five classes
      • Biologically based: foods, special diets, herbal or plant preparations, vitamins, other supplements
      • Manipulative treatments: chiropractic, osteopathy, massage
      • Energy based: Reiki, bioelectric or magnetic treatments, pulsed fields, alternating and direct currents
      • Mind-body techniques: mental healing, expressive treatments, spiritual healing, hypnosis, relaxation
      • Alternative medical systems: homeopathy; naturopathy; ayurveda; traditional Chinese medicine, including acupuncture and moxibustion
  • Pharmacologic management
    • The World Health Organization states that the principles for pharmacologic pain management should include the following:
      • Using a two-step strategy
      • Dosing at regular intervals
      • Using the appropriate route of administration
      • Adapting treatment to the individual child
    • Nonopioids
      • They include acetaminophens and NSAIDs are suitable for mild to moderate pain
      • Nonsteroidal Anti-inflammatory Drugs for Children
Drug Dosage Comments
Acetaminophen (Tylenol)
  • 10–15 mg/kg/dose q 4-6 h PO not to exceed five doses in 24 h or 75 mg/kg/day, or 4000 mg/day
  • Available in numerous preparations
  • Nonprescription
  • Higher dosage range may provide increased analgesia
Choline magnesium trisalicylate (Trilisate)
  • 10–15 mg/kg q 8–12 h PO
  • Maximum dose 3000 mg/day
  • Available in suspension, 500 mg/5 mL
  • Prescription
Ibuprofen (children’s Motrin, children’s Advil)
  • Children >6 months of age: 5–10 mg/kg/dose q 6–8 h
  • Maximum dose 30 mg/kg/day or 3200 mg/day
  • Available in numerous preparations
  • Available in suspension, 100 mg/5 mL, and drops, 100 mg/2.5 mL
  • Nonprescription
Naproxen (Naprosyn)
  • Children >2 years of age: 5–7 mg/kg/dose every 12 h
  • Maximum 20 mg/kg/day or 1250 mg/day
  • Available in suspension, 125 mg/5 mL, and several different dosages for tablets
  • Prescription
Indomethacin
  • 1–2 mg/kg q 6–12 h
  • Maximum 4g/kg/day or 200 mg/day
  • Available in 25-mg and 50-mg capsules and suspension 25 mg/5 mL
  • Prescription
Diclofenac
  • 0.5–0.75 mg/kg q 6–12 h PO
  • Maximum 3 mg/kg day or 200 mg/day
  • Available in 50-mg tablet and extended-release 100-mg tablets
  • Prescription

 

  • Opioids
    • Needed for moderate to several pain
    • Morphine remains the standard agents used for comparison to other opioid agents
    • When morphine is not a suitable opioid, it can be substituted by drugs as:
      • Hydromorphone hydrochloride (Dilaudid) and fentanyl citrate (Sublimaze)
      • Codeine
        • Oral opiate analgesic, is a weak opioid and has well-known safety and efficacy problems related to genetic variability in biotransformation
  • Coanalgesic drugs
    • It may be used alone or with opioids to control pain symptoms and opioid side effects
    • Drugs frequently used to relieve anxiety, cause sedation, and provide amnesia are diazepam (Valium) and midazolam (Versed)
      • However, these drugs are not analgesics and should be used to enhance the effects of analgesics, not as a substitute for analgesics.
    • Other adjuvants include tricyclic antidepressants (e.g., amitriptyline, imipramine) and antiepileptics (e.g., gabapentin, carbamazepine, clonazepam)
    • Other medications commonly prescribed include stool softeners and laxatives for constipation, antiemetics for nausea and vomiting, diphenhydramine for itching, steroids for inflammation and bone pain, and dextroamphetamine and caffeine for possible increased pain and sedation
  • Routes and Methods of Analgesic Drug Administration
    • Oral
      • Oral route preferred because of convenience, cost, and relatively
      • steady blood levels
      • Higher dosages of oral form of opioids required for equivalent
      • parenteral analgesia
      • Peak drug effect occurring after 1 to 2 hours for most analgesics
      • Delay in onset a disadvantage when rapid control of severe or 
      • fluctuating pain is desired
    • Sublingual, Buccal, or Transmucosal
      • Tablet or liquid placed between cheek and gum (buccal) or under tongue (sublingual)
      • Highly desirable because more rapid onset than oral route
        • Produces less first-pass effect through liver than oral route, which normally reduces analgesia from oral opioids (unless sublingual or buccal form is swallowed, which occurs often in children)
      • Few drugs commercially available in this form 
      • Many drugs can be compounded into sublingual troche or lozenge.*
        • Actiq: Oral transmucosal fentanyl citrate in hard confection base on a plastic holder; indicated only for management of breakthrough cancer pain in patients with malignancies who are already receiving and are tolerant to opioid therapy, but can be used for preoperative or preprocedural sedation and analgesia
    • Intravenous (Bolus)
      • Preferred for rapid control of severe pain
      • Provides most rapid onset of effect, usually in about 5 minutes
      • Advantage for acute pain, procedural pain, and breakthrough pain
      • Needs to be repeated hourly for continuous pain control
      • Drugs with short half-life (morphine, fentanyl, hydromorphone) preferable to avoid toxic accumulation of drug
    • Intravenous (Continuous)
      • Preferred over bolus and intramuscular (IM) injection for
      • maintaining control of pain
      • Provides steady blood levels
      • Easy to titrate dosage
    • Subcutaneous (Continuous)
      • Used when oral and intravenous (IV) routes not available
      • Provides equivalent blood levels to continuous IV infusion
      • Suggested initial bolus dose to equal 2-hour IV dose; total 24-hour dose usually requires concentrated opioid solution to minimize infused volume; use smallest-gauge needle that accommodates infusion rate
    • Patient-Controlled Analgesia
      • Generally refers to self-administration of drugs, regardless of route
      • Typically uses programmable infusion pump (IV, epidural, subcutaneous [SC]) that permits self-administration of boluses of medication at preset dose and time interval (lockout interval is time between doses)
      • Patient-controlled analgesia (PCA) bolus administration often combined with initial bolus and continuous (basal or background) infusion of opioid
      • Optimum lockout interval not known but must be at least as long as time needed for onset of drug
        • Should effectively control pain during movement or procedures
        • Longer lockout provides larger dose
    • Family-Controlled Analgesia
      • One family member (usually a parent) or other caregiver designated as child’s primary pain manager with responsibility for pressing PCA button
      • Guidelines for selecting a primary pain manager for family controlled analgesia:
        • Spends a significant amount of time with the patient
        • Is willing to assume responsibility of being primary pain manager
        • Is willing to accept and respect patient’s reports of pain (if able to provide) as best indicator of how much pain the patient is experiencing; knows how to use and interpret a pain rating scale
        • Understands the purpose and goals of patient’s pain management plan
        • Understands concept of maintaining a steady analgesic blood level
        • Recognizes signs of pain and side effects and adverse reactions to opioid
    • Nurse-Activated Analgesia
      • Child’s primary nurse designated as primary pain manager and is only person who presses PCA button during that nurse’s shift
      • Guidelines for selecting primary pain manager for family-controlled analgesia also applicable to nurse-activated analgesia
      • May be used in addition to basal rate to treat breakthrough pain with bolus doses; patient assessed every 30 minutes for need for bolus dose
      • May be used without a basal rate as a means of maintaining analgesia with around-the-clock bolus doses
    • Intramuscular
      • Note: Not recommended for pain control; not current standard of care
        • Painful administration (hated by children)
        • Tissue and nerve damage caused by some drugs
        • Wide fluctuation in absorption of drug from muscle
        • Faster absorption from deltoid than from gluteal sites
        • Shorter duration and more expensive than oral drugs
        • Time-consuming for staff and unnecessary delay for child
    • Intranasal
      • Available commercially as butorphanol (Stadol NS); approved for those older than 18 years of age
      • Should not be used in patient receiving morphine-like drugs because butorphanol is partial antagonist that will reduce analgesia and may cause withdrawal
    • Intradermal
      • Used primarily for skin anesthesia (e.g., before lumbar puncture, bone marrow aspiration, arterial puncture, skin biopsy)
      • Local anesthetics (e.g., lidocaine) cause stinging, burning sensation
      • Duration of stinging dependent on type of “caine” used
      • To avoid stinging sensation associated with lidocaine:
        • Buffer the solution by adding 1 part sodium bicarbonate (1 mEq/mL) to 9 to 10 parts 1% or 2% lidocaine with or without epinephrine
      • Normal saline with preservative, benzyl alcohol, anesthetizes venipuncture site
      • Same dose used as for buffered lidocaine
    • Topical or Transdermal
      • EMLA (eutectic mixture of local anesthetics [lidocaine and prilocaine]) cream and anesthetic disk or LMX4 (4% liposomal lidocaine cream)
        • Eliminates or reduces pain from most procedures involving skin puncture
        • Must be placed on intact skin over puncture site and covered by occlusive dressing or applied as anesthetic disc for 1 hour or more before procedure
      • Lidocaine-tetracaine (Synera, S-Caine)
        • Apply for 20 to 30 minutes
        • Do not apply to broken skin
      • LAT (lidocaine-adrenaline-tetracaine), tetracaine-phenylephrine (tetraphen)
        • Provides skin anesthesia about 15 minutes after application on nonintact skin
        • Gel (preferable) or liquid placed on wounds for suturing
        • Adrenaline not for use on end arterioles (fingers, toes, tip of nose, penis, earlobes) because of vasoconstriction
      • Transdermal fentanyl (Duragesic)
        • Available as patch for continuous pain control
        • Safety and efficacy not established in children younger than 12 years of age
        • Not appropriate for initial relief of acute pain because of long interval to peak effect (12 to 24 hours); for rapid onset of pain relief, give an immediate-release opioid
        • Orders for “rescue doses” of an immediate-release opioid recommended for breakthrough pain, a flare of severe pain that breaks through the medication being administered at regular intervals for persistent pain
        • Has duration of up to 72 hours for prolonged pain relief
        • If respiratory depression occurs, possible need for several doses of naloxone
      • Vapo-coolant
        • Use of prescription spray coolant, such as Fluori-Methane or ethyl chloride (Pain-Ease); applied to the skin for 10 to 15 seconds immediately before the needle puncture; anesthesia lasts about 15 seconds
        • Some children dislike cold; may be more comfortable to spray coolant on a cotton ball and then apply this to the skin
        • Application of ice to the skin for 30 seconds found to be ineffective
    • Rectal
      • Alternative to oral or parenteral routes
      • Variable absorption rate
      • Generally disliked by children
      • Many drugs able to be compounded into rectal suppositories
    • Regional Nerve Block
      • Use of long-acting local anesthetic (bupivacaine or ropivacaine) injected into nerves to block pain at site
      • Provides prolonged analgesia postoperatively, such as after inguinal herniorrhaphy
      • May be used to provide local anesthesia for surgery, such as dorsal penile nerve block for circumcision or for reduction of fractures
    • Inhalation
      • Use of anesthetics, such as nitrous oxide, to produce partial or complete analgesia for painful procedures
      • Side effects (e.g., headache) possible from occupational exposure to high levels of nitrous oxide
    • Epidural or Intrathecal
      • Involves catheter placed into epidural, caudal, or intrathecal space for continuous infusion or single or intermittent administration of opioid with or without a long-acting local anesthetic (e.g., bupivacaine, ropivacaine)
      • Analgesia primarily from drug’s direct effect on opioid receptors in spinal cord
      • Respiratory depression rare but may have slow and delayed onset; can be prevented by checking level of sedation and respiratory rate and depth hourly for initial 24 hours and decreasing dose when excessive sedation is detected
      • Nausea, itching, and urinary retention common dose-related side effects from the epidural opioid
      • Mild hypotension, urinary retention, and temporary motor or sensory deficits common unwanted effects of epidural local anesthetic
      • Catheter for urinary retention inserted during surgery to decrease trauma to child; if inserted when child is awake, anesthetize urethra with lidocaine
    • Patient-Controlled Analgesia
      • Patient controls the amount and frequency of the analgesic, which is typically delivered through a special infusion device. 
      • Children who are physically able to “push a button” (i.e., 5 to 6 years of age) and who can understand the concept of pushing a button to obtain pain relief can use PCA
      • PCA infusion devices typically allow for three methods or modes of drug administration to be used alone or in combination:
        • Patient-administered boluses that can be infused only according to the preset amount and lockout interval (time between doses).
          • More frequent attempts at self-administration may mean the patient needs the dose and time adjusted for better pain control.
        • Nurse-administered boluses that are typically used to give an initial loading dose to increase blood levels rapidly and to relieve breakthrough pain (pain not relieved with the usual programmed dose).
        • Continuous basal rate infusion that delivers a constant amount of analgesic and prevents pain from returning during those times, such as sleep, when the patient cannot control the infusion.
    • Epidural Analgesia
      • Although an epidural catheter can be inserted at any vertebral level, it is usually placed into the epidural space of the spinal column at the lumbar or caudal level
      • The thoracic level is usually reserved for older children or adolescents who have had an upper abdominal or thoracic procedure, such as a lung transplant. 
      • An opioid (usually fentanyl, hydromorphone, or preservative-free morphine, which is often combined with a long-acting local anesthetic, such as bupivacaine or ropivacaine) is instilled via single or intermittent bolus, continuous infusion, or patient-controlled epidural analgesia. 
      • Analgesia results from the drug’s effect on opiate receptors in the dorsal horn of the spinal cord, rather than the brain. 
      • As a result, respiratory depression is rare, but if it occurs, it develops slowly, typically 6 to 8 hours after administration.
      • Careful monitoring of sedation level and respiratory status is critical to prevent opioid-induced respiratory depression.
      • Assessment of pain and the skin condition around the catheter site are important aspects of nursing care.
    • Transmucosal and Transdermal Analgesia
      • Oral transmucosal fentanyl (Oralet) and intranasal fentanyl provides nontraumatic preoperative and preprocedural analgesia and sedation. 
      • Fentanyl is also available as a transdermal patch (Duragesic). 
      • Duragesic is contraindicated for acute pain management, but it may be used for older children and adolescents who have cancer pain or sickle cell pain or for patients who are opioid tolerant.
      • One of the most significant improvements in the ability to provide atraumatic care to children undergoing procedures is the anesthetic cream
  • Side effects of Opioids
    • General
      • Constipation (possibly severe)
      • Respiratory depression
      • Sedation
      • Nausea and vomiting
      • Agitation, euphoria
      • Mental clouding
      • Hallucinations
      • Orthostatic hypotension
      • Pruritus
      • Urticaria
      • Sweating
      • Miosis (may be sign of toxicity)
      • Anaphylaxis (rare)
    • Signs of Tolerance
      • Decreasing pain relief
      • Decreasing duration of pain relief
    • Signs of Withdrawal Syndrome in Patients With Physical Dependence
      • Initial Signs of Withdrawal
        • Lacrimation
        • Rhinorrhea
        • Yawning
        • Sweating
      • Later Signs of Withdrawal
        • Restlessness
        • Irritability
        • Tremors
        • Anorexia
        • Dilated pupils
        • Gooseflesh
        • Nausea, vomiting
    • Managing Opioid-Induced Respiratory Depression
      • If Respirations Are Depressed
        • Assess sedation level.
        • Reduce Infusion by 25% When Possible.
        • Stimulate patient (shake shoulder gently, call by name, ask to breathe).
        • Administer oxygen.
      • If Patient Cannot Be Aroused or Is Apneic
        • Initiate resuscitation efforts as appropriate.
        • Administer naloxone (Narcan):
          • For children weighing less than 40 kg (88 lbs), dilute 0.1 mg naloxone in 10 mL sterile saline to make 10 mcg/mL solution, and give 0.5 mcg/kg.
          • For children weighing more than 40 kg (88 lbs), dilute 0.4-mg ampule in 10 mL sterile saline and give 0.5 mL.
        • Administer bolus by slow intravenous (IV) push every 2 minutes until effect is obtained.
        • Closely monitor patient. Naloxone’s duration of antagonist action may be shorter than that of the opioid, requiring repeated doses of naloxone.
  • Fear of Opioid Addiction
    • One of the reasons for the unfounded but prevalent fear of addiction from opioids used to relieve pain is a misunderstanding of the differences between physical dependence, tolerance, and addiction.
      • Physical dependence 
        • Is a physiologic state in which abrupt cessation of the opioid, or administration of an opioid antagonist, results in a withdrawal syndrome. 
        • Physical dependence on opioids is an expected occurrence in all individuals who continuously use opioids for therapeutic or nontherapeutic purposes. It does not, in and of itself, imply addiction.
      • Tolerance 
        • Is a form of neuroadaptation to the effects of chronically administered opioids (or other medications) that is indicated by the need for increasing or more frequent doses of the medication to achieve the initial effects of the drug. 
        • A person may develop tolerance both to the analgesic effects of opioids and to some of the unwanted side effects, such as respiratory depression, sedation, or nausea. Tolerance is variable in occurrence, but it does not, in and of itself, imply addiction.
      • Addiction 
        • Is characterized by a persistent pattern of dysfunctional opioid use that may involve any or all of the following:
          • Adverse consequences associated with the use of opioids
          • Loss of control over the use of opioids
          • Preoccupation with obtaining opioids, despite the presence of adequate analgesia

 

Complications

  • Chronic and Recurrent Pain Assessment
    • Pain that persists for 3 months or longer than the expected period of healing
      • Complex regional pain syndrome
      • Chronic daily headache
      • Multidirectional rating scale
        • Physical functioning
        • Emotional functioning
        • Social functioning
        • School functioning
  • Pain assessment in specific populations
    • Pain in neonates
      • Manifestations of Acute Pain in the Neonate
        • Physiological responses
          • Vital signs: Observe for variations
            • Increased heart rate
            • Increased blood pressure
            • Rapid, shallow respirations
          • Oxygenation
            • Decreased transcutaneous oxygen saturation (TcPO2)
            • Decreased arterial oxygen saturation (SaO2)
          • Skin: Observe color and character
            • Pallor or flushing
            • Diaphoresis
            • Palmar sweating
          • Other observations
            • Increased muscle tone
            • Dilated pupils
            • Decreased vagal nerve tone
            • Increased intracranial pressure
            • Laboratory evidence of metabolic or endocrine changes: Hyperglycemia, lowered pH, elevated corticosteroids
        • Behavioral Responses
          • Vocalizations: Observe quality, timing, and duration
            • Crying
            • Whimpering
            • Groaning
          • Facial expression: Observe characteristics, timing, orientation of eyes and mouth
            • Grimaces
            • Brow furrowed
            • Chin quivering
            • Eyes tightly closed
            • Mouth open and squarish
          • Body movements and posture: Observe type, quality, and amount of movement or lack of movement; relationship to other factors
            • Limb withdrawal
            • Thrashing
            • Rigidity
            • Flaccidity
            • Fist clenching
          • Changes in state: Observe sleep, appetite, activity level
            • Changes in sleep-wake cycles
            • Changes in feeding behavior
            • Changes in activity level
            • Fussiness, irritability
            • Listlessness
    • Children with communication and cognitive impairment
      • Children who have significant difficulties in communicating with others about their pain include those who have significant neurologic impairments are at a greater risk for undertreatment of pain
        • Cerebral palsy 
        • Cognitive impairment
        • Metabolic disorders
        • Autism
        • Severe brain injury
        • Communication barriers (e.g., critically ill children who are on ventilators or heavily sedated or have neuromuscular disorders, loss of hearing, or loss of vision)
      • They often experience spasticity, contractures, injury, infection, and orthopedic surgical treatment that may be painful. 
      • Behaviors include moaning, inconsistent patterns of play and sleep, changes in facial expression, and other physical problems that may mask expression of pain and be difficult to interpret.
      • Pain scales
        • Observational scales and interview questionnaires for pain may not be as reliable for pain assessment as self-report scales in children of Hispanic origin
        • Children of Asian descent, who may learn to read Chinese characters vertically downward and from right to left, may have difficulty using horizontally oriented scales.
    • Cultural differences
      • Expression of pain can be greatly affected by communication barriers
      • Cultural background may influence the validity and reliability of pain assessment tools developed in a single cultural context.
    • Children with chronic illness and complex pain
      • Questionnaires and pain assessment scales do not always provide the most meaningful means of assessing pain in children, particularly for those with complex pain  
      • Some children cannot relate to a face or a number that describes their pain
      • Other children, such as those with cancer, are experiencing multiple symptoms and may find it difficult to isolate the pain from other symptoms.
      • In addition to asking the child or parent when the pain started and how long the pain lasts, the nurse can assess variations and rhythms by asking whether the pain is better or worse at certain times of the day or night.
      • If the child has had pain for a while, the child or parent may know which medications and doses are helpful.
      • The nurse may ask the child or parent to keep a diary of activities, positions, and other events that may increase or decrease the pain
        • A diary can help families identify triggers that may cause pain and interventions that work.
  • Complementary pain medicine
    • Classification of complementary and alternative medicine
      • Biologically based
      • Manipulative treatments
      • Energy based
      • Mind-body techniques
      • Alternative medical systems
  • Nursing Actions
    • Assess pain thoroughly and adequately
    • Administer medications in a timely manner
    • Evaluate and monitor the child’s response to treatments
    • Titrate analgesic medications to achieve optimal dosing
    • Make recommendations for alternate medications if needed
  • Consequences of untreated Pain in Infants
    • Acute Consequences
      • Periventricular-intraventricular hemorrhage
      • Increased chemical and hormone release
      • Breakdown of fat and carbohydrate stores
      • Prolonged hyperglycemia
      • Higher morbidity for neonatal intensive care unit patients
      • Memory of painful events
      • Hypersensitivity to pain
      • Prolonged response to pain
      • Inappropriate innervation of the spinal cord
      • Inappropriate response to nonnoxious stimuli
      • Lower pain threshold
    • Potential Long-Term Consequences
      • Higher somatic complaints of unknown origin
      • Greater physiologic and behavioral responses to pain
      • Increased prevalence of neurologic deficits
      • Psychosocial problems
      • Neurobehavioral disorders
      • Cognitive deficits
      • Learning disorders
      • Poor motor performance
      • Behavioral problems
      • Attention deficits
      • Poor adaptive behavior
      • Inability to cope with novel situations
      • Problems with impulsivity and social control
      • Learning deficits
      • Emotional temperament changes in infancy or childhood
      • Accentuated hormonal stress responses in adult life
    • Common Pain States in Children
      • Levels of Sedation
        • Minimal Sedation (Anxiolysis)
          • Patient responds to verbal commands.
          • Cognitive function may be impaired.
          • Respiratory and cardiovascular systems are unaffected.
        • Moderate Sedation (Previously Conscious Sedation)
          • Patient responds to verbal commands but may not respond to light tactile stimulation.
          • Cognitive function is impaired.
          • Respiratory function is adequate; cardiovascular system is unaffected.
        • Deep Sedation
          • Patient cannot be easily aroused except with repeated or painful stimuli.
          • Ability to maintain airway may be impaired.
          • Spontaneous ventilation may be impaired; cardiovascular function is maintained.
        • General Anesthesia
          • Loss of consciousness, patient cannot be aroused with painful stimuli.
          • Airway cannot be maintained adequately, and ventilation is impaired.
          • Cardiovascular function may be impaired.
      • Painful and invasive procedures
        • Procedural sedation and analgesia
      • Postoperative pain 
        • Associated with surgery
        • Combination of medications
      • Burn pain
        • Multiple components
        • Difficult and challenging to control
      • Recurrent headaches
        • Tension, dental braces, weakness of eye muscles, sinusitis, epilepsy, sleep apnea, injury
      • Recurrent abdominal pain
        • Common in children
      • Pain associated with sickle cell disease
        • ED visits for opioid treatment
      • Cancer pain in children
        • Most prevalent symptom is pain
      • Pain and sedation in end-of-life care
        • Comfort can be relief with a combination of opioids and adjuvant analgesics

 

Impact of Chronic Illness, Disability, or End-of-Life Care for the Child and Family

  • Scope of the problem
    • Increasing viability of preterm infants
    • Portability of life-sustaining technology
    • Life-extending treatments
    • Rise in the numbers of children with complex and chronic diseases
  • Chronic Conditions of Childhood
Specialty Examples of Chronic Conditions
Cardiology Complex congenital heart disease, congestive heart failure, cardiac dysrhythmias, Kawasaki disease, rheumatic fever, hyperlipidemia
Endocrinology Diabetes, congenital adrenal hyperplasia, Cushing syndrome
Gastroenterology Short bowel syndrome, biliary atresia, inflammatory bowel disease, hepatitis, cirrhosis, peptic ulcer disease, celiac disease
Hematology  Sickle cell anemia, thalassemia, aplastic anemia, hereditary anemias, hemophilia
Immunology Immune deficiency, human immunodeficiency virus, Wiskott-Aldrich syndrome, severe combined immunodeficiency disease
Nephrology Prune belly syndrome, renal disease
Neurology Cerebral palsy, ataxia telangiectasia, muscular dystrophy, seizure disorder, spina bifida, traumatic brain injury
Oncology Brain tumor, leukemia, lymphoma, solid tumors, bone tumors, rare tumors
Pulmonology Asthma, chronic lung disease, cystic fibrosis, tuberculosis
Rheumatology  Systemic lupus erythematosus, juvenile rheumatoid arthritis, dermatomyositis

 

  • Trends in care
    • Developmental focus
      • This instead of focusing on the chronological age or diagnosis emphasizes the child’s abilities and strengths rather than disabilities
      • Attention is directed to normalizing experiences the child’s abilities and strengths rather than disabilities.
      • It also considers family development
        • The life cycle of the family unit reflects changing ages and needs of family members, as well as changing external demands. 
        • A family member’s serious illness can cause significant stress or crisis at any stage of the family life cycle. 
        • Just as with individual development, family development may be interrupted or even regress to an earlier level of functioning. 
        • Nurses can use the concept of family development to plan meaningful interventions and evaluate care.
    • Family-centered care
      • This considers the family as the constant in the child’s life is especially evident in the care of children with special needs
      • As parents learn about the child’s health care needs, they often become experts in delivering care.
      • Health care providers, including nurses, are adjuncts to the child’s care and need to form partnerships with parents.
      • Effective communication and negotiation between parents and nurses are essential to forming trusting and effective partnerships and finding the best ways to meet the needs of the child and family
        • Family—Health care provider communication
        • Establishing a therapeutic relationship
          • Has been shown to predict improved health-related outcomes
          • To build successful therapeutic relationships with families, it is necessary for nurses to recognize parents’ expertise with regard to their child’s condition and needs. 
          • Health care environments for children with serious illnesses are fraught with obstacles that serve as barriers to successful therapeutic relationships with families. 
          • Individual discussions, especially with the case manager, primary nurse, clinical nurse specialist, or nurse practitioner, help establish a consistent and flexible care plan that can prevent conflicts or deal with these conflicts before they disrupt care.
        • The role of culture
          • For some ethnic and minority populations, cultural understandings of illness, the structure of family life, social roles for individuals with disabilities, and other factors related to the perception of children may differ from those of mainstream American culture.
          • Cultural attributes such as values and beliefs regarding an illness or chronic condition and its causation, social roles for people who are ill or disabled, family structure, the role of children, childrearing practices, self versus group orientation, spirituality, and time orientation also affect a family’s response to an illness or chronic condition in a child
    • Shared decision-making
      • This result from open, honest, culturally sensitive communication and the establishment of a therapeutic relationship among the family and health care providers.
        • Facilitating shared decision making
          • Continually assess the impact of the child’s illness and treatment on the family.
          • Provide honest, accurate information regarding the trajectory of the disease, anticipated complications, and prognostic information.
          • Discuss what the family desires for the child’s quality of life.
          • Avoid personal opinion or judgment of the family’s questions and decisions.
          • Be aware of nurses’ personal and cultural assumptions and the ways these assumptions impact communication, decision making, and judgment.
    • “Normalization”
      • This efforts family members make to create a normal family life, their perceptions of the consequences of these efforts, and the meanings they attribute to their management efforts
      • For chronically ill children, such efforts may include attending school, pursuing hobbies and recreational interests, and achieving employment and a level of independence. 
      • For their families, it may entail adapting the family routine to accommodate the ill or disabled child’s health and physical needs
      • Nurses can assist families in normalizing their lives by assessing the family’s everyday life, social support systems, coping strategies, family cohesiveness, and family and community resources.
      • Goal of home care is:
        • Normalize the life of the child, including those with technologically complex care, in a family and community context and setting.
        • Minimize the disruptive impact of the child’s condition on the family.
        • Foster the child’s maximum growth and development.

 

  • The Familly of the Child with a Chronic or Complex Condition
    • Adaptive tasks of Parents having children with chronic conditions
      • Accept the child’s condition.
      • Manage the child’s condition on a day-to-day basis.
      • Meet the child’s normal developmental needs.
      • Meet the developmental needs of other family members.
      • Cope with ongoing stress and periodic crises.
      • Assist family members to manage their feelings.
      • Educate others about the child’s condition.
      • Establish a support system.
    • Impact of the child’s chronic illness
      • Parents
        • In addition to the stress of grieving for the loss of hope for a perfect child, parents are affected by whether or not they receive positive feedback from interactions with their child. 
        • Many parents feel satisfaction and fulfillment from the parenting role. 
        • For others, parenting may be a series of unrewarding experiences that contribute to feelings of inadequacy and failure
        • Anticipated Parental Stress Points
          • Diagnosis of the condition: 
            • Parents require considerable education while dealing with an emotional response.
          • Developmental milestones: 
            • Times that children normally achieve walking, talking, and self-care are delayed or impossible for the child.
          • Start of schooling: 
            • Particularly stressful are situations in which appropriate schooling will not be in a regular class placement.
          • Reaching the ultimate attainment: 
            • Parents must handle situations such as realizing that ambulation will be impossible or that the child will not learn to read.
          • Adolescence: 
            • Issues such as sexuality and independence become prominent.
          • Future placement: 
            • Decisions about placement must be made when the child becomes an adult or when the parents can no longer care for the child.
          • Death of the child
        • Parental roles
          • Parenting a child with a complex chronic condition requires attending to the routine aspects of parenting with the added responsibility of 
            • Performing complex technical care
            • Symptom management
            • Advocating for their child
            • Seeking and coordinating health and social services for their ill or disabled child
          • These added responsibilities must then be balanced with the needs of other family members, extended family and friends, and personal health and obligations to minimize consequences to the overall functioning of the family
          • The nurse can assist parents in avoiding role conflicts by providing anticipatory guidance early on. 
          • Teaching should address stressors often identified as having an impact on the marriage
            • The burden of care at home assumed by primarily one parent
            • The financial burden
            • The fear of the child dying
            • Pressure from relatives
            • The hereditary nature of the disease
            • Fear of pregnancy.
        • Mother-Father Differences
          • Mothers are often the primary caregiver and are more likely than fathers to give up their jobs to care for their children, often resulting in social isolation
            • Often have greater needs for social support and positive appraisal of the situation than fathers.
          • Fathers of children with disabilities struggle with issues that may be distinct from those of the mothers may think that their role as protector is challenged, 
            • This is because they do not know how to help and cannot protect their family from the seemingly overwhelming recurring problems. 
            • The extensive stresses in the family can leave fathers feeling depressed, weak, guilty, powerless, isolated, embarrassed, and angry. 
            • Fearful that they will lose control or be viewed as weak or ineffectual, however, fathers often hide their feelings and display an outward confidence that may lead others to believe that everything is fine. 
            • Fathers worry about what the future holds for their children, their ability to manage the increasing financial burden, and the daily disruptions of the entire family
        • Single-Parent Families
          • As the only parent of a child who may require extensive, sophisticated, and lifelong care, the single parent may feel an enormous burden. 
          • Available financial and emotional resources may already be stretched to the limit. 
          • A special effort should be made to assist the single parent in finding financial and support services that can ease the burden of care.
          • Nurses can also assist the single parent in identifying helping roles that may be acceptable to relatives and friends.
      • Siblings
        • Most evidence shows a negative effect on siblings of children with chronic illnesses compared with siblings of healthy children
        • Siblings of children with chronic illnesses report psychosocial problems more often than their peers
        • Several factors increase the risk of negative effects for siblings of ill children. 
        • Responsibility for caregiving, differential treatment by parents, and limitations in family resources and recreational time are often the experiences of siblings of ill or disabled children
        • Supporting siblings of children with special needs
          • Promote healthy sibling relationships
            • Value each child individually and avoid comparisons. 
              • Remind each child of his or her positive qualities and contribution to other family members.
            • Help siblings see the differences and similarities between themselves and the child with special needs. 
              • Create a climate in which children can achieve successes without feeling guilty.
            • Teach siblings ways to interact with the child.
            • Seek to be fair in terms of discipline, attention, and resources; require the affected child to do as much for himself or herself as possible.
            • Let siblings settle their own differences; intervene only to prevent siblings from hurting one another.
            • Legitimize reasonable anger. 
              • Even children with special needs behave badly sometimes.
            • Respect a sibling’s reluctance to be with or to include the child with special needs in activities.
          • Help siblings cope
            • Listen to siblings to let them know that their thoughts and suggestions are valued.
            • Praise siblings when they have been patient, have sacrificed, or have been particularly helpful. 
              • Do not expect siblings to always act in this manner.
            • Acknowledge the personal strengths siblings have and their ability to cope with stress successfully.
            • Provide age-appropriate information about the child’s condition and update it when appropriate.
            • Let teachers know what is happening so that they can be understanding and helpful.
            • Recognize special stress times for siblings, and plan to minimize negative effects.
            • Schedule special time with siblings; have a friend or family member substitute when parent is unavailable.
            • Encourage siblings to join or help establish a sibling support group.
            • Use the services of professionals when needed. If parent feels that such a service is necessary, it should be provided in as vigorous a manner as a service for the child with special needs.
          • Involve siblings
            • Seek out ways to realistically include siblings in the care and treatment of the child with special needs.
            • Limit caregiving responsibilities, and give recognition when siblings perform them.
            • Develop a library of children’s books on special needs.
            • Invite siblings to attend meetings to develop plans for the child with special needs (e.g., individualized educational program [IEP], individualized family service plan [IFSP]).
            • Discuss future plans with siblings.
            • Solicit their ideas on treatment and service needs.
            • Have siblings visit professionals who work with the child.
            • Help siblings develop competencies to teach the child new skills.
            • Provide opportunities for siblings to advocate for the child.
            • Allow siblings to set their own pace for learning and involvement.
    • Assessing coping behaviors
      • Approach behaviors
        • Asks for information regarding diagnosis and child’s present condition
        • Seeks help and support from others
        • Anticipates future problems; actively seeks guidance and answers
        • Endows the chronic illness or complex condition with meaning
        • Shares burden of disorder with others
        • Plans realistically for the future
        • Acknowledges and accepts child’s awareness of diagnosis and prognosis
        • Expresses feelings (e.g., sorrow, depression, and anger) and realizes reason for the emotional reaction
        • Realistically perceives child’s condition; adjusts to changes
        • Recognizes own growth through passage of time, such as earlier denial and nonacceptance of diagnosis
        • Verbalizes possible loss of child
      • Avoidance Behaviors
        • Fails to recognize seriousness of child’s condition despite physical evidence
        • Refuses to agree to treatment
        • Intellectualizes about the illness but in areas unrelated to child’s condition
        • Is angry and hostile to members of the staff regardless of their attitude or behavior
        • Avoids staff, family members, or child
        • Entertains unrealistic future plans for child with little emphasis on the present
        • Is unable to adjust to or accept a change in progression of disease
        • Continually looks for new cures with no perspective toward possible benefit
        • Refuses to acknowledge child’s understanding of disease and prognosis
        • Uses magical thinking and fantasy; may seek “occult” help
        • Places complete faith in religion to point of relinquishing own responsibility
        • Withdraws from outside world; refuses help
        • Punishes self because of guilt and blame
        • Makes no change in lifestyle to meet needs of other family members
        • Resorts to excessive use of alcohol or drugs to avoid problems
        • Verbalizes suicidal intent
        • Is unable to discuss possible loss of child or previous experiences with death
    • Assisting family members in managing their feelings
      • Shock and Denial
        • Shock and denial can last from days to months, sometimes even longer. 
        • Examples of denial that may be exhibited at the time of diagnosis include the following:
          • Physician shopping
          • Attributing the symptoms of the actual illness to a minor condition
          • Refusing to believe the diagnostic tests
          • Delaying consent for treatment
          • Acting happy and optimistic despite the revealed diagnosis
          • Refusing to tell or talk to anyone about the condition
          • Insisting that no one is telling the truth, regardless of others’ attempts to do so
          • Denying the reason for admission
          • Asking no questions about the diagnosis, treatment, or prognosis
      • Adjustment
        • This stage may be accompanied by several responses, which are normal parts of the adaptation process. 
        • Probably the most universal of these feelings are guilt and self-accusation.
        • Guilt 
          • Guilt is often greatest when the cause of the disorder is directly traceable to the parent, as in genetic diseases or accidental injury. 
          • However, it can occur even without any scientific or realistic basis for parental responsibility. 
          • Frequently, the guilt stems from a false assumption that the child’s condition is a result of personal failure or wrongdoing, such as not doing something correctly during pregnancy or the birth.
          • Some parents are convinced that they are being punished for some previous misdeed. 
          • Others may see the illness as a trial sent by God to test their religious strength and faith.
          • Children may interpret their serious illness as retribution for past misbehavior. 
          • The nurse should be particularly sensitive to the child who passively accepts all painful procedures. 
          • This child may believe that such acts are inflicted as deserved punishment.
        • Anger
          • Anger directed inward may be evident as self-reproaching or punitive behavior, such as neglecting one’s health and verbally degrading oneself. 
          • Anger directed outward may be manifested in either open arguments or withdrawal from communication and may be evident in the person’s relationship with any number of individuals, such as the spouse, the child, and siblings. 
          • Passive anger toward the ill child may be evident in decreased visiting, refusal to believe how sick the child is, or an inability to provide comfort.
          • Children are apt to respond with anger as well, and this includes the affected child and the well siblings
          • Children are aware of the loss engendered by their illness or complex condition and may react angrily to the restrictions imposed or the feelings of being different.
          • Siblings may also feel anger and resentment toward the ill child and parents for the loss of routine and parental attention. 
          • It is difficult for older children and almost impossible for younger children to comprehend the plight of the affected child. 
          • Their perception is of a brother or sister who has the undivided attention of their parents, is showered with cards and gifts, and is the focus of everyone’s concern.
        • During the period of adjustment, four types of parental reactions to the child influence the child’s eventual response to the disorder:
          • Overprotection: 
            • The parents fear letting the child achieve any new skill, avoid all discipline, and cater to every desire to prevent frustration.
          • Rejection: 
            • The parents detach themselves emotionally from the child but usually provide adequate physical care or constantly nag and scold the child
          • Denial: 
            • The parents act as if the disorder does not exist or attempt to have the child overcompensate for it.
          • Gradual acceptance: 
            • The parents place necessary and realistic restrictions on the child, encourage self-care activities, and promote reasonable physical and social abilities.
      • Reintegration and Acknowledgment
        • This adjustment phase also involves social reintegration in which the family broadens its activities to include relationships outside of the home with the child as an acceptable and participating member of the group.
      • Establishing a support system
        • Nursing goal is to assess which families are at risk for succumbing to the effects of the crisis.
        • Several variables influence the resolution of a crisis 
          • Available support system
          • Perception of the event
          • Coping mechanisms
          • Reactions to the child
          • Available resources
          • Concurrent stresses within the family
        • By receiving emotional support and guidance early, there is an increased likelihood that they will also cope successfully.
        • Concept of functional burden
          • Impact of the child with special needs
            • The child’s need for medical and nursing care
            • The child’s fixed deficits
            • The child’s age-appropriate dependency in activities of daily living
            • The disruptions in the family routine caused by the care
            • The psychologic burden of the prognosis on the family
          • Family Resources and Ability to Cope
            • The family’s physical resources
            • The family’s emotional resources
            • The family’s educational resources
            • The family’s social supports and available help
            • The competing demands for family members’ time and energy

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