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Home care of the child and family after near drowning
Home Care of the Child and Family . after Near Drowning n Sherrilyn
Passo Coffman,
DNS,
RN
A significant number of children experience submersion accidents every year in the United States, and many of these children suffer irreversible brain injury as a result. The effects on family members can be overwhelming as they adjust to caring for their disabled child at home. Nurses assist the family in planning for home care and provide direct care in the home. Nursing care is adapted to meet the unique requirements of the home setting. The nurse must be technically competent as well as compassionate to meet the needs of the child and family. J PEDIATR HEALTH CARE. (1992). 6, 18-24.
N
ear drowning is an accident of uncertainty. Defined as survival from a submersion injury for 24 hours after rescue, near drowning may result in complete recovery, severe brain injury, or variable neurologic deficits. Drowning is the leading cause of accidental death in infants and young children in 10 states; however, the incidence of near drowning is more than ten times the incidence of drowning (Consumer Product Safety Commission, 1988). In the United States, it is estimated that 1 in every 301 boys and 1 in every 913 girls, aged birth through 19 years, will be hospitalized for a near-drowning accident (Wintemute, 1990). The typical submersion accident involves a child under 5 years of age who slips briefly from adult eyesight supervision, gains accessto the family pool area through an unlocked patio door or fence, and silently wades or falls into the water. Even a young child who has had swimming lessions often is unable to float or swim to safety. By the time a child is discovered in the pool, he or she may have suffered irreversible injury. SUBMERSION AND INJURY
n
ACCIDENT
SEQUENCE
A submersion injury usually begins with a panic reaction as the child’s face unexpectedly goes under the water. This panic reaction is accompanied by dysrhythmic breathing, and the child may or may not aspirate water into the lungs. All children with a history of significant submersion injury should be admitted to the hospital for at least 24 hours of observation. Even children with no untoward effects at the time of the accident may develop delayed pulmonary or cerebral edema. VomSherrilyn Passe Coffman is assistant professor Atlantic University, Boca Raton, Florida.
in the School of Nursing,
Reprint requests: Sherrilyn Passo Coffman, School of Nursing, University, PO Box 3091, Boca Raton, FL 33431. 25/1128100
18
Florida
Florida Atlantic
iting and aspiration are other dangers in the child who has swallowed water (Gonzalez-Rothi, 1987). The child who requires resuscitation after submersion may be obtunded or comatose on arrival in the emergency room and is likely to require intubation and aggressive therapy. Factors associated with a poor prognosis include fixed and dilated pupils, coma, and the necessity for CPR in the emergency department (Frates, 1981). Of the children who require CPR in the emergency room, it is estimated that 35% to 60% die, and 60% to 100% of the survivors are severely brain damaged (Wiitemute, 1990). Overall, it is estimated that 20% of hospitalized survivors of near drowning have severe and permanent neurologic disability (Division of Injury Control, 1990). The child who survives with severe brain injury suffers from multiple disabilities. Neurologic impairments include coma, disorders in muscle tone, sensory deficits, and seizure disorders. Various degrees of visual and hearing deficits limit the child’s sensory input, and response to stimulation may be limited to moaning, tensing muscles, or relaxing. Many of these children have tracheostomy tubes because of difliculties in airway maintenance. Because they are unable to swallow, most children are fed through gastrostomy tubes and receive medications by this route. Specially designed wheelchairs, splints, and other adaptive devices are used to prevent or treat musculoskeletal deformities caused by paralysis and abnormal muscle tone. n
TRANSITION
FROM
HOSPITAL
TO HOME
Evidence is clear that severely disabled children have a better chance of achieving optimal development when they are cared for at home rather than in an institution. The respiratory and feeding disorders suffered in severe near drowning, coupled with the child’s comatose state and neuromuscular disabilities, necessitate technologically sophisticated intervention. These benefits and deJOURNAL
OF PEDIATRIC
HEALTH
CARE
Journaloi Pediatric
Home Care after Near Drowning
Health Care
mands of home care present a challenge for hospital staff and parents during discharge planning. The discharge planning process begins in the acute care setting and continues if the childis transferred to a rehabilitation facilitv.,
Evidence
is clear that severely disabled children have a better chance of achieving optimal development when they are cared for at home rather than in an institution.
A comprehensive assessment of the needs and abilities of the child, the needs of the family, and available community resources is the first critical step in home care planning (Kaufman, 1988). How are the family’s needs determined? Staff begin by asking parents what they need. Some parents will be able to state their needs immediately, while for others it may take longer. Consistency and “just being there” to support a family are of primary importance. As parents feel capable of taking on responsibility, they become equal partners in developing plans for the care of their child (National Center for Clinical Infant Programs, 1985). By supporting parents, listening to them, and seeking them out to make decisions, hospital staff give parents an important message-that parents are capable of performing these tasks at home. The American Academy of Pediatrics Ad Hoc Task Force on Home Care of Chronically Ill Infants and Children (1984) has outlined several factors that must be included when planning home care for children. These include environmental factors (space, water, electricity, and telephone)., child factors (benefits, risks, and care needs), family factors (involvement and training of family members), and community factors (medical, social, and educational resources). Financial considerations affect each of these areas and may dictate what types of resources can be used in home care. If the family has private insurance, that coverage becomes the basis for financial planning. The family may be eligible for assistance from public programs such as Medicaid and State Programs for Children with Special Health Care Needs. Severely disabled ‘children often require 24-hour nursing care in the home setting. Initially, most families select a home health agency to recruit and schedule nurses. Parents may need guidance as they determine what questions to ask in selecting an agency (Briggs, 1987; Kaufman, 1988). It can be beneficial for the home care nurse to meet the child and family before the child is discharged and to receive training in the hospital setting. Coordination of care is facilitated as the home care nurse works with parents and hospital staff to plan for physical, occupational, and speech therapy at home. Se-
19
curing the special supplies and equipment needed by the child at home also is an important part of preparation. n
ENVIRONMENTAL
FACTORS
Parents may feel that they are establishing a “mini hospital” in their home as they prepare for their child’s return. The ability of the physical setting to support highly technical equipment must be assessed. A home visit by professional staff assists parents in answering questions about the home environment: Is there adequate space, especially if a hospital bed is used? Are electric outlets available and safe for use with monitors, suction machines, and other electrical equipment? Is lighting appropriate for both daytime and nighttime use? Is running water accessible to staff for handwashing and cleaning of equipment? After home care begins, nurses may undertake special responsibilities for environmental needs. Safety and hygiene are of primary importance. Care must be taken to turn off oxygen tanks after use. Medications and cleaning fluids must be kept out of reach of younger siblings in the home. Tubing and other equipment for respiratory treatments are used for 24 hours and then soaked in a special cleaning solution, rinsed, and air dried. Parents and nurses on all shifts must clarify who is responsible for daily tasks such as emptying trash cans, dusting, and inventory of supplies. n
THE CHILD:
NEEDS AND CARE
The nursing care plan takes into consideration the individual child’s reactions and needs and provides guidelines to ensure consistency of care across all nursing shifts. An example of one portion of a formalized care plan is presented in Box 1. The nursing process provides the structure for care, beginning with assessment. Focusing on the particular problems and strengths of the child, the nursing assessment provides guidance for either following routine care or modifying care. In the home setting, these judgments must be made independently by the nurse; however, mechanisms should be established to allow consultation with the nursing coordinator or the physician when questions arise.
F
irst-hand knowledge of technical equipment and working knowledge of the child’s medical needs are minimum requirements for nurses. First-hand knowledge of technical equipment and working knowledge of the child’s medical needs are minimum requirements for nurses. A mechanism for orientation of new or temporary nurses should be established. One nurse who is familiar with the family and the needs of the child is designated as coordinator. This
20
Volume 6, Number 1 lanuary-February 1992
Coffman
n
Sample care plan for gastrustomy
tube feedings
Nursing diagnoses: Alteration in nutrition and impaired swallowing . Nursing actions:
l
Procedure: l Warm formula to room temperature. o Give medications in water before or after feeding. Note: Mix Metamucil in 30 to 60 ml water and give immediately. l Regulate feeding at a slow drip rate to go in over 30 to 60 minutes. (Too rapid flow causeshiccups.) l After feeding, flush with remaining water. (Water can be added to bag if line is full.) l Leave G-tube unclamped, open to bag, 30 minutes after feeding. l Clamp G-tube with stopper and rubber band.
Timing: l l
Feeding should not begin until 60 minutes after respiratory treatment. Respiratory treatment should not begin until 1?2 hours after feeding.
Care of Equipment:
Rinse all feeding bags, syringes, cups thoroughly in hot water after each use and drain. Do not place feeding equipment in antiseptic solution. e Soak feeding bags with warm water and 1 tsp. baking soda about 1 hour after use. o Brushes, pipe cleaners, etc., are available for use in cleaning equipment. l
individual takes responsibility for maintaining lines of communication between nurses, using methods such as communication notebooks and telephone conferences. Changes in medications or daily activity schedules, new approaches to therapy, and other alterations in care can be communicated quickly and effectively when such mechanisms are used. Sensory
Stimulation
Although the brain-damaged child may not be able to communicate verbally, tension and comfort are communicated through changes in muscle tone, skin color, posturing, and other physiologic signs. Most children are able to hear what is spoken to them and all can sense the touch of their caretakers as they respond to the universal language of love and care. The goal of stimulation is to use the child’s sensory abilities without overstressing the child. These children can benefit from having books read to them or from listening to tapes of music, stories, voices of family members, musical toys, or music boxes. Visual stimulation should be appropriate to the child’s abilities and may range from changes in light intensity for the child with minimal vision to colors and patterns in toys or pictures when vision is nearly normal. Even if the child cannot swallow, taste and smell can be stimulated by allowing the child to smell or taste cooking extracts, such as lemon or
peppermint. Therapeutic touch through massage or vibration can be very soothing to aid in relaxation. Routines
of Daily
Living
Maintaining stable yet flexible routines of daily living is an important way to integrate the child into family life. Nurses on all shifts should strive to maintain consistency yet adapt to changes in family schedules. Regular times should be established for feedings, respiratory treatments, bathing, linen changes, naptimes or sleep, therapies, school, and family interaction. A natural activity for the child to share with siblings is watching or listening to cartoons on television. Involvement of all family members in care of the child is important, and each individual is supported to participate in the way he or she desires. Positioning
and Skin Care
Gentle handling is necessary because many of these children have osteoporosis and are prone to fractures. If the child has a tracheostomy, care must be taken not to occlude the tube when the child is positioned on his or her abdomen. Because of the child’s movement limitations, skin care and hygiene are important preventive measures. Redness or irritation around stoma sites may require treatment with antiseptic ointments and exposure of the stoma to air. While a nipple around the base
lournalof Pediatric
Home
Health Care
of the gastrostomy tube may be contraindicated if it traps moisture, it can be helpful to protect the stoma during movement. Respiratory
Care
Damage to the child’s lungs, difficulties with coughing and swallowing, and proneness to respiratory infections are factors that determine the child’s needs for respiratory therapy at home. Drooling is common because of the child’s difficulty in swallowing, and frequent oral suction may be required. For the child with a tracheostomy, a bulb suction device may be adequate to remove coughed up tracheal secretions. Deep tracheal suction can often be reserved for use after aerosol and chest physical therapy (CRT) treatments. Aerosol and CRT usually are given in the time period between 60 minutes before a feeding to 1 l/2 hours after a feeding, to prevent vomiting. The frequency of treatments depends on the child’s condition and proneness to congestion. Oxygen may be reserved for respiratory difficulties or may be used routinely with. tracheal suction. Special monitoring devices, such as a pulse oximeter, often are required when the child first comes home from the hospital or during respiratory illness. If the child has a tracheostomy, adaptations are made in care at home. Colorful shoelaces can be used as tracheostomy ties. The frequency of tube changes is clarified with the physician, and a record of each tube change is maintained. An extra tracheostomy tube should always be accessible in case of accidental displacement. A portable suction machine is necessary as the child moves from room to room within the house and is transported to appointments. The tracheostomy tube may be frightening to parents. Kennelly (1987) outlines a threefold focus for parent teaching. First, parents are required to learn technical skills such as suctioning, tube changing, skin care, and CPR. Second, parents must develop decisionmaking skills to determine when and how often to intervene. Third, parents must be encouraged to confront the emotional aspects of assuming such responsibility. These tasks also may be difficult for nurses, and the nursing coordinator must assure that all nurses are competent and consistent in tracheostomy care. Nutrition
and Elimination
Children with severe brain damage are dependent on gastrostomy tube feedings. The techniques used in feedings vary with each child, ranging from use of a feeding pump, to feeding intravenously by slow drip, to bolus feedings given by Toomey syringe. Formula is warmed to room temperature and given over a time period well tolerated by the child. After feedings, the tubing should
Care
after
Near
Drowning
21
be flushed with extra water, the amount of which can be varied to meet the child’s fluid volume requirements. It is important to adequately dilute thick medications with water during administration to prevent occlusion (Paarlberg & Balint, 1985). Occlusion is the most common reason for gastrostomy tube changes; other causes are deflation of the catheter balloon over time and accidental dislocation.
0
cclusion is the most common reason for gastrostomy tube changes. . ..
Monitoring nutritional status is accomplished by weighing the child on a weekly or regular basis and recording weight on a chart. Although nutritional needs increase as the child grows, some children are prone to obesity because of immobility. The immobile child also is prone to constipation and may require stool softeners or bulk expanders for normal elimination. A decrease in urinary volume may indicate the need for added fluid intake. Medications
Medication schedules are coordinated with feedings and respiratory treatments. After near drowning, many children require bronchodilators to counter respiratory effects, muscle relaxants for spasticity, and anticonvulsants for seizure control. Other medications may include vitamins, stool softeners, and antibiotics. Medications are mixed with water and given by the gastrostomy tube. Nurses should be knowledgeable about side effects of medications and about the child’s history of allergies. Supportive Therapies
Formal consultations and therapy sessions with occupational, physical, and speech therapists often are planned for the child in the home setting. Therapists may make home visits or the child may be transported to the therapy center. By accompanying the child during these visits, the home care nurse learns first hand the therapist’s assessment and plan for care. Areas of focus in therapy include head control, facial and oral exercises, sensory stimulation and play, mobility of trunk and back, weight bearing on joints, and range of motion to upper and lower extremities. Therapists demonstrate proper use of adaptive equipment. The nurse clarifies with therapists what activities are appropriate for nurses and family members to do at home. Written care plans for therapy sessions can be developed and distributed to nurses on all shifts. A videotape recording of a therapy session, which nurses can view, is another excellent educational tool.
22
Volume 6, Number 1 January-February 1992
Coffman
Emergency Protocol
Careful discussion and clarification is required among family, physician, and nursing stti regarding action to take in an emergency. The family may express the desire that the child should not be resuscitated if a respiratory or cardiopulmonary arrest occurs. In this situation, the home care nurse must be aware of legal steps taken by the family and of parent’s expressed decisions. Each nurse should think through what action to take if an emergency occurs, including whom to call (with phone numbers readily available) and what actions to take before the arrival of the rescue squad. Nurses and adult family members should be certified in CPR and understand how to adapt that training if the child has a tracheostomy. n
THE FAMILY-NURSE
RELATIONSHIP
Immediately after the accident, parents experience feelings of shock, disbelief, disorganization, and confusion. This initial state often is followed by a period of denial, when parents may not hear what is said to them or may distort what they hear. During this period parents may alternate between hope and despair or may avoid feelings altogether. A common reaction is to believe that the child will suddenly awake from a comatose state or a magical cure will take place. As parents begin to accept the reality of the situation, they often feel intense anger, which may be directed toward self, spouse, medical personnel, God, and others. The question ‘Why did this happen?” may be partially answered by finding someone to blame for the child’s condition. Other feelings commonly experienced by parents include helplessness, selfpity, loneliness, depression, and fatigue (N.I.C.H.C.Y., 1985). The issues of guilt and blame are paramount after a near-drowning accident. Guilt is an overwhelming reaction as parents question whether the accident could have been prevented. The injured child may have been at home with only one parent or in the care of a babysitter. At a time when family members and friends need to draw together for support, they may blame one another for the event.
M
... ost submersion accidents are the result of only a momentary lapse in supervision. . . .
The stigma attached to an accident that is viewed as preventable is an extra burden for parents to bear. The reaction of friends, relatives, and even professional staff may be unfavorable rather than supportive. To counteract this stigma, it is important for both parents and others to realize that most submersion accidents are the result of only a momentary lapse in supervision, rather
than negligence. In most cases the young child was missing only a few minutes, the accident happened silently, and there was no evidence that parents or other supervisors were not conscientious (Consumer Product Safety Commission, 1988). Parents and their support persons can benefit from talking with other parents or near-drowning victims, learning these facts, and sharing their feelings. Despite education, however, some friends and relatives may shun the family, and the loss of these friendships reduces the family’s normal outlets for companionship.
E
ach parent copes with the tragedy differently and may need help in understanding that these individual differences are normal.
The grieving process of parents after near drowning can be overwhelming and long lasting. Each parent copes with the tragedy differently and may need help in understanding that these individual differences are normal. Family members can benefit from psychological counseling and should be encouraged to seek help early after the injury. At the same time that parents are grieving the loss of their healthy child, they are confronted with multiple new and demanding tasks. They must become skilled caretakers, financial planners and negotiators, and managers for the home care of their disabled child. In consultation with social service and insurance representatives, parents must determine how home care will be financed. While learning how to suction, give gastrostomy feedings, position, stimulate, and other tasks, parents must also deal with their own emotional reactions to caretaking. Siblings of chronically disabled children are noted to be a population at risk for problems of future maladjustment. Each sibling’s response to the home situation is the result of a variety of interacting personal, family, and environmental factors. A high incidence of psychosomatic, emotional, behavioral, and academic problems has been noted to occur in siblings of disabled children. Some studies, however, demonstrate increased levels of maturity, altruism, and tolerance among siblings (Brett, 1988). After a near-drowning accident, siblings should be encouraged to express their feelings and thoughts about the accident. Guilt feelings should be discussed openly and a support system, including neighbors, teachers, counselors, and others should be developed for the sibling. The home care nurse serves as a special support person for siblings. Nurses must recognize and understand the natural responses of sadness, anger, guilt, and sometimes shame in family members. Open, direct, communications at a personal level are essential. The home care nurse’s goals
Journal of Pediatric Health
Care
Home
are to help the family members understand and accept their own confusing feelings, to communicate better with one another, and to take concrete actions to reduce stress (N.I.C.H.C.Y., 1985). Parents and other family members must participate in all processes of medical care and should be educated to help make informed decisions. Nowhere is it more clear than in home care that nurses must view their work with families as a partnership in which they are consultants, but the families are in charge.
n
COMMUNITY
FACTORS
The nurse plays an active role in linking the family with available social supports in the community. The needs of family members are similar to those of other families with chronically disabled children. Two needs are consistently expressed by families: parent-to-parent support and respite care. Participation in support groups by parents and siblings provides a social and emotional outlet that is unique. Support groups provide the opportunity to talk with others whose experiences are similar, to empathize, and to learn how others cope with difficulties. In some communities, there are support groups specifically di-
Drowning
23
can prode
infWmaticm
United Cerebral PalsyAssociations, Inc. 66 E. 34th St. New York NY 10016
home setting must be aware that their presence is both supportive and disruptive of family processes.
n
Near
Association for Retarded Citizens 2501 Avenue J Box 6109 Arlington, TX 76006
N urses in the
Nurses in the home setting must be aware that their presence is both supportive and disruptive of family processes. The constant presence of strangers in the home interferes with normal communication and emotional channels and may lead to inability to spontaneously express intimacy and resolve differences. At the same time that relationships between nurses and family members are growing closer, respect for privacy of family members must be maintained. This process requires personal awareness on the part of the nurse and sensitivity toward the needs of family members. When near drowning occurs in the family swimming pool, an emotional issue faced by parents is how to secure the pool. The family may be so traumatized that they feel the need to either modify the pool or move to another house. Parents need to discuss this issue and may require information about barriers and other safety devices to protect young siblings (Cofhnan, in press). Four-sided pool fencing, safety locks on access doors, pool covers, and pool alarms are examples of safety devices that provide extra layers of protection for young children in the home. Th.e nurse can serve as a resource person and a sounding board as parents educate themselves and make decisions on these issues.
after
BOX 2 Suggested resources
The fdowing agaxies about *te exe:
l
Care
l
The f&wing
pddkatims
are availabk:
Eqw.b in Thrj P-w: Parents of Disabled ad AtR&k In&htr ad Todd&~ Speakto Pwfm. National
Center for Clinical Infant Programs, 733 15th St., NW, Suite 912, Washington, DC 20005. C&&e% With Htwdiazps, Parent anri Fmaily Isspres:A Gde to Readiqgs. Refpite Care: A G@ of Tim. Both are available from Interstate Research Associates, P.O. Box 1492, Washington, DC 20013.
rected to families who have experienced drowning or near drowning (Ricci, 1989). Most communities sponsor support groups for parents of handicapped or mentally retarded children, and these groups can be equally valuable to parents of a near-drowning child. Support groups for siblings of handicapped children are another excellent resource, when available. Respite care has been consistently identified by families as a priority need (N.I.C.H.C.Y., 1989). As families meet the challenges of caring for a disabled child, time off can become a necessity. Respite care provides time for a family to take a needed vacation, spend time as a married couple, spend extra time with siblings, or become involved in new activities. To learn about respite care opportunities, parents and nurses can contact state or local agencies such as the United Cerebral Palsy Association or the Association for Retarded Citizens (Box 2). n
SUMMARY
Near drowning is a tragedy that places overwhelming demands on family members. In the midst of their grief, parents must learn to be skilled caretakers, managers, and organizers for the home care required by their neardrowning child. Nurses are in a unique position to educate and support parents as the child moves from acute care and rehabilitation facilities to care at home. Home care nurses must be competent in technical care, such
24
Volume 6, Number 1 January-February 1992
Coffman
as care of tracheostomies and eastrostomies. and must also be compassionate in rela&g to the disabled child and family. The relationship between family and nurse is one of alternating rhythms in which the nurse’s main objectives are sensitivity to family members’ needs and support of their strengths. As this caring process continues, both family members and nurses experience growth. 8 REFERENCES American Academy of Pediatrics Ad Hoc Task Force on Home Care of Chronically Ill Infants and Children (1984). Pediatrics, 74,434436. Brett, K. (1988). Sibling response to chronic childhood disorders: Research perspectives and practice implications. Issties in Comprehensive Pediatric Nursing, 11, 43-57. Briggs, N. (1987). Selecting a pediatric home care program. Pediatric &4&g, 13, 191. Coffman, S. (in press). Parent education for drowning prevention. JOURNAL OF PEDIATRIC HEALTHCARE. Consumer Product Safety Commission. (1988). Brie@-- package on pool safq. Washington, DC: Author. Division of Injury Control, Center for Environmental Health and Injury Control, Centers for Disease Control. (1990). Childhood injuries in the United States. American Journal ofDiseases in Cbildren, 144, 627-646.
Frates, R. (1981). Analysis of predictive factors in the assessment of warm-water near-drowning in children. American JmwnJ ofDisem% in Children, 135, 1006-1008. Gonzalez-Rothi, R. (1987). Near drowning: Consensus and controversies in pulmonary and cerebral resuscitation. Heart and Lung 16, 474-482. Kaufman, J. (1988). Pediatric home care. In L. Benefield (Ed.), Home health care manqment (pp. 304-325). Englewood Cliffs, NJ: Prentice Hall. Kennedy, C. (1987). Tracheostomy care: Parents as learners. MCN, 12, 264-267. National Center for Clinical Infant Programs (1985). Equals in this partnership: Parents of disabled and at&k infants and toddlers speak to professionals. Washington, DC: Author. National Information Center for Children and Youth with Handicaps (NICHCY). (1985). Children with handicaps, parent and family issues: A guide to readings. News D&err. National Information Center for Children and Youth with Handicaps (NICHCY). (1989). Respite care: A gift of time. N~VV DQest, No. 12. Paarlberg, J., & Balint, J. (1985). Gastrostomy tubes: Practical guidelines for home care. Pediatric Nursing, 11 (2), 99-102. Ricci, S. (1989, July 22). P.O.N.D. promoting pool safety. Florida Nursing News, pp. 1, 8,9. Wintemute, G. (1990). Childhood drowning and near-drowning in the United States. American Journal of Diseares in Children, 144, 663-669.
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Bound volumes are not available in
Passo Coffman,
DNS,
RN
A significant number of children experience submersion accidents every year in the United States, and many of these children suffer irreversible brain injury as a result. The effects on family members can be overwhelming as they adjust to caring for their disabled child at home. Nurses assist the family in planning for home care and provide direct care in the home. Nursing care is adapted to meet the unique requirements of the home setting. The nurse must be technically competent as well as compassionate to meet the needs of the child and family. J PEDIATR HEALTH CARE. (1992). 6, 18-24.
N
ear drowning is an accident of uncertainty. Defined as survival from a submersion injury for 24 hours after rescue, near drowning may result in complete recovery, severe brain injury, or variable neurologic deficits. Drowning is the leading cause of accidental death in infants and young children in 10 states; however, the incidence of near drowning is more than ten times the incidence of drowning (Consumer Product Safety Commission, 1988). In the United States, it is estimated that 1 in every 301 boys and 1 in every 913 girls, aged birth through 19 years, will be hospitalized for a near-drowning accident (Wintemute, 1990). The typical submersion accident involves a child under 5 years of age who slips briefly from adult eyesight supervision, gains accessto the family pool area through an unlocked patio door or fence, and silently wades or falls into the water. Even a young child who has had swimming lessions often is unable to float or swim to safety. By the time a child is discovered in the pool, he or she may have suffered irreversible injury. SUBMERSION AND INJURY
n
ACCIDENT
SEQUENCE
A submersion injury usually begins with a panic reaction as the child’s face unexpectedly goes under the water. This panic reaction is accompanied by dysrhythmic breathing, and the child may or may not aspirate water into the lungs. All children with a history of significant submersion injury should be admitted to the hospital for at least 24 hours of observation. Even children with no untoward effects at the time of the accident may develop delayed pulmonary or cerebral edema. VomSherrilyn Passe Coffman is assistant professor Atlantic University, Boca Raton, Florida.
in the School of Nursing,
Reprint requests: Sherrilyn Passo Coffman, School of Nursing, University, PO Box 3091, Boca Raton, FL 33431. 25/1128100
18
Florida
Florida Atlantic
iting and aspiration are other dangers in the child who has swallowed water (Gonzalez-Rothi, 1987). The child who requires resuscitation after submersion may be obtunded or comatose on arrival in the emergency room and is likely to require intubation and aggressive therapy. Factors associated with a poor prognosis include fixed and dilated pupils, coma, and the necessity for CPR in the emergency department (Frates, 1981). Of the children who require CPR in the emergency room, it is estimated that 35% to 60% die, and 60% to 100% of the survivors are severely brain damaged (Wiitemute, 1990). Overall, it is estimated that 20% of hospitalized survivors of near drowning have severe and permanent neurologic disability (Division of Injury Control, 1990). The child who survives with severe brain injury suffers from multiple disabilities. Neurologic impairments include coma, disorders in muscle tone, sensory deficits, and seizure disorders. Various degrees of visual and hearing deficits limit the child’s sensory input, and response to stimulation may be limited to moaning, tensing muscles, or relaxing. Many of these children have tracheostomy tubes because of difliculties in airway maintenance. Because they are unable to swallow, most children are fed through gastrostomy tubes and receive medications by this route. Specially designed wheelchairs, splints, and other adaptive devices are used to prevent or treat musculoskeletal deformities caused by paralysis and abnormal muscle tone. n
TRANSITION
FROM
HOSPITAL
TO HOME
Evidence is clear that severely disabled children have a better chance of achieving optimal development when they are cared for at home rather than in an institution. The respiratory and feeding disorders suffered in severe near drowning, coupled with the child’s comatose state and neuromuscular disabilities, necessitate technologically sophisticated intervention. These benefits and deJOURNAL
OF PEDIATRIC
HEALTH
CARE
Journaloi Pediatric
Home Care after Near Drowning
Health Care
mands of home care present a challenge for hospital staff and parents during discharge planning. The discharge planning process begins in the acute care setting and continues if the childis transferred to a rehabilitation facilitv.,
Evidence
is clear that severely disabled children have a better chance of achieving optimal development when they are cared for at home rather than in an institution.
A comprehensive assessment of the needs and abilities of the child, the needs of the family, and available community resources is the first critical step in home care planning (Kaufman, 1988). How are the family’s needs determined? Staff begin by asking parents what they need. Some parents will be able to state their needs immediately, while for others it may take longer. Consistency and “just being there” to support a family are of primary importance. As parents feel capable of taking on responsibility, they become equal partners in developing plans for the care of their child (National Center for Clinical Infant Programs, 1985). By supporting parents, listening to them, and seeking them out to make decisions, hospital staff give parents an important message-that parents are capable of performing these tasks at home. The American Academy of Pediatrics Ad Hoc Task Force on Home Care of Chronically Ill Infants and Children (1984) has outlined several factors that must be included when planning home care for children. These include environmental factors (space, water, electricity, and telephone)., child factors (benefits, risks, and care needs), family factors (involvement and training of family members), and community factors (medical, social, and educational resources). Financial considerations affect each of these areas and may dictate what types of resources can be used in home care. If the family has private insurance, that coverage becomes the basis for financial planning. The family may be eligible for assistance from public programs such as Medicaid and State Programs for Children with Special Health Care Needs. Severely disabled ‘children often require 24-hour nursing care in the home setting. Initially, most families select a home health agency to recruit and schedule nurses. Parents may need guidance as they determine what questions to ask in selecting an agency (Briggs, 1987; Kaufman, 1988). It can be beneficial for the home care nurse to meet the child and family before the child is discharged and to receive training in the hospital setting. Coordination of care is facilitated as the home care nurse works with parents and hospital staff to plan for physical, occupational, and speech therapy at home. Se-
19
curing the special supplies and equipment needed by the child at home also is an important part of preparation. n
ENVIRONMENTAL
FACTORS
Parents may feel that they are establishing a “mini hospital” in their home as they prepare for their child’s return. The ability of the physical setting to support highly technical equipment must be assessed. A home visit by professional staff assists parents in answering questions about the home environment: Is there adequate space, especially if a hospital bed is used? Are electric outlets available and safe for use with monitors, suction machines, and other electrical equipment? Is lighting appropriate for both daytime and nighttime use? Is running water accessible to staff for handwashing and cleaning of equipment? After home care begins, nurses may undertake special responsibilities for environmental needs. Safety and hygiene are of primary importance. Care must be taken to turn off oxygen tanks after use. Medications and cleaning fluids must be kept out of reach of younger siblings in the home. Tubing and other equipment for respiratory treatments are used for 24 hours and then soaked in a special cleaning solution, rinsed, and air dried. Parents and nurses on all shifts must clarify who is responsible for daily tasks such as emptying trash cans, dusting, and inventory of supplies. n
THE CHILD:
NEEDS AND CARE
The nursing care plan takes into consideration the individual child’s reactions and needs and provides guidelines to ensure consistency of care across all nursing shifts. An example of one portion of a formalized care plan is presented in Box 1. The nursing process provides the structure for care, beginning with assessment. Focusing on the particular problems and strengths of the child, the nursing assessment provides guidance for either following routine care or modifying care. In the home setting, these judgments must be made independently by the nurse; however, mechanisms should be established to allow consultation with the nursing coordinator or the physician when questions arise.
F
irst-hand knowledge of technical equipment and working knowledge of the child’s medical needs are minimum requirements for nurses. First-hand knowledge of technical equipment and working knowledge of the child’s medical needs are minimum requirements for nurses. A mechanism for orientation of new or temporary nurses should be established. One nurse who is familiar with the family and the needs of the child is designated as coordinator. This
20
Volume 6, Number 1 lanuary-February 1992
Coffman
n
Sample care plan for gastrustomy
tube feedings
Nursing diagnoses: Alteration in nutrition and impaired swallowing . Nursing actions:
l
Procedure: l Warm formula to room temperature. o Give medications in water before or after feeding. Note: Mix Metamucil in 30 to 60 ml water and give immediately. l Regulate feeding at a slow drip rate to go in over 30 to 60 minutes. (Too rapid flow causeshiccups.) l After feeding, flush with remaining water. (Water can be added to bag if line is full.) l Leave G-tube unclamped, open to bag, 30 minutes after feeding. l Clamp G-tube with stopper and rubber band.
Timing: l l
Feeding should not begin until 60 minutes after respiratory treatment. Respiratory treatment should not begin until 1?2 hours after feeding.
Care of Equipment:
Rinse all feeding bags, syringes, cups thoroughly in hot water after each use and drain. Do not place feeding equipment in antiseptic solution. e Soak feeding bags with warm water and 1 tsp. baking soda about 1 hour after use. o Brushes, pipe cleaners, etc., are available for use in cleaning equipment. l
individual takes responsibility for maintaining lines of communication between nurses, using methods such as communication notebooks and telephone conferences. Changes in medications or daily activity schedules, new approaches to therapy, and other alterations in care can be communicated quickly and effectively when such mechanisms are used. Sensory
Stimulation
Although the brain-damaged child may not be able to communicate verbally, tension and comfort are communicated through changes in muscle tone, skin color, posturing, and other physiologic signs. Most children are able to hear what is spoken to them and all can sense the touch of their caretakers as they respond to the universal language of love and care. The goal of stimulation is to use the child’s sensory abilities without overstressing the child. These children can benefit from having books read to them or from listening to tapes of music, stories, voices of family members, musical toys, or music boxes. Visual stimulation should be appropriate to the child’s abilities and may range from changes in light intensity for the child with minimal vision to colors and patterns in toys or pictures when vision is nearly normal. Even if the child cannot swallow, taste and smell can be stimulated by allowing the child to smell or taste cooking extracts, such as lemon or
peppermint. Therapeutic touch through massage or vibration can be very soothing to aid in relaxation. Routines
of Daily
Living
Maintaining stable yet flexible routines of daily living is an important way to integrate the child into family life. Nurses on all shifts should strive to maintain consistency yet adapt to changes in family schedules. Regular times should be established for feedings, respiratory treatments, bathing, linen changes, naptimes or sleep, therapies, school, and family interaction. A natural activity for the child to share with siblings is watching or listening to cartoons on television. Involvement of all family members in care of the child is important, and each individual is supported to participate in the way he or she desires. Positioning
and Skin Care
Gentle handling is necessary because many of these children have osteoporosis and are prone to fractures. If the child has a tracheostomy, care must be taken not to occlude the tube when the child is positioned on his or her abdomen. Because of the child’s movement limitations, skin care and hygiene are important preventive measures. Redness or irritation around stoma sites may require treatment with antiseptic ointments and exposure of the stoma to air. While a nipple around the base
lournalof Pediatric
Home
Health Care
of the gastrostomy tube may be contraindicated if it traps moisture, it can be helpful to protect the stoma during movement. Respiratory
Care
Damage to the child’s lungs, difficulties with coughing and swallowing, and proneness to respiratory infections are factors that determine the child’s needs for respiratory therapy at home. Drooling is common because of the child’s difficulty in swallowing, and frequent oral suction may be required. For the child with a tracheostomy, a bulb suction device may be adequate to remove coughed up tracheal secretions. Deep tracheal suction can often be reserved for use after aerosol and chest physical therapy (CRT) treatments. Aerosol and CRT usually are given in the time period between 60 minutes before a feeding to 1 l/2 hours after a feeding, to prevent vomiting. The frequency of treatments depends on the child’s condition and proneness to congestion. Oxygen may be reserved for respiratory difficulties or may be used routinely with. tracheal suction. Special monitoring devices, such as a pulse oximeter, often are required when the child first comes home from the hospital or during respiratory illness. If the child has a tracheostomy, adaptations are made in care at home. Colorful shoelaces can be used as tracheostomy ties. The frequency of tube changes is clarified with the physician, and a record of each tube change is maintained. An extra tracheostomy tube should always be accessible in case of accidental displacement. A portable suction machine is necessary as the child moves from room to room within the house and is transported to appointments. The tracheostomy tube may be frightening to parents. Kennelly (1987) outlines a threefold focus for parent teaching. First, parents are required to learn technical skills such as suctioning, tube changing, skin care, and CPR. Second, parents must develop decisionmaking skills to determine when and how often to intervene. Third, parents must be encouraged to confront the emotional aspects of assuming such responsibility. These tasks also may be difficult for nurses, and the nursing coordinator must assure that all nurses are competent and consistent in tracheostomy care. Nutrition
and Elimination
Children with severe brain damage are dependent on gastrostomy tube feedings. The techniques used in feedings vary with each child, ranging from use of a feeding pump, to feeding intravenously by slow drip, to bolus feedings given by Toomey syringe. Formula is warmed to room temperature and given over a time period well tolerated by the child. After feedings, the tubing should
Care
after
Near
Drowning
21
be flushed with extra water, the amount of which can be varied to meet the child’s fluid volume requirements. It is important to adequately dilute thick medications with water during administration to prevent occlusion (Paarlberg & Balint, 1985). Occlusion is the most common reason for gastrostomy tube changes; other causes are deflation of the catheter balloon over time and accidental dislocation.
0
cclusion is the most common reason for gastrostomy tube changes. . ..
Monitoring nutritional status is accomplished by weighing the child on a weekly or regular basis and recording weight on a chart. Although nutritional needs increase as the child grows, some children are prone to obesity because of immobility. The immobile child also is prone to constipation and may require stool softeners or bulk expanders for normal elimination. A decrease in urinary volume may indicate the need for added fluid intake. Medications
Medication schedules are coordinated with feedings and respiratory treatments. After near drowning, many children require bronchodilators to counter respiratory effects, muscle relaxants for spasticity, and anticonvulsants for seizure control. Other medications may include vitamins, stool softeners, and antibiotics. Medications are mixed with water and given by the gastrostomy tube. Nurses should be knowledgeable about side effects of medications and about the child’s history of allergies. Supportive Therapies
Formal consultations and therapy sessions with occupational, physical, and speech therapists often are planned for the child in the home setting. Therapists may make home visits or the child may be transported to the therapy center. By accompanying the child during these visits, the home care nurse learns first hand the therapist’s assessment and plan for care. Areas of focus in therapy include head control, facial and oral exercises, sensory stimulation and play, mobility of trunk and back, weight bearing on joints, and range of motion to upper and lower extremities. Therapists demonstrate proper use of adaptive equipment. The nurse clarifies with therapists what activities are appropriate for nurses and family members to do at home. Written care plans for therapy sessions can be developed and distributed to nurses on all shifts. A videotape recording of a therapy session, which nurses can view, is another excellent educational tool.
22
Volume 6, Number 1 January-February 1992
Coffman
Emergency Protocol
Careful discussion and clarification is required among family, physician, and nursing stti regarding action to take in an emergency. The family may express the desire that the child should not be resuscitated if a respiratory or cardiopulmonary arrest occurs. In this situation, the home care nurse must be aware of legal steps taken by the family and of parent’s expressed decisions. Each nurse should think through what action to take if an emergency occurs, including whom to call (with phone numbers readily available) and what actions to take before the arrival of the rescue squad. Nurses and adult family members should be certified in CPR and understand how to adapt that training if the child has a tracheostomy. n
THE FAMILY-NURSE
RELATIONSHIP
Immediately after the accident, parents experience feelings of shock, disbelief, disorganization, and confusion. This initial state often is followed by a period of denial, when parents may not hear what is said to them or may distort what they hear. During this period parents may alternate between hope and despair or may avoid feelings altogether. A common reaction is to believe that the child will suddenly awake from a comatose state or a magical cure will take place. As parents begin to accept the reality of the situation, they often feel intense anger, which may be directed toward self, spouse, medical personnel, God, and others. The question ‘Why did this happen?” may be partially answered by finding someone to blame for the child’s condition. Other feelings commonly experienced by parents include helplessness, selfpity, loneliness, depression, and fatigue (N.I.C.H.C.Y., 1985). The issues of guilt and blame are paramount after a near-drowning accident. Guilt is an overwhelming reaction as parents question whether the accident could have been prevented. The injured child may have been at home with only one parent or in the care of a babysitter. At a time when family members and friends need to draw together for support, they may blame one another for the event.
M
... ost submersion accidents are the result of only a momentary lapse in supervision. . . .
The stigma attached to an accident that is viewed as preventable is an extra burden for parents to bear. The reaction of friends, relatives, and even professional staff may be unfavorable rather than supportive. To counteract this stigma, it is important for both parents and others to realize that most submersion accidents are the result of only a momentary lapse in supervision, rather
than negligence. In most cases the young child was missing only a few minutes, the accident happened silently, and there was no evidence that parents or other supervisors were not conscientious (Consumer Product Safety Commission, 1988). Parents and their support persons can benefit from talking with other parents or near-drowning victims, learning these facts, and sharing their feelings. Despite education, however, some friends and relatives may shun the family, and the loss of these friendships reduces the family’s normal outlets for companionship.
E
ach parent copes with the tragedy differently and may need help in understanding that these individual differences are normal.
The grieving process of parents after near drowning can be overwhelming and long lasting. Each parent copes with the tragedy differently and may need help in understanding that these individual differences are normal. Family members can benefit from psychological counseling and should be encouraged to seek help early after the injury. At the same time that parents are grieving the loss of their healthy child, they are confronted with multiple new and demanding tasks. They must become skilled caretakers, financial planners and negotiators, and managers for the home care of their disabled child. In consultation with social service and insurance representatives, parents must determine how home care will be financed. While learning how to suction, give gastrostomy feedings, position, stimulate, and other tasks, parents must also deal with their own emotional reactions to caretaking. Siblings of chronically disabled children are noted to be a population at risk for problems of future maladjustment. Each sibling’s response to the home situation is the result of a variety of interacting personal, family, and environmental factors. A high incidence of psychosomatic, emotional, behavioral, and academic problems has been noted to occur in siblings of disabled children. Some studies, however, demonstrate increased levels of maturity, altruism, and tolerance among siblings (Brett, 1988). After a near-drowning accident, siblings should be encouraged to express their feelings and thoughts about the accident. Guilt feelings should be discussed openly and a support system, including neighbors, teachers, counselors, and others should be developed for the sibling. The home care nurse serves as a special support person for siblings. Nurses must recognize and understand the natural responses of sadness, anger, guilt, and sometimes shame in family members. Open, direct, communications at a personal level are essential. The home care nurse’s goals
Journal of Pediatric Health
Care
Home
are to help the family members understand and accept their own confusing feelings, to communicate better with one another, and to take concrete actions to reduce stress (N.I.C.H.C.Y., 1985). Parents and other family members must participate in all processes of medical care and should be educated to help make informed decisions. Nowhere is it more clear than in home care that nurses must view their work with families as a partnership in which they are consultants, but the families are in charge.
n
COMMUNITY
FACTORS
The nurse plays an active role in linking the family with available social supports in the community. The needs of family members are similar to those of other families with chronically disabled children. Two needs are consistently expressed by families: parent-to-parent support and respite care. Participation in support groups by parents and siblings provides a social and emotional outlet that is unique. Support groups provide the opportunity to talk with others whose experiences are similar, to empathize, and to learn how others cope with difficulties. In some communities, there are support groups specifically di-
Drowning
23
can prode
infWmaticm
United Cerebral PalsyAssociations, Inc. 66 E. 34th St. New York NY 10016
home setting must be aware that their presence is both supportive and disruptive of family processes.
n
Near
Association for Retarded Citizens 2501 Avenue J Box 6109 Arlington, TX 76006
N urses in the
Nurses in the home setting must be aware that their presence is both supportive and disruptive of family processes. The constant presence of strangers in the home interferes with normal communication and emotional channels and may lead to inability to spontaneously express intimacy and resolve differences. At the same time that relationships between nurses and family members are growing closer, respect for privacy of family members must be maintained. This process requires personal awareness on the part of the nurse and sensitivity toward the needs of family members. When near drowning occurs in the family swimming pool, an emotional issue faced by parents is how to secure the pool. The family may be so traumatized that they feel the need to either modify the pool or move to another house. Parents need to discuss this issue and may require information about barriers and other safety devices to protect young siblings (Cofhnan, in press). Four-sided pool fencing, safety locks on access doors, pool covers, and pool alarms are examples of safety devices that provide extra layers of protection for young children in the home. Th.e nurse can serve as a resource person and a sounding board as parents educate themselves and make decisions on these issues.
after
BOX 2 Suggested resources
The fdowing agaxies about *te exe:
l
Care
l
The f&wing
pddkatims
are availabk:
Eqw.b in Thrj P-w: Parents of Disabled ad AtR&k In&htr ad Todd&~ Speakto Pwfm. National
Center for Clinical Infant Programs, 733 15th St., NW, Suite 912, Washington, DC 20005. C&&e% With Htwdiazps, Parent anri Fmaily Isspres:A Gde to Readiqgs. Refpite Care: A G@ of Tim. Both are available from Interstate Research Associates, P.O. Box 1492, Washington, DC 20013.
rected to families who have experienced drowning or near drowning (Ricci, 1989). Most communities sponsor support groups for parents of handicapped or mentally retarded children, and these groups can be equally valuable to parents of a near-drowning child. Support groups for siblings of handicapped children are another excellent resource, when available. Respite care has been consistently identified by families as a priority need (N.I.C.H.C.Y., 1989). As families meet the challenges of caring for a disabled child, time off can become a necessity. Respite care provides time for a family to take a needed vacation, spend time as a married couple, spend extra time with siblings, or become involved in new activities. To learn about respite care opportunities, parents and nurses can contact state or local agencies such as the United Cerebral Palsy Association or the Association for Retarded Citizens (Box 2). n
SUMMARY
Near drowning is a tragedy that places overwhelming demands on family members. In the midst of their grief, parents must learn to be skilled caretakers, managers, and organizers for the home care required by their neardrowning child. Nurses are in a unique position to educate and support parents as the child moves from acute care and rehabilitation facilities to care at home. Home care nurses must be competent in technical care, such
24
Volume 6, Number 1 January-February 1992
Coffman
as care of tracheostomies and eastrostomies. and must also be compassionate in rela&g to the disabled child and family. The relationship between family and nurse is one of alternating rhythms in which the nurse’s main objectives are sensitivity to family members’ needs and support of their strengths. As this caring process continues, both family members and nurses experience growth. 8 REFERENCES American Academy of Pediatrics Ad Hoc Task Force on Home Care of Chronically Ill Infants and Children (1984). Pediatrics, 74,434436. Brett, K. (1988). Sibling response to chronic childhood disorders: Research perspectives and practice implications. Issties in Comprehensive Pediatric Nursing, 11, 43-57. Briggs, N. (1987). Selecting a pediatric home care program. Pediatric &4&g, 13, 191. Coffman, S. (in press). Parent education for drowning prevention. JOURNAL OF PEDIATRIC HEALTHCARE. Consumer Product Safety Commission. (1988). Brie@-- package on pool safq. Washington, DC: Author. Division of Injury Control, Center for Environmental Health and Injury Control, Centers for Disease Control. (1990). Childhood injuries in the United States. American Journal ofDiseases in Cbildren, 144, 627-646.
Frates, R. (1981). Analysis of predictive factors in the assessment of warm-water near-drowning in children. American JmwnJ ofDisem% in Children, 135, 1006-1008. Gonzalez-Rothi, R. (1987). Near drowning: Consensus and controversies in pulmonary and cerebral resuscitation. Heart and Lung 16, 474-482. Kaufman, J. (1988). Pediatric home care. In L. Benefield (Ed.), Home health care manqment (pp. 304-325). Englewood Cliffs, NJ: Prentice Hall. Kennedy, C. (1987). Tracheostomy care: Parents as learners. MCN, 12, 264-267. National Center for Clinical Infant Programs (1985). Equals in this partnership: Parents of disabled and at&k infants and toddlers speak to professionals. Washington, DC: Author. National Information Center for Children and Youth with Handicaps (NICHCY). (1985). Children with handicaps, parent and family issues: A guide to readings. News D&err. National Information Center for Children and Youth with Handicaps (NICHCY). (1989). Respite care: A gift of time. N~VV DQest, No. 12. Paarlberg, J., & Balint, J. (1985). Gastrostomy tubes: Practical guidelines for home care. Pediatric Nursing, 11 (2), 99-102. Ricci, S. (1989, July 22). P.O.N.D. promoting pool safety. Florida Nursing News, pp. 1, 8,9. Wintemute, G. (1990). Childhood drowning and near-drowning in the United States. American Journal of Diseares in Children, 144, 663-669.
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