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The psychologic effects of sudden infant death syndrome on parents
The Psychologic Effects of . Sudden Infant Death Syndrome on Parents . Jill A. Carlson,
MS, RN, ARNP
Sudden infant death syndrome is the sudden, unexpected death of an apparently healthy infant, accounting for 7,000 to 10,000 deaths per year. For the parents, the unexpectedness and guilt can be overwhelming. The long, difficult grief process has a great effect on marital relationships, surviving siblings, and subsequent children. Increasing the nurse’s understanding of the effects of sudden infant death syndrome can enhance the support the parents receive. A caring attitude and follow-up throughout the grief process are necessary. J PEDIATR HEALTH CARE. (1993). 7, 77-81.
S
udden infant death syndrome (SIDS) is the sudden, unexpected death of an apparently healthy infant between 1 week and 1 year of age. It is the leading cause of infant death in this age group and accounts for 7,000 deaths per year in the United States (National SIDS Alliance, 1992). A SIDS death usually occurs at night while the child is asleep, without agonal cry or apparent distress (Swoiskin, 1986). The death remains unexplained even after a thorough postmortem examination. Numerous theories have been hypothesized to explain the cause of SIDS; none has been confirmed. Death usually happens between 2 and 6 months of age, is seen more often in male infants, and is more common in the winter months. Its incidence appears to be increased in low birth weight infants, those discharged from the neonatal intensive care units, and those in the lower socioeconomic class (Buschbacher & Delcampo, 1987). . SCOPE OF THE PROBLEM
SIDS leaves the survivors with many devastating feelings and emotions. Because this tragic event lacks a definite explanation, parents may have a difficult time resolving the loss. Parents often feel guilty and express feelings of blame or self-doubt. Blame may be focused on the other partner and may result in subsequent marital difficulties (Price, Carter, Shelton, & Bendell, 1985). DeFrain, Taylor, and Ernst (1987) described SIDS as the most severe crisis these parents have ever experienced, taking them an average of 8 months to regain the level of family organization they had held Jill A. Carlson, MS, RN, ARNP, office in Kansas City, Kansas.
is a nurse practitioner
in a private
Reprint requests: Jill A. Carlson, MS, RN, ARNP, Pediatric tered, 4517 Troup, Kansas City, KS 66102. Copyright 0 by the National Practitioners.
Association
0891-5245/93/$1.00
25/l/41731
JOURNAL
+ .lO
OF PEDIATRIC
HEALTH
of Pediatric
CARE
Associates
practice Char-
Nurse Associates
&
before the death and an average of 16 months to regain their former level of personal happiness. Price et al. (1985) reported that this event can be so devastating that often the parents do not want to return to the home. They noted that over 5 1% of the parents surveyed moved within the first month after the child’s death; 86% moved within the first 6 months. Friends, neighbors, extended family, and others tend to underestimate the intensity and duration of the grief reaction. Therefore the people closest to the parents, such as friends and relatives, may place more blame on the parent and may lack the strength needed to handle the death in their own lives (Zebal & Woo&y, 1984). The unexpectedness of the death, guilt, and lack of adequate support are the main problems that make this experience difficult to deal with and can cause further complications with marital relationships, subsequent children, and siblings. Jo Eileen Gyulay, RN, PhD, President of the Grief Institute, believes that one of the major problems with SIDS is the unexpectedness. Parents do not have any time to prepare for the death. Most of the children die at home. They may have recently been to the doctor and were healthy, and suddenly the parents, relatives, or babysitter find the baby dead. The parents seek an explanation. SIDS is a diagnosis, and yet it is not. It is not like cancer or a trauma by which the cause of their baby’s death can be justified. “It is this unknown phantom in the dark (most of the time it occurs at night) that takes your baby” (J. E. Gyulay, personal communication, 1991). With any death some guilt occurs, but it seems to be heightened in the SIDS experience, perhaps because of the lack of specific cause. Indeed, guilt can be the most predominant emotional reaction to SIDS. If the infant dies while in the care of someone other than the parents, parents may tend to blame the person who was with the child or blame themselves for having left the baby. DeFrain et al. (1987) explained: ‘The resulting 77
Journal
78
Carlson
pain is not simply guilt over the death of the baby, however. The survivors spend many of their waking hours and many sleepless nights reliving every moment of their infant’s short life” (p. 2). Gyulay noted that parents believe that they need to protect their children and that they keep asking themselves, “Is there anything that I did not do?” She explained that the parents can become immobilized in their grief at this point unless they work through it (J. E. Gyulay, personal communication, 1991). Grief
Process
Although the reactions to this tragic experience vary, commonalities exist in the grief process (Table). The parents often experience a variety of physiologic reactions. Muscular problems, an “aching to hold the baby,” and other symptoms affecting specific areas, such as the chest, head, or stomach, are often reported. Parents may feel nauseated, dizzy, or “tied in knots.” Energy levels may be affected. Usually they complain of weakness, emptiness, and exhaustion, but some parents experience heightened energy levels with a need to be continuously active. Sleep and appetite disturbances are common. Insomnia and appetite loss are usually present, but some parents speak of excessive sleep and increased appetite with weight gain (Zebal & Woolsey, 1984). Parents find concentrating for any length of time to be difficult. The mind wanders, resulting in the inability to make decisions. They may have sensory images of the infant,
P
arents do not have the death.
any time
to prepare
for
a need to search for the baby. They hear the infant cry or have visions of the baby (Woolsey, 1988). Because of the intensity and nature of their reactions, many parents feel out of control and fear that they are losing their sanity. Although frequent setbacks occur, with the passage of time the intensity of grief gradually decreases. By 4 to 6 months after the death, most families are able to shift their orientation from the past tragedy to concerns of the future. However, the family will never be the “same” again. At each anniversary date, the parents are reminded that their baby would have been another year older, and they wonder what their baby would have been like. The anticipation of these anniversary dates can be more difficult than the actual death experience (Zebal & Woolsey, 1984). With subsequent pregnancy, anxiety may be heightened until the subsequent child has passed the age of the SIDS baby at the time of death. Another milestone is the subsequent child’s first birthday, when the risk of SIDS is virtually nonexistent (Zebal & Woolsey, 1984).
Maternal
and Paternal
of Pediatric Health Care Volume 7, Number 2
Grieving
Differences exist between maternal and paternal grieving. Mothers tend to cope with their infant’s death by talking about their feelings with others, often crying. They experience wide mood swings and frequently express hostile feelings toward even their closest relatives (Nikolaisen, 1981). Other maternal coping strategies involve escape-avoidance behaviors such as wishful thinking, sleeping, drugs, and alcohol. Mothers seek social support to deal with the death more often than do fathers (Feeley & Gottlieb, 1988-89). Mothers have more difficulty accepting SIDS as the cause of their baby’s death than do fathers and are more inclined to continue looking for logical explanations (Williams & Nikolaisen, 1982). In contrast, the fathers of SIDS victims tend to internalize their grief. They begin working longer hours in an attempt to distract themselves from the pain and to avoid going home, possibly where the death occurred (Herbst, Kelly, Naeye, & Valdes-Dapena, 1988). This response may give others the impression that the death did not bother them and that they did not care for the infant (Nikolaisen, 198 1). Mandell, McAnulty, and Reece (1980) found that fathers projected a manager-like role. They forced control of any emotional expression by becoming preoccupied with the emotional support of the wife. A father might comment, “I have to stay strong for everyone else” (pg. 222). If the father did discuss his own grief the responses appeared to be intellectualized, for example, “I don’t expect or want people at work to ask me about it. No one can bring J. back. We have to go on living” (pg. 222). The fathers identified the predominate coping mechanisms as “to keep busy,” often becoming busy with funeral arrangements. Gyulay stated that fathers often feel cheated; they are envious that the mother had 9 months longer with the infant than they did (J. E. Gyulay, personal communication, 1991). A study by DeFrain et al. (1987), in which fathers responded to a written questionnaire, indicated that the fathers who did respond did not write much. They would write a few words on guilt and fear, but they were not very open with feelings or emotions. Some commented that they were unable to cry. One Nebraska father said: When is it my turn to cry?I’m not sure societyor my upbringing will allow me u time to really c9y,unafraid of the reaction and repercussion that mig-ht follow. I must be strong I must support my wife becauseI am a man. I must be the cornerstone (p. 25). Feeley and Gottlieb (1988-89) reported that both mothers and fathers used work as a way of coping, but at different stages in the bereavement process. Fathers immersed themselves in their work soon after the death;
Journal of Pediatric March-April 1993
Health
Care
mothers used work as a means of coping in the later stages of grief. Other coping strategies include becoming preoccupied, maintaining self-control, escaping, seeking social support, and accepting responsibilities. Maternal predictors of these coping strategies were the age of the infant and the length of time since the loss. The longer the time since the death and the older the infant at the time of death the less often that mothers noted use of these strategies. The higher the level of family income the less the fathers used the coping strategies listed. However, the father was more likely to use them if he lost a son rather than a daughter. Gender did not seem to be as important to mothers. Marital Relationships Many parents who experience the loss of an infant to SIDS are young couples who have probably not had much experience with death and are just beginning a relationship with each other. The sudden unexpected death of their infant has a profound effect on their relationship. In general, differing patterns of grief can cause significant communication problems. The mother may interpret the father’s need for solitude as insensitivity to her need to express her feelings; the father may interpret her emotional behavior as an intrusion. Heightened stress levels in turn lead to exacerbation of previous family problems (Zebal & Woolsey, 1984). In addition, parents try to hide their feelings from each other by not expressing their feelings of sadness and depression to the other spouse. Feeley and Gottlieb (1988-89) reported that many couples moved beyond their communication difficulties. Indeed, the husbands were listed as the mothers’ most important sources of support. This heightened level of understanding lead to a greater effectiveness of marital communication, increased personal growth, and a more secure, open relationship. Gyulay (personal communication, 1991) talked about the parents’ sexual relationship after a SIDS event. Mothers tend to see sexual intercourse after SIDS as procreation, and they feel guilty about enjoying it. The father may use sexual intercourse as a type of relief measure and a way of some enjoyment. Gyulay further noted that the first time the couple “makes love” the woman almost always cries and sobs. The father in turn feels guilty and angry and “doesn’t know what is going on.” The mother is angry at the father for wanting to engage in sexual intercourse. The woman may imagine herself getting pregnant-terrified that she might be pregnant and yet disappointed that she is not. The way the couples handle the sexual relationship has a profound effect on their coping and marital relationship. Parental Relationships Parents become involved in their own grief and may have little energy to respond to their other children and
Carlson
n
TABLE
Stages
of grief
~~~
stage Shock, Disbelief
Depression
Anger Acceptance
Adapted
79
from Zebal & Woolsey,
_
Dream-like state Denial Numbness mm3 Extended periods of rtiience Questions meaning of life Hosliiity t-ielples5oess Relief Decreased emotional reactions 1984
may become more intolerant of the children’s normal behavior. In addition, they may try to protect the children by leaving them out of the discussions and rituals associated with the death. As a result, the children may feel anxious and alone at a time when they most need the help and reassurance of those around them. Price et al. (1985) noted that 53% of mothers reported that the surviving children were noticeably disturbed by the death, with 30% of the children reportedly coping well. Six months after the death 76% of the mothers perceived their children coping adequately, with only 10% of the mothers observing continued signs of significant disturbance. They found that 70% of mothers became closer to their children after the death, with 21% feeling more distant from their surviving children during this time. Subsequent Children When and if parents should have another child is a difficult topic. Of those who want another child, many have problems with infertility and miscarriages during the first year after the SIDS experience (Herbst et al., 1988). Gyulay (personal communication, 1991) encourages parents not to try to become pregnant until 1 year after the death. By the time the subsequent child is born, 21 to 24 months will have passed, which is usually enough time to work through the grief process. If the baby comes 9 months after the death, they are right in the middle of the grief process. Mandell et al. (1980) found that mothers often expressed tremendous fear of a subsequent pregnancy during the first 4 months after the death. However, none of the fathers expressed this fear, and there was even a sense of urgency on their part to have another child as soon as possible. Once pregnant the parents may be nervous, excited, and afraid. Then after the birth, some parents become excessively overprotective of the subsequent child. They are afraid that the child will die, so they have difficulty bonding (Herbst et al., 1988). Afraid of another SIDS
]ournal
80
Carlson
death, the parents may check on the baby and call the health care provider more frequently. They may experience panic, having great fear not for the infant, but for themselves, as described by one parent, “Your concern is how you would survive if you lost this child too” (DeFrain et al., 1987, p. 50). Unfortunately, the subsequent child may be a “replacement” for the SIDS baby, especially if the decision to have another baby happens very quickly. The parents want to fill the “empty nest” (Buschbacher & Delcampo, 1987). Gyulay (personal communication, 1991) explained that often parents will choose a name for the subsequent child that resembles the name of the SIDS baby. A sign that the child is not a replacement occurs when parents view this child as a unique and separate individual, while acknowledging that the infant who died of SIDS will always have a place in the family. Support
A support person’s attitude, whether one of blame or support, can have lasting effects on the parent. The police or other emergency personnel are usually the first care givers to come into contact with the parents of a SIDS victim, making them important support persons. Support persons other than relatives might include the family doctor, minister, or even the funeral director. Gyulay (personal communication, 1991) stated that a support person is one who validates their pain, is trust-
N
urses have an important role in providing support to the parents of SIDS victims.
worthy, and does not ridicule the parent with cliches. She noted that anyone can fill this role, and it often changes at various times during the grief process. Williams and Nikolaisen (1982) reported that one half of the single parents in their study had seriously considered suicide-indicating a lack of support. Nikolaisen and Williams (1980) found that the spouse, relatives, and friends were the most helpful during the early crisis. However, after the initial period, many families experienced a withdrawal of this support. Unfortunately, at this time reality is setting in, and the parents need additional support and reassurance that they were not at fault (Zebal and Woolsey, 1984). The support persons often assume that because the baby was so young the attachment was not strong and expect the family to recover fairly quickly. A Connecticut mother noted: People told me that I was lucky that I didn’t have her any l0n.u than I did or they say, ‘Tust be &ad it wasn’t one of your older children” as *Tit makes some da&-ence bow long you have your child to de&e bow much it should huti to loseit (DeFrain et al., 1987,
p. 31).
of Pediatric Health Care Volume 7, Number 2
Gyulay (personal communication, 1991) discussed a period of desensitization in which the mother wants to talk about her experience. She “tells the story” over and over, each time adding more details. Often friends tire of hearing the story and simply do not want to hear it again; others have trouble dealing with the death themselves, but most are just afraid to talk about death. They do not know what to say. l
NURSING INTERVENTIONS
Nurses have an important role in providing support to the parents of a SIDS victim. Gyulay (personal communication, 1991) maintained that most emergency rooms are doing a good job of handling SIDS cases and the special needs that parents have. Nurses can help with all the emotions that the family may exhibit, including guilt, anger, and sadness (Dubin & Sarnoff, 1986). Nurses can also offer spiritual support by calling clergy at the parents’ request. They can talk to parents and call the baby by name, even a nickname if the parents indicate. Gyulay explained that the baby should be in a clean gown and diapers and surrounded with some of the baby’s own belongings such as a bottle, blanket, or toy, if available. Both parents should be encouraged to hold the infant. They can be given private time to hold the infant and need not be rushed, even if the emergency department is busy and in need of the room or cart. Gyulay (personal communication, 199 1) explained that if parents do not see the baby they often regret it. She has never had anyone regret seeing and even holding the baby. The parents should be asked if they want the baby baptized and accommodate their wishes. If the mother is breast feeding she should be encouraged to contact the Le Leche League or the local SIDS chapter for assistance during the abrupt stoppage of breast feeding. Before leaving the emergency department the nurse may want to give the parents a memento of the infant such as a lock of hair, photographs, or footprints. Parents should be given a brochure about SIDS and the local number of the SIDS foundation. A name and mmber of a person in the hospital that they can contact is helpful. The nurse also should make sure the parents will be taken home safely; someone else should drive them home. Arrangements for staying with someone else or for child care may also be necessary. The nurse should notify personnel in the SIDS foundation of the death (Jezierski, 1989). Groups such as Resolve Through Sharing can also be contacted to assist the family in their grief. The next nursing responsibility is assisting the family in accepting the death, ensuring that the grieving process progresses to acceptance, and meeting the individual needs of the family. A phone call in the first 48 hours to assist with funeral arrangements and child care is helpful. As soon as SIDS is confirmed by the autopsy,
Journal of Pediatric March-April 1993
Health
Care
the nurse can provide additional information on SIDS and reassure the parents that the child did not die because of something they did or did not do. A caring attitude during this sensitive period is essential (DeFrain et al., 1987). A home visit should be made within 2 weeks of the death. This can be done by a volunteer of the local SIDS group or the public health nurse. At this time the nurse reviews information on SIDS. The most important behavior is for the nurse to listen to whatever the family wants to say. Often the parents may experience very intense emotions. The nurse should reassure the family
T
he first task is the acceptance of the reality of death.
that such feelings are normal (Miles, 1990). By making another visit 1 month after the death, the nurse can help relieve fears and reassure the parents about their feelings. At this time discussing marital relationships and surviving sibling conflicts is appropriate, to assesshow the parents appear to be grieving and to look for potential problems (DeFrain et al., 1987). Although the frequency and length of visits vary according to the couple’s needs, possible follow-up visits are recommended at the time of subsequent pregnancies, on anniversary dates, and after subsequent children are born (DeFrain et al., 1987). The couple may take 1 to 2 years to regain the same level of happiness that they held before their child died (Nikolaisen, 1981). Woolsey (1988) describes four major tasks necessary for healthy resolution of the loss. The first task is the acceptance of the reality of the death. Seeing and holding the body seems to help achieve this task. The second task is mourning or experiencing the pain of the loss. A person who fails to grieve may show signs of emotional numbness and later evidence of symptoms of depression or psychosomatic illness (Zebal & Woolsey, 1984). The third task is adjusting to the environment without the deceased. The parents need to make decisions about what to do with the baby’s room and clothes and toys. They may think about having another baby. They may need to work on feeling comfortable around other babies. The final task is reinvesting emotional energy into new relationships. Resuming specific activities such as work, socialization, and house work serve as yardsticks of individual and family adjustment (May & Breme, 1982-83). n
CONCLUSION
The tragic experience of SIDS is characterized by very intense feelings and emotions. The unexpectedness and
Carlson
81
guilt can be overwhelming. The grief process is long, stressful, and often is not understood by other people. The death has a great effect on marital relationships and surviving siblings. The nurse can play a major role in helping the parents to resolve their grief. Further research regarding sexual relationships between the parents, the father’s grief reaction, and the role of the professional in the support system is needed. . I thank
Dr.
Jody
Gyulay
for
her time
and her
commitment
to SIDS. She has truly helped many parents through this difficult ordeal, and her special gifts in this field are appreciated by all. REFERENCES Buschbacher, V., & Delcampo, R. (1987). Parents’ response to sudden infant death syndrome. JOURNAL OF PEDIATRIC HEALTH CARE, 1, 85-90. DeFrain, J., Taylor, J., & Ernst, L. (1987). Copin8 with sudden infant death. Lexington, MA: Lexington Books. Dubin, W., & Samoff, J. (1986). Sudden unexpected death: Interventions with the survivors. Annals ofEmpxy Medicine, 15, 5474. Feeley, N., & Gottiieb, L. (1988-89). Parent’s coping and communication following their infants death. Omega, 19, 5 l-67. Herbst, J., Kelly, D., Naeye, R., & Valdes-Dapena, M. (1988). New findings shed light on SIDS. Patient Care, 22, 61-81. Jezierski, M. (1989). Infant Death: Guidelines for support of parents in the emergency department. Journal of Emer-my Nursing, 15, 475-476. Mandell, F., McAnuhy, E., & Reece, R. (1980). Observations of paternal response to sudden unanticipated death. Pediatrics, 65, 221-225. May, H., & Breme, F. (1982-83). SIDS family adjustment scale: A method of assessing family adjustment to sudden infant death syndrome. Omega, 13, 59-73. Miles, A. (1990). Caring for families when a child dies. Pediatic
Nursing 16, 346-347. National about
Nikolaisen, family: Nikolaisen, lowing
SIDS SuaYen
Alliance. Infant
(1992).
What
emyparentshodd
know: Facts
Death Syndrome. Columbia,
MD. infant death
S. (1981). The impact of sudden on the Nursing intervention. Topics in Clinical Nursing, 3, 45-53. S., & Williams, R. (1980). Parents’ view of support folthe loss of their infant to sudden infant death syndrome. Western Journal of Nurring Research,2, 592-601. Price, M., Carter, B., Shelton, T., & Bendell, D. (1985). Maternal perceptions of sudden infant death syndrome. CHC, 14,2231. Swoiskin, S. (1986). Sudden infant death: Nursing care for the survivors. Journal of Pediatric Nursing, 1, 33-38. Wiiiams, R., & Nikolaisen, S. (1982). Parents’ perceptions and responses to the loss of their infant. Research in Nursing and Health, 5, 55-61. Woolsey, S. (1988). Support after sudden infant death. American Joxmzl of Nuning 88, 1347-1352. Zebal, B., & Woolsey, S. (1984). SIDS and the family: The pediatrician’s role. Pediatric Annals, 13, 23-240, 243-246.
MS, RN, ARNP
Sudden infant death syndrome is the sudden, unexpected death of an apparently healthy infant, accounting for 7,000 to 10,000 deaths per year. For the parents, the unexpectedness and guilt can be overwhelming. The long, difficult grief process has a great effect on marital relationships, surviving siblings, and subsequent children. Increasing the nurse’s understanding of the effects of sudden infant death syndrome can enhance the support the parents receive. A caring attitude and follow-up throughout the grief process are necessary. J PEDIATR HEALTH CARE. (1993). 7, 77-81.
S
udden infant death syndrome (SIDS) is the sudden, unexpected death of an apparently healthy infant between 1 week and 1 year of age. It is the leading cause of infant death in this age group and accounts for 7,000 deaths per year in the United States (National SIDS Alliance, 1992). A SIDS death usually occurs at night while the child is asleep, without agonal cry or apparent distress (Swoiskin, 1986). The death remains unexplained even after a thorough postmortem examination. Numerous theories have been hypothesized to explain the cause of SIDS; none has been confirmed. Death usually happens between 2 and 6 months of age, is seen more often in male infants, and is more common in the winter months. Its incidence appears to be increased in low birth weight infants, those discharged from the neonatal intensive care units, and those in the lower socioeconomic class (Buschbacher & Delcampo, 1987). . SCOPE OF THE PROBLEM
SIDS leaves the survivors with many devastating feelings and emotions. Because this tragic event lacks a definite explanation, parents may have a difficult time resolving the loss. Parents often feel guilty and express feelings of blame or self-doubt. Blame may be focused on the other partner and may result in subsequent marital difficulties (Price, Carter, Shelton, & Bendell, 1985). DeFrain, Taylor, and Ernst (1987) described SIDS as the most severe crisis these parents have ever experienced, taking them an average of 8 months to regain the level of family organization they had held Jill A. Carlson, MS, RN, ARNP, office in Kansas City, Kansas.
is a nurse practitioner
in a private
Reprint requests: Jill A. Carlson, MS, RN, ARNP, Pediatric tered, 4517 Troup, Kansas City, KS 66102. Copyright 0 by the National Practitioners.
Association
0891-5245/93/$1.00
25/l/41731
JOURNAL
+ .lO
OF PEDIATRIC
HEALTH
of Pediatric
CARE
Associates
practice Char-
Nurse Associates
&
before the death and an average of 16 months to regain their former level of personal happiness. Price et al. (1985) reported that this event can be so devastating that often the parents do not want to return to the home. They noted that over 5 1% of the parents surveyed moved within the first month after the child’s death; 86% moved within the first 6 months. Friends, neighbors, extended family, and others tend to underestimate the intensity and duration of the grief reaction. Therefore the people closest to the parents, such as friends and relatives, may place more blame on the parent and may lack the strength needed to handle the death in their own lives (Zebal & Woo&y, 1984). The unexpectedness of the death, guilt, and lack of adequate support are the main problems that make this experience difficult to deal with and can cause further complications with marital relationships, subsequent children, and siblings. Jo Eileen Gyulay, RN, PhD, President of the Grief Institute, believes that one of the major problems with SIDS is the unexpectedness. Parents do not have any time to prepare for the death. Most of the children die at home. They may have recently been to the doctor and were healthy, and suddenly the parents, relatives, or babysitter find the baby dead. The parents seek an explanation. SIDS is a diagnosis, and yet it is not. It is not like cancer or a trauma by which the cause of their baby’s death can be justified. “It is this unknown phantom in the dark (most of the time it occurs at night) that takes your baby” (J. E. Gyulay, personal communication, 1991). With any death some guilt occurs, but it seems to be heightened in the SIDS experience, perhaps because of the lack of specific cause. Indeed, guilt can be the most predominant emotional reaction to SIDS. If the infant dies while in the care of someone other than the parents, parents may tend to blame the person who was with the child or blame themselves for having left the baby. DeFrain et al. (1987) explained: ‘The resulting 77
Journal
78
Carlson
pain is not simply guilt over the death of the baby, however. The survivors spend many of their waking hours and many sleepless nights reliving every moment of their infant’s short life” (p. 2). Gyulay noted that parents believe that they need to protect their children and that they keep asking themselves, “Is there anything that I did not do?” She explained that the parents can become immobilized in their grief at this point unless they work through it (J. E. Gyulay, personal communication, 1991). Grief
Process
Although the reactions to this tragic experience vary, commonalities exist in the grief process (Table). The parents often experience a variety of physiologic reactions. Muscular problems, an “aching to hold the baby,” and other symptoms affecting specific areas, such as the chest, head, or stomach, are often reported. Parents may feel nauseated, dizzy, or “tied in knots.” Energy levels may be affected. Usually they complain of weakness, emptiness, and exhaustion, but some parents experience heightened energy levels with a need to be continuously active. Sleep and appetite disturbances are common. Insomnia and appetite loss are usually present, but some parents speak of excessive sleep and increased appetite with weight gain (Zebal & Woolsey, 1984). Parents find concentrating for any length of time to be difficult. The mind wanders, resulting in the inability to make decisions. They may have sensory images of the infant,
P
arents do not have the death.
any time
to prepare
for
a need to search for the baby. They hear the infant cry or have visions of the baby (Woolsey, 1988). Because of the intensity and nature of their reactions, many parents feel out of control and fear that they are losing their sanity. Although frequent setbacks occur, with the passage of time the intensity of grief gradually decreases. By 4 to 6 months after the death, most families are able to shift their orientation from the past tragedy to concerns of the future. However, the family will never be the “same” again. At each anniversary date, the parents are reminded that their baby would have been another year older, and they wonder what their baby would have been like. The anticipation of these anniversary dates can be more difficult than the actual death experience (Zebal & Woolsey, 1984). With subsequent pregnancy, anxiety may be heightened until the subsequent child has passed the age of the SIDS baby at the time of death. Another milestone is the subsequent child’s first birthday, when the risk of SIDS is virtually nonexistent (Zebal & Woolsey, 1984).
Maternal
and Paternal
of Pediatric Health Care Volume 7, Number 2
Grieving
Differences exist between maternal and paternal grieving. Mothers tend to cope with their infant’s death by talking about their feelings with others, often crying. They experience wide mood swings and frequently express hostile feelings toward even their closest relatives (Nikolaisen, 1981). Other maternal coping strategies involve escape-avoidance behaviors such as wishful thinking, sleeping, drugs, and alcohol. Mothers seek social support to deal with the death more often than do fathers (Feeley & Gottlieb, 1988-89). Mothers have more difficulty accepting SIDS as the cause of their baby’s death than do fathers and are more inclined to continue looking for logical explanations (Williams & Nikolaisen, 1982). In contrast, the fathers of SIDS victims tend to internalize their grief. They begin working longer hours in an attempt to distract themselves from the pain and to avoid going home, possibly where the death occurred (Herbst, Kelly, Naeye, & Valdes-Dapena, 1988). This response may give others the impression that the death did not bother them and that they did not care for the infant (Nikolaisen, 198 1). Mandell, McAnulty, and Reece (1980) found that fathers projected a manager-like role. They forced control of any emotional expression by becoming preoccupied with the emotional support of the wife. A father might comment, “I have to stay strong for everyone else” (pg. 222). If the father did discuss his own grief the responses appeared to be intellectualized, for example, “I don’t expect or want people at work to ask me about it. No one can bring J. back. We have to go on living” (pg. 222). The fathers identified the predominate coping mechanisms as “to keep busy,” often becoming busy with funeral arrangements. Gyulay stated that fathers often feel cheated; they are envious that the mother had 9 months longer with the infant than they did (J. E. Gyulay, personal communication, 1991). A study by DeFrain et al. (1987), in which fathers responded to a written questionnaire, indicated that the fathers who did respond did not write much. They would write a few words on guilt and fear, but they were not very open with feelings or emotions. Some commented that they were unable to cry. One Nebraska father said: When is it my turn to cry?I’m not sure societyor my upbringing will allow me u time to really c9y,unafraid of the reaction and repercussion that mig-ht follow. I must be strong I must support my wife becauseI am a man. I must be the cornerstone (p. 25). Feeley and Gottlieb (1988-89) reported that both mothers and fathers used work as a way of coping, but at different stages in the bereavement process. Fathers immersed themselves in their work soon after the death;
Journal of Pediatric March-April 1993
Health
Care
mothers used work as a means of coping in the later stages of grief. Other coping strategies include becoming preoccupied, maintaining self-control, escaping, seeking social support, and accepting responsibilities. Maternal predictors of these coping strategies were the age of the infant and the length of time since the loss. The longer the time since the death and the older the infant at the time of death the less often that mothers noted use of these strategies. The higher the level of family income the less the fathers used the coping strategies listed. However, the father was more likely to use them if he lost a son rather than a daughter. Gender did not seem to be as important to mothers. Marital Relationships Many parents who experience the loss of an infant to SIDS are young couples who have probably not had much experience with death and are just beginning a relationship with each other. The sudden unexpected death of their infant has a profound effect on their relationship. In general, differing patterns of grief can cause significant communication problems. The mother may interpret the father’s need for solitude as insensitivity to her need to express her feelings; the father may interpret her emotional behavior as an intrusion. Heightened stress levels in turn lead to exacerbation of previous family problems (Zebal & Woolsey, 1984). In addition, parents try to hide their feelings from each other by not expressing their feelings of sadness and depression to the other spouse. Feeley and Gottlieb (1988-89) reported that many couples moved beyond their communication difficulties. Indeed, the husbands were listed as the mothers’ most important sources of support. This heightened level of understanding lead to a greater effectiveness of marital communication, increased personal growth, and a more secure, open relationship. Gyulay (personal communication, 1991) talked about the parents’ sexual relationship after a SIDS event. Mothers tend to see sexual intercourse after SIDS as procreation, and they feel guilty about enjoying it. The father may use sexual intercourse as a type of relief measure and a way of some enjoyment. Gyulay further noted that the first time the couple “makes love” the woman almost always cries and sobs. The father in turn feels guilty and angry and “doesn’t know what is going on.” The mother is angry at the father for wanting to engage in sexual intercourse. The woman may imagine herself getting pregnant-terrified that she might be pregnant and yet disappointed that she is not. The way the couples handle the sexual relationship has a profound effect on their coping and marital relationship. Parental Relationships Parents become involved in their own grief and may have little energy to respond to their other children and
Carlson
n
TABLE
Stages
of grief
~~~
stage Shock, Disbelief
Depression
Anger Acceptance
Adapted
79
from Zebal & Woolsey,
_
Dream-like state Denial Numbness mm3 Extended periods of rtiience Questions meaning of life Hosliiity t-ielples5oess Relief Decreased emotional reactions 1984
may become more intolerant of the children’s normal behavior. In addition, they may try to protect the children by leaving them out of the discussions and rituals associated with the death. As a result, the children may feel anxious and alone at a time when they most need the help and reassurance of those around them. Price et al. (1985) noted that 53% of mothers reported that the surviving children were noticeably disturbed by the death, with 30% of the children reportedly coping well. Six months after the death 76% of the mothers perceived their children coping adequately, with only 10% of the mothers observing continued signs of significant disturbance. They found that 70% of mothers became closer to their children after the death, with 21% feeling more distant from their surviving children during this time. Subsequent Children When and if parents should have another child is a difficult topic. Of those who want another child, many have problems with infertility and miscarriages during the first year after the SIDS experience (Herbst et al., 1988). Gyulay (personal communication, 1991) encourages parents not to try to become pregnant until 1 year after the death. By the time the subsequent child is born, 21 to 24 months will have passed, which is usually enough time to work through the grief process. If the baby comes 9 months after the death, they are right in the middle of the grief process. Mandell et al. (1980) found that mothers often expressed tremendous fear of a subsequent pregnancy during the first 4 months after the death. However, none of the fathers expressed this fear, and there was even a sense of urgency on their part to have another child as soon as possible. Once pregnant the parents may be nervous, excited, and afraid. Then after the birth, some parents become excessively overprotective of the subsequent child. They are afraid that the child will die, so they have difficulty bonding (Herbst et al., 1988). Afraid of another SIDS
]ournal
80
Carlson
death, the parents may check on the baby and call the health care provider more frequently. They may experience panic, having great fear not for the infant, but for themselves, as described by one parent, “Your concern is how you would survive if you lost this child too” (DeFrain et al., 1987, p. 50). Unfortunately, the subsequent child may be a “replacement” for the SIDS baby, especially if the decision to have another baby happens very quickly. The parents want to fill the “empty nest” (Buschbacher & Delcampo, 1987). Gyulay (personal communication, 1991) explained that often parents will choose a name for the subsequent child that resembles the name of the SIDS baby. A sign that the child is not a replacement occurs when parents view this child as a unique and separate individual, while acknowledging that the infant who died of SIDS will always have a place in the family. Support
A support person’s attitude, whether one of blame or support, can have lasting effects on the parent. The police or other emergency personnel are usually the first care givers to come into contact with the parents of a SIDS victim, making them important support persons. Support persons other than relatives might include the family doctor, minister, or even the funeral director. Gyulay (personal communication, 1991) stated that a support person is one who validates their pain, is trust-
N
urses have an important role in providing support to the parents of SIDS victims.
worthy, and does not ridicule the parent with cliches. She noted that anyone can fill this role, and it often changes at various times during the grief process. Williams and Nikolaisen (1982) reported that one half of the single parents in their study had seriously considered suicide-indicating a lack of support. Nikolaisen and Williams (1980) found that the spouse, relatives, and friends were the most helpful during the early crisis. However, after the initial period, many families experienced a withdrawal of this support. Unfortunately, at this time reality is setting in, and the parents need additional support and reassurance that they were not at fault (Zebal and Woolsey, 1984). The support persons often assume that because the baby was so young the attachment was not strong and expect the family to recover fairly quickly. A Connecticut mother noted: People told me that I was lucky that I didn’t have her any l0n.u than I did or they say, ‘Tust be &ad it wasn’t one of your older children” as *Tit makes some da&-ence bow long you have your child to de&e bow much it should huti to loseit (DeFrain et al., 1987,
p. 31).
of Pediatric Health Care Volume 7, Number 2
Gyulay (personal communication, 1991) discussed a period of desensitization in which the mother wants to talk about her experience. She “tells the story” over and over, each time adding more details. Often friends tire of hearing the story and simply do not want to hear it again; others have trouble dealing with the death themselves, but most are just afraid to talk about death. They do not know what to say. l
NURSING INTERVENTIONS
Nurses have an important role in providing support to the parents of a SIDS victim. Gyulay (personal communication, 1991) maintained that most emergency rooms are doing a good job of handling SIDS cases and the special needs that parents have. Nurses can help with all the emotions that the family may exhibit, including guilt, anger, and sadness (Dubin & Sarnoff, 1986). Nurses can also offer spiritual support by calling clergy at the parents’ request. They can talk to parents and call the baby by name, even a nickname if the parents indicate. Gyulay explained that the baby should be in a clean gown and diapers and surrounded with some of the baby’s own belongings such as a bottle, blanket, or toy, if available. Both parents should be encouraged to hold the infant. They can be given private time to hold the infant and need not be rushed, even if the emergency department is busy and in need of the room or cart. Gyulay (personal communication, 199 1) explained that if parents do not see the baby they often regret it. She has never had anyone regret seeing and even holding the baby. The parents should be asked if they want the baby baptized and accommodate their wishes. If the mother is breast feeding she should be encouraged to contact the Le Leche League or the local SIDS chapter for assistance during the abrupt stoppage of breast feeding. Before leaving the emergency department the nurse may want to give the parents a memento of the infant such as a lock of hair, photographs, or footprints. Parents should be given a brochure about SIDS and the local number of the SIDS foundation. A name and mmber of a person in the hospital that they can contact is helpful. The nurse also should make sure the parents will be taken home safely; someone else should drive them home. Arrangements for staying with someone else or for child care may also be necessary. The nurse should notify personnel in the SIDS foundation of the death (Jezierski, 1989). Groups such as Resolve Through Sharing can also be contacted to assist the family in their grief. The next nursing responsibility is assisting the family in accepting the death, ensuring that the grieving process progresses to acceptance, and meeting the individual needs of the family. A phone call in the first 48 hours to assist with funeral arrangements and child care is helpful. As soon as SIDS is confirmed by the autopsy,
Journal of Pediatric March-April 1993
Health
Care
the nurse can provide additional information on SIDS and reassure the parents that the child did not die because of something they did or did not do. A caring attitude during this sensitive period is essential (DeFrain et al., 1987). A home visit should be made within 2 weeks of the death. This can be done by a volunteer of the local SIDS group or the public health nurse. At this time the nurse reviews information on SIDS. The most important behavior is for the nurse to listen to whatever the family wants to say. Often the parents may experience very intense emotions. The nurse should reassure the family
T
he first task is the acceptance of the reality of death.
that such feelings are normal (Miles, 1990). By making another visit 1 month after the death, the nurse can help relieve fears and reassure the parents about their feelings. At this time discussing marital relationships and surviving sibling conflicts is appropriate, to assesshow the parents appear to be grieving and to look for potential problems (DeFrain et al., 1987). Although the frequency and length of visits vary according to the couple’s needs, possible follow-up visits are recommended at the time of subsequent pregnancies, on anniversary dates, and after subsequent children are born (DeFrain et al., 1987). The couple may take 1 to 2 years to regain the same level of happiness that they held before their child died (Nikolaisen, 1981). Woolsey (1988) describes four major tasks necessary for healthy resolution of the loss. The first task is the acceptance of the reality of the death. Seeing and holding the body seems to help achieve this task. The second task is mourning or experiencing the pain of the loss. A person who fails to grieve may show signs of emotional numbness and later evidence of symptoms of depression or psychosomatic illness (Zebal & Woolsey, 1984). The third task is adjusting to the environment without the deceased. The parents need to make decisions about what to do with the baby’s room and clothes and toys. They may think about having another baby. They may need to work on feeling comfortable around other babies. The final task is reinvesting emotional energy into new relationships. Resuming specific activities such as work, socialization, and house work serve as yardsticks of individual and family adjustment (May & Breme, 1982-83). n
CONCLUSION
The tragic experience of SIDS is characterized by very intense feelings and emotions. The unexpectedness and
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guilt can be overwhelming. The grief process is long, stressful, and often is not understood by other people. The death has a great effect on marital relationships and surviving siblings. The nurse can play a major role in helping the parents to resolve their grief. Further research regarding sexual relationships between the parents, the father’s grief reaction, and the role of the professional in the support system is needed. . I thank
Dr.
Jody
Gyulay
for
her time
and her
commitment
to SIDS. She has truly helped many parents through this difficult ordeal, and her special gifts in this field are appreciated by all. REFERENCES Buschbacher, V., & Delcampo, R. (1987). Parents’ response to sudden infant death syndrome. JOURNAL OF PEDIATRIC HEALTH CARE, 1, 85-90. DeFrain, J., Taylor, J., & Ernst, L. (1987). Copin8 with sudden infant death. Lexington, MA: Lexington Books. Dubin, W., & Samoff, J. (1986). Sudden unexpected death: Interventions with the survivors. Annals ofEmpxy Medicine, 15, 5474. Feeley, N., & Gottiieb, L. (1988-89). Parent’s coping and communication following their infants death. Omega, 19, 5 l-67. Herbst, J., Kelly, D., Naeye, R., & Valdes-Dapena, M. (1988). New findings shed light on SIDS. Patient Care, 22, 61-81. Jezierski, M. (1989). Infant Death: Guidelines for support of parents in the emergency department. Journal of Emer-my Nursing, 15, 475-476. Mandell, F., McAnuhy, E., & Reece, R. (1980). Observations of paternal response to sudden unanticipated death. Pediatrics, 65, 221-225. May, H., & Breme, F. (1982-83). SIDS family adjustment scale: A method of assessing family adjustment to sudden infant death syndrome. Omega, 13, 59-73. Miles, A. (1990). Caring for families when a child dies. Pediatic
Nursing 16, 346-347. National about
Nikolaisen, family: Nikolaisen, lowing
SIDS SuaYen
Alliance. Infant
(1992).
What
emyparentshodd
know: Facts
Death Syndrome. Columbia,
MD. infant death
S. (1981). The impact of sudden on the Nursing intervention. Topics in Clinical Nursing, 3, 45-53. S., & Williams, R. (1980). Parents’ view of support folthe loss of their infant to sudden infant death syndrome. Western Journal of Nurring Research,2, 592-601. Price, M., Carter, B., Shelton, T., & Bendell, D. (1985). Maternal perceptions of sudden infant death syndrome. CHC, 14,2231. Swoiskin, S. (1986). Sudden infant death: Nursing care for the survivors. Journal of Pediatric Nursing, 1, 33-38. Wiiiams, R., & Nikolaisen, S. (1982). Parents’ perceptions and responses to the loss of their infant. Research in Nursing and Health, 5, 55-61. Woolsey, S. (1988). Support after sudden infant death. American Joxmzl of Nuning 88, 1347-1352. Zebal, B., & Woolsey, S. (1984). SIDS and the family: The pediatrician’s role. Pediatric Annals, 13, 23-240, 243-246.