Care of the Parents

Pregnancy

A mother’s and father’s actions and responses toward their infant are derived from a complex combination of their own genetic endowment, the way the infant responds to them, a long history of interpersonal relations with their own families and with each other, past experiences with this or previous pregnancies, the absorption of the practices and values of their cultures, and probably most importantly, how each was raised by his or her own mother and father. The parenting behavior of each woman and man, his or her ability to tolerate stresses, and his or her need for special attention differ greatly and depend on a mixture of these factors. Fig. 7.1 is a schematic diagram of the major influences on paternal and maternal behavior and the resulting disturbances that we hypothesize may arise from them.

Included under parental background are the parent’s care by his or her own mother, genetics of parents, practices of their culture, relationships within the family, experiences with previous pregnancies, and planning, course, and events during pregnancy. Strong evidence for the importance of the effect of the mother’s own mothering on her caretaking comes from an elegant 35-year study by Engel et al. that documented the close correspondence between how Monica (an infant with a tracheoesophageal fistula) was fed during the first 2 years of life, how she then cared for her dolls, and how as an adult she fed her own four children.

During the first hours and days of life, it is here, during this period, that studies have in part clarified some of the steps in parent–infant attachment. A diversity of observations are beginning to piece together some of the various phases and times that are helpful for this process ( Box 7.1 ). Pregnancy for a woman has been considered a process of maturation, with a series of adaptive tasks, each dependent on the successful completion of the preceding one.

Some mothers may be initially disturbed by feelings of grief and anger when they become pregnant because of factors ranging from economic and housing hardships to interpersonal difficulties. However, by the end of the first trimester, the majority of women who initially rejected pregnancy have accepted it. This initial stage, as outlined by Bibring, is the mother’s identification of the growing fetus as an “integral part of herself.”

The second stage is a growing perception of the fetus as a separate individual, usually occurring with the awareness of fetal movement. After quickening, a woman generally begins to have some fantasies about what the baby may be like; she attributes some human personality characteristics and develops a sense of attachment and value toward the baby. At this time, further acceptance of the pregnancy and marked changes in attitude toward the fetus may be observed; unplanned infants can become deeply valued. Objectively, the health worker usually finds some outward evidence of the mother’s preparation in such actions as the purchase of clothes or a crib, selecting a name, and arranging space for the baby.

The increased use of amniocentesis and ultrasound has appeared to affect parents’ perceptions of babies in a rather unexpected fashion. Many parents have discussed the disappointment they experienced when they discovered the sex of the baby. Half of the mystery was over. Everything was possible, but once the amniocentesis was done and the sex of the baby known, the range of the unknown was considerably narrowed. However, the tests have the beneficial result of removing some of the anxiety about the possibility of the baby having an abnormality. We have noted that, following the procedure, the baby is sometimes named, and parents often carry around a picture of the very small fetus. This phenomenon requires further investigation to understand the significance of these reactions to the bonding process.

Cohen suggests the following questions to learn the special needs of each mother :

• How long have you lived in this immediate area, and where does most of your family live?

• How often do you see your mother or other close relatives?

• Has anything happened to you in the past (or do you currently have any condition) that causes you to worry about the pregnancy or the baby?

• What was the father’s reaction to your becoming pregnant?

• What other responsibilities do you have outside the family?

When planning to meet the needs of the mother, it is important to inquire about how the pregnant woman was mothered—did she have a neglected and deprived infancy and childhood or grow up with a warm and intact family life?

Labor and Delivery

Newton and Newton noted that those mothers who remain relaxed in labor, who are supported, and who have good rapport with their attendants are more apt to be pleased with their infants at first sight.

One Cochrane review looked at the importance of continuous support for women during childbirth. Looking at 21 trials involving 15,061 mothers, the results showed that women who had continuous social support during labor and birth had labors that were significantly shorter, were more likely to have a spontaneous vaginal birth, and were less likely to have intrapartum analgesia. They also were less likely to have a cesarean section or instrumented vaginal birth, regional anesthesia, or a baby with a low 5-minute Apgar score. This low-cost intervention may be a simple way to reduce the length of labor and perinatal problems for women and their infants during childbirth.

Effects of Social and Emotional Support on Maternal Behavior

Pregnancy and labor, a highly significant time in a woman’s life, has been explored in depth because the care during labor appears to affect a mother’s attitudes, feelings, and responses to her family, herself, and especially her new baby to a remarkable degree. In a well-conducted trial of continuous social support in South Africa, both mothers with and without doula support were interviewed immediately after delivery and 6 weeks later. Women who had support during labor had significantly increased self-esteem, believed they had coped well with labor, and thought the labor had been easier than they had imagined. Women who received this support reported being less anxious 24 hours after birth compared with mothers without a doula. Supported mothers were significantly less depressed 6 weeks postpartum, as measured on a standard depression scale. Also, supported mothers had a significantly greater incidence of breastfeeding without supplements (52% versus 29%), and they breastfed for a longer period.

The supported mothers said it took them an average of 2.9 days to develop a relationship with their babies compared with 9.8 days for the nonsupported mothers. This feeling of attachment and readiness to fall in love with their babies made them less willing to leave their babies alone. They also reported picking up their babies more frequently when they cried than did nonsupported mothers. The supported mothers were more positive in describing the special attributes of their babies than were the nonsupported mothers. A higher percentage of supported mothers not only considered their babies beautiful, clever, healthy, and easy to manage, but also believed their infants cried less than other babies. The supported mothers believed that their babies were “better” when compared with a “standard baby,” whereas the nonsupported mothers perceived their babies as “almost as good as” or “not quite as good as” a “standard baby.” “Support group mothers also perceived themselves as closer to their babies, as managing better, and as communicating better with their babies than control-group mothers did,” the study reported. A higher percentage of the supported mothers indicated that they were pleased to have their babies, found becoming a mother was easier than expected, and thought that they could look after their babies better than any other person could. In contrast, the nonsupported mothers perceived their adaptation to motherhood as more difficult and believed that others could care for their baby as well as they could.

A most important aspect of emotional support during childbirth may be the most unexpected internalized one—that of the calm, nurturing, accepting, and holding model provided for the parents with support during labor. Maternal care needs modeling; each generation is influenced from the care received by the earlier one. Social support appears to be an essential ingredient of childbirth that was lost when birthing moved from home to hospital.

The Day of Delivery

Mothers after delivery appear to have common patterns of behavior when they begin to care for their babies in the first hour of life. Filmed observations reveal that when a mother is presented with her nude, full-term infant in privacy, she begins with fingertip touching of the infant’s extremities and within a few minutes proceeds to massaging, encompassing palm contact of the infant’s trunk. Mothers of premature infants also follow this sequence, but proceed at a much slower rate. Fathers go through some of the same routines.

A strong interest in eye-to-eye contact has been expressed by mothers of both full-term and premature infants. Tape recordings of the words of mothers who had been presented with their infants in privacy revealed that 73% of the statements referred to the eyes. The mothers said, “Let me see your eyes” and “Open your eyes and I’ll know you love me.” Robson has suggested that eye-to-eye contact appears to elicit maternal caregiving responses. Mothers seem to try hard to look “en face” at their infants—that is, to keep their faces aligned with their baby’s so that their eyes are in the same vertical plane of rotation as the baby’s. Complementing the mother’s interest in the infant’s eyes is the early functional development of the infant’s visual pathways. The infant is alert, active, and able to follow during the first hour of life if maternal sedation has been limited and the administration of eye drops or ointment is delayed.

Additional information about this early period was provided by Wolff, who described six separate states of consciousness in the infant, ranging from deep sleep to screaming. The state in which we are most interested is state 4, the quiet, alert state. In this state, the infant’s eyes are wide open, and he or she is able to respond to his or her environment. The infant may only be in this state for periods as brief as a few seconds. However, Emde et al. observed that the infant is in a wakeful state on the average for a period of 38 minutes during the first hour after birth. It is currently possible to demonstrate that an infant can see, has visual preferences, has a memory for the mother’s face at 4 hours of age, will turn his or her head to the spoken word, and moves in rhythm to the mother’s voice in the first minutes and hours of life—a beautiful linking and synchronized dance between the mother and infant. After this, however, the infant goes into a deep sleep for 3 to 4 hours.

Therefore during the first 60 to 90 minutes of life, the infant is alert, responsive, and especially appealing. In short, the infant is ideally equipped to meet his or her parents for the first time. The infant’s broad array of sensory and motor abilities evokes responses from the mother and begins the communication that may be especially helpful for attachment and the initiation of a series of reciprocal interactions. It is important to keep the mother–infant dyad together during those first critical moments whenever medically possible.

Observations by Condon and Sander reveal that newborns move in rhythm with the structure of adult speech. Interestingly, synchronous movements were found at 16 hours of age with both of the two natural languages tested, English and Chinese.

Mothers also quickly become aware of their infant. Kaitz et al. demonstrated that after only 1 hour with their infants in the first hours of life, mothers are able to discriminate their own baby from other infants. Parturient women know their infant’s distinctive features after minimal exposure using olfactory and tactile cues (touching the dorsum of the hand), whereas discrimination based on sight and sound takes somewhat longer to develop. Fathers are good at quickly recognizing their newborn through visual-facial cues, although not quite as good as mothers at recognizing olfactory cues.

Without attachment, there is risk for the following parenting disorders: vulnerable child syndrome, child abuse, failure to thrive, and some developmental and emotional problems in high-risk infants. Other determinants—such as the attitudes, statements, and practices of the nurses and physicians in the hospital, whether the mother is alone for short periods during her labor, whether there is separation from the infant in the first days of life, the nature of the infant, his or her temperament, and whether he or she is healthy, sick, or malformed—will affect parenting behavior and the parent–child relationship. Included under care practices are the behavior of physicians, nurses, and hospital personnel, care and support during labor, first days of life, separation of mother and infant, and rules of the hospital. The variables most easily remedied in this scheme are the separation of the infant from the mother and the practices in the hospital during the first hours and days of life.

Care of the Healthy Term Infant and Parents Following Birth

After birth, the newborn should be thoroughly dried with warm towels so as not to lose heat and be observed to have good color and be active (usually within 5 minutes); ideally, this can be done on the mother. If not, the warm and dry infant should be placed between the mother’s breasts or on her abdomen or, if she desires, next to her as soon as possible. The latest Neonatal Resuscitation Program guidelines emphasize that babies who do not need resuscitation should not be separated from their mothers.

When newborns are kept close to their mother’s body or on their mother, the transition from life in the womb to existence outside the uterus is made much easier for them. The newborn recognizes his mother’s voice and smell, and her body warms his to just the right temperature. In this way, the infant can experience sensations somewhat similar to what he felt during the last several weeks of uterine life.

In the past, many caretakers believed that the newborn needs help to begin to nurse. So often, immediately after birth, the baby’s lips are placed near or on the mother’s nipple. In that situation, some babies do start to suckle, but most babies just lick the nipple or peer up at the mother. They appear to be much more interested in the mother’s face, especially her eyes, even though the nipple is right next to their lips. They most commonly begin, when left on their own, to move toward the breast 30 to 40 minutes after birth.

The Breast Crawl

One of the most exciting observations made is the discovery that the newborn has the ability to find her mother’s breast all on her own and to decide for herself when to take her first feeding. In order not to remove the taste and smell of the mother’s amniotic fluid, it is necessary to delay washing the baby’s hands. The baby uses the taste and smell of amniotic fluid on her hands to make a connection with a certain lipid substance on the nipple related to the amniotic fluid.

The infant usually begins with a time of rest and quiet alertness, during which he rarely cries and often appears to take pleasure in looking at his mother’s face. Around 30 to 40 minutes after birth, the newborn begins making mouthing movements, sometimes with lip smacking, and shortly after, saliva begins to pour down onto his chin. When placed on the mother’s abdomen, babies maneuver in their own ways to reach the nipple. They often use stepping motions of their legs to move ahead while horizontally moving toward the nipple, using small push-ups and lowering one arm first in the direction they wish to go. These efforts are interspersed with short rest periods. Sometimes babies change direction in the midst of their journey. These actions take effort and time. Parents find patience worth every minute if they wait and observe their infant on his first journey.

In Fig. 7.2 , one newborn is seen successfully navigating his way to his mother’s breast. At 10 minutes of age, he first begins to move toward the left breast, but 5 minutes later, he is back in the midline. Repeated mouthing and sucking of the hands and fingers is commonly observed. With a series of push-ups and rest periods, he makes his way to the breast completely on his own, placing his lips on the areola of the breast. He begins to suckle effectively and closely observes his mother’s face.

In one group of mothers who did not receive pain medication and whose babies were not taken away during the first hours of life for a bath, vitamin K administration, or application of eye ointment, 15 of 16 babies placed on their mother’s abdomen were observed to make the trip to their mother’s breast, latch on their own, and begin to suckle effectively.

This sequence is helpful to the mother as well, because the massage of the breast and suckling induce a large oxytocin surge into her bloodstream, which helps contract the uterus, expelling the placenta and closing off many blood vessels in the uterus, thus reducing bleeding. The stimulation and suckling also helps in the manufacture of prolactin, and the suckling enhances the closeness and new bond between mother and baby. Mother and baby appear to be carefully adapted for these first moments together.

To allow this first intimate encounter, the injection of vitamin K, application of eye ointment, washing, and any measuring of the infant’s weight, height, and head circumference may be delayed for at least 1 hour. More than 90% of all full-term infants are normal at birth. In a few minutes, they can be easily evaluated to ensure that they are healthy.

The odor of the nipple appears to guide a newborn to the breast. If the right breast is washed with soap and water, the infant will crawl to the left breast, and vice versa. If both breasts are washed, the infant will go to the breast that has been rubbed with the amniotic fluid of the mother. The special attraction of the newborn to the odor of his mother’s amniotic fluid may reflect the time in utero when, as a fetus, he swallowed the liquid. Although it is not breast milk, amniotic fluid probably contains a substance that is similar to a secretion of the breast. Amniotic fluid on the infant’s hands probably also explains part of the interest in sucking the hands and fingers seen in the photographs. Early hand-sucking behavior is markedly reduced when the infant is bathed before the crawl. With all these innate programs, it almost seems as if the infant comes into life carrying a small computer chip with these instructions.

At a moment such as childbirth, we come full circle to our biological origins. Many separate abilities enable a baby to do this. Stepping reflexes help the newborn push against his mother’s abdomen to propel him toward the breast. Pressure of the infant’s feet on the abdomen may also help in the expulsion of the placenta and in reducing uterine bleeding. The ability to move his hand in a reaching motion enables the baby to find the nipple. Taste, smell, and vision all help the newborn detect and find the breast. Muscular strength in the neck, shoulders, and arms helps newborns bob their heads and do small push-ups to inch forward and side to side. This whole scenario may take place in a matter of minutes; it usually occurs within 30 to 60 minutes, but it is within the capacity of the newborn. It appears that young humans, like other baby mammals, know how to find their mother’s breast.

When the mother and infant are resting skin to skin and gazing eye to eye, they begin to learn about each other on many different levels. For the mother, the first minutes and hours after birth are a time when she is uniquely open emotionally to respond to her baby and to begin the new relationship.

Early and Extended Contact for Parents and Their Infant

Although debate continues on the interpretation and significance of some of the research studies regarding the effects of early and extended contact for mothers and fathers on bonding with their infants, both sides agree that all parents should be offered such contact time with their infants. A Cochrane Review looked at 30 studies involving 1925 participants (mother–infant dyads) and concluded that early skin-to-skin contact for mothers and their healthy newborns reduced crying, improved mother-baby interaction, kept the baby warmer, and women breastfeed successfully.

Evidence suggests that many of these early interactions also take place between the father and his newborn child. Parke has demonstrated that when fathers are given the opportunity to be alone with their newborns, they spend almost exactly the same amount of time as mothers in holding, touching, and looking at them.

How strongly should physicians and nurses emphasize the importance of parent–infant contact in the first hour and extended visiting for the rest of the hospital stay? Despite a lack of early contact experienced by many parents in hospital births in the past, almost all these parents became bonded to their babies. The human is highly adaptable, and there are many fail-safe routes to attachment. Parents who miss the bonding experience can be assured that their future relationship with their infant can still develop as usual. Mothers who miss out on early and extended contact are often those at the limits of adaptability and who may benefit the most—the poor, the single, the unsupported, and the teenage mothers.

At least 60 minutes of early contact in privacy should be provided, if possible, for parents and their infant to enhance the bonding experience. If the health of the mother or infant makes this impossible, then discussion, support, and reassurance should help the parents appreciate that they can become as completely attached to their infant as if they had the usual bonding experience. If modifications are needed based on medical need, the medical team should do what they can to keep the mother and baby together while maintaining safety for both the infant and mother. The baby should remain with the mother as long as desired throughout the hospital stay so that the mother and the baby can get to know each other. This permits both mother and father more time to learn about their baby and to gradually develop a strong tie in the first weeks of life.

From these many findings are the following recommendations for changing the perinatal period for mother and for the healthy, term infant:

• Every mother should ideally have continuous physical and emotional support during the entire labor by a knowledgeable, caring woman (e.g., doula, obstetric nurse, or midwife) in addition to her partner.

• Childbirth educators and obstetric caregivers should discuss with every pregnant woman the advantages of an unmedicated labor to avoid interference with the infant’s ability to interact, self-attach, and successfully breastfeed.

• Immediately after birth and a thorough drying, an infant who has good Apgar scores and appears normal should be offered to the mother for skin-to-skin contact, with warmth provided by her body and a light blanket covering the baby. The baby should not be removed for a bath, footprinting, or administration of vitamin K or eye medication until after the first hour. The baby thus can be allowed to decide when to begin his first feeding.

• The central nursery should be used infrequently. All babies should room-in with their mothers throughout the short hospital course unless this is prevented by illness of mother or infant. If rooming is not possible due to medical needs, efforts should be made for mother–infant interactions as much as possible.

• Early and continuous mother–infant contact appears to decrease the incidence of abandonment and increase the length and success of breastfeeding. All mothers should begin breastfeeding in the first hour, nurse frequently, and be encouraged to breastfeed for at least the first 2 weeks of life, even if they plan to return to work. Early, frequent breastfeeding has many advantages, including earlier removal of bilirubin from the gut as well as aiding in mother–infant attachment.

The Sick or Premature Infant

Parents of infants requiring neonatal intensive care often experience high levels of stress, and as a consequence, this impairs their abilities to interact optimally with their infants. For many parents, this may be the first time they have had to cope with a significant challenge in their lives. This may lead to depression, impaired recall, dysfunctional parenting patterns, and poorer child developmental outcomes. The perinatal healthcare team is presented with a unique opportunity to practice family-centered and preventive health care.

During this stressful time, the families’ usual problem-solving mechanisms may not be adequate to cope with the events presented to them. In addition to confronting this situational crisis, the individual or family must master the normal developmental process of parenthood.

Situational factors can have an important bearing on the family’s ability to cope with the crisis and thus affect the overall outcome. Uncertainty about their infant’s future and separation from their infant are sources of parental stress that can dramatically affect the quality of attachment that develops. Even when parents have close contact with their infants in the intensive care nursery, they may still experience prolonged stress.

Highly interacting mothers visit and telephone the nursery more frequently while the infants are hospitalized, and stimulate their infants more at home. Mothers who stimulate their infants very little in the nursery also visit and telephone less frequently and provide only minimal stimulation to them at home. Most perceptively, Minde et al. noted that mothers who touched their infants more in the nursery had infants who opened their eyes more often. He and his associates observed the contingency between the infant’s eyes being open and the mother’s touching and between gross motor stretches and the mother’s smiling. They could not determine to what extent the sequence of touching and eye opening was an indication of the mother’s primary contribution or whether it was initiated by the infant. Thus Newman and Minde et al. predict that mothers who become involved with, interested in, and anxious about their infants in the intensive care nursery will have an easier time when the infant is taken home.

Families are psychologically vulnerable after the birth of a sick infant. During this period of crisis, there may be a heightened receptivity to accepting help and being open and responsive to change as the family is struggling for a way to cope with the crisis. Significant potentialities exist for individual and family emotional growth and development. Parental perception of support by nurses was significantly associated with maternal depressive symptoms; as the perception of nursing support decreased, there was a corresponding increase in the maternal depressive symptoms. The perinatal health team has an opportunity to influence how the individual and family adapt to the crisis.

By providing appropriate supportive interventions coupled with enlightened policies and attitudes that reflect family-centered principles, the team can have a significant positive influence on the family’s ability to cope. With this comes the enhanced likelihood for successful adjustment and ultimately a healthy parent–child relationship. ^a

a 4,5,6,12,64,66,67

Family-centered care principles stress that parents are the most important persons in their infant’s life, that they have expertise in caring for the infant, and that their values and beliefs should be central during neonatal intensive care unit (NICU) care. Family-centered care demands a change from task-oriented, healthcare provider–centered care to a collaborative, relationship-based model of family advocacy and empowerment.

Family-centered care is a philosophy often strived for in the NICU, but current practice and policies can often lag behind philosophy. NICU staff verbalize acceptance of families being involved in care, but their actions do not always reflect their words. Studies show a discrepancy between nurses’ knowledge about the necessity of and their current practice of family-centered care. Current practice of family-centered care scored significantly lower than scores representing necessity: NICU staff do not consistently practice what they know to be necessary. Organizational barriers to implementation include: (1) the design of the healthcare system; (2) the lack of emotional support, guidance, and direction for the staff; (3) the lack of recognition, confidence, and support for nursing autonomy and skills to perform family-centered care; and (4) beliefs that dealing with families is stressful, interferes with care of the infant, and is “not part of my job.”

Fenwick’s research reports that mothers perceive their relationship with NICU nurses as either facilitating or inhibiting their ability to mother their infants in the NICU. Actions that facilitate mothering are family centered or family integrated. Facilitative nursing actions include fostering the relationship between mother and infant by: (1) assisting mothers to gain intimate knowledge and caregiving opportunities, (2) educating parents about their infants medical condition, (3) providing ongoing positive feedback to parents, (4) acknowledging the importance of the dyadic mother–infant and father–infant relationship, (5) honoring the mother as the infant’s primary caregiver, (6) enhancing mother–infant interaction opportunities, and (7) collaborating with parents and relinquishing control to parents, particularly at the bedside.

The parents are very sensitive to the staff’s attitude toward the infant, as reflected by their comments and the manner in which the staff handle the infant. If the infant is regarded with respect and treated as important, the parent is given the feeling that the infant is seen as valued and worthwhile. This is especially important for parents of an infant with a congenital anomaly; the parents could wonder if their infant is viewed as “damaged goods” by society. In describing the infant to the parent, staff present a balanced picture of both the normal and abnormal aspects of the infant. In discussing the infant with the parents, staff should refer to the infant by name, if they have named the infant; this helps personalize the infant and establish the infant’s unique identity.

To reinforce the caregiving needs of parents, discuss with them their plans to feed their infant. Support and encouragement should be given whether the parents have decided on breastfeeding or bottle-feeding. In most situations, breastfeeding an infant even in the NICU is possible. Many mothers can pump their breasts for milk that eventually will be given to the infant. The breastfeeding or pumping experience helps the mother feel close to her infant and helps her feel that she has some control over what is happening to her infant; she can uniquely contribute to her infant’s care in a way no one else can. Fathers, too, can participate in this activity by their support and interest in the actual breastfeeding or the pumping and milk collection activities. Many mothers can pump and eventually put the infant to breast, but others cannot because of emotional stresses, the condition of the infant, and the length of time until the infant can feed. Regardless of eventual success, the mother should be encouraged to try if she has an interest; then she can feel that she made an attempt to relate to her infant in this way. If a mother does not plan to breastfeed or pump or if she tries but does not continue, she should not be made to feel guilty or that she failed in her role. She is already vulnerable to these feelings.

After the delivery, when the mother is taken to her room without a healthy infant, she usually experiences a void. The interventions of the staff should be flexible and sensitive to the individual needs of the family. Empathy, responsiveness, and an ability to listen to the parents are important at this time.

Encouraging parents to verbalize and express their feelings and concerns (at their own pace), although difficult to do at times, is useful to the parents. Listening is as important to parents as giving them information. In talking to parents, bear in mind that the parents do not remember much of what has been said; it is very difficult for them to assimilate all that has happened, both cognitively and emotionally.

Some parents are very sad, depressed, and teary, and others may be highly anxious, at times bordering on panic states; others react by having a flat affect, withdrawing, and appearing apathetic. Some parents may exhibit very angry, hostile, confrontational behavior as a way of dealing with their distress. Others may deny the situation by optimistically feeling that “everything will be OK.”

Parents need permission to have their feelings. It is essential to acknowledge to parents that it is normal to be afraid of attaching to an infant who is ill. Giving permission diminishes the guilt that the parents may feel about their behavior being abnormal or about being bad parents because they are afraid. Simple statements such as “Many parents tell us they are afraid of getting close to their baby.” Social workers can provide valuable emotional support to families in helping them deal with their realistic and unrealistic concerns.

Prior studies have demonstrated that when parents experience less stress, they are more able to form early attachments to their sick infants. Mothers with greater stress have less positive attitudes and interactions with their infants than those with less stress. This lack of parenting confidence has been associated with lower levels of child competence and poorer child developmental outcomes. Conversely, multiple studies have shown that positive attitudes and parental confidence are associated with secure infant attachments that lead to increased child competence and better developmental outcomes. Studies have found an alarmingly high rate of psychologic pathology and traumatic stress in parents of infants in the NICU. Lefkowitz et al. had 86 mothers and 41 fathers complete measures of acute stress disorder (ASD) and found that 3 to 5 days after the infant’s NICU admission, 35% of mothers and 24% of fathers met diagnostic criteria for ASD. Additionally, 30 days later, 15% of mothers and 8% of fathers actually met diagnostic criteria for posttraumatic stress disorder. In some units, a psychiatrist is available to regularly meet with parents who wish to speak with him/her; this is an extremely helpful and necessary program. Sensitivity training for patients aimed at recognizing signs of infant stress is associated with improved cerebral white matter development in preterm infants. Thus it is not surprising that supportive interventions can decrease parental stress while infants are in the NICU and thereby promote better mother–infant attachment and improved infant developmental outcomes.

Communicating Medical Information

Most of the foundational work of family-centered care rests on effective communication. It is well established that specific healthcare provider and patient/parent communication behaviors are associated with improved patient health status, recall, treatment adherence, and satisfaction. The role of the healthcare professionals in communicating medical information is important. Parents need a realistic assessment of the situation that is honest and direct. Acknowledge the infant’s condition and possible problems, but not necessarily every potential problem that can arise.

The principles of family-centered, family-integrated neonatal care clearly promote family participation in every aspect of their infant’s care. Professional attitudes that may interfere with open, honest communication include: (1) assuming that parents are too emotional to assimilate information and make a rational decision, (2) assuming that information about complications and poor outcomes may disrupt attachment to the neonate, (3) assuming that parental guilt and psychologic harm will ensue from decision-making (despite research to the contrary), and (4) cultural and language differences.

Many parents desire and can handle complete, specific, honest, detailed, unbiased, and meaningful information—the same facts and interpretation of those facts as the staff—delivered in a humane and respectful manner. Parents have expressed “remarkably uniform and unambiguous requests … to receive early, honest, and detailed information in a comprehensible and sympathetic manner and to be together when given bad news.”

Individuals vary in their desire to be informed and involved in decision-making. Individuals also vary in the manner in which they assimilate information. Some parents may want extensive information about their situation, whereas others may not. However, physicians have an ethical and legal obligation to give parents the facts from which to make an informed shared decision about their neonate’s condition, illnesses, outcomes, and the risks and benefits of various interventions.

Poor understanding by parents may be the result of poor communication techniques, contradictory messages, poor parental health, inexperience with medical terminology, denial, language barriers, inability to ask questions, or lack of opportunity to review the information. In one study, parents claimed that a neonatologist had never spoken to them, but, in fact, the conversation did occur and had been recorded. In this study, parents were given a tape recording of their initial conversation with the neonatologist and any subsequent conversations of importance. The audiotape proved useful: 96% of the mothers and 68% of the fathers listened to the tape again an average of 2.5 and 1.8 times, respectively. Eighty-five percent of parents who listened to the tape had forgotten elements of the conversation, and two mothers did not recall that the conversation had ever occurred.

Research has documented that postpartum women and parents in stressful situations have transient deficits in cognitive function, particularly in attention and memory function. Because verbal communication may be poorly remembered, augmentation with written instructions is recommended. Again, some parents may want and need this type of information, whereas others may not. All communication needs to be culturally and linguistically appropriate.

There are several other guidelines in communicating medical information to parents. As discussed, parents’ perceptions of their infant’s condition are extremely important, remain in parents’ minds, and can affect their relationship with the infant. Parents easily misperceive information given to them. Therefore in beginning any discussion with parents, it is essential to determine and address their perceptions. A staff member might say, “Could you tell me what you understand about your baby’s condition?” Starting this way will give the physician or nurse the opportunity to correct any misinformation or misconceptions and to hear about the parents’ concerns. The perceived morbidity of the baby is a source of stress for both mothers and fathers. Parents’ perceptions of the severity of their infant’s illness are complex, change over time, and are affected by parental anxiety, infant size, amount and type of equipment and treatments, and amount and type of information received from healthcare providers. A team member might specifically ask about the parents’ concerns or worries: “Could you tell me what concerns you have about your baby?” Asking this can make communication between the perinatal healthcare team and parents more meaningful and helpful; unless the team deals with the parents’ anxiety, discussions become one-sided lectures and benefit only the professional. Discussions should be a dialog between parent and professional.

During the course of a discussion and again at the end, it is useful to determine parents’ interpretations of what has been said and modify and clarify as needed. It is more productive to move at a pace that allows the parent to assimilate the information presented. It is important to use simple language that is understandable. For some parents, the use of statistics is helpful; for others, it is not. Statistics can be confusing because they do not apply to the individual case and can be misinterpreted easily. Finally, if a referring physician and the nursery team are both communicating with the parents, it is essential to coordinate the particular approach. It is very confusing to parents and decreases their trust level if they receive conflicting information.

The principles of family-centered neonatal care also advocate full and free access to lay and medical literature pertaining to the neonate’s condition, proposed treatments, and probable outcomes. Medical literature, articles, books, and videos should be available in the NICU or in the hospital library for the parents’ use. Access to the internet has proven to be a source of medical information (some accurate, some inaccurate) for families, as well as professionals. When recommending the internet as a resource, professionals should make parents aware of its benefits as well as shortcomings.

Providing culturally sensitive care in a growing multicultural and diverse society is essential and needs to be a constant pursuit in providing perinatal health care to families who have an infant in the NICU. It is important for the healthcare team to understand the values, beliefs, customs, and behaviors of the particular group(s) they serve. Culture influences beliefs about what causes illness and how that illness should be treated. The perinatal healthcare team needs to address cultural, linguistic, and spiritual competencies to provide family-centered care.

If a language or educational barrier is encountered, a qualified interpreter who is bilingual and ideally bicultural should be utilized. This is especially important in obtaining informed consent. A child or children should not be used as interpreters because they may have inadequate language skills and may be embarrassed by the topics being discussed. Often information that is translated, even by a certified translator, is not understood by families if they are not literate. However, illiteracy does not mean the family is not intelligent. Many parents can comprehend complex information if explained in a relevant manner.

Pictures can augment what is being explained. Providing a list of common medical terms and educational materials in the native language of the parents is another useful tool. At times, despite numerous discussions about the infant’s medical condition, the family may appear unable to comprehend what they have been told. Consider that even if the healthcare provider and family share the same language, the words may have different meanings depending on core cultural beliefs and values and the families’ previous experiences.

Becoming culturally competent healthcare providers is an ongoing developmental process. One should be aware of the dimensions and complexities in caring for individuals from diverse cultural backgrounds. It is important to understand the family’s core cultural dynamics, the meaning of the infant’s illness, and the social context within which these life events are occurring.

Interventions for Families of Premature Infants: Family-Centered Care in The NICU

Providing the optimal hospital environment for a critically ill newborn clearly involves a great deal of care and consideration for the needs of the family as well. Modern NICU design and planning ideally incorporate features such as healing art, family/social spaces, and respite areas for staff. One randomized, controlled trial in Stockholm found that allowing parents to stay in the NICU reduced the total length of hospital stay by 5.3 days. Every facility, no matter what level of resources, can take steps to improve the environment for infants and their families by developing a unit vision and philosophy that promote the principles of family-centered care. Multidisciplinary groups have created tools and lists of potentially better practices for family-centered care.

Some practices that may be considered for implementing family-centered, family-integrated care include the following :

• The unit vision and philosophy should clearly articulate the principles of family-centered care.

• Leaders at the center and the unit level should clearly promote the principles of family-centered care.

• Parents are not “visitors.” Rather, parents should be treated as essential components of the care team. Policies should be revised to reflect this view. “Visiting policies” should be revised to address nonparent family members and friends, whereas policies related to parents should be more appropriately addressed as participants in care.

• Neonatal care is multidisciplinary and based on mutual respect among providers for their roles and expertise. Parents are integral to care and should be encouraged to participate in patient care rounds, communication with personnel at the change of shifts, and in the bedside care of their infant. Parents should have access to information in their infant’s medical record, and many units have initiated parent documentation into the record.

• The physical environment should provide for the needs of parents. Parents’ needs for accessing information, rest, nutrition, privacy, childcare for siblings, and support for their infants by breast milk pumping are often inadequately addressed.

• Nursery staff should receive the support they need to provide optimal family-centered care. This support includes an environment that allows staff a time to rest to meet their own needs and ongoing education and resources to support family-centered care.

Families should be incorporated at various levels as advisors. The perspective of experienced families should be integral to the unit administrative activities. These could include parents as teachers during orientation and continuing education of staff, and parent advisory committees to collaborate in planning of new policies or space and ongoing quality improvement activities.