The Parents' Perspective on Neonatal Intensive Care

Abstract

Although a baby in the neonatal intensive care unit (NICU) is a family crisis, considerable advances in technology and care for the high-risk infant as well as the current philosophy and environment of the NICU have contributed to a diminished parental role, A brief literature review and interviews with parents are presented to support the concept of family-centered neonatal care.

Key Words: neonatal intensive care, parents, family-centered care, high-risk infants

1. Patricia J. Bauer, M.S.N., R.N.C., is a member of the Board of Directors of the Perinatal Association of Michigan and is Perinatal Outreach Coordinator at Munson Medical Center in Traverse City, Michigan, 49684.

 
Karen was born the first child of a couple in their 30s: a planned, desired baby. The pregnancy was described as normal, with labor beginning spontaneously at term. The infant was delivered by cesarean section after an eleven-hour labor with little progress and some evidence that the infant would not handle the stress of a prolonged labor. The full-term infant had Apgar scores of 8 and 9 and responded well to extra-uterine life for the first 16 hours. The mother was happy, exhausted, in pain, and having some difficulty getting the baby to nurse. When finally settled down for the night, the mother was awakened to the news that her baby was taken to the neonatal intensive care unit (NICU) because of respiratory distress. Karen was admitted to the NICU for possible sepsis or pneumonia and was placed on antibiotics and all manner of surveillance monitoring. She stabilized quickly, never requiring any supplemental oxygen nor showing any evidence of infection by culture. Discharge was delayed over the weekend to allow for a pediatric cardiology evaluation: She was discharged from the NICU on the eighth day to her parents' care.

The Family in Crisis

Karen's mother was devastated by the experience. She described her reactions as fear, anger, confusion, and loss: "I felt like an outcast. It seemed like I didn't belong there even though my child was there. I never felt like I was getting all the information." She attempted unsuccessfully to breastfeed her infant once, and was then discouraged from nursing until day six. The parents felt that the staff was too busy with sicker babies to spend time with them and their baby: "No one was able to help me with breastfeeding. But then it was like a miracle. Everything turned out OK. Karen came home and it was like she knew where she belonged. She fit right into our lives. She nursed until she was 1 1/2 years old."

A baby in the neonatal intensive care unit is a family crisis. Parents are rarely prepared for the challenges of the NICU environment, such as the fragile condition of the infant, the high level of technology, and frequent crises (Brown, Pearl & Carassco, 1991). As one mother of twins described it: "It's always harder than you imagine. I'd visited the NICU beforehand. Evan didn't look like any baby we'd seen in any nursery." The parents' reactions to the birth of a premature baby or sick newborn have been compared to the stages people progress through in reacting to a traumatic grief-producing event: shock, denial, anger, bargaining, acceptance and adaptation (Harrison, 1983).

Considerable advances in technology and care for the high-risk infant have brought both burdens and blessings to families. Improved obstetric and neonatal interventions and aggressive resuscitations have gradually improved the survival of preterm infants and lowered the limits of viability, although the quality of life for the extremely low-birth-weight infant survivors remains a concern (Allen, 1993). Medical practice and social policy have placed a priority on aggressive infant care (Ensher & Clark, 1986).

But at what cost to families? These developments have created problems in counseling parents of infants born at the limit of viability. Parents need information about the benefits and risks of therapies and about the very experimental nature of much that takes place in medicine and neonatal care. Research on the outcomes of extremely low birth weight infants "serve to remind us of the experimental nature of current treatment of infants before and after birth, as well as the complexity of the maternal-fetal dyad," (Hack, 1993, p. 1650).

The complexity of the neonatal experience places demands on a couple who may have had no forewarning that there would be a problem: Premature birth is the most common reason infants require neonatal care. Pregnancy comes to an end before the mother has had the opportunity to complete the maternal tasks of pregnancy which prepare a woman for her new role. The sudden removal and transport of the infant to another unit or hospital further compounds the emotional upheaval that began with the onset of the maternal or newborn illness. The mother may be recovering from surgery, with its attendant pain; from the effects of prolonged bedrest and medications; as well as from the adaptation to childbirth. The family is separated. The parents feel total lack of control over their infant and his or her situation. They are bombarded with unintelligible medical language about their infant's condition and where their infant is being taken. "Parents often comprehend very little information during this time. They are in shock." (Kenner, 1990 p. 79). The mother leaves the hospital without a baby. The baby's needs are being met by equipment and by others—leaving parents with an unfulfilled birth experience and the fear that their baby will die.

For many parents, today birth has a heightened significance. Couples have fewer and better planned pregnancies. Hospital birth is more family centered, with parents as active participants. When a high-risk delivery deprives the mother of her desired birth experience, she may experience feelings of guilt and/or failure. Many women feel deprived and bitter; a common feeling is loss of control. The NICU experience for families can produce feelings of loss, uncertainty, helplessness, isolation, fear, worry, blurred boundaries of involvement, and mismatched perceptions. The parents may feel that they do not know their infant and are uncertain about becoming a parent to him or her (McNeil, 1992). These feelings only add to the stress of having a sick infant (Kenner, 1990).

During the hospitalization of the infant, parents may spend much of their time in the NICU, suffering the strain of distance, travel, and separation from supportive family members. When they are at home, they worry about the unanticipated crises that may occur in their absence. In addition to the stress of a hospitalized infant, the parents must continue with the realities of life: relationships, employment, and nurturing other children (Pinch & Spielman, 1993).

Every parent brings strengths and vulnerabilities to the critical care setting. These features can be assessed and valued in the relationship established between parents and professionals. Building on strengths and supporting parents in their vulnerabilities will impact their ability to establish a relationship with their child. Ultimately, the parents provide the environment of growth for the infant within a nurturing relationship. By supporting and caring for parents as well as sick newborns, the parent-child relationship may be enhanced.

Many parents express unqualified gratitude for the expert technology and skilled care that saved the lives of their children. Others, however, voice concern over the way they and their babies were treated in the NICU. The parents whom I interviewed for this article had many positive experiences with the NICU staff who cared for their babies; but, without exception, all felt that they were not involved as much as they would have liked in the care and decision making regarding their infant. One mother stated, "No one seemed to notice that this was our baby." Mothers desired more opportunities to provide care for their infants: "I told them I wanted to do as much as I could for Jason in the last two weeks he was there [in NICU]. I didn't want to be in the way. But, I'd ask, 'What can I do?' and they wouldn't ask me to do anything." When parents felt empowered enough to make suggestions regarding even simple aspects of their child's care, they were ignored or their suggestions were disputed. Parents received conflicting information from different staff members: What may have been agreed upon for parent caregiving by one staff member was suspect to a another staff member who was unfamiliar with the parent and child. One parent related to me that she felt that families who were disadvantaged socioeconomically were less likely to be trusted to care for their infants.

The highly professional and technological environment of the NICU makes it likely that parents will be "managed" in order to isolate the infant patient and keep the family at bay during this critical episode in the infant's life. Whatever the culture of the intensive care nursery, the tension between the need to protect frail newborns and the need to accede to the wishes and rights of their families permeates the atmosphere in the NICU (Guillemin & Holmstrom, 1986).

Health care professionals continue to model the "captain of the ship" approach to the care of infant patients and their families. The assumptions which support this model of care are that health care professionals know best the clinical care requirements of infants, and that the emotional reactions and limited preparation of parents preclude their participation in decision making regarding their infant's care (Guillemin & Holmstrom, 1986). The environment of the NICU does not lend itself to parental involvement.

The neonatal intensive care nursery is a high-tech battleground for infant survival. "Boring routines alternate with clinical skirmishes, frequent exposure to death, an emphasis on body counts (survival statistics), and for some, mixed feelings about the heavy artillery of hospital technology" (Guillemin & Holmstrom, 1986, p. 10). With mastery of the clinical approach to caring for sick newborns comes the real need to make the experience of having an infant in the NICU a more humane one. One parent, when asked what helped her in her experience of having a dying child in the NICU said, "Having someone say, 'Is there anything we can do?' (and then doing it)." The admission of every child to the NICU is a family crisis, not just for the most critical cases. Health care workers become desensitized to and comfortable with their work environment. The ratio of staff to patients may leave little time for the needs of parents: Keeping parents distanced is a better fit in the work environment. It takes time to listen, support, explain, repeat, and assess what parents need. The arena leaves little privacy for such intimate contact.

The individuals who choose to work in intensive care settings may be more comfortable with "taking care" of the family as well as the child. Caring has the potential for a positive impact; being "taken care of" is a paternalistic approach that may diminish the family's involvement in decision making and care. As one mother related, "I wanted so badly to come up and see him the night he was born. But they discouraged me and said, 'There will be no touching or holding.' I waited and cried and felt so empty."

Family-Centered Health Care

The challenge for the health care professionals is to see the infant within the context of the family. By understanding and responding to parents' needs, the iatrogenic complications or psychological side effects of an infant's hospitalization may be avoided. Bass and Kenner (1990) identified common categories of parental needs when their child is in the NICU. Parents need information, attachment and parenting opportunities, and person-related support: The family will provide all future care and nurturing requirements for their child. Many mothers and fathers have made significant steps toward bonding with their infants before the birth (Rubin, 1975). Their expectations are that they will be the primary caretakers and decision makers for their child. The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983) supported the concept of parents as the primary decision makers for their children unless otherwise specified by legal means (Stark & Thape, 1993).

Parent involvement in decision making requires that parents receive unbiased information in a supportive manner. While families differ in their ability to process complicated information and make very serious decisions, empowering families to participate in the decision-making process regarding their infant's care and treatment allows them to achieve some control in an environment that has been described as one which leaves parents feeling powerless. Every opportunity should be given to parents to participate to whatever degree is possible. Helping them to be the best possible decision makers can have an important positive impact on the family's feeling competent in their ability to care for their infant after discharge (Brown, et al., 1991).

Caring for families in crisis while providing life-saving care to sick newborns completes a circle with the family as the center. This philosophy of care is truly family-centered and requires a new method of operating within our service delivery system. Family-centered care in the neonatal unit offers the potential for fostering a positive environment for the infants by nurturing their parents. It is the family environment which probably has the greatest impact on the child's health (Shelton, Jeppson, & Johnson, 1987).

Early intervention programs for children with special needs have demonstrated the benefits of family-centered care. Family-centered care recognizes the pivotal role that the family plays in the life of a child with special health-care needs. The goal in family-centered care is to support families in their natural caregiving role by building on unique individual and/or family strengths (Shelton, et al., 1987). This approach promotes the family as a partner in the health care of their child. When restated and adapted to apply directly to care given in the NICU family-centered care includes:

1. Recognizing the family as a constant in the child's life, while the time in the NICU is temporary;
2. Facilitating parent and professional collaboration in the care, development, implementation and evaluation of programs for the child and in the development of treatment policy;
3. Sharing information on the child's condition, prognosis, etc. in an unbiased, supportive manner;
4. Implementing policies and procedures that include emotional and financial services for families including child-directed services;
5. Recognizing the individuality of families and including their strengths and different patterns of coping;
6. Understanding the developmental needs of sick newborns and incorporating them into the service delivery system;
7. Encouraging parent-to-parent support systems;
8. Designing health care policies and procedures that are flexible, accessible and responsive to the differing needs of families;
9. Honoring the racial, ethnic, cultural, and socioeconomic diversity of families (Brown, et al., 1991 p. 51).

Family-centered care encourages the full participation of the family as much as possible in caring for and making decisions for their hospitalized newborns. Parents of critically ill newborns and professionals involved with high-risk infants advocate a family-centered approach to treatment with mutually beneficial and supportive partnerships in the NICU and beyond. The principles for familycentered neonatal care developed by Harrison, (1993) represent the work of a parent/professional collaboration on this issue.

The implementation of family-centered care calls for extensive modifications in the service delivery system for health care (Brown, et al., 1991). In so doing, collaboration is a requirement and a method for humanizing the system. "Collaboration is about how to do it together....It improves the outcomes for children with special health care needs and their families. It facilitates effective and satisfying relationships....Collaboration is a way of thinking and relating, a philosophy, a paradigm shift, an attitude change. It requires a set of behaviors, beliefs, attitudes, and values. The result is a sense of shared ownership, shared responsibility, shared success." (Bishop, 1993, pp. 11-12). When families and professionals work together collaboratively, professionals no longer do something to families, but rather are engaged as partners (Bishop, 1993). This level of parent participation will require professionals to think carefully about their relationships with families.

Parents and professionals can work together in the development of system changes that take into account the needs of newborns and their families. Within the NICU itself, important clinical practice changes ought to be made. For example, the formal re-evaluation of the infant's status soon after admission can help to avoid routine but unnecessary acute care: Policies designating infants who weigh less than 900 grams (two pounds) at birth as experimental subjects should provide them with the same protection afforded other classes of patients. Thus the staff can better educate parents about newborn intensive care and better integrate them into the process of deciding the course of medical treatment.

At the hospital level, hospital review committees are recommended for their potential role in educating personnel and standardizing policy concerning the treatment of newborns and relations with their families. Medical training programs that take a long view of maternal child health are essential: There needs to be integration of obstetrical, neonatal, and follow-up care of infant patients with education for providers as well as families. The hospital administrators should encourage research that decreases the uncertainty now surrounding the treatment of high-risk newborns. Regarding government policy, any regulation pertaining to the medical treatment of newborns must acknowledge their vulnerability to overtreatment as well as to neglect. Regulations to prevent harm to human subjects from the unknown risks of experiments should apply to newborns no less than to other patients. The understanding of this fact on the federal level will make it possible for physicians to make humane decisions in the delivery room as well as in the NICU (Guillemin & Holmstrom, 1986).

Conclusion

The NICU experience is a complex one in which strong emotions are evoked from families who must depend on professionals who were strangers prior to the infant's admission. The relationship that professionals develop with the parents on behalf of their child is built upon trust. It requires time, information, honesty, and compassion. All that is done for families as they experience these crises ultimately impacts their relationship with their child and their functionality as a family. In the end, the goal is the best interest of the patient, and the patient lives within a family. The goal is not just survival; it is the infant's well-being and quality of life which matter. For every family there should be someone who asks, "Is there anything we can do?" and then does it.

References

Allen, M. C., Donahue, P. K., & Dusman, A. E. (1993). The limit of viability—Neonatal outcome of infants born at 22 to 25 weeks gestation. The New England Journal of Medicine, 329, 1597-1601.

Bass, L. S. (1991). What do parents need when their infant is a patient in the NICU? Neonatal Network, 10(4), 25-33.

Bishop, K. K. (1993). Family/Professional collaboration for children with special health needs and their families. Burlington, Vermont: University of Vermont.

Brown, W, Pearl, L. F, & Carrasco, N. (Winter 1991). Evolving models of family-centered services in neonatal intensive care. Children's Health Care, 20(1), 50-55.

Ensher, G. L., & Clark, D. A. (1986) Newborns at risk: Medical care and pscychoeducational intervention. Rockville, Maryland: Aspen.

Guillemin, J. H., & Holmstrom, L. L. (1986). Mixed blessings: Intensive care for newborns. New York: Oxford University Press.

Hack, M. (1993). Outcomes of extremely immature infants - A perinatal dilemma. New England Journal of Medicine, 329, 1649-1650.

Harrison, H. (1983). The premature baby book. New York: St. Martin's Press.

Harrison, H. (1993). The principles for family-centered neonatal care. Pediatrics, 92, 643-650.

Kenner, C. (1990). Caring for the NICU parent. Journal of Perinatal and Neonatal Nursing, 4(3), 78-87.

McNeil, D. (1992). Uncertainty waiting, and possibilities: Experiences of becoming a mother with an infant in the NICU. Neonatal Network, 11(7), 78.

Pinch, W. J., & Spielman, M. L. (1993). Parental perceptions of ethical issues post-NICU discharge. Western Journal of Nursing Research, 15, 422-440.

Rubin, R. (1975). Maternal tasks in pregnancy. Maternal Child Nursing Journal, 4, 143-153.

Shelton, T. L., Jeppson, E. S., & Johnson, B. H. (1987). Family-centered care for children with special health care needs. Washington, D. C.: Association for the Care of Children's Health.

Stark, J., & Thape, J. (1993). Decision making in neonatal intensive care: A collaboration of parents, physicians, and nurses. Clinical Issues in Perinatal and Women's Health Nursing, 4, 589-595.