Abstract The hospitalization of a child is one of the most traumatic episodes of parenthood. The fear, frustration, anger, and loss of control can be overwhelming to the parents of the critically ill child. Acute care hospitalizations such as those that occur in the neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs) are especially distressing to every member of the family. Unfortunately, families subjected to both NICU and PICU admissions experience two distinctive cultures with very different philosophies and goals. In spite of the best intentions of health care providers, the obvious cultural differences between the NICU and PICU potentially aggravate the stress suffered by families. Unfortunately, most NICU and PICU staff members are unfamiliar with the contrasting cultures. Utilizing specific examples from Phoenix area facilities, the purpose of this article is to describe the many factors that shape and influence the NICU and PICU experience for families. n 2005 Elsevier Inc. All rights reserved.
From the Neonatology Associates Limited Phoenix Children’s Hospital, Phoenix, AZ, and Banner Healthcare, Neonatal Intensive Care Unit, Mesa, AZ. Address reprint requests to Roy Evans, MS, RN, NNP, 300 West Clarendon #375, Phoenix, AZ 85013. n 2005 Elsevier Inc. All rights reserved. 1527-3369/05/0504-0113$30.00/0 doi:10.1053/j.nainr.2005.08.005
Culture Clash: Transitioning from the Neonatal Intensive Care Unit to the Pediatric Intensive Care Unit By Roy Evans, MS, RN, NNP, and Beth Madsen, MS, RN, NNP
amilies having infants within the hospital setting may experience three levels of acuity. Level I care is provided to the normal newborn and may be found in any hospital providing maternity services. A level II facility provides an intermediate level of care that may include supplemental oxygen therapy, intravenous fluids, and tube feedings for the sick or convalescing neonate. The level III facility provides specialized acute care for the neonate that may include ventilation, surgery, and the highest level of nursing and medical care. The conventional neonatal intensive care unit (NICU) provides both level II and level III services for anomalous, sick, and premature newborns. Unfortunately, the NICU experience affects many families within the United States. Annually, there are approximately 400 000 NICU admissions recorded within the United States.1 Approximately 1 out of every 12 newborns requires some level of NICU services within the United States.2 The incidence of NICU admissions may rise to as high as 1 out of every 8 deliveries in facilities providing specialized perinatal and neonatal services.3 Level II, level III, and transported admissions to one Phoenix NICU totaled more than 2000 infants in 2002.4 Newborn deliveries at the same Phoenix Medical Center totaled almost 7000 for the same period.5 The parents and families of children requiring NICU admissions usually have limited time to bond with their child before admission. Infants may be admitted to the NICU as a direct admission from the delivery room, as a transfer from the newborn nursery, as a transport from another facility, or in rare circumstances via the emergency room with deliveries outside the hospital setting. Utilizing a 2-year review of the admission patterns at a large level III facility in the greater Phoenix metropolitan area, it was noted that no infants admitted to the NICU from a non-hospital setting were more than 24 hours of
Newborn and Infant Nursing Reviews, Vol 5, No 4 (December), 2005: pp. 188 – 193
age. In addition, more than 95% of the NICU admissions were directly from the delivery room or the newborn nursery. Unfortunately, almost 5% of NICU admissions within the level III facility were transports from other facilities within a 500-mile radius. Unfortunately, most families experiencing the NICU culture face diagnosis with potential long-term complications. Congenital anomalies and prematurity are responsible for the overwhelming majority of NICU admissions and neonatal deaths. Congenital anomalies affect 1 out of every 28 live births within the United States.2 Affecting 1 out of every 115 births, the most prevalent birth defects noted in the United States involve the heart and circulation. Approximately 1 out of every 8 births is considered premature, and every day, 212 infants are born very premature at less than 32 weeks of gestation. In 2000, a total of 467 201 infants were born premature in the Unites States.3 Infants admitted to the NICU represent families from every social, economic, and demographic group. Accounting for nearly 60% of all births in the United States, whites make up most infants having severe prematurity and congenital defects. On the other hand, blacks and Hispanics have a much higher rate of prematurity.2 The United States Department of Health and Human Services6 reports that socioeconomic factors such as poverty and limited access to health care significantly affect health indicators such as prematurity and low birth weight. Unfortunately, more than 18% of women ages 15 to 44 lack health insurance and approximately 1 out of every 4 pregnant women fails to receive adequate prenatal care. In addition, controversial habits such as smoking, alcohol, and drug abuse have been associated with a higher incidence of premature birth and low birth weight.2 One of the most unique aspects of the NICU experience for families is the extensive length of stay within an acute care setting. Utilizing Phoenix as an example, infants admitted to the NICU in 2001 required 2 to 140 days of NICU care before transfer or discharge. In addition, many infants are transferred to other facilities before discharge home. The expected length of stay in the NICU is significantly affected by the gestational age of the infant. In Phoenix, the overwhelming majority of premature infants are discharged between 34 and 38 weeks postconceptional age. In addition, more than 90% of premature infants were discharged before the estimated date of confinement. Families experiencing long-term hospitalizations are not uncommon in the NICU environment. Currently in the Phoenix metropolitan area, infants as much as 17 weeks premature have survived to discharge. The smallest and sickest premature infants may require several months of intense level III care before the discharge home or transfer
to a level II facility. A comprehensive study in Rhode Island noted the average length of stay for an infant born at less than 1000 grams at 63 days.7 The Arizona Department of Health and Human Services6 reports that the average length of time billed for just the most acute level of neonatal care is 29 days, which does not include the time spent convalescing in the level II setting. Families within the NICU experience a positively unique culture for an acute care setting. The level of acuity and inability of the neonate to provide self-care limits the nursing staffing ratios. Neonatal intensive care unit nurses are usually responsible for 1 or 2 acutely ill or 3 to 4 convalescing infants. The extended stay within the NICU promotes the concept of primary nursing to promote familiarity with the patient and family. Supporting family centered care, visitation policies within the NICU usually promote unlimited 24-hour access for parents and designated family members. In addition, extended family members and friends are encouraged to visit with parental supervision. The NICU environment is also extraordinarily unique for an inpatient setting. In this setting, privacy for the patient and family is severely limited and most NICU patients share a room with several other families. The current recommendations for NICU architecture request 150 square feet of space per patient8 and many older units provide only 60 to 80 square feet of space per patient. The unique environmental aspects of the NICU may influence the family’s perception of nursing care. In certain areas such as Phoenix, literally dozens of families share one large room. The large number of infants allows for multiple assignments within the same room. As a rule, most NICU units within the Phoenix area require at least one staff member to remain in every utilized patient care area to ensure constant supervision. Neonatal intensive care unit families are encouraged to actively participate in policing their infant’s immediate environment to promote appropriate development. Developmental care of the infant is one of the strongest influences on the NICU environment and culture. Sick and premature infants lack the neurological ability to habituate to the constant stimuli associated with the NICU. Appropriate developmental care strives to limit the amount of obnoxious stimuli such as noise, bright lights, and tactile stimulation. For example, reducing light and noise with covered and double-walled isolettes are commonplace in the Phoenix area NICUs. The hospital experience of the NICU patient and family is directly associated with the admitting diagnosis and subsequent prognosis. Infants with significant congenital anomalies, severe prematurity, and infection are at risk for death and long-term complications. The gestational age of the infant significantly affects all aspects of patient care
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and interaction. Therefore, patient goals and expectations are directly related to the current developmental stage and diagnosis of the neonate. In addition to a lengthy hospitalization, parents and caregivers of the severely premature infant are subjected to potentially devastating outcomes. Premature infants require extensive respiratory support and undergo lengthy bouts of feeding intolerance. Understanding a greater level of prematurity increases the risks for complications, the family of the severely premature infant faces many challenges. Common complications of prematurity such as necrotizing enterocolitis can be life threatening and significant retinopathy of prematurity can cause blindness. For example, infants born at 24 weeks gestation have a 56% chance for dying before discharge. In addition, survivors have a 20% chance of developing an abnormal brain scan, a 17% chance of developing vision problems, and an 80% chance of requiring special education services.9 The parental experience of infants with congenital anomalies in the NICU depends on the actual defect in question. Many defects such as cleft lip and ambiguous genitalia are non–life threatening but produce drastic changes in appearance that require extensive corrective surgery to repair. By contrast, many life-threatening defects such as hypoplastic left heart and diaphragmatic hernia produce a normal-appearing infant. In addition, the NICU is the usual setting for which a great number of parents are initially exposed to information regarding lifealtering anomalies. The traditional patient goals associated with the NICU focus on promoting normal development for the postconceptual age. The normally developing infant is required to master the ability to coordinate suck, swallow, and breathe during feedings before discharge. In addition, several physiological milestones such as thermoregulation, appropriate weight gain, and adequate digestion must be met before discharge. The parents and families of the NICU patient are subjected to a variety of stressful variables. The extended hospitalization associated with the NICU admission wreaks havoc on the normal family unit. Most infants admitted to the NICU are immediately separated from the mother after birth. The mother and father are delegated to a visitor role within the NICU and the normal interaction between parent and child is interrupted. Extended separation from the infant may promote ineffective bonding between the infant and the parents.10 The hospitalization and subsequent prognosis may also provide overwhelming stress on the remaining family unit. The sick infant may become the overwhelming focus of one or both parents, thus creating stress and friction between every member of the family.11 Unfortunately, the
stress associated with the NICU has been implicated for preceding parental separation and divorce.12 In summary, parents of patients within the NICU environment are subjected to an extraordinary level of anxiety and stress. The normal elation experienced with the birth of a child is complicated with a significant fear of death or morbid outcome. Families of the characteristic NICU patient are at risk for ineffective infant bonding and many families and relationships are devastated by the experience. The typical NICU patient spends weeks and even months within the same unit. Parents in the NICU are exposed to primary nursing and many develop friendships with their child’s caregivers. Parents in the NICU experience unlimited access to their children. Parents in the NICU are accustomed to small patient-to-nurse ratios and the constant attention attributed to NICU patients. Unfortunately, families of children requiring NICU care are at a greater risk for experiencing future hospitalizations than the general public. Certain congenital anomalies of the heart, hydrocephalus, and most neural tube defects require multiple surgeries and pediatric intensive care unit (PICU) readmissions.13 In addition, more than 6% of very low-birth-weight infants discharged from the NICU are readmitted within the first year of life specifically for complications from the respiratory syncytial virus.14 In 2003, more than 10 000 children were admitted to one of three large PICUs within the greater Phoenix area. Unfortunately, specific statistics focusing on any previous NICU experience by these children were not available. However, a comprehensive evaluation of the outcomes experienced by former NICU graduates in Rhode Island reported a 30% readmission rate to the PICU or general pediatric floor.3 The families of preterm and low-birth-weight infants have the greatest risk of hospital readmission in the first few years of life. Infants born at less than 28 weeks of gestation are 8 times more likely to require a hospital readmission compared with a term infant in the first 5 years of life.15 The rate of readmission for infants with birth weights less than 1500 grams or less than 33 weeks of gestation ranged from 42% to 72% over the first 2 years of life.16,17 In addition, the greatest risks for readmission included birth weights less than 750 grams, gestational age less than 28 weeks, and chronic lung disease.16 –18 In contrast to the NICU experience, patients and families admitted to the PICU are exposed to a totally different culture. The PICU serves pediatric patients requiring acute and specialized nursing and medical care. Most former NICU families enter the PICU environment owning extensive hospital experience. The previous experiences and expectations of former NICU families may contribute to an increased level of stress and frustration within the PICU setting.
Former NICU families may be exposed to the PICU at anytime during their childhood and into early adulthood. In fact, families may be exposed to both the NICU and PICU cultures before the initial discharge home. Children require PICU services for a variety of conditions such as cardiac and respiratory failure requiring ventilation. One of the most prominent PICU services includes postoperative care after cardiac surgery. For example, NICU patients in Phoenix requiring open heart surgery temporarily recover in the PICU for several days before being transferred back to the NICU. In addition, NICU infants requiring ventilation past 4 to 6 months of age may be transferred directly to the PICU to receive age-appropriate developmental and specialty care. Many former NICU patients have congenital anomalies or chronic disease processes, which require repeated readmissions during childhood. In many cases, the initial hospitalization for these bfrequent fliersQ occurred in the NICU setting. Realizing that premature infants experience the longest duration of hospitalization in the NICU setting, it must also be noted that premature infants have the highest incidence for readmission. In many cases, the parents of very low-birth-weight and severely premature infants possess the greatest amount of experience in the acute care setting. Unfortunately, the previous encounters and expectations of this unique subgroup of NICU families may potentially negatively affect the PICU experience. For example, families in the PICU environment rarely experience the long-term relationships with staff so common in the NICU. Rapid patient turnover within the PICU significantly reduces the opportunity to formulate bonding between families and staff. The PICUs explored in the Phoenix area range from 12 to 50 beds that accommodate 700 to 9000 admissions a year. Although certain illnesses and surgically related admissions require extensive hospitalization, the average length of stay for a PICU admission is 3 to 4 days (personal communication from Natalie Nevin, April 12, 2004). In fact, most NICU readmissions to the PICU are admitted for short-term acute episodes of respiratory distress secondary to reactive airway disease, pneumonia, or bronchiolitis due to respiratory syncytial virus, (personal communication from Kathy Robbins, April 15, 2004).19 In addition, many former NICU patients require short-term PICU stays to recover from surgical procedures such as staged congenital cardiac repairs and neurological shunt revisions. Former NICU families utilizing the PICU may be exposed to a totally different physical environment. Most PICUs within the greater Phoenix area offer private rooms to patients and families. Many units are circular in design, with one side of the patient’s room walled in glass and facing a central nurse’s station. The lack of constant
physical supervision in the PICU may be distressing to families accustomed to the NICU system. In addition to being exposed to a new physical environment in the PICU, former NICU families are exposed to an entirely new patient population. Patients in the PICU range from infants a few days old to young adults in their early twenties. In contrast to the relatively uniform diagnoses of congenital anomalies, prematurity, and infection in the NICU, patients in the PICU have a variety of diseases and traumatic events. The NICU environment is focused on the needs and problems of one small sample of the population whereas the PICU must accommodate the needs of several dissimilar groups. The hospital course experienced by former NICU patients within the PICU is often unlike their former hospitalization. Patients within the NICU system usually remain within the nursery setting under the care of NICU personnel for their entire course. On the other hand, patients requiring PICU services are usually transferred to the general pediatrics floor before discharge. The physicians, nurses, and ancillary staff will usually change in the general pediatric areas, thus potentially creating additional stress for the families. The ambient environment within the PICU can be very different from the NICU. The NICU is primarily focused on providing care to newborn infants. With the implementation of developmentally supportive care, the ambient environment in the NICU remains relatively constant with minimal lighting and a focus to limit conversation. The PICU attempts to meet the needs of much older children by providing both day and night patterns with changing lighting patterns and promoting normal communication between patients, families, and staff. One former NICU parent noted the PICU seemed chaotic and noisy compared with the bquiet desperationQ of the NICU. Former Phoenix NICU parents within the PICU environment are exposed to different policies and attitudes toward visitation. The NICU remains open to parents except during shift change to ensure patient confidentiality during report. Parents in the NICU are just beginning to bond with their new family member and the NICU staff may take a paternalistic role toward parents. On the other hand, the PICU rarely closes to parents and in fact promotes constant parental participation. In the Phoenix area, parents with children in the PICU are provided accommodations within the patient’s room for meals and sleep during their child’s hospitalization. Fortunately, staffing within the PICU and NICU remain similar with only 2 or 3 patients per nurse in normal circumstances. On the other hand, families may experience a shock when moved to the general pediatric floor. Staffing in general pediatrics may consist of 6 to 8 patients per nurse. The increased patient load places indirect
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pressure on the families to remain within the hospital to provide constant care for their child. The father of a former NICU patient noted that he felt obligated to remain at his child’s side just to ensure that adequate care for his son. On the other hand, he felt the NICU nurses had more time to care for his child and to meet the needs of the parents and families. The end goal for both NICU and PICU patients remain similar with a focus on achieving the highest level of wellbeing. The NICU focuses on discharging the infant directly home under the parent’s care. Meeting the requirements for discharge in the NICU includes maintaining thermoregulation, respiratory function, and nutritional intake. On the other hand, the PICU places great attention on meeting the requirements for transfer to lower level of acuity. Transfer to the general pediatric floor is appropriate when the patient no longer requires intensive therapies such as ventilation and inotropes. Discharges directly from the PICU are uncommon and every discharge from a pediatric unit remains specific to each patient. General criteria for discharge include vital sign assessments less than every 4 hours and no life-threatening apnea events. These patients may be discharged on home monitoring equipment and can be adequately cared for in the home environment.19 Social issues and family dynamics surrounding the admission of a child to NICU or PICU differ greatly. The NICU admission may or may not have been anticipated, thus allowing for the family some preparation. However, families within the NICU are usually anticipating a pending birth and both mother and infant are expected to require basic hospital services. In many circumstances, the NICU family must deal with an acute hospitalization of a child and the normal or acute recovery of the mother. Parents within the PICU are usually responding to an acute medical crisis or the daunting uncertainty accompanying surgery.20
Table 1. Parental Stressors PSS: NICU Parental role alteration Infant behavior and appearance Sights and sounds Staff relationships
Data from Reference 19.
PSS: PICU Parent role alteration Child’s behaviors and emotions Procedures done to child Child’s appearance Staff communication Sights and sounds Behaviors of the professional staff
Table 2. Helpful Staff Behaviors NICU Being able to phone the unit at any time Having equipment explained Honest answers to questions Being kept informed of the baby’s progress
PICU Being kept informed about the child’s progress Ability to phone the unit at any time Knowing the names of the staff Being given complete explanations concerning their child
Data from Reference 19.
Potential familiar stressors associated with the hospitalization of a child are numerous. Seideman et al20 identified parent perceptions of the hospital experience that cause the most stress within the NICU and PICU. Utilizing the Parental Stressor Scale: Pediatric ICU (PSS: PICU) and the Parental Stressor Scale: NICU (PSS: NICU), Seideman et al20 identified a variety of parental stresses during acute care hospitalization of a child (see Table 1). Of interest is that while parental alteration causes the most stress, the NICU parents felt helpless about being separated from their infant whereas the PICU parents were most concerned about not knowing how to help their child. In addition to listing those issues most responsible for stress, Seideman et al20 also identified the most helpful staff behaviors and stress reducers (see Table 2). Both NICU and PICU parents gave immense importance to honest and adequate communication with the health care providers responsible for their children. Communication issues between parents and PICU staff have been previously explored. Holmes21 noted the attitude of one parent who also happens to be a pediatric nurse, bit is not about secrets, but partnership, a two-way communication between parents and professionals.Q Unfortunately, the level of communication within the hospital setting has been found less than desirable by many parents.22 Studdart et al23 examined staff perceptions regarding parent conflicts within the hospital environment. Studdart et al23 recognized that nearly half of all families elicit a staff-family conflict regarding patient care. The most commonly identified sources of staff-family conflict were poor communication, unavailability of the parents, and disagreements regarding the plan of care. In an attempt to alleviate potential stress, the NICUs in Phoenix arrange tours for potential families prior the birth of a high-risk infant. Many disease processes and congenital defects that require repetitive hospitalizations are identified in the NICU. Realizing the high potential for
stress and the high regard parents have for honest effective communication, proactive health care professionals may help alleviate parental stress by introducing high-risk NICU families to the PICU before discharge. Families experiencing both the NICU and PICU encounter an enormous amount of stress. Former NICU families experiencing the PICU must endure the fear associated with hospitalization while coping with the obvious cultural differences between units. Recognizing the obvious differences between units, health care providers in both areas may assist in alleviating potential parental stress.
References 1. Clinician Support Technology: CST baby care link. Retrieved April 3, 2004 from www.babycarelink.com/publicsite/index.asp, 2003 2. March of Dimes: National Perinatal Statistics. Retrieved March 1, 2004 from www.marchofdimes.com/aboutus/680_4086.asp, 2004 3. McQuade B: Utilization of hospital and outpatient services in rite care: State Fiscal Year 1996-2000. Rhode Island Department of Health and Human Services. Retrieved April 6, 2004 from www.dhs.state.ri.us/ dhs/reports/ristats/20vol/201/20issue/201.pdf, 2001 4. Phoenix Children’s Hospital: Programs: newborn intensive care. Retrieved April 5, 2004 from www.phxchildrens.com/about/programs/ neonatal_intensive_care.html, 2004 5. Banner Health: Banner good Samaritan opens new maternity center. Retrieved April 5, 2004 from www.bannerhealth.com/channels/ media/press+releases/_new+maternity+center.asp, 2004 6. Arizona Department of Health and Human Services: Arizona Health Status and Vital Statistics: 2002. Retrieved March 21, 2004 from www.hs.state.az.us/plan/report/ahs/ahs2002/toc02.htm, 2003 7 Howard J: Hospital Inpatient Services. RIte Stats: Analysis of Rite Care Utilization Services. 2:1 – 6, 2002 8. White R, Browne J, Cicco R, et al: Recommended Standards for NICU Design. Report of the Fifth Consensus Conference on Newborn ICU Design. Retrieved from www.nd.edu/~kkolberg/DesignStandards. htm, 2004
9. Koh G: Outcomes for premature infants by gestation. Retrieved April 1, 2004 from www.geocities.com/Heartland/Acres/2077/table.html, 1997 10. Spencer C, Edwards S: Neonatal intensive care unit environment: a review from the parents’ perspective. JNN, J Neonatal Nurs 7:127 – 131, 2001 11. Stimpson J: When life begins in the NICU: understanding the effects of prematurity on the child and the family. Retrieved April 1, 2004 from http://www.preemie-l.org/2001program.html, 2001 12. Maroney D: For better or worse: how the birth of a premature infant can affect your marriage. Premature-Infant.Com. Retrieved March 20, 2004 from www.premature-infant.com/Marriageeffect.htm, 1997 13. Blackburn S: Assessment and management of neurological function, in Kenner C, Lott J, Flandermeyer A (eds): Comprehensive neonatal nursing: a physiologic perspective. Philadelphia, Saunders, 1998, pp 564 – 607 14. Nachman S, Navaie-Waliser M, Quereshi M: Rehospitalization with respiratory syncytial virus after neonatal intensive care unit discharge: a 3-year follow-up. Pediatrics 100:e8 [Retrieved March 4, 2004 from www.pediatrics.aappublications.org/cgi/content/abstract/100/ 6/e8], 1997 15. Petrou S, Meyta Z, Hockley C, et al: The impact of preterm birth on hospital inpatient admissions and cost during the first 5 years of life. Pediatrics 112:1290 – 1297, 2003 16. Chien Y, Tsao P, Chou H, et al: Rehospitalization of extremelylow-birth-weight infants in the first 2 years of life. Early Hum Dev 66:33 – 40, 2002 17. Elder D, Hagan R, Evans S, et al: Hospital admissions in the first year of life in very preterm infants. J Paediatr Child Health 35: 145 – 150, 1999 18. Yuksel B, Greenough A: Birth weight and hospital readmission of infants born prematurely. Arch Pediatr Adolesc Med 148:384 – 388, 1994 19. St. Joseph’s Hospital. (2003). Hospital plan for pediatric intensive care unit 20. Seideman R, Watson M, Corff K, et al: Parent stress and coping in NICU and PICU. J Pediatr Nurs 12:169 – 177, 1997 21. Holmes A: An emotional roller coaster: a parent’s perspective of ICU. Paediatr Nurs 16:40 – 43, 2004 22. Co J, Ferris T, Marino B, et al: Are hospital characteristics associated with parental views of pediatric inpatient care quality? Pediatrics 111:308 – 314, 2003 23. Studdart D, Burns J, Mello M, et al: Nature of conflict in the care of pediatric intensive care patients with prolonged stay. Pediatrics 112:553 – 558, 2003