© Springer International Publishing AG 2018
Maria Muzik and Katherine Lisa Rosenblum (eds.)Motherhood in the Face of TraumaIntegrating Psychiatry and Primary Carehttps://doi.org/10.1007/978-3-319-65724-0_1515. Maternal Experience of Neonatal Intensive Care Unit Hospitalization: Trauma Exposure and Psychosocial Responses
(1)
Department of Psychology, Drexel University, 3141 Chestnut Street, Stratton Hall 288, Philadelphia, PA 19104, USA
(2)
Division of Neonatology, The Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
(3)
Department of Psychiatry, Perelman School of Medicine at the University of Pennsylvania, 34th and Civic Center Blvd. 2nd Floor, Philadelphia, PA 19104, USA
Abstract
For mothers in the postpartum period, admission of their newborn to a neonatal intensive care unit (NICU) is often an unanticipated experience that can be shocking and traumatic, and can elevate maternal risk for psychiatric symptoms, including posttraumatic stress. In this chapter, the NICU experience, psychosocial implications, mental health consequences, and screening tools that have been used to identify maternal psychiatric symptoms in this setting will be reviewed. Psychosocial interventions and programs addressing the stress and psychological reactions of mothers with an infant in a NICU will be introduced, as will recently developed interdisciplinary recommendations for the support of NICU families and a nurse training program to promote optimal communication between NICU nurses and parents. The chapter concludes with future clinical and research directions to continue improving maternal adjustment and mental health during a child’s NICU hospitalization.
15.1 Introduction
Women can experience a variety of adverse reproductive-related events surrounding the perinatal period. In some cases, the experience of achieving and maintaining pregnancy is largely uneventful, while others may confront significant challenges such as infertility, preterm delivery, and perinatal loss. For infants who are born preterm, along with those born with other serious medical conditions, admission to a neonatal intensive care unit (NICU) may be necessary. For mothers in the postpartum period, hospitalization of their newborn infant is extremely stressful and often unanticipated. It can be a shocking and traumatic experience that includes exposure to a highly medicalized environment, laden with uncertainty, challenges to parenting, and intense emotions. For these reasons, the NICU admission and subsequent hospitalization elevate the risk for mothers to develop and/or exhibit psychiatric symptoms—including posttraumatic stress disorder. Furthermore, symptomatology does not necessarily subside following discharge, as parents must take on additional caregiving responsibilities during the transition home. While both parents are undeniably affected by the NICU experience, research has shown that mothers and fathers respond in different ways to their child’s hospitalization (Fegran et al. 2008). Postpartum mothers, in particular, may be more likely to experience acute psychological distress and higher levels of stress compared to fathers (Matricardi et al. 2013; Carter et al. 2007). This chapter will focus specifically on maternal experiences but will note findings relevant to both parents as applicable.
The NICU experience, psychosocial implications, mental health consequences, screening, and interventions will be reviewed in this chapter. Specifically, rates and reasons for NICU admission will be introduced, and the maternal experience will be described. This will include rates of psychiatric conditions and risk factors for maternal distress, such as the physical environment of the NICU and the limited opportunity for bonding and attachment. Screening tools that have been used in the NICU setting to identify psychiatric symptoms will be reviewed. Psychosocial interventions and programs that have been developed to address the stress and psychological reactions of mothers with an infant in the NICU will be discussed. Some recent innovations such as the newly developed interdisciplinary recommendations for the psychosocial support of NICU families (Hall and Hynan 2015), an educational program for NICU parents, and a nurse training to promote optimal communication between NICU nursing staff and mothers in the face of NICU hospitalization will also be introduced. The chapter concludes with future clinical and research directions to continue improving maternal adjustment and mental health during a child’s NICU hospitalization.
15.2 NICU Admission
It is estimated that 10–15% of infants born annually in the United States (USA) are admitted to a NICU shortly after birth (March of Dimes Perinatal Data Center 2011; Osterman et al. 2011), with NICU admission rates on the rise since 2007 (Harrison and Goodman 2015). Globally, it is estimated that 9.6% of all births are preterm, suggesting similar rates of NICU admission in international settings as compared to the USA (Beck et al. 2010). NICUs are specialized intensive care units staffed and equipped to provide advanced medical care for congenitally ill, low birth weight, or premature newborn infants. The most common neonatal condition resulting in NICU admission is preterm birth, which is defined as delivery occurring at less than 37 weeks completed gestation. Preterm birth is problematic in that it confers risk for other medical conditions stemming from inadequate organ system development. Other conditions requiring NICU admission include respiratory distress syndrome, newborn septicemia, neonatal hypoglycemia, transient tachypnea, or other medical or surgical conditions (Committee on Fetus and Newborn 2012; March of Dimes Perinatal Data Center 2011).
In 2012, the most recent year for which epidemiological data are available, there were 77.9 NICU admissions per 1000 live births in the USA. This is a 23% increase from 2007. Maternal and newborn characteristics likely to increase chance for NICU admission are gestational age at delivery, plurality, parity, maternal age, and racial/ethnic background (Harrison and Goodman 2015).
NICU admission is more frequent among infants whose mothers are Black or African-American or who are of advanced maternal age (i.e., age 40 and over; Osterman et al. 2011). Based on reports from 27 states in the USA, Black infants are approximately 40% more likely than White infants and 60% more likely than Hispanic infants to be admitted to a NICU (Osterman et al. 2011). It is estimated that 85% of NICU admissions are singleton births, while 15% are multiples (March of Dimes Perinatal Data Center 2011).
15.3 Description of NICUs
NICUs vary in terms of their provision of neonatal specialty care services, from basic neonatal resuscitation to more intensive treatment capabilities, such as cardiopulmonary bypass and extracorporeal membrane oxygenation. The average length of stay in a NICU admission is approximately 2 weeks. In one study, the length of stay ranged from as little as 5 days to as many as 6 weeks (March of Dimes Perinatal Data Center 2011), while other studies with lower birth weight infants have reported NICU admissions lasting upward of 141 days (Stoll et al. 2010). The length of stay corresponds to the health status of the infant and completed weeks of gestation at delivery, with infants born at less than 32 weeks experiencing the most serious complications and requiring more long-term care.
While advances in medical care and technology have aided in the survival of many infants admitted to the NICU, a proportion of infants do not survive. In the USA, it is estimated that the neonatal mortality rate in 2015, defined as death occurring after birth but before 28 days of age, was 4 deaths per 1000 births (United Nations Interagency Group for Child Mortality Estimation 2016). Globally, neonatal mortality rates vary considerably among different countries, ranging from 0.2% to 29% (Chow et al. 2015). Neonatal death rates among infants in the NICU remain difficult to estimate, as they vary widely across institutions and depend upon a number of factors including gestational age at birth, clinical comorbidities, and prior obstetric issues. Many research studies focus on neonatal death in general, not confined specifically to those infants in the NICU; however, it is likely that these groups share significant overlap. Among the research that has been conducted, several studies assessing neonatal death have found a range of survival rates (Lee et al. 2010; Schuit et al. 2012; Stoll et al. 2010). In one study of very low birth weight infants (VLBW, defined as a birth weight of 401–1500 g), the average survival rate was 72% among infants born at 22–28 weeks completed gestation, with the rate of survival to discharge increasing proportionally to the gestational age at delivery (Stoll et al. 2010). Other studies, one with a US sample and another with a sample from the Netherlands, found survival rates ranging from 66 to 83% (Lee et al. 2010; Schuit et al. 2012).
15.4 Maternal Trauma Exposure and Other Psychosocial Stressors in the NICU
With approximately one in ten infants born each year treated in a NICU, parenting in this setting has become a relatively common experience, but one that is laden with tremendous challenges and exposure to environmental circumstances that can be perceived as traumatic. First, the physical and psychosocial aspects of the NICU environment itself can serve as a traumatic stressor for mothers. As Miles et al. (1993) have highlighted, the “sights and sounds” associated with the NICU can be distressing, as mothers are confronted with sophisticated medical equipment and various monitoring machines that periodically emit alarms to alert nursing staff to a medical situation requiring their attention. Mothers may not understand what the machines do or what the various alarms might mean, which can serve as a traumatic stressor as mothers fear what the medical equipment, digital readings, and sounds may signify. Mothers may also witness infants in nearby bed spaces or rooms in distress, needing resuscitation or emergency care. This can be traumatic and frightening as they fear for their own infants’ life and worry about the medical condition of others on the unit. In these ways, the NICU environment may be perceived as highly stressful by mothers and could contribute to their perception of the NICU experience as traumatic.
Next, mothers encounter numerous parenting-related challenges in the NICU, further complicating their adjustment and potentially contributing to the traumatic nature of their NICU experience. Mothers with a child in the NICU must navigate multiple medical systems while simultaneously managing their existing familial and occupational responsibilities and confronting the emotional challenges germane to the experience of having an acutely ill child. Mothers must also contend with the postpartum hormonal adjustment and physical recovery of the postnatal phase. The experience of mothering in the NICU deviates from traditional expectations of motherhood, leaving mothers to question their role and their ability to navigate this complicated and emotionally taxing arena. In addition to traumatic childbirth, which confers its own set of risks for posttraumatic stress reactions and impaired maternal functioning (see Beck et al. 2013), mothers in the NICU may have difficulty coping with the loss of anticipated experiences, such as extensive physical contact and intimately sharing their newborn’s first months of life at home (Davis et al. 2003). Mothers may also exhibit feelings of helplessness and lack of knowledge regarding how to interact with their fragile infants in the NICU setting (Melnyk et al. 2000). This leaves many struggling with the transition to motherhood, a process that is not currently well understood (Shin and White-Traut 2007). Alkozei et al. (2014) found that stress related to alterations in the parental role was the most significant source of stress among NICU mothers. This is further compounded by the limited role mothers may play in day-to-day care for their infant, as nursing staff serves as primary caregivers due to the infant’s medical status.
As such, the NICU environment can interfere with bonding and attachment between mother and child. Maternal-infant attachment occurs through a process of physical and emotional interactions between the mother and her child. Having an infant admitted to a NICU after birth can interrupt or alter this relationship due to the early and sometimes lengthy separation and the feelings of powerlessness and exclusion that mothers may perceive. The physical separation (e.g., isolettes), intrusive medical equipment, limitations on holding and feeding, and mother’s lack of regular participation in the child’s care can interfere with attachment and bonding (e.g., Wigert et al. 2006). Furthermore, there may be limitations on breastfeeding because of the infant’s health status and medical condition, which can induce feelings of inadequacy and disappointment for NICU mothers who wish to breastfeed but are not allowed (Niela-Vilen et al. 2016). The commitment and physical demands of maintaining a rigorous breast pumping schedule can interfere with sleep, along with pumping being a constant reminder of her infant’s condition and hospitalization. Together, these can take a significant toll on a mother’s well-being and her perceptions of the NICU experience as traumatic.
Finally, there are specific events that can occur as part of the NICU experience that can turn into traumatic stressors. A small percentage of NICU journeys will end tragically as the babies will die. In cases where withdrawal of life support and/or initiation of palliative care are indicated, parents, with support from staff, must grapple with devastating decisions. Choices regarding whether to limit extraordinary care or withdraw intensive care from their infant are not within the typical realm of parenting. Such a shift in focus to a palliative care plan may require parents to probe their deep religious and ethical beliefs, which can present ethical challenges that contribute to moral distress (Kenner et al. 2015). When an infant dies, sometimes abruptly, parental grief and loss become emotionally overwhelming as parents must now cope with this heartbreaking situation and the various decisions and activities that accompany this event (e.g., creating mementos; informing the infant’s siblings, as well as family and friends; funeral planning; returning home without an infant).
The NICU hospitalization and associated events can also serve as triggers for trauma symptoms that persist long after the NICU experience has ended. In fact, events surrounding prior pregnancies and childbirth that have been perceived as traumatic may constitute pre-existing traumas for subsequent pregnancies and contribute to the development of PTSD (Forray et al. 2009).
Moreover, the parenting stress associated with a NICU hospitalization does not end at discharge. Holditch-Davis et al. (2015) evaluated NICU mothers longitudinally from the infant’s NICU hospitalization to 12 months of age and found that mothers exhibiting extreme distress and high anxiety and depressive symptoms during NICU admission remained at significant risk for psychiatric symptoms 1 year later. Moreover, these mothers also had less positive perceptions of their child (e.g., greater worry, higher perceptions of child vulnerability), which may have an impact on child-rearing practices, child development, and attachment. The potential for increased psychiatric risk post-discharge is compounded by the fact that mothers continue to experience psychosocial stress at home, as they transition from the NICU to a new environment with less support and fewer resources. NICU infants may be discharged home with a complex medical regime, visits with multiple medical specialists, and increased caregiving demands, which can prove stressful for mothers as they adjust. A recent review of studies from various NICUs found that parents, in general, do not feel prepared for discharge (Sneath 2009). The costly medical bills, risk of rehospitalization, worry about developmental delays or long-term effects of medical problems, and impact on the social aspects of family life also contribute to parental stress (e.g., Schappin et al. 2013). For parents of very low birth weight (VLBW) infants, parenting stress remains elevated for the first 18 months and does not become similar to stress reported by parents of full-term infants until the child is 2–3 years of age (Treyvaud et al. 2014).
15.5 Maternal Mental Health Consequences
The experience of parenting an infant in the NICU has been described as an “emotional roller coaster” due to the emotional highs and lows stemming from frequent changes in an infant’s health status. This has been described as “vacillation between hope and hopelessness” (Hummel 2003; Obeidat et al. 2009). Parents of infants in the NICU can experience a broad range of emotions, including sadness, anger, fear, anxiety, guilt, helplessness, and grief (e.g., Davis and Stein 2004). Given the exposure to stressors, the physical environment and psychosocial demands present in the NICU, and the complex factors associated with mothering in the NICU, more significant mental health consequences can occur in the context of a NICU hospitalization. In addition, mothers are more likely to be affected given the already increased risk for postpartum depression and anxiety (O’Hara 2009), including posttraumatic stress (Grekin and O’Hara 2014). Research has documented that this elevated risk in the postpartum period is often exacerbated by the stress of a NICU admission (Beck 2003). Specific maternal sociodemographic factors, such as history of mental health problems, prior experience of trauma (e.g., childhood sexual abuse, history of reproductive trauma), poor social support, and lower socioeconomic status, also contribute to the development of mental health symptoms in the postpartum period (Grekin and O’Hara 2014; O’Hara and Swain 1996). Psychological symptoms common among mothers who have an infant in the NICU include depression, anxiety, acute stress, and posttraumatic stress (e.g., Davis and Stein 2004).
Maternal Depression
Given a woman’s significant risk for mood and anxiety disturbance in the postpartum period and the undeniable link between stressful life events and depressed mood, it follows that the stress associated with a NICU admission may serve as a unique risk factor for depression among postpartum mothers. Rates of postpartum depression have been found to be significantly higher among NICU mothers as compared to the general population, with estimates ranging from 28 to 70% (Beck 2003; Meyer et al. 1995; Miles et al. 2007). In several studies of mothers of infants treated in a NICU, significant depressive symptoms were reported in 30–40% of their respective samples using validated screening measures (Davis et al. 2003; Poehlmann et al. 2009; Yurdakul et al. 2009; Alkozei et al. 2014; Cherry et al. 2016). Shelton et al. (2014) found that 62% of NICU mothers in their sample reported elevated depressive symptoms (i.e., a score of ≥13 on the Edinburgh Postnatal Depression Scale (EPDS)) and that high depressive symptoms were associated with greater stress and less overall well-being. A recent study of postpartum depression in NICU mothers demonstrated elevated rates of depressive symptoms during NICU hospitalization, with 41% of mothers screening above threshold on the EPDS (Bonacquisti and Geller 2016). Taken together, these studies suggest that maternal depression in the postpartum period is of substantial concern for NICU mothers, with depression rates exceeding those documented outside of the NICU context.
Maternal Anxiety
In contrast to the abundance of literature on postpartum depression, relatively little work has been conducted on maternal anxiety in the postpartum period (Ross and McLean 2006; Wenzel et al. 2005; Paul et al. 2013). That the prevalence of anxiety disorders has been reported to exceed that of depression during pregnancy and the early postpartum (Fairbrother et al. 2016) highlights the need for greater attention in this area. Research that exists has demonstrated that rates of postpartum anxiety symptoms are notably elevated in mothers with comorbid depressed mood, medical and negative social life events, perceived stress, and increased duration of hospital stay following delivery (Paul et al. 2013). These factors may be particularly relevant for NICU mothers as a recent study demonstrated that postpartum anxiety symptoms were found to be higher in mothers of VLBW infants when compared to infants born at term, with significant risk factors emerging as low social support and increased stress during birth (Helle et al. 2016). In addition, for some women, postpartum anxiety is heightened when separated from their child (van Bussel et al. 2009). This may manifest as increased concerns for the infant and decreased confidence in coping and parenting capabilities (Reck et al. 2012). These factors point to postpartum anxiety as a specific concern for NICU mothers due to the uncontrollable nature of their situation and the fears and worries they have for their infant’s health, as outlined above. Moreover, a recent study found that mothers who experienced preterm birth or other perinatal complications had the highest levels of postpartum anxiety (Zelkowitz and Papageorgiou 2005). In a sample of NICU mothers, Bonacquisti and Geller (2016) found higher rates of anxiety during NICU hospitalization compared to 2–3 months later, with anxiety positively associated with both depression and stress. Mothers of infants in the NICU have demonstrated high levels of anxiety, with lower social support and lower perceived control being associated with increased anxiety symptoms (Doering et al. 2000; Zelkowitz and Papageorgiou 2005).
Posttraumatic Responses
In addition to depression and anxiety stemming from NICU admission, trauma symptoms and posttraumatic responses are prevalent among NICU mothers. This burgeoning area of research is currently small relative to the body of the literature on postpartum depression; however, recent studies have demonstrated a strong relationship between NICU admission and trauma responses in mothers. In a recent study, 18% of mothers in the NICU were found to have acute stress disorder during their NICU admission, with 30% meeting the criteria for posttraumatic stress disorder 1 month later, a rate that exceeds what is found among mothers of full-term infants (Shaw et al. 2013). In a direct comparison of NICU mothers and mothers of infants in a well-baby nursery, 23% of NICU mothers were found to have acute stress 1 week postpartum compared to 3% of non-NICU mothers (Vanderbilt et al. 2009). Vanderbilt and colleagues also demonstrated that NICU admission increased the risk for maternal posttraumatic stress, even when controlling for depression and history of other traumatic events. Lefkowitz et al. (2010) reported similar rates, with 35% of mothers meeting the criteria for acute stress disorder 3–5 days after NICU hospitalization and 15% meeting PTSD criteria 1 month later.
There is a notable portion of postpartum women who do not meet full diagnostic criteria for PTSD, although exhibiting many of the required symptoms (Alcorn et al. 2010). Current research suggests that this subclinical presentation may confer significant psychosocial morbidity for mothers as symptoms are likely to impact parenting skills, interpersonal relationships, and other aspects of daily functioning. Posttraumatic stress symptoms that do not reach full diagnostic criteria are likely to be conflated with depression and anxiety and thus overlooked or misdiagnosed or treated. It is essential that healthcare providers screen and attend to such symptoms in NICU mothers.
Regarding the type of trauma symptoms experienced by NICU mothers, a small study of 30 mothers showed increased arousal as the most commonly reported symptom, followed by reexperiencing and avoidance (Holditch-Davis et al. 2003). These studies emphasize traumatic stress as a component of the NICU experience, which may persist long after NICU discharge. In particular, posttraumatic responses may emerge or worsen after discharge (Holditch-Davis et al. 2003; Feeley et al. 2011). Trauma symptoms have been shown to be associated with the severity of the infant’s illness, with mothers of more critical infants experiencing elevated traumatic responses (Feeley et al. 2011). PTSD also negatively impacts a NICU mother’s ability to interact appropriately with her infant, suggesting longer-term consequences stemming from traumatic experiences in the NICU environment (Feeley et al. 2011).
Impaired Maternal-Infant Attachment
As noted above, factors associated with NICU hospitalization often result in delayed or disrupted maternal-infant attachment frequently seen in mother-infant dyads in the NICU (Shin and White-Traut 2007). In one study, Feldman et al. (1999) compared maternal-infant attachment in mothers of full-term infants, mothers of healthy preterm infants, and mothers of VLBW infants. Their results suggest that attachment was negatively affected by the duration of mother-infant separation, which was prolonged for mothers of VLBW infants. Feldman and colleagues also found that maternal anxiety and depressive symptoms further disturbed the maternal-infant relationship in their sample. This has been replicated in additional studies such as a recent examination by Tietz et al. (2014), which found that mothers with postpartum anxiety and depressive symptoms reported less bonding than mothers without these symptoms. Further emphasizing the importance of healthy mother-infant relationships, impaired maternal-infant interaction stemming from postpartum mental health conditions has been associated with significant negative neurodevelopmental, socioemotional, and behavioral outcomes for the offspring (e.g., Field 2010; Feldman 2009; Raposa et al. 2014; Shen et al. 2016).
15.6 Screening for Trauma Symptoms in the NICU
In light of the significant stressors associated with infant NICU hospitalization, screening for current PTSD as well as traumatic history and symptomology may be indicated, underscoring the importance of identifying an appropriate screening tool. Appropriate screening could then allow for better targeting of evidence-based treatments aimed at those with the highest risk of developing PTSD. Recent research has evaluated several screening measures with demonstrated clinical utility in the NICU, such as the PC-PTSD (Wenz-Gross et al. 2016), the Perinatal Posttraumatic Stress Disorder Questionnaire (PPQ; Callahan et al. 2006), and the Davidson Trauma Scale (Davidson et al. 1997). Additional research in this area is warranted to improve trauma screening measures in the NICU and determine optimal methods to connect mothers to care for appropriate treatment of posttraumatic responses.
Currently, there is work underway to validate a new risk assessment screener that can improve the way healthcare providers identify and provide for the psychosocial needs of parents who have a child in the NICU or CICU, allow for the proactive administration of appropriate services to parents, and ultimately directly benefit the infant’s long-term growth and development. The Psychosocial Assessment Tool-Neonatal Intensive Care Unit/Cardiac Intensive Care Unit (PAT-NICU/CICU) was recently developed by psychologists from Drexel University (Geller), the Children’s Hospital of Philadelphia (Patterson), University of Kansas Medical Center (Steve Lassen), Nationwide Children’s Hospital (Amy Baughcum), and Children’s Hospital of California (Marni Nagel). Adapted from Kazak’s Psychosocial Assessment Tool (PAT 2.0; Pai et al. 2008) based on the Pediatric Psychosocial Preventative Health Model (Kazak 2006), the PAT-NICU/CICU is a brief parent-report screener of psychosocial risk in families, including items that assess history of fertility issues and prenatal/perinatal loss. This tool matches level of care with level of risk. Once the level of risk is established, staff can guide parents to the appropriate resources either within the hospital or within the community.
Specifically, scores will be used to classify the person into one of three categories: universal, targeted, or clinical range. Those scoring in the lowest-risk universal range are considered to be functioning relatively well under the circumstances and would be expected to progress through the NICU/CICU without incident. For example, in this case at the Children’s Hospital of Philadelphia, universal support typically would include general social work support, language services, occupational therapy, physical therapy, child life therapy, chaplaincy, developmental care rounds, speech and language pathology, and a variety of support groups (e.g., lactation, parent education, crafts, and developmental education) as indicated by the needs of the family. In addition to the services available to the universal group, individuals scoring in the targeted range would receive second-tier screening and triage involving a more targeted diagnostic interview and assessment by social work or psychology, focused supportive counseling by social work, and potentially music therapy. Finally, a person receiving a score in the highest-risk clinical range would be offered those programs in the universal and targeted level in addition to psychological and psychiatric interventions and psychotherapeutic support with a potential focus on individual coping, brief family therapy, parent-infant dyadic therapy, grief and bereavement, psychopharmacologic support, and community inpatient or outpatient resources. After validation studies, the PAT-NICU/CICU will be widely available to large and small NICUs.
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