The Importance of Addressing Parental Mental Health for Children Born Preterm

Parents of infants born preterm are premature themselves,1 thrust into a parental role earlier than expected. Parents of preterm infants must learn a new language, with terms such as respiratory distress syndrome, bronchopulmonary dysplasia (BPD), retinopathy of prematurity, and intraventricular hemorrhage (IVH) collectively referred to as the “catalog of doom.”2 Parents of preterm infants must also learn a new culture on their child’s admission to the neonatal intensive care unit (NICU): What times are rounds? Are parents supposed to be there? What is a primary nurse? What is my role as a parent here? This occurs amidst the backdrop of parental recovery from childbirth.3 Who the family is, referred to as the family context, shapes the NICU experience for parents.4 The family context includes variables such as race, identified gender, individual cultural expectations of childbirth and hospitalization, preferred language, family structure with strengths and areas of vulnerability, parental learning style, physical abilities of parents, potential barriers to being present in the NICU, and parental mental health.4Parental Anxiety Trajectories Two Years After NICU Discharge by Span et al in this issue of Pediatrics describes the persistent nature of parental anxiety following NICU admission.5 In NeoLifeS, a longitudinal cohort study from the Netherlands’ Beatrix Children’s Hospital, parents of infants born at less than 30 weeks and/or whose birthweight was less than 1000 g were asked to complete the Spielberger State-Trait Anxiety Inventory, measuring both state and trait anxiety at 6, 12, and 24 months corrected age. The researchers also collected gestational age, birthweight, multiple birth and mortality of twins, length of stay, and major morbidities of prematurity (BPD, IVH, necrotizing enterocolitis, or spontaneous intestinal perforation). Maternal age at delivery, parity, parental partner sex, and mode of delivery were also collected.Of the 315 parents who participated in the study, significant anxiety symptoms were present in 25.3% of mothers and 16.9% of fathers. Over time, there was an marginal decrease in anxiety to 20% for mothers; for fathers, anxiety symptoms persisted between 15.0% and 17.6% at 24 months corrected age. No consistent associations were identified between perinatal or NICU-related factors and parental anxiety patterns.5 This report adds to existing evidence demonstrating substantial parental trauma and anxiety for parents.6–8 Although earlier studies focused on the birthing parent, the trauma of the NICU and associated anxiety are experienced by both parents.6–8Identifying mental health concerns is critical. Parental mental health is fundamentally linked to attachment.8,9 For the infant-parent dyad, the process of attachment is fostered by parental response to the infant’s cues and needs. Attachment regulates the immature infant, minimizing stressful experiences.9 With maturation and secure attachment, the infant learns self-regulation and becomes increasingly adept at managing stress.9 Attachment relies on the parent and child being together, consistency, and emotional availability.9,10 Parental stress and anxiety threaten the process of attachment.1,10 Navigating attachment in the face of the NICU stress can be tenuous and unsteady.8Notably, identifying which parents will experience the greatest anxiety remains unclear5 and likely reflects the complexity of vulnerability and resilience. Importantly, it does not appear to be linked to medical variables such as gestation or severity of illness,5 as is often mistakenly believed. As such, risk-based screening is insufficient, and universal screening is essential.8,10 Implementation of parental mental health screening has been described with variable approaches.11,12 Barriers to screening include lack of resources to manage identified mental health needs and programmatic costs. While these barriers are real, lack of any screening has greater consequences, as unaddressed parental mental health challenges have a detrimental impact on attachment.8,9Coupled to universal screening, programmatic emphasis on parental mental health is fundamental. Novel programs, focused on parental education and empowerment, have led to higher breastfeeding rates, better growth, greater toddler regulation, and overall improved parental mental health.8,13–18 Other programs have focused explicitly on mental health, with signals that therapeutic interventions are also beneficial.8,19,20 Consensus on best practices is lacking. However, what is clear is that parental mental health can be and should be protected and nurtured with attention to these components of education, empowerment, and mental health support while taking family context into account.8,13–20In order for screening and programs addressing mental health to be effective, however, parents need to be present, and numerous barriers persist.20–23 At a structural level, inequitable access to transportation, and medical leave coupled with existing inequities along socioeconomic, language, and demography pose significant hurdles for some parents to be in the NICU.22,23 At an individual level, greater awareness of the family context can facilitate solutions and create an environment of curiosity, adapting to the individual family’s needs and strengths.4,8,24 Essential components of family context describe who parents are, how they learn, what they may find helpful or stressful, sources of resilience, and language preferences. These are often inconsistently documented in the infant’s medical record.4 One approach, the Family Snapshot Tool, captures family context in the electronic medical record for the NICU care team members and has been shown to improve parental experience.4,24Additionally, foundational changes to the NICU environment can mitigate parental angst. One step in this direction is to reframe perception of the preterm child from one of a diseased infant to one of a developing infant, as most do survive and thrive. The lens of development, rather than disease, facilitates a more accurate understanding of the child.2 Furthermore, development is not binary; there is no “normal” or “abnormal” but rather a highly individualized and fluid process.25 As such, the language used to describe neurodevelopmental outcomes needs to shift away from binary terminology and reflect the vast array of possible, including impairment, which can be referenced with balanced descriptions of challenge and strength.2,25,26Attention to parental mental health, as evidenced by this current study, must continue into the follow-through of preterm infants.5,8,27 Barriers to universal screening parental mental health in the outpatient setting have been described.8,28 Models for care after discharge, however, do exist. In Ontario, the Provincial Council of Child and Maternal Health’s Neonatal Follow-Up task force created guidelines for follow-through, including postdischarge universal parental mental health screening, to be implemented in the context of local resources (primary care or neonatal follow-up program),28 and further care provided through parental primary care practitioners or obstetricians.28Parental mental health is foundational for all children and their developmental outcomes.9,10 Children born preterm experience greater stressors and are more vulnerable, and, yet, their parents also experience greater stress and have greater vulnerability. Evidence underscores the impact of the NICU on parental mental health and the lingering nature of anxiety.5,7,8 Prediction of which parents will be affected has not been demonstrated.5 Vulnerability is complex and individual.4,7,8,23 Universal screening, with the goal of early identification and intervention, is indicated for parents in the NICU and following discharge. In doing so, care can truly include parents, who have been transformed by preterm birth and who are the foundation for the preterm child’s current and future development.1,10 If family-centered care is our standard, parental mental health can no longer remain optional or peripheral.