Parental Stress

Parental anxiety may remain high for months because of concerns about health and parenting challenges. The experience of in vitro fertilization (IVF) is likely to accentuate the stress, which may be increased by caring for multiple births.¹⁶ Anxiety often lies behind forgetting information, avoidance, and aggressive behavior. If the staff make time for parents to verbalize their worries, they may be able to suggest appropriate ways to manage the peaks of anxiety.

Parents bond in different ways and need to be supported in this. Staff can encourage parents of very preterm infants to smile and sensitively share eye contact and the same emotional state to promote optimal outcomes for their infant, pointing out that the infant prefers parents to nurses, which predisposes them to bond with their parents.34,42 Care is usually not only skin-on-skin, which lowers autonomic nervous system activity,²⁹ but also skilled care, such as tube feeding and intensive developmental care programs. Preterm infants show faster cognitive growth when parents are consistently responsive.²¹ Parents who are prevented from holding or touching their infant over long periods face greater difficulties in feeling connected and maintaining hope.

Although families need different kinds of support and information giving, support needs to be consistent, and parents find it helpful for staff to recognize their frustration and stress responses as normal.²³ Information on care procedures may need to be repeated regularly because parents may not retain this information¹⁹ during the stress of concentrating on their infant. They may feel encouraged when the staff point out how the infant’s record demonstrates an improvement in his or her responses when the parents visit. Information helps parents correct the perception that their infant is in pain. Parents should be reassured that they can positively influence their infant’s development through early childhood.⁴²

Parents may need encouragement to connect with, support, and to nurture themselves as they become exhausted. As the staff become familiar with communication patterns between parents and/or support persons, they can encourage parents to reconnect with their extended families, particularly if a mother’s partner cannot support her or there is no father available. Staff should work with the parents’ support network and be nonprescriptive about how parents share information with the outside world.4,12 Parents often feel lonely in the NICU when contact from friends and family declines over time, and may find even a 5-minute contact with a clinician supportive (P. Davis, personal communication, 2012). If parents find it difficult to limit intrusive family involvement, the staff can help to manage this sensitively. Siblings may experience adjustment reactions of jealousy and anger and feel neglected; reading relevant story books may help them process these feelings.

Fathers

There is increased recognition of the importance of the father’s presence in the NICU, both to support the infant and develop the father-infant bond. Infants move differently in response to a father’s voice.18,23,32 This is also relevant with same-sex parenting. Fathers want to be viewed as important to their infant while different from the mother. The stress of keeping the family financially viable and making child-care arrangements for siblings has led to paternal stress being described as invisible; fathers often cope by delegating care.⁵

Many fathers, although initially reluctant to be close to their infant, find the contact more positive than expected; a father’s early involvement may positively influence the attachment process and support the mother.²⁴ When fathers are helped to care for their infants, they relax more at the bedside in opportunities for “meaningful fathering moments,”²⁰ which in turn contributes to increased paternal nurturing.^13,20,37 Involving fathers in developmental care reduces neonatal stress and its neurobiological sequelae, and is likely to promote better infant and family outcomes.⁴⁴

It is important to ask each father how he can best be supported; for example, by detailed information or an overview of his infant’s status. Fathers should be offered appointments that fit in with their work schedules; they often make the necessary arrangements for these appointments. They tend to prefer support to come from professionals and to be empowered through sharing information in an accessible and two-way process, and with written material and Internet resources.²³

Having an infant in the NICU stresses the couple’s relationship. Partnerships already in difficulty often do not survive this stress,⁴¹ which is a further reason for providing support to the couple.

Family-Centered Model of Care in the Neonatal Intensive Care Unit

The NICU should be family friendly, and care should be taken to reduce stressful noises and sights.¹⁵ Facilities for parents’ comfort and privacy such as rooms where they can relax should be provided,¹⁴ as well as a space in which fathers can work while their infant sleeps. The NICU should not be overly feminine; a father’s name could be on his infant’s crib. Prearranged discussion times that are scheduled to take place away from the infant’s crib assist in communication. What the environment communicates to the family needs to be studied so that hidden barriers to communication and rigid policies can be tackled; however, parents should not feel that their actions are overly scrutinized.²⁰ Nurses must be aware that witnessing distress in their infant generates feelings of anger in parents, which may compromise the parent-nurse relationship.³⁴ Increased support and involvement in the infant’s care help allay complaints that stem from anxiety.

Infant Feeding

Feeding, as part of the mother-infant relationship, should be an enjoyable experience in which the infant feels that his or her cues are being recognized. Supporting breastfeeding promotes attachment, pleasure, and autonomy for mother and infant as they learn together the intricacies of feeding. Mothers may need support to establish breastfeeding using an electric pump. A mother may feel too self-conscious to express milk in public, be anxious about whether she has enough milk, or feel valued more for her expressed milk than for herself. She may delay breastfeeding out of ambivalence, may experience anxiety, or consider herself a failure if the infant is slow to suck, or she may feel confused between the use of breasts for nutrition and sexual intimacy. Mothers who do not wish to or cannot breastfeed also need support, whether or not they express milk. Continuing to express milk for months throughout the night is exhausting even for the most committed mother.

Infants who become exhausted while feeding, who experience painful oral interventions, or who have been forcibly fed may develop an oral aversion. Feeding difficulties may contribute to insecure parent-infant attachment, and infants may become distressed during sucking because they do not feel securely attached emotionally.²⁸

Difficulty in Bonding

Staff need to be aware that if parents continue to approach their infants reluctantly, this may indicate a prolonged complicated reaction, different from a mother’s reaction after birth when being close may stir mixed emotions, such as feelings of failure about the preterm birth.9,13 Parents may continue to resist engaging with the infant because of a traumatic birth, shock at the infant’s appearance, or a poor prognosis about survival and disability. When parents cannot hold their infant, they may find it hard to believe the infant is theirs, particularly with an IVF-conceived infant. Mothers with a very low birth weight infant may feel less effective because of the nurses’ care; when a parent finds it hard to attach to a very low birth weight infant, staff can talk with him or her about the infant’s personality traits. It can be pointed out to parents who feel that they have to ask permission to hold their infant, that they do not have to ask permission to be loving parents. If parents become phobic about entering the unit because of its associations or their fear of bad news, this should be explored and additional support offered.

Persisting Trauma Reactions and Complex Grief

Many parents find the ongoing NICU experience traumatic, despite the initial support they receive over the preterm birth, and this may complicate the bonding process.¹⁷ A parent’s own trauma history may affect his or her responses. For example, the multidisciplinary team needs to be aware of a parent who is so anxious that he or she cannot participate in discussions about the infant’s care, while still respecting the parent’s dignity. Parents may face extreme distress or guilt or feel rejection toward the baby if the infant is visibly different or if they feel responsible for the fact that the infant is not as they wished. Deaths of other infants in the NICU may retraumatize parents. It is important that additional support is offered because infants whose parents experience post-traumatic stress symptoms are more vulnerable to develop eating and sleeping difficulties in the first year of life.³⁶

Part of the experience of complex grief may include feeling guilty, for example, about reproductive loss, earlier fetal death, or having an infant with visible differences, or mourning the unavailability of the mother. Parents may feel that they face unbearable choices, whether or not their infant survives. Getting to know the infant as a person who is psychologically alive creates a memory of being the parents of their infant, supports them when they fear death, and aids decision making and grieving.³⁵ Supporting parents while they face the reality that their child is dying requires a delicate balance. Staff need to be culturally sensitive, recognizing each person as a unique individual, whatever his or her ethnocultural group.¹ If parents are involved with staff in end-of-life decision making, this is usually associated with lessened grief. Mutual confidence and communication encourage freedom and creativity around the infant at this time.¹⁰ Attention to the infant’s and parents’ pain is important.

Medical and parental views about prolonging life may diverge, particularly when a parent’s spiritual and cultural values make it unacceptable to shorten life. The staff need to adopt an ethical embracing of difference and recognition when they cannot advise but need to maintain a dialogue to help the family work through the decision-making process.⁴³ Parents need to feel supported through the pain of end-of-life issues and know that their decisions were made out of parental love. They may need the staff to help access trusted supports. When a decision is made to forgo life-sustaining treatments, parents may appreciate being asked whether the staff should indicate to other parents what is happening in case they wish to avoid being there. Parents may need support in explaining to a young child why his or her infant sibling died.