Hospitals are slow to change, especially when changes – such as the inclusion of families in patient care – are not big money makers. Even so, in a competitive marketplace, hospitals are beginning to realize that patient and family satisfaction develops loyal customers.
When patients and families have a good experience, they are likely to return to the hospital and recommend the hospital to others. From a business perspective, it makes sense to develop family-oriented care in hospital specialty units such as the neonatal intensive care unit.
Involving families in the NICU also reduces the neonate’s length of stay ( Nurs Adm Q. 2009 Jan-Mar;3332-7 ).
COPE is a manualized intervention program comprising DVDs and a workbook.
The DVDs provide parents with educational information about the appearance and behavioral characteristics of their premature infants and about how they can participate in their infants’ care, meet their needs, enhance the quality of interaction with their infants, and facilitate their development.
The workbook skills-building activities assist parents in implementing the educational information (for example, learning how to read their infants’ awake states and stress cues, keeping track of important developmental milestones, determining what behaviors are helpful when their infants are stressed).
Parents listen to the COPE educational information on DVDs as they read it in their workbooks. The first intervention in COPE is delivered to the parents 2-4 days after the infant is admitted to the NICU. The second COPE intervention is delivered 2-4 days after the first intervention, and the third intervention is delivered to parents 1-4 days prior to the infant’s discharge from the NICU. Parents receive the fourth COPE intervention 1 week after the infant is discharged from the hospital. Each of the four DVDs has corresponding skills-building activities that parents complete after they listen to the educational information on the DVDs.
In NICUs, families are not the primary focus of care. To nursing staff, parents are an unknown factor. Parents may silence alarms or open cribs to touch the baby, not realizing that by doing so, they are dysregulating the neonate’s delicate environment. They see nurses moving things around, and so feel they should be able to do it, too. Parents come in many varieties. Some parents sit quietly and appear overwhelmed. Some parents behave erratically. Some parents may smell of alcohol or marijuana, putting everyone in the NICU on alert. Assessing and intervening with parents is helpful to nurses, reduces tension between nurse and parent, and ensures that the daily caring for the neonate is smooth and optimal. Nurses are eager to help with parents.
From the nurses’ perspective, the parents are not the patient! Nurses have not been trained to assess and manage distressed parents. Nurses can provide basic education about the baby’s medical condition but do not have time to explain the details that overanxious parents might demand. The nurses recognize that some parents are under severe stress and do not want to leave the bedside, even to care for their own needs. The nurses recognize that some parents have their own health conditions but are unsure how to approach this issue. Nurses welcome education about how to intervene and how to refer parents to appropriate resources.
Parents are distressed and uncertain about the fate of their newborns. There is an immediate need to gain as much information as possible about the baby’s medical condition and to understand what the nurses are “doing to our baby.” There may be concern that the nurse seems more bonded to the baby than the parents. There may be a lack of understanding of when the babies can be handled and what and when they can be fed. There is significant emotional distress about “not being able to take the baby home.” Parents may want to assign blame or may feel overwhelmed with guilt. For families with poor coping skills, fear and anger may predominate and can be directed at the nurses – an immediate and ever available target. Generally, parents want to be included as much as possible in the care of their children.
Postpartum disorders in the NICU
It is expected that having a baby in the NICU is stressful. However, a meta-analysis of 38 studies of stress in parents of preterm infants, compared with term infants, found that parents of preterm children experience only slightly more stress than do parents of term children. There is decreasing parental stress from the 1980s onward, probably because of the increased quality of care for preterm infants. These studies included 3,025 parents of preterm and low-birth-weight infants (PLoS One 2013;8:e54992 ).
Over the long term, the psychological functioning of NICU parents is no different from that of control parents. A prospective randomized controlled study defined psychological distress as meeting one or more of the following criteria: any psychiatric diagnosis on the Mini-International Neuropsychiatric Interview at 2 years; Edinburgh Postnatal Depression Scale score more than 12.5 at 2 years; Hospital Anxiety and Depression Scale score more than 11.0 at 2 years, receiving treatment with antidepressants/psychotherapy/counseling over the previous 15 months ( Psychosomatics 2014;55:613-20 ).
In the short term, NICU parents are at risk for postpartum depression (PPD) with the resultant difficulty in establishing good attachment with their babies. The prevalence of PPD in mothers of term newborns is 10%-15%, compared with 28%-70% among NICU mothers (Int J Womens Health. 2014;2014:975-87) .
Fathers are known as the forgotten parents and experience a high prevalence of depressive symptoms. Fathers of term newborns experience depression at rates of 2%-10%, but rates of up to 60% have been reported in NICU fathers (Adv Neonatal Care. 2010 Aug;10:200-3).
Prevention of psychiatric illness in family members
The NICU environment is often dimly lighted, and improving lighting prevents depression in NICU mothers. A 3-week bright-light therapy intervention improved the sleep and health outcomes of NICU mothers, who experienced less morning fatigue and depressive symptoms, and improved quality of life, compared with the control group ( Biol Res Nurs. 2013 Oct;15 398-406 ). An architect on our team is designing “quiet spaces” for parents and creating more ambient light and daylighting in our NICU.
For parents who do not want to leave the NICU, mobile computer terminals can bring education to the bedside. For parents who can leave the bedside, family educational interventions are well received (Adv Neonatal Care. 2013 Apr;13:115-26) .
In current practice, in our labor and delivery suite and in many NICUs, mothers are screened for postpartum depression via the Edinburgh Postnatal Depression Scale (EPDS) ( Br J Psychiatry 1987 Jun;150:782-6 ). If mothers score over 13, they are referred for further assessment. Treatment often consists of referral for individual intervention for the mother (usually sertraline and disclosures/instructions about breastfeeding, as well as supportive psychotherapy).
What does family-centered care look like?
A family perspective supports the screening of both parents, using the EPDS. This can occur on admission of the baby to the NICU and at 2-week intervals thereafter and again at discharge ( J Perinatol 2013 Oct;33748-53) . Ideally, family functioning also can be assessed, and if needed, intervention can be offered to the whole family system.
Family screening occurs in other pediatric medical settings. High-risk families can be identified with the Psychosocial Assessment Tool (PAT) ( Acta Oncol. 2015 May;54:574-80 ).
The PAT is a brief parent self-report composed of items that assess risk associated with the child, family, and broader systems. It is currently used at 50 sites in 28 states in the United States. The PAT has been translated into Spanish, Columbian Spanish, Dutch, Brazilian Portuguese, Hebrew, Greek, Polish, Italian, Japanese, Chinese, and Korean, and is used internationally. English adaptations for Canada, the United Kingdom, Australia, New Zealand, and Singapore also are available. It has been modified for use in NICUs .
The screening enables health care providers to refer families to the appropriate service: support groups (low risk), psychoeducation (medium risk), or intensive outpatient services (high risk). This stratification allows for the appropriate use of services.
Likewise, family interventions can be thought about in tiers, similar to the risk stratification of the PAT. Tier 1 is a universal educational intervention for all parents, tier 2 parents have higher needs, and tier 3 parents need immediate intervention. The following descriptions show how this might work in practice.
Family intervention: Tier 1
•All families can be given educational material about the mental health needs of parents with a newborn in the NICU. Ideally, this material can be provided through handouts, references for further reading, and through websites accessed in the NICU. For parents who are willing to leave the NICU, they can attend support groups.
•All parents can be screened at initial contact in the NICU and then on discharge from the NICU. If the neonate stays an extended time, the parents can be screened at 2-week intervals. A high score on the EPDS screen indicates an immediate need to refer a parent. A family assessment tool, such as the PAT, can identify high-risk families for immediate referral.
•NICU nursing staff can actively address coparenting struggles. Our NICU nurses provide formal letters between nurses and parents to establish the parameters of the care of the baby, and provide direction for coparenting.
Family intervention: Tier 2
Parents identified on the PAT as having higher needs can be enrolled in psychoeducational groups, led by staff members who have behavioral health training and experience.
Family intervention: Tier 3
These parents are identified on the PAT as high risk and need significant health care services. The NICU social worker can actively work on consultation with addiction medicine, mental health, or social services.
In summary, a family approach in the NICU improves nurse-parent interactions. A focus on coparenting sets the stage for cooperation, trust, and better family outcomes. Some basic training in systems concepts and family dynamics can provide NICU staff with basic clinical skills to provide psychoeducation. Adequate screening can triage high-risk parents appropriately. For NICUs that want to implement a psychoeducational program, Melnyk’s COPE program is an evidenced-based program that is well worth implementation.
Dr. Heru is with the department of psychiatry at the University of Colorado Denver, Aurora. She is editor of “Working With Families in Medical Settings: A Multidisciplinary Guide for Psychiatrists and Other Health Professionals” (New York: Routledge, 2013). She thanks other members of the NICU team at the University of Colorado Hospital: Christy Math, Katherine Perica, and John J. White.