About the guidelines

The foundation for these recommendations is based on existing literature, practice, and available policy statements. Given the range of topics we cover, there are some situations where there is no published literature specific to a recommendation. In some situations, we relied on the lived experiences of families and providers to inform our recommendations. While there may not be supporting references for some of these recommendations, all of the recommendations are based on expert opinion and consensus and the readers are requested to note this issue while adapting them into their practices, if they choose to. The recommendations based only on expert opinion could be topics for future research.

Our guidelines are divided into the following sections:

  • Basic Information

  • Anticipatory Guidance

  • Family and Home Needs Assessment

  • Transfer and Coordination of Care

  • Other Important Considerations

Each section includes brief introductory comments, followed by the text of the guidelines and recommendations in table format. After each table, there may be further details or descriptions that support a guideline or recommendation.

Using the guidelines

It is impossible to create a comprehensive discharge preparation and transition planning program that will work for every family in every NICU setting. Rather, what we propose are guidelines and recommendations that focus on content and process. We strived to create recommendations that are both general and adaptable while also being specific and actionable. Each NICU’s implementation of this guidance will be dependent on the unique makeup and skills of their team, as well as the availability of local programs and resources.

Basic information

Discharge planning is the process of working with a family to help them successfully transition from the NICU to home. To this end, each family will need to participate in a comprehensive discharge planning program that has been tailored to their and their infant’s specific needs. The first section is basic information and is meant to emphasize content that every family will need, without taking into account each family/infant’s specific needs.

In preparing for discharge, your team will have to set clear criteria for what each family and infant need to accomplish to be ready to transition from the NICU to home. The NICU team should work with the family and confirm that the family understands the NICU discharge planning process. It is important that families understand that it is difficult to plan for a specific discharge date because discharge readiness is often conditional (e.g., the infants has no further spells, is able to gain weight, pass a car seat test, etc.) The fluid and uncertain nature of discharge readiness can be a source of frustration for families. To help minimize frustration and avoid misunderstandings, it is important to have consistent messaging, emphasizing that there can be wide variations in when an infant is discharged based on clinical indications and medical opinions.

Discharge educational content

The discharge educational content is the foundational curriculum for each family in the NICU. Each family will need to have infant care knowledge and skills to be able to provide care at home for their infant. The topics covered in this section include infant care skills demonstration, family comprehension assessment, timing of discharge education, and some elements to support family education (see Table 1).

Table 1 Discharge education.

Discharge planning tools

This section discusses resources that could be helpful in supporting families’ discharge preparation. Some elements discussed include the discharge summary, NICU hospital course roadmap, and discharge planning folder. In this context, the NICU hospital course roadmap is intended to be a strategic plan that defines a goal or desired outcome and includes the major steps or milestones needed to reach it (see Table 2).

Table 2 Discharge planning tools.

Discharge planning team

In addition to the family, the discharge planning team may include clinical nurses, physicians, mid-level providers (e.g., neonatal advance practice nurses and physician assistants), discharge coordinators, discharge planners, case managers, psychologists, social workers, and other providers as needed. Because the personnel available in each NICU vary, it is important to focus on the function and not the title (See Table 3).

Table 3 Discharge planning team.

Often the physician’s role in discharge planning is to ensure the baby has met the physiological discharge criteria and that the family has completed the comprehensive discharge planning program. The physician or designee is generally responsible for providing a warm handoff to the medical home that will assume the care of the infant and family after they leave the NICU.

Primary care providers and discharge coordinators provide ongoing technical and emotional support for families. NICU staff who have established rapport with the family play an important role as the family transitions from NICU to home [1].

Members of the nursing team who have worked most closely with the family during their baby’s hospitalization will be the best prepared to help the family as they plan for discharge. They not only know the infants’ health history, they also have experience working with the family and may have insights about parents’ perceived strengths and unique vulnerabilities [1].

NICU social workers have a wide range of responsibilities. Their role is dependent on what other resources are available in each NICU. Some families will not be clear about the role of the NICU social worker and may have misgivings about their involvement. This is especially true for families who have experienced the negative effects involvement with the child welfare system. It is helpful to clearly establish the role of social workers in the NICU setting. Providing all families with written information about available social services and supports and the role of the NICU social worker is advisable early in a family’s NICU stay.

NICU psychologists support families by providing positive therapeutic interventions, emphasizing techniques that support and facilitate parent-infant bonding. They can administer appropriate mental health screenings and provide timely referrals, in support of the families’ health and wellbeing. If your NICU does not have a psychologist, others may assume these roles if they have proper training and expertise.

Discharge planning process

For these guidelines, discharge planning process tries to address some who, when, and where questions. This section provides some guidance on discharge planning timing, discharge planning meetings, discharge planning goals, and educational philosophy (see Table 4).

Table 4 Discharge planning process.

Anticipatory guidance

Anticipatory guidance—in the context of NICU discharge preparation and transition planning—refers to helping the family develop a realistic idea of what their life will be like with their infant. This means in the immediate future following discharge as well as over their life course.

Work with the family to develop a realistic understanding of how to care for their child at home (see Table 5). Some ideas to reach this goal include the following:

  • Create a first month at-a-glance calendar that contains important daily life events (e.g., feeding times, medication administration times, appointments, etc.).

  • Discuss the number of provider appointments and indicate which will be appointments in the home versus which will be an office/hospital visit.

  • Explain that the baby and family will need time to adapt to their new environment and there may initially be some changes in the child’s behaviors, including feeding and sleeping behavior.

Table 5 Home and family life.

Prior to discharge, families should understand typical, expected infant behaviors including feeding, voiding and stooling, and sleeping patterns. Families also need to understand atypical infant behaviors, as well as signs and symptoms of potential illness (see Table 6).

Table 6 Infant behavior.

It can be very stressful coping with a crying baby, especially when the caregiver is sleep deprived. Work with the family to manage their anticipated exhaustion and focus on strategies that reduce the risks of harm to the infant, including having a rescue/respite plan when the caregiver has reached their limit (see Table 7).

Table 7 Coping with a crying infant.

Despite the best of circumstances and planning, sometimes emergencies or unanticipated problems will arise. Prepare families to respond in an emergency (Who, What, Where, When, How, and Why). Emergency planning can include an assessment of perceived acuity and an appropriate response (e.g., calling emergency services or 911 versus the contacting the pediatrician versus waiting until the next scheduled pediatric visit). To assess perceived acuity, some families may benefit from using a visual graph of green (wait for the next scheduled pediatric visit), yellow (call the pediatrician right away), or red (call 911 or emergency services). Encourage the family to learn how to use the pediatric patient portal if you have one and if they have access to a computer and/or smartphone (Table 8).

Table 8 Emergency planning.

Many families may not be aware of mental health issues that can typically follow a NICU experience or traumatic birth. It is valuable to assist families understand expectations for caregiver emotional responses (see Table 9). Staff and families both need to understand post-traumatic stress disorder is not solely a military combat disorder, rather it is a normative reaction to extraordinary circumstances. To address mental health issues, provide families with resources that include interventions and strategies they can use in the moment and locally available support resources (i.e., national hotlines, neighborhood support groups).

Table 9 Parental mental health.

The costs associated with a NICU stay continue long past a family’s discharge. Families will not receive the final bills until the baby has been home for some time. Many families will be unprepared to navigate all the financial burdens associated with NICU hospitalization and follow-up care on their own. Offering families clear anticipatory guidance to help families understand how to manage the costs. Offer every family financial counseling and resources. Help them apply for assistance. Provide them the referrals and letters of medical necessity that can help remove barriers to the care their infants need. Each family should be offered this service regardless of perceived means. Social work or case management are often the best prepared to engage families in discussions about finances (see Table 10).

Table 10 Paying for a NICU stay.

Family and home needs assessment

This section discusses family and home needs assessment to inform discharge planning.

Develop a process for assessing families’ needs and connecting them with appropriate community resources. A transition plan must include the medical, physical, psychosocial, and mental health needs of both the family and infant. All families should be screened upon admission to NICU for social determinates of health and risk factors (see Table 11). Address risk factors early through referral to community partnerships and social work services for needed services (i.e., housing, finance, etc.). Each NICU should have a readily available, easily accessible community referral guide with information about programs and agencies supporting families. This should be a living document; new resources should be added as they are made known (Table 12).

Table 11 Family and home needs assessment process.
Table 12 Family and home needs assessment content.

The NICU staff who conducts the family needs assessment may vary due to NICU personnel composition. In general, social workers or other appropriate staff (e.g., psychologist, child life specialist, case manager, discharge coordinator, etc.) may conduct the family needs assessment during the first few days of admission and prior to discharge, with a potential reassessment as needed [2,3,4,5].

It is preferred to use a multidisciplinary team (that includes nursing, social work, case management) to assess the family’s needs [2, 5, 6]. This must be a collaborative process with the family and one where the family is the driver and owner of the assessment process. Prior to the assessment, discuss with the family what they are being assessed for, what the process will entail, and how the information will be used [3]. The person doing the assessment needs to be aware of their own explicit and implicit biases and respect the family’s right to disclose or not disclose information during the assessment process.

Some families will be considered high-risk and may need extra attention as part of the discharge planning process. Some examples of high-risk families include but are not limited to the following: families where there is active substance use or history of substance misuse, those who received inadequate prenatal care, teenage parents, those experiencing interpersonal violence, families experiencing housing or food insecurity, families where there is significant relationship instability, those with diagnosed or undiagnosed mental health conditions (especially anxiety or depression), families with limited socioeconomic resources, caregivers with low functional health literacy, those where a family member is incarcerated, and transient or migratory families [1,2,3, 7,8,9,10,11,12,13]. The reason a family is high-risk and how that information was discovered should be treated as private and sensitive information. This means that access to the information should be limited to those who need to know. To the extent possible, there may need to be an assurance of professional confidentially so that families feel comfortable disclosing information. If information can be used to potentially cause harm, such as a disclosure of substance use, families should be advised of the risks of disclosure and every effort should be made to limit the harm that the sharing of this information may lead to. If they are going to provide ethical care, staff should be aware of their own explicit and implicit biases and try to minimize their influence on the family and home assessment process.

A documented system of early intervention referral and communication with community resources is needed for babies going into foster or custodial care.

Always start by asking permission and explaining the purpose of doing an assessment or screening. A sample introduction could be, “I‘d like to ask you more about your family and who’s helping you already so that we can plan next steps together.” Some other open-end questions include:

  • Where are you currently living? Is this where you will be living after discharge or will you be moving?

  • Who lives in the home with you? Who stays with you regularly? Who visits?

  • Are there any family members (e.g., extended family) or other support people who live near you?

  • Who are the support people that your family relies on?

  • Is there anything that the NICU staff should understand about your family to better serve you?

  • Are other children in the family receiving any services or supports? Do they have any unmet needs?

  • Who contributes to your family financially and economically? Who helps meet your needs?

  • How is your family’s health care covered and paid for?

Parental mental health conditions are common and treatable, but may be missed if not specifically assessed. Mental health issues may look different in postpartum parents than in their partners/spouses. Mental health manifestations may also vary based on cultural or social context. When screening a family, be sure to use evidenced based cut off scores for the individuals being screened (e.g., partners, those impacted by racism, etc, [9, 14, 15]. Families with limited English proficiency may require a more specific mental health assessment and/or support [9, 14, 15].

Every family who requests mental health support should receive mental health support, regardless of the scores on their assessments.

Transfer and coordination of care

This section discusses transfer and coordination of care from NICU providers to community providers and the medical home (see Table 13).

Table 13 Transfer and coordination of care.

Peer-to-peer support programs have been shown to be very effective and could be assets to every NICU. After discharge from the NICU, many families would benefit from being connected to a community-based, peer-to-peer support program.

Other important considerations

This section discusses some important topics to consider when doing discharge planning. We are mindful of families who are: limited English proficient, active military, lesbian, gay, bisexual, transgender, queer, intersex, and asexual (LGBTQIA+) headed, disabled, and/or culturally and/or philosophically distinct in ways that need to be considered in NICU discharge transition planning.

Families with limited English proficiency

This section focuses on discharge planning with families who have limited English proficiency (see Table 14).

Table 14 Families with limited English proficiency.

While in the NICU, families with limited English proficiency may experience more isolation. As much as possible, eliminate language as a barrier. Keep in mind that computer automated translation services often follow algorithms and lack the nuance and cultural context that may be provided by a certified medical interpreter.

These types of computer software and services are discouraged for any important medical discussion because they may not be linguistically or culturally accurate. The use of computer automated translation services should be limited to urgent situations when all other options have been exhausted or for very basic uncomplicated inconsequential information.

Military families

This section focuses on discharge planning conducted with military families (see Table 15). The Department of Defense’s Exceptional Family Member Program (EFMP) is an invaluable resource for families who have children with special medical and developmental needs.

Table 15 Military families.

Military families are not a homogenous group. For military families, there may be issues associated with frequent moves, including the following: change of medical providers/facilities, records of care kept in multiple locations, and access to services that varies by location. Some families are cared for in military hospitals. Others are cared for in civilian hospitals. Other families experience a hybrid of military and civilian hospital care. Military families in military facilities face similar issues as those in civilian facilities (e.g., deployment, frequent relocations, and heterogeneity of local resources).

Military medical facilities use the same electronic medical record. When a family is in military medical facilities, their records will be available because they follow them between military medical facilities. Military medical facilities have no access to medical records from civilian hospital unless the family brings/provides them. Therefore, when families are in civilian institutions, they must obtain and keep a copy of their records to provide to their military providers. Given this, there is potential for lack of transfer or loss of medical records when medical care is a hybrid between military and civilian facilities.

Some parents will be deployed and therefore not able to be physically present in the NICU. The following are helpful for deployed parents:

  • During the NICU hospitalization, include the deployed parent as much as possible in the decision making.

  • Use video conferencing - when possible - to allow a deployed parent to participate in discharge education.

  • Define what conditions and circumstances would mandate bringing a deployed parent back from deployment.

Non-military individuals (e.g., extended family members, friends, clergy, etc.) may be allowed into military facilities to provide support to military families.

In life and death situations where a member of a military family is not present because they are deployed or stationed in another location, the Red Cross offers assistance. The Red Cross will confirm the dire prognosis directly with the medical team. Once the Red Cross has confirmation of the situation, they will reach out to the parents’ commanding officer to inquire about parental leave. The commanding officer will decide if they will grant the parental leave. If parental leave is granted, the Red Cross will help arrange and provide financial relief, if needed, for the transport.

LGBTQIA+ headed families

LGBTQIA+ stands for lesbian, gay, bisexual, transgender, queer, intersex, and asexual. This section discusses important considerations for discharge planning with families that are LGBTQIA+ headed (see Table 16).

Table 16 LGBTQIA+ headed families.

Parents with disabilities

Parents with disabilities may need accommodations to support and facilitate their full and active participation in discharge planning. This section discusses important considerations for collaborating with parents with disabilities during discharge planning (Table 17).

Table 17 Parents with disabilities.

Like any parents of preterm or medically-fragile babies, parents with disabilities may feel overwhelming emotions and need time to acclimate to the NICU environment. Additionally, they may be feeling extra pressure or stigmatization because of their disability status. It is important for providers to have awareness of their own biases about people with disabilities, and to not assume that deficits in caregiving ability are due to the parent’s disability status. Parents with disabilities will be most comfortable with providers whom they trust and who view them as competent and capable of taking care of their child (with or without supports). Talk to the parent about any barriers to infant care that you perceive and look for solutions together. A parent with disabilities’ ability to care for their infant should never be evaluated in an environment that is not fully accessible to them. This includes the presence of adaptive baby care equipment if needed. Ensure that parents with disabilities have sufficient space, time, and support to master technical infant care skills. Whenever possible, provide the most appropriate support. Ask parents with disabilities about their needs and preferences. Table 17.

Ask parents with disabilities about their accessibility needs. More often than not, people with disabilities are the experts about their own needs and conditions. Parents with disabilities often report that they are viewed as incompetent due to their disability status. It is imperative that we meet these parents where they are with their parenting skills and help them build self-efficacy, just as we would with parents without disabilities.

For some parents with disabilities, facilities that only meet minimal ADA standards may not adequately meet family’s needs. Whenever possible, work with the parents to find accessibility solutions that allow them to participate fully in their infant’s care and facilitate bonding, especially skin-to-skin care.

The National Research Center for Parents with Disabilities at Brandeis University https://heller.brandeis.edu/parents-with-disabilities) is an excellent resource for the current state of the science on disabled parenting for providers and resources for social work. The Center also produces numerous tip sheets, videos, and other informative resources for parents with disabilities.

No parent should fear seeking appropriate mental health care. But many do. Be aware that parents with visible disabilities may be reluctant to disclose “invisible disabilities” or mental health diagnoses (i.e., postpartum depression or anxiety) out of fear of further stigmatization. Mental health resources should be provided to these parents as well as assurances that they will be supported and affirmed when seeking appropriate care.

Like many parents, the parents with disabilities may have challenges with lactation, pumping, and breastfeeding. Furthermore, options for lactation support for parents with disabilities may be limited because not all lactation consultants have experience working with parents with disabilities. Breastfeeding, by design, is an inherently accessible way to feed an infant. Extra time may be needed to help the parent-infant dyad with positioning and latching, especially if the parent has fine motor disabilities. Explore alternate feeding positions and try as many positional aids (i.e., lactation pillows, slings) as possible and appropriate. The lactation consultant should take extra time to ensure that the family has pumping equipment that works for them. Pumping bras are excellent tools for accessible pumping.

Families with distinct cultural and/or philosophical expectations

The standardized comprehensive discharge planning process must be individualized to the family. In order to meet the needs of the family, it is important to understand the cultural and philosophical expectations of the family. Never assume to know a family’s beliefs or values. Even within identified cultural groups there will be important, discernable differences. Therefore, it is imperative to have a culturally respectful approach that is individualized and informed by the family. If there are questions about what is and is not culturally-appropriate, ask the family. This section discusses a few items to take into account when doing discharge planning. Table 18.

Table 18 Families with distinct cultural and/or philosophical expectations.

Ensure discharge education strategies are culturally-appropriate and tailored to meet the specific needs of the family. Supporting the family’s unique cultural philosophy and expectations is always important throughout the family’s stay in the NICU and when planning for discharge. Confirm that all written materials given to families is written in a manner that is simple, clear, concise, and devoid of medical jargon to aid understanding and decrease confusion. Be flexible with which caregivers are given the instruction (e.g., in some cultures it is the grandmother, not the mother, who primarily cares for the infant). Have the tenets of diversity inclusion and heath equity inform practice (e.g., https://diversityinformedtenets.org/about/the-tenets/).

Families should define their own support network. There can be cultural differences in parenting and caregiving roles. As part of the family assessment, it is important to ask about roles and expectations because otherwise this information may not be disclosed.

Some families will be reluctant to have an outsider enter their space. This should be taken into account when making arrangements for services such as visiting nurse or early intervention. Some services can be provided in a community setting (e.g., daycare, school, church, etc.) if the family prefers.