Vincent C. Smith, MD, MPH

The American Academy of Pediatrics (AAP) recommends the transition to home occur when the infant achieves physiologic maturity, and there is an active program for parental involvement and preparation for care of the infant at home. The timing of a Newborn Intensive Care Unit (NICU) discharge is mostly based on the physiologic maturity of the infant. Secondary factors are discharge planning and include the assurance that arrangements for outpatient follow-up have been completed and that the family has received the necessary teaching and demonstrated mastery of the essential knowledge and skills. The importance of discharge planning has been captured in a recent article:

https://pediatrics.aappublications.org/content/143/6/e20182915.abstract

There are two related concepts involved in this transition process:

1. The discharge readiness of the families
2. The discharge preparation program.

NICU discharge readiness is the attainment of technical skills and knowledge, emotional comfort, and confidence with infant care by the primary caregivers at the time of discharge. NICU discharge preparation is the process of facilitating discharge readiness to successfully make the transition from the NICU to home. Discharge readiness is the desired outcome, and discharge preparation is the process.

Discharge Readiness

Discharge readiness is an important milestone achievement. Studies in adult, pediatric, and neonatal populations have demonstrated that adverse outcomes are associated with not being prepared at hospital discharge. These adverse outcomes range from tangibles such as increased health care utilization and costs to less tangible, but equally important, factors such asgreater difficulties with stress, recovery, self-care, confidence with self-care management abilities, coping with challenging family-related issues, obtaining necessary help and emotional support, and overall adjustment.

Discharge readiness assessment should be a standard part of the discharge process. Each NICU should make every effort to ensure that parents are prepared for the discharge of their infant(s) in order to prevent subsequent untoward events. Additionally, NICUs should conduct regular evaluations of their existing discharge program to allow improvement over time.

Discharge Preparation

NICU discharge preparation is the process of facilitating comfort and confidence as well as the acquisition of knowledge and proficiencies to make the transition from the NICU to home successfully. Suggested content for a NICU discharge preparation program would include all of the following:

1. Well-defined discharge teaching philosophy
2. Structured education program
3. Defined curriculum
4. Family assessment of discharge readiness
5. Process for the transition of care to a medical home.

A well-defined discharge teaching philosophy refers to the approach that a NICU takes to all discharge preparation including identifying the discharge planning team, understanding the importance of partnering with the family, and having a willingness to accommodate different types of families. The discharge planning team typically consists of a combination of clinical nurses, physicians, neonatal advanced practice nurses, physician assistants, case managers, and social workers. It is also imperative to remember that the infant’s parents or primary caregivers are also an integral part of the discharge pla ning team. Families are able to build on their strengths if given the opportunity to participate in the care early and be active participants in the discharge process. To embrace the concept of parents as part of the team, a NICU can follow the four centraltenets of family-centered care (i.e., dignity and respect, information sharing, family participation in care, and family collaboration). It is also important for a NICU to recognize that some families may have limited English proficiency and/or functional health literacy, and may have varied developmental needs (as in teen parents or parents with mental limitations) and will need support and special accommodation during their discharge preparation. All these are factors to consider when developing a discharge teaching philosophy.

After a NICU family has completed the structured education pro- gram with its well-defined curriculum, it can be considered to beprogressing towards discharge. This is a potentially optimal time to have a family assessment (a key component of a successfuldischarge process). The goal of a family assessment would be to understand a family’s specific needs and circumstance better. A family assessment could include some of the following questions: what is family structure and social support systems; what does the family think of its social support systems; are they adequate; what potential barriers to learning does the family have; what is their home environment like; are there financial considerations to take into account; are there transportation challenges: how much previous experience does the family have; what are their coping habits and styles; and how equipped are they to handle their infant at home. These questions will complement the discharge readiness assessment and should be a standard part of the discharge process.

Each NICU should make every effort to make sure that parents are prepared for discharge to prevent untoward events after discharge. Each NICU should also conduct regular evaluations of their discharge program to allow improvement over time. With discharge planning beginning shortly after admission, structured education, and attention to the family’s needs, circumstances, and resources, the transition to home can be smooth, even in the most complex cases.

NPA Guidelines for Discharge Preparation and Transition Planning

The NPA is coordinating an interdisciplinary workgroup to develop guidelines and recommendations for the discharge preparationand transition planning from the NICU to home for infants admitted to the NICU and their families. These guidelines will cover thefollowing topic areas:

• Family/Home assessments: Family assessments, caregiver mental health, infant mental health, and anticipatory guidance
• Special circumstances: understanding the needs of military families, supporting families with limited English proficiency and/or cultural differences, supporting families with unique cultural and philosophical expectations, supporting LGBT families, supporting families with disabilities, supporting families with complex medical needs
• Support Systems: Mentoring programs (peer-to-peer support), social work involvement, community providers/programs, mental health support, communication with families who have left the NICU, safe technologies discussion with parents
• Transfer and/or Coordination of Care: primary care providers and the medical home, care coordination or navigators, communication among providers, more integration of the NICU and community provider, subspecialty care needs, routine nursing home visits, early intervention, and discharge summary

NPA’s Vision for Change

• Every family being discharged from a NICU will have a quality discharge preparation and transition planning program that is tailored to the specific needs of the family.
• The goal is to facilitate the creation of national guidelines for NICU discharge preparation and to encourage neonatal clinicians to prioritize discharge teaching so that families are better prepared for the transition to home from the NICU.
• The work will be coordinating an interdisciplinary workgroup to develop guidelines and recommendations for the discharge readiness and preparation, and thus the transition from the NICU to home for infants admitted to the NICU and their families.

TAKE HOME POINTS

1. Making the transition from the NICU to home involves both discharge readiness and discharge preparation
2. NICU discharge preparation and transition planning should begin shortly after admission and continue until families areprepared to take their infants home.
3. A NICU discharge preparation and transition planning program should include all of the following:
   1. 1) well-defined discharge teaching philosophy;
   2. 2) structured education program;
   3. 3) defined curriculum;
   4. 4) family assessment of discharge readiness; and
   5. 5) process for the transition of care to a medical home
4. The family should be included as team members in the discharge preparation and transition planning process by following the tenets of family-centered care as much as possible
5. The structured family education program should be tailored to the family’s specific needs and circumstances.

References:

1. American Academy of Pediatrics Committee on Fetus and Newborn. Pediatrics. 2008;122(5):1119-26
2. Gupta M, Pursley DM, Smith VC. Preparing for Discharge From the Neonatal Intensive Care Unit. Pediatrics .2019;143(6):e20182915
3. Obregon E, Martin CR, Frantz III IR, Palak Patel P, SmithVC. Neonatal Intensive Care Unit discharge preparedness among families with limited English proficiency. J Perinatol. 2018 Oct 19. doi: 10.1038/s41372-018-025
4. Smith VC, Dukhovny D, Zupancic JA, Gates HB, Pursley DM. Neonatal Intensive Care Unit Discharge Preparedness: Primary Care Implications. Clin Pediatr (Phila) 2012; e-pub ahead of print 25 January 2012; doi: 0009922811433036
5. Smith VC, Hwang SS, Dukhovny D, Young S, Pursley DM. Neonatal intensive care unit discharge preparation, family readiness, and infant outcomes: connecting the dots. J Perinatol 2013 Jun;33(6):415-21.
6. Smith VC, Young S, Pursley DM, McCormick MC, Zupancic JA. Are families prepared for discharge from the NICU? JPerinatol 2009;29:623-629.
7. Sheikh L, O’Brien M, McCluskey-Fawcett K. Parent preparation for the NICU-to-home transition: staff and parent perceptions. Child Health Care. Summer 1993;22(3):227-239
8. Sneath N. Discharge teaching in the NICU: are parents prepared? An integrative review of parents’ perceptions. Neonatal Netw 2009;28:237-246.

The author has no relevant disclosures.