NICU Discharge Preparation and Transition Planning

The United States is one of the top ten countries in the world for preterm births, with about 11% of all births being preterm. Most of these preterm births require NICU care and proper discharge teaching is needed to reduce the risk of readmission. To support this large number of sick and preterm babies and their families, the National Perinatal Association (NPA), an interdisciplinary group of individuals, worked to develop guidelines and recommendations for NICU discharge and transition to home.

Discharge readiness is led by the physiologic stability of the infant and the attainment of skills by the caregivers to care for the infant at home. Many researchers and programs have studied how to develop discharge programs that ease the transition to home. The NPA chose to address the discharge program comprehensiveness as it relates to the following: the approach to discharge education, the structure of the education program, the curriculum, readiness of the family and a method to transfer ongoing care.

The work group looked at the above parameters and asked the following questions to develop the Interdisciplinary Guidelines and Recommendations for NICU Discharge Preparation and Transition Planning: Is the content appropriate, practical, clear, concise and complete?

The guidelines are divided into the following sections:

  • Basic Information – Communicate the skills needed and the timeline for discharge to the families, assess family comprehension, preferred learning method and tools needed for education.
  • Anticipatory Guidance – Help the family develop a realistic idea of what to expect life to be with an infant at home.
  • Family and Home Needs Assessment – Assess housing, finances, transportation, child care needs and mental health.
  • Transfer and Coordination of Care – Identify primary care providers and specialists as well as community resources for continuity of care after the hospital.
  • Other Important Considerations – Identify interpreter needs, families with disabilities, cultural needs, military families and LGBTQ+ families.

Utilizing these guidelines can assist in building a comprehensive discharge education program and ease the transition to home because discharge teaching is improved, leading to family and staff satisfaction with discharge. See the full guidelines here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9010297/

Smith, V., Love, K., Goyer, E. (2022). NICU discharge preparation and transition planning: Guidelines and recommendations.  Journal of Perinatology. https://doi.org/10.1038/s41372-022-01313-9.

Maternal Concerns in Home Care for the Premature Newborn: An Integrative Review

Twenty-one articles about maternal concerns for care at home for their premature infant after discharge were reviewed. Although most of the articles were from Brazil, global themes were identified. Mothers from all over the world are affected by feelings of anxiety, fear, insecurity and concern after discharge.

Areas of concern included: breastfeeding, hygiene, sunbathing practices, colic, recognizing clinical changes, thermoregulation, and kangaroo care. Involving parents in daily caregiving while in the hospital may help mothers feel more supported and increase confidence in recognizing signs of clinical change, managing colic, and continuing kangaroo care at home. A lack of encouragement and guidance in breastfeeding can lead to a decrease in milk supply and contribute to early weaning from breastfeeding. Proper encouragement and guidance can help address concerns with proper latch, managing return to work, and recognizing if their infant ate well while at the breast. In conclusion, the authors identified that mothers need more support, involvement and encouragement in an infant’s care while in the hospital and support with follow-up care after discharge to ease feelings of anxiety, fear, insecurity and concerns after discharge.

Support, involve and encourage families in their infant’s care while in the hospital to ease feelings of anxiety, fear, insecurity and concerns after discharge.

Da Conceicao, T., Do Nascimento Souza, M. H., Braga Esteves, R., Pereira Peres, P. L., Valente, D., Nespoli, A. (2023). Maternal concerns in home care for the premature newborn: An integrative review. Rev Bras Enferm. https://doi.org/10.1590/0034-7167-2022-0769.

Parent Perspective: Part 2-Considerations for the Transition Home Post-NICU Discharge

The authors of this article, as well as Part 1, are mothers of NICU graduates. Part 1 focused on changing the NICU culture during the infant’s NICU journey to include parents in all care. This second part focuses on recommendations for interventions and improvements for the transition to home.

Partner and collaborate with families during an infant’s NICU stay to build a parent’s confidence in caring for their infant after discharge. Encourage parents to participate in daily rounds and provide physical care for their infant in the NICU. Provide opportunities for parents to speak first during rounds to ensure parents can give insights on their infant, address concerns, and participate in the decision-making process.

Collaborate and develop rapport with caregivers to build a parent’s autonomy and reduce the stress and anxiety that parents develop at discharge, leading to better outcomes for their newborn. Provide support and help parents gain confidence, build advocacy and caregiving skills, and help them understand the care their infant requires after discharge and the warning signs for when medical intervention is needed. Be mindful of the family’s readiness and willingness to learn before educating parents on the essential skills to care for their infant. Education should occur over a period of time and not just 15 minutes prior to going home.

Co-creating a care plan with families can assist families in navigating the healthcare systems and help families connect with the appropriate providers. The care plan should be communicated in different formats and help a family organize their infant’s critical information, which can greatly improve their quality of life and efficiency while reducing stress and the burden of relying on memory to communicate vital information to multiple providers and family members. Empower families to navigate and anticipate their infant’s needs so recommended therapies and early interventions can be received.

Encourage parents to participate in and speak first in daily rounds, provide physical care for their infant in the NICU, help parents gain confidence, build advocacy and caregiving skills, and help them learn the warning signs for when medical intervention is needed after discharge. Develop care plans with the family to organize daily, weekly and monthly care. 

DiBari, J.N.; Rouse, L. (2023). Parent perspective: Part 2-considerations for the transition home post-NICU discharge. Children 2023, 10, 1835. https://doi.org/10.3390/children10121835

Video Conference Discharge Process for NICU Infants with Medical Complexity

Risk of hospital readmission post NICU discharge is increasing with survival at younger gestational ages. Preparing for a smooth transition to home not only involves the family, but the primary care provider, specialists, home care companies and outpatient therapies. Although discharge summaries are sent to the follow up providers, the information may not be available or read before the first follow-up appointment.

Following discharge, when overwhelmed families meet the primary care provider for the first time and attend follow up appointments, they are often not equipped to ask or answer pertinent questions or adequately coordinate care. Follow-up providers surveyed in Pennsylvania and Delaware in 2019, had concerns for managing complex infants, citing a lack of resources and lack of clear communication as two barriers to continuity of care from the hospital to the outpatient setting. The number one concern for families and primary care providers (PCPs) was managing feeding tubes. A pilot project at a large level IV NICU addressed this area of concern and improved the discharge process for the families and the PCPs.

The pilot project had 25 families who had infants with feeding tubes and participated in a video conferencing call 3-7 days before projected discharge with the parent/caregiver, PCP, NNP or fellow, and the nurse case manager. During the video conference call, the NNP led the discussion by reviewing the clinical course of the infant from birth to discharge.

The discussion consisted of outstanding test results that the PCP will need to follow or track, defined and discussed the roles of the specialists and the follow-up care. The case manager coordinated, ordered and scheduled home health care needs, supplies, appointments, pharmacy supplies and medications, developmental follow-up and formula needs. At the end of the call, all members were given time to ask questions, and the first follow up appointment was confirmed.

Of the 25 families involved in the project, 77% of the caregivers were very or completely satisfied with the discharge video call hand off process, and 96% of PCPs were very or completely satisfied as well. Limitations to the video conferencing call, included difficulty with scheduling the call for all parties involved.

Authors also identified that other high-risk infants may benefit from a video conferencing discharge hand-off including those with a tracheostomy, those who have sustained life-altering injuries, congenital heart defects, and short gut syndrome. Collaboration and offering a variety of discharge planning methods can also improve satisfaction of all parties, thus improving outcomes post-discharge and reducing the risk of readmission.

Using a video conferencing call prior to discharge can help prepare parents for the first primary care provider appointment, coordinate follow-up care, improve post-discharge outcomes and reduce the risk of readmission. 

Bourque, M., Recigno, D., Preedy, K. (2023) Video conference discharge process for NICU infants with medical complexity. Neonatal Network. https://doi.org/10.1891/NN-2022-0047.

Know Better. Do Better.

We hope these article reviews help you change how you prepare a family for the transition to home. Utilize the suggestions provided in each article and the NPA guidelines to evaluate your unit’s transition to home process. Share with your team the changes that will ensure a safe and successful transition for each family you serve. Together we can make a difference in the lives of infants and their families all over the world.

Your Friends in Neonatal Care,

The NTMC Team