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Basic Information
WHAT EVERY NICU FAMILY NEEDS TO KNOW
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.
What knowledge and skills does the family need?
Creating the essential tools and materials
Who are the essential members of the NICU transition team?
Who - When - Where - What - Why - How
It's all about family-centered care!
content
Discharge Education
Discharge Educational Content
The discharge educational content is the foundational curriculum for every 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.
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Communicate to the family the skills that need to be mastered prior to discharge and the expected timing of discharge.
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Families need to have demonstrated appropriate technical infant care skills and knowledge prior to discharge. Common infant care topics that families need to understand prior to discharge include the following:
Preparing the home environment
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Preparing a crib, bassinette, or bed at home for the infant and creating a safe sleep environment
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How to dress their baby for sleep
How they will safely feed their baby
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How to support feeding at the breast
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How to feed their baby using a bottle
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How to feed their baby if they have a feeding tube
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How to mix formula
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How to increase calories in breast milk
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How to pump and store breast milk
How to bathe their baby
How to dress their baby appropriately for the weather
How to diaper their baby
What is a typical number of bowel movements or wet diapers for their baby to have each day
Circumcision and umbilical cord care
How to protect the infant from infections
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Handwashing and hygiene instructions
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Importance of vaccinations for infants
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Importance of vaccinations for parents and siblings
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Information on RSV and other respiratory infections - and what to watch for
When and how to use a bulb syringe
How to give their baby medications
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Medicines (including vitamins and other supplements) that their infant will take when they are at home
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Medical indication for each medication - Why they are taking the medications
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Administration instructions for each medication - How to give the medications
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When to give the medications
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What to do if the infant misses a dose of the medication
How to recognize fever and other potential signs of illness
Who they should call with their medical questions and concerns
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When to call the pediatrician
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When to call 911 or emergency services
Arranging for help that the family may need at home
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The importance of vaccinations for caregivers
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Sharing Safe Sleep practices
Importance of having a medical home for the infant with primary care providers who are familiar with the needs of infants who have been in a NICU
When and how to do tummy time
Understanding infant enrollment in special programs for preterm infants and infants with special medical or developmental needs
Safe use of infant-related technology
Infant-specific cardiopulmonary resuscitation (CPR)
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Discharge instructions should facilitate family’s understanding of major and/or significant diagnoses.
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Discharge instructions should include the following information:
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Primary care follow-up location, date, and time.
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Follow-up medical specialist appointments that have been scheduled, as well as appointments that are needed but have not yet scheduled.
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Medical indication and/or rationale for each medial specialist service follow up.
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Advice about who to contact in case of an unanticipated occurrence.
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FAMILY PREFERRED EDUCATIONAL MODALITY
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Identify how the family prefers to receive and review information. Their preferred method should be used for the discharge planning process.
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Offer remote discharge teaching if a caregiver is located in a different physical location, making use of technology with a preference for video instead of just audio (e.g. FaceTime, Zoom, Skype, etc.).
FAMILY COMPREHENSION
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Invite family members’ questions. But instead of asking, “Do you have any questions?” say, “Did I leave something out?” or “Does that make sense?” Communicate clearly that you expect they will have questions, both now and in the future. Let them know who can help answer those questions.
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Confirm the family’s comprehension of the infant’s diagnoses and conditions and their knowledge of medical follow-up appointments by inviting the family to repeat or “teach back” their understanding.
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Ensure the family’s comprehension of infant care skills, confirmed by return demonstrations of their knowledge. Encourage families to demonstrate by suggesting, “Now you try it”.
TIMING OF DISCHARGE EDUCATION
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Families’ technical infant care skills and knowledge discharge preparation should occur based on the family’s availability, regardless of time of day. When possible, have at least two caregivers that are familiar with the infant care skills and knowledge.
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Establish that the family feels comfortable with their ability to provide care at discharge. This may require changing the baby’s existing care schedule to accommodate parent availability and/or an overnight stay.
FAMILY EDUCATION SUPPORT
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Some families may want to record infant care skill demonstrations for later reference or to show a family member who was not present during the demonstration. Follow hospital protocol to allow video recording as appropriate. Note: if there is no policy, it may be necessary to create one to support a family’s use of recording as part of the education process.
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Supplement discharge skill demonstrations and discharge education in the family’s preferred learning style and language (i.e. written, visual, live demonstration, or recorded) to reinforce instruction and increase knowledge retention. Allow multiple educational opportunities and skill demonstrations. Give families adequate time to process information and ask questions. Accommodate the family when additional consultation or a review is requested.
tools
Discharge Planning Tools
DISCHARGE SUMMARY
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Discharge summaries should at minimum include all the following items:
Infant’s name in the hospital (and after discharge, if they are different)
Discharge diagnoses
Condition at discharge
Discharge physical exam findings (highlighting any abnormal physical findings)
Discharge medications and administration instructions
Home feeding plan
Newborn hearing screen results, any follow-up screening needed
Newborn screening dates sent and (if known) any abnormal results
Car seat screening results
Immunizations administered, any immunizations recommended but not yet administered
Pending tests or lab results that need to be followed up on
Prognosis if guarded
If indicated, include the infant’s medical equipment needs (e.g., oxygen, gastrostomy tube)
Any known pertinent social, family, or medical history
Interpreter and/or communication needs
Any referrals to resources for specific diagnoses
Community resources (e.g., counseling services, mental health support, substance dependency treatment, visiting nurses, financial resources, etc.)
Community service program referrals made or recommended (e.g., community health nursing agencies, early intervention services) and any counseling opportunities available to the family
Any tasks to be completed (e.g., follow-up appointments or test that were recommended but not yet scheduled)
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Discharge summary should be formatted from a structured template with section headings
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Discharge summary would, ideally, be translated into the family’s preferred language
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As part of the discharge process, provide families with copies of the final discharge summary and directions on how the family can get an official copy of the medical record, if they would like
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Provide at least two copies of the discharge summary (one for the medical home and one for the child’s family that they can share with home visiting or emergency department services as needed). If the infant is seen by medical specialists, either provide the specialists with copies of the discharge summary directly or provide the family with copies of the discharge summary to give to the specialists
NICU ROADMAP
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Have a roadmap or equivalent visual schematic that outlines the time span from the birth and NICU admission to NICU discharge. On the roadmap, include following:
For the family, individualization of discharge educational goals/tasks and a suggested timeline to complete the items
For the infant, medical milestones for the infant to achieve, relevant to the infant’s gestational age and unique developmental progression
Identification of short- and long-term follow-up needs of the infant and plans for the transition to pediatric care
DISCHARGE PLANNING FOLDER
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Provide a discharge planning and education folder, to be used during the discharge planning process to guide the family through the topic areas and tasks they and their baby must achieve for discharge. It may contain a checklist and other educational materials that allow the family and staff to track the family’s progress with discharge preparation.
WRITTEN DISCHARGE INFORMATION
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All printed materials given to families should be written in a manner that is simple, clear, concise, and devoid of medical jargon. This aids understanding and decreases confusion. Written materials should be reviewed to ensure that they meet health education standards. When possible, include written and illustrated materials in the family’s preferred language to support and reinforce verbal instruction.
SUPPLEMENTAL DISCHARGE EDUCATIONAL MATERIALS
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Parents should be provided with materials (e.g., binders, folders, videos, websites) to supplement bedside infant care skill knowledge and education.
JOURNAL
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Some families benefit from having a journal to document their discharge education, describe experiences, and serve as a place to keep track of their observations, questions, and concerns
team
BUILDING YOUR 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.
INFANT CARE GIVERS
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At the beginning of the discharge planning process, identify the people who will be primary caregivers for the baby and ask how willingly that responsibility is assumed.
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Those individuals, and any others that the family prefers, will be the primary recipients of the NICU discharge preparation program.
CONSISTENT NURSING PROVIDER
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Families benefit from having consistent bedside nursing that allows the nurse and family to become familiar with each other. Some units are able to achieve more consistency by having primary nursing and/or nursing teams for each infant.
FAMILY SUPPORT PEOPLE
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Some families may benefit from having more support people than just the parents participate in the discharge planning process.
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During the assessment process, encourage families to invite their preferred support people to participate using their method of choice (i.e., remote, in person, etc.).
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Some examples of support people include, but are not limited to:
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extended family
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partners
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close friends
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church, temple, or spiritual leaders
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doulas and midwives
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home health aides
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community members
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DISCHARGE COORDINATOR / DISCHARGE PLANNER / CASE MANAGER
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This individual(s) is responsible for:
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ordering durable medical equipment
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helping arrange follow-up appointments
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coordinating services for after discharge
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physical or occupational therapy (PT or OT)
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home health care
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private duty nursing
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Also, this individual is responsible for assisting the family with contacting the fire department and/or electric company and creating a plan if they lose electricity at home.
SUPPORTING SIBLINGS
While it may or may not be appropriate for some siblings to join the discharge and transition team, ALL siblings need age-appropriate support to understand the NICU experience, the babies’ medical and developmental needs, and the resulting changes in their home life.
Positive interventions could include sibling support programs, activities, classes, and resources. When able, use Child Life specialists to help with sibling support programming.
process
Discharge Planning Process
DISCHARGE PLANNING TIMING
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Discharge planning should begin at admission and continue throughout the infant’s hospitalization.
DISCHARGE PLANNING MEETINGS
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The initial discharge planning meetings should integrate the family in discharge planning process and continue with step-by-step planning as discharge approaches.​
Routinely include the family in discharge meetings, normalizing the process and helping to ensure consistent messaging to the family. This creates a shared vision for discharge planning between the family and staff.
Allow space for the family to voice their comments/concerns about the discharge plan, then respond to their needs.
Give the family enough advanced notice to plan to attend the meetings. Be flexible and family-friendly with the scheduling of meetings (e.g., day or night) to maximize family participation.
When possible, face-to-face discharge planning meetings are preferred. But offer the family the option of remote participation.
Part of the discharge planning meeting is to ensure that the family has a good understanding of where they are in the discharge process, confirm the educational goals, and verify the discharge criteria to allow the family time to prepare, do home environment preparation, obtain home supplies, arrange help at home, and schedule follow up appointment arrangements.
Some families will want to include their preferred support network in discharge planning. Staff should accommodate the needs of the family and not limit the meetings to only the parents, unless that is the family’s preference.
DISCHARGE PLANNING GOALS
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Parents should be an integral part of the multidisciplinary team.
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This team collaborates to create a timeline of discharge goals, educational objectives, and specific technical skills that must be attained.
philosophy
DISCHARGE PLANNING GOALS
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Discharge education strategies should be culturally-responsive and tailored to meet the specific needs of the family.
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Medical teams should utilize the tenets of Family-Centered Care:
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Dignity and Respect
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Information Sharing
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Family Participation in Care
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Family Collaboration
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Ensure that staff members provide a consistent, uniform message when communicating the discharge instructions.
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Education modalities should be flexible to meet the needs of the family.
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Plan ahead (more lead time may be needed because of the potentially more complex logistics)
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Be flexible with timing to allow for scheduling with both parents if they would both like to participate.
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If one of the caregivers is not able to be present, offer remote discharge education, making use of video technology (e.g., FaceTime, Skype, Zoom, etc.) when possible and audio when necessary.
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