DEPARTMENTS: Expert Opinion: Neonatal
Transition to home from the newborn intensive care unit (NICU) is often a difficult time for families. Instead of being a time of family sharing and celebration as would have occurred with a more routine birth experience, it is often a time filled with fear and anxiety. Caring for a high-risk infant at home can be difficult, especially when families must provide medical care as well as parenting. What is even more difficult for many families of high-risk infants is that the medical care can seem to overshadow the parenting. This is especially true in the first days and weeks following discharge from the NICU. What more could be done to ease this transition? This column explores some of the existing strategies for supporting families and easing this transition as well as considers some novel approaches. Healthcare reform is moving us toward the goal of making preparation for discharge an even greater priority since it is likely that third-party payers will soon be paying less or nothing for readmissions after discharge from the hospital. With these changes in reimbursement on the horizon, supporting the infant and the family prior to discharge needs to become an even greater focus.
The birth of any infant produces a level of stress in the family. Adaptation is further complicated when the infant is at high risk. If the family does not have adequate coping strategies or resources, this crisis leads to increasing stressors, which ultimately can weaken or destroy the family unit. Families often enter the unfamiliar chaotic environment of the NICU exhausted, bewildered, and emotionally drained by the unexpected birth experience they have just encountered. It is at this moment that a partnership must be formed between the family and professionals caring for the infant.1,2 Partnership with the family is a pivotal aspect of family-centered caregiving. Family-centered care is based on the belief that the family is the center of the caregiving for any individual because in our society the family is the main source of social support. Partnerships exist when there is a relationship between 2 or more parties that have a shared goal. Effective partnerships between professionals and families are based on mutual respect, valuing of family expertise, fully shared information, and joint decision making. In the NICU, it is wholly impossible to provide excellent healthcare to the infant without partnering with the parents or family, or preferably both, in every aspect of the care. Thus, given the philosophy of family-centered caregiving, discharge planning best occurs when it is mutually shared by healthcare professionals and families. Mutual sharing includes 2-way communication, joint goal planning, and decision making. Researchers repeatedly have found that hospital-based neonatal nurses view caring for families as not within their realm of practice (and certainly not the priority in their practice) but as something extra they do “when there is time.” These views are not congruent with family-centered care practices and must be discarded.3–5
The mantra that discharge planning begins on the day of admission is heard routinely in most NICUs. Yet, the focus on discharge planning can sometimes get lost in the other routines of caregiving and may not be the focus at different points in the caregiving because the needs of the infant and family changes over time. During the acute phase of care, the focus is often on the here and now. The caregiving can be somewhat crisis-oriented, with the information and teaching provided to families that are supportive of the infant and the procedures or their medical needs at the moment. During this time, parents may also feel that there is little or no role for them as “parent and primary caregiver” in the NICU. This is especially true if a partnership has not been established and the environment is not welcoming. Parents sometimes seem to visit less in this acute period; the stress and anxiety they feel while in the NICU may make staying away seem easier to them. During this time, the transition to home can seem far away and parents need support and encouragement and a true role as parents to feel their presence is essential.
Yet, even during this time of acute needs for the infant, regardless of whether anyone is talking about discharge, families are thinking about discharge. They are watching us and wondering how they will care for their child at home. “Will they ever be able to deliver the care that their child will require at home in the smooth effortless way that they see in the NICU?” “What will their child's needs be like after discharge and will their child ever be able to do the things they had dreamed about?” These questions when unanswered become more ominous over time and may overwhelm families with increasing anxiety, limiting the parents' ability to take in the information and support provided by healthcare professionals in the NICU environment. To best ease the transition to home, parent participation in the caregiving must begin at admission. When parents are partners and actively involved in caregiving, there are physiologic and behavioral benefits for the infant as well as benefits to parents, including early bonding, increased confidence in parenting skills, and a sense of control; parents begin to gain a sense of confidence and competence, and they begin to believe they could care for their child at home.6–8 During preparation for discharge, the neonatal nurse plays an integral role in guiding the family to appropriate resources and support services. By promoting adaptation, the neonatal nurse can ensure an intact family unit and promote best outcomes for the infant.
I suggest we consider a new mantra, “No discharge teaching on the day of discharge.” If all the teaching were completed before the discharge day, the focus of the day could be providing support and continued building of confidence in the family since they are truly “ready” to care for their infant at home. With this new focus, the day of discharge could then become a day of celebration for the family, with some of the more normal experiences for the family. Parents could have cake or flowers, and there would be time for pictures. There would be no last minute instructions with more and more information just as parents go out of the door with their infants. Mothers could choose whether they wanted to leave the hospital in a wheelchair with the child in their arms like other mothers of full-term infants. The day could be for confidence building rather than for a focus on “don't forget.”
This approach means that the timing of discharge teaching and discharge readiness of the infant will need to be well coordinated since third-party payers are unlikely to pay for an extra day. Even families are unlikely to want their infant to stay in the unit even for a day of celebration if they are ready to go home. Getting all the pieces to come together will take much organization. Sometimes all the planning will fail since as the infant nears discharge, there may be medical barriers. But that should not prevent healthcare professionals from setting the goal of no teaching on discharge day. In addition, we will also need to gather the evidence to support the importance of no discharge teaching on discharge day. Research questions to support this tenet might include the following: How much of what is taught on discharge day do parents remember? What are the best strategies to provide education and reinforce it so that parents are best prepared for discharge? And what media or teaching tools (checklists etc) best reinforce and support parents in retaining what they need to know at home after discharge from the NICU? Preparing the infant and the family for discharge does need to begin with admission to the NICU, but the focus can be on planning not only on the needs of the infant but also on the celebration and successes for the infant and the family. Using this as the focal point will allows us to focus more on strengthens of families rather than on weaknesses as well as to increase the confidence and competence so that the transition to home is seamless.
—Jacqueline M. McGrath, PhD, RN, FNAP, FAAN
School of Nursing
Virginia Commonwealth University
1. McGrath JM. Partnerships with families: a foundation to support them in difficult times. J Perinat Neonat Nurs. 2005;19(2):94–96.
2. Griffin T, Abraham M. Transition to home from the newborn intensive care unit. J Perinat Neonat Nurs. 2006;20(2):243–249.
3. Saunders RP, Abraham MR, Crosby MJ, Thomas K, Edwards WH. Evaluation and development of potentially better practices for improving family-centered care in the neonatal intensive care unit. Pediatrics. 2003;111(4):e437–e349.
4. Moore KAC, Coker K, Dubuissson AB, Swett B, Edwards WH. Implementing potentially better practices for improving family-centered care in neonatal intensive care units: successes and challenges. Pediatrics. 2003;111(4):450–460.
5. McGrath JM. Family: essential partner in care. In: Kenner C, Lott J, eds. Comprehensive Neonatal Care: An Interdisciplinary Approach. 3rd ed. Philadelphia, PA: Mosby, Saunders; 2007:491–509.
6. Just A. Parent participation in care: bridging the gap in the pediatric ICU. Newborn Infant Nurs Rev. 2005;5(4):179–187.
7. Prentice M, Stainton MC. The effects of developmental care of preterm infants on women's health and family life. Neonat Paediatr Child Health Nurs. 2004;7(3):4–12.
8. Baker BJ, McGrath JM. Parent education: the cornerstone of excellent neonatal nursing care. Newborn Infant Nurs Rev. 2011;11(1):6–7.