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Follow-up Care For the Neonatal Intensive Care Unit Graduate
FAMILY DYNAMICS
Follow-up Care For the Neonatal Intensive Care Unit Graduate Lois Phillips-Pula, PhD, RN and Jacqueline M. McGrath, PhD, RN, FNAP, FAAN
Keywords: Discharge planning; Decision-making; Family centered-care; NICU graduate
The birth of a preterm infant can be devastating for both mother and family. The dreams associated with the perfect pregnancy and birth have been shattered. Simultaneously as mothers are working to recover, they are tasked with learning their way around a neonatal intensive care unit (NICU) where their infants will be cared for by someone other than themselves. NICU hospitalizations can last for several weeks to several months depending on the medical diagnoses, and even following discharge, NICU graduates have higher-than-normal hospital readmission rates (10–35%), especially during the first few months. 1,2 There are few studies in current literature that provide a clear view of the period immediately following NICU discharge, and those that do, do not provide an in-depth look at the emotional or cognitive needs of infants and their families. 3 The purpose of this discussion is to highlight the need for continued medical and developmental follow-up care for NICU graduates, and to explore ways to increase parents' participation in these visits.
Once an infant progresses enough to meet standardized benchmarks set by the NICU, a discharge date is chosen and parents come to the realization that their infant is coming home. As the discharge date approaches, parents report a dichotomy of feelings; joy that they will be able to take their infant home, and fear that they won't be able to sustain the current levels of care and keep their infant healthy. 10 They express unrealistic views of what NICU discharge means, underestimating the physical energy needed to provide round-the-clock care for a convalescing high risk infant, while also spending several days a week at various health care providers offices, labs and pharmacies to ensure that their infant is doing well. 10–13 It is not surprising then to learn that up to 30% of parents can fail to keep the first medical appointment following NICU discharge, and that this percentage increases as parents who attended the first visit often fail to return for their next appointment. 14 These numbers can be even lower for developmental follow-up visits,
Discussion Background Preterm birth is a serious and costly healthcare challenge in the United States, with an approximate cost of $51 600 per infant spent on medical costs, follow-up care, special education services, etc. 4,5 Although this financial cost is significant, the emotional toll on parents, can be immeasurable and can result in adverse mental symptomatology being exhibited for months or years after the birth. 6–9 From the Chamberlain College of Nursing, Arlington, VA; School of Nursing, University of Connecticut, Storrs, CT; and Nursing Research, Connecticut Children's Medical Center, Hartford, CT. Address correspondence to Lois Phillips-Pula, PhD, RN, Chamberlain College of Nursing, 2450 Crystal Drive, Arlington, VA 22202. E-mails: [email protected], [email protected], [email protected]. © 2012 Published by Elsevier Inc. 1527-3369/1204-0483$36.00/0 http://dx.doi.org/10.1053/j.nainr.2012.09.006
The necessity of follow-up care after NICU discharge is an important part of discharge teaching. Infants born earlier and at lower birth rates are surviving until discharge and are increasingly demonstrating cognitive disabilities—some of which might not be obvious until after the first years of life, when the child reaches school age. 15 These may be due in part to the numerous sequelae associated with the medical interventions performed while the child was in the NICU. 15 At-risk infants who do not attend follow-up appointments have been found to have higher rates of functional challenges when compared with their counterparts who did receive follow-up care. 14 In the United States there are no formalized medical guidelines for outpatient centers that work with premature infants and their families; however, most include similar basic services such as physical and developmental exams. 3,15 Additionally, clinics provide referrals and assist parents in finding the specialized care their infant needs, and are in a perfect position to share information with local NICUs regarding the outcomes of the care provided prior to discharge. 3,15
In a study of 218 mothers of preterm infants, 16 several factors were noted as important to parents when bringing an infant in for follow-up care. One concerned whether or not the health care provider (HCP) examining the infant explained the examination as it was being done. Another related their need for more information on developmental milestones as well as suggestions on how to best help their children achieve these milestones. A third expressed the caregiver's need for reassurance from their child's HCP that they were doing a good job and that progress was being made. Interestingly, the site location, specifically the staff at the different locations, was found to have the most significant impact on whether or not a parent continued to bring their infant back for follow-up visits. Parents indicated a preference for the clinics with smaller core staff members where they knew who was examining their child and why the examination was necessary. These preferences indicate the importance to parents of a personal connection with the professionals who work with their child and speak to an atmosphere where they are comfortable asking questions of others who they feel are also invested in their child's progress.
Conclusion Early identification and treatment of developmental delays in preterm infants leads to better outcomes for both mother and baby. This message needs to be reinforced to parents each time teaching occurs in the NICU. NICU nurses who have gained the trust of parents are in a key position to screen those parents who they feel might need extra help getting their infant to follow-up visits and to help them in making the appointments, working out transportation or other issues, etc. In some NICUs, parents are provided with an opportunity to meet the follow-up staff and this contact can increase their participation in follow-up visits. In addition, providing information about what will happen in the follow-up visit is also important; who will the child see, what exams will be included, and how this extra care will benefit the child and their family are important questions to be answered. After NICU discharge, contact should be made by clinic staff to remind parents of upcoming appointments and to emphasize the importance of these visits. When a parent misses an appointment, another call should be made to ensure first that all is well and second to offer times for another appointment. Unless we are willing to take the time to explore with parents why appointments are being missed, developing strategies and interventions to support and improve attendance will be futile.
References 1. Spicer A, Pinelli J, Saigal S, Wu Y, Cunningham C, DiCenso A. Health status and health service utilization of infants and
NEWBORN
mothers during the first year after neonatal intensive care. Adv Neonatal Care. 2008;8:33–41. 2. Escobar G, Joffe S, Gardner MN, Armstrong MA, Folck BF, Carpenter DM. Rehospitalization in the first two weeks after discharge from the neonatal intensive care unit. Pediatrics. 1999;104:e2. 3. Beal JA, Tiani TB, Saia TA, Rothstein EE. The role of the neonatal nurse practitioner in post NICU follow-up. J Perinat Neonatal Nurs. 1999;13:78–89. 4. Callahan WM. Prematurity and infant mortality: what happens when babies are born too early? Washington, DC: Committee on Energy and Commerce Subcommittee on Health; 2010. p. 1–5. 5. Armstrong F, Meis PJ. Clinical, family, and cost outcomes of preterm births; an overview of the problem and prevention opportunities. J Clin Outcomes. 2007;14:547–553. 6. Feeley N, Zelkowitz P, Cormier C, Charbonneau L, Lacroix A, Papageorgiou A. Posttraumatic stress among mothers of very low birthweight infants at 6 months after discharge from the neonatal intensive care unit. Appl Nurs Res. 2009;24:114–117. 7. Melnyk BM, Crean HF, Feinstein NF, Fairbanks E. Maternal anxiety and depression after a premature infant's discharge from the neonatal intensive care unit. Nurs Res. 2008;57: 383–394. 8. Gennaro S, Hennessy MD. Psychological and physiological stress: impact on preterm birth. J Obstet Gynecol Neonatal Nurs. 2003;32:668–675. 9. Jackson K, Ternestedt BM, Schollin J. From alienation to familiarity: experiences of mothers and fathers of preterm infants. J Adv Nurs. 2003;43:120–129. 10. Phillips-Pula L, Pickler RH, McGrath JM, Brown LF, Dusing SD. Caring for the preterm infant at home: A mother's perspective [dissertation]. Richmond, VA: Virginia Commonwealth University; 2011. 11. Bakewell-Sachs S, Gennaro S. Parenting the post-NICU premature infant. Am J Matern Child Nurs. 2004;29: 398–403. 12. Sneath N. Discharge teaching in the NICU: are parents prepared? Neonatal Netw. 2009;28:237–246. 13. Wigert H, Johansson R, Berg M, Hellstrom AL. Mothers' experiences of having their newborn child in a neonatal intensive care unit. Scand J Caring Sci. 2006;20:35–41. 14. Ballantyne M, Stevens B, Guttmann A, Willan AR, Rosenbaum P. Transition to neonatal follow-up programs. J Perinat Neonatal Nurs. 2012;26:90–98. 15. Sherman MP, Aylward GP, Shoemaker CT, Rosenkrantz T, Windle ML, Pramanik AK. Follow-up of the NICU patient. Medscape reference drugs, diseases & procedures. Web site, http://emedicine.medscape.com/article/1833812overview. Accessed July 11, 2012. 16. Wong SE, Butt ML, Symington A, Pinelli J. Parental satisfaction with quality of care in neonatal follow-up programs. J Neonatal Nurs. 2011;17:222–232.
& INFANT NURSING REVIEWS, DECEMBER 2012
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Follow-up Care For the Neonatal Intensive Care Unit Graduate Lois Phillips-Pula, PhD, RN and Jacqueline M. McGrath, PhD, RN, FNAP, FAAN
Keywords: Discharge planning; Decision-making; Family centered-care; NICU graduate
The birth of a preterm infant can be devastating for both mother and family. The dreams associated with the perfect pregnancy and birth have been shattered. Simultaneously as mothers are working to recover, they are tasked with learning their way around a neonatal intensive care unit (NICU) where their infants will be cared for by someone other than themselves. NICU hospitalizations can last for several weeks to several months depending on the medical diagnoses, and even following discharge, NICU graduates have higher-than-normal hospital readmission rates (10–35%), especially during the first few months. 1,2 There are few studies in current literature that provide a clear view of the period immediately following NICU discharge, and those that do, do not provide an in-depth look at the emotional or cognitive needs of infants and their families. 3 The purpose of this discussion is to highlight the need for continued medical and developmental follow-up care for NICU graduates, and to explore ways to increase parents' participation in these visits.
Once an infant progresses enough to meet standardized benchmarks set by the NICU, a discharge date is chosen and parents come to the realization that their infant is coming home. As the discharge date approaches, parents report a dichotomy of feelings; joy that they will be able to take their infant home, and fear that they won't be able to sustain the current levels of care and keep their infant healthy. 10 They express unrealistic views of what NICU discharge means, underestimating the physical energy needed to provide round-the-clock care for a convalescing high risk infant, while also spending several days a week at various health care providers offices, labs and pharmacies to ensure that their infant is doing well. 10–13 It is not surprising then to learn that up to 30% of parents can fail to keep the first medical appointment following NICU discharge, and that this percentage increases as parents who attended the first visit often fail to return for their next appointment. 14 These numbers can be even lower for developmental follow-up visits,
Discussion Background Preterm birth is a serious and costly healthcare challenge in the United States, with an approximate cost of $51 600 per infant spent on medical costs, follow-up care, special education services, etc. 4,5 Although this financial cost is significant, the emotional toll on parents, can be immeasurable and can result in adverse mental symptomatology being exhibited for months or years after the birth. 6–9 From the Chamberlain College of Nursing, Arlington, VA; School of Nursing, University of Connecticut, Storrs, CT; and Nursing Research, Connecticut Children's Medical Center, Hartford, CT. Address correspondence to Lois Phillips-Pula, PhD, RN, Chamberlain College of Nursing, 2450 Crystal Drive, Arlington, VA 22202. E-mails: [email protected], [email protected], [email protected]. © 2012 Published by Elsevier Inc. 1527-3369/1204-0483$36.00/0 http://dx.doi.org/10.1053/j.nainr.2012.09.006
The necessity of follow-up care after NICU discharge is an important part of discharge teaching. Infants born earlier and at lower birth rates are surviving until discharge and are increasingly demonstrating cognitive disabilities—some of which might not be obvious until after the first years of life, when the child reaches school age. 15 These may be due in part to the numerous sequelae associated with the medical interventions performed while the child was in the NICU. 15 At-risk infants who do not attend follow-up appointments have been found to have higher rates of functional challenges when compared with their counterparts who did receive follow-up care. 14 In the United States there are no formalized medical guidelines for outpatient centers that work with premature infants and their families; however, most include similar basic services such as physical and developmental exams. 3,15 Additionally, clinics provide referrals and assist parents in finding the specialized care their infant needs, and are in a perfect position to share information with local NICUs regarding the outcomes of the care provided prior to discharge. 3,15
In a study of 218 mothers of preterm infants, 16 several factors were noted as important to parents when bringing an infant in for follow-up care. One concerned whether or not the health care provider (HCP) examining the infant explained the examination as it was being done. Another related their need for more information on developmental milestones as well as suggestions on how to best help their children achieve these milestones. A third expressed the caregiver's need for reassurance from their child's HCP that they were doing a good job and that progress was being made. Interestingly, the site location, specifically the staff at the different locations, was found to have the most significant impact on whether or not a parent continued to bring their infant back for follow-up visits. Parents indicated a preference for the clinics with smaller core staff members where they knew who was examining their child and why the examination was necessary. These preferences indicate the importance to parents of a personal connection with the professionals who work with their child and speak to an atmosphere where they are comfortable asking questions of others who they feel are also invested in their child's progress.
Conclusion Early identification and treatment of developmental delays in preterm infants leads to better outcomes for both mother and baby. This message needs to be reinforced to parents each time teaching occurs in the NICU. NICU nurses who have gained the trust of parents are in a key position to screen those parents who they feel might need extra help getting their infant to follow-up visits and to help them in making the appointments, working out transportation or other issues, etc. In some NICUs, parents are provided with an opportunity to meet the follow-up staff and this contact can increase their participation in follow-up visits. In addition, providing information about what will happen in the follow-up visit is also important; who will the child see, what exams will be included, and how this extra care will benefit the child and their family are important questions to be answered. After NICU discharge, contact should be made by clinic staff to remind parents of upcoming appointments and to emphasize the importance of these visits. When a parent misses an appointment, another call should be made to ensure first that all is well and second to offer times for another appointment. Unless we are willing to take the time to explore with parents why appointments are being missed, developing strategies and interventions to support and improve attendance will be futile.
References 1. Spicer A, Pinelli J, Saigal S, Wu Y, Cunningham C, DiCenso A. Health status and health service utilization of infants and
NEWBORN
mothers during the first year after neonatal intensive care. Adv Neonatal Care. 2008;8:33–41. 2. Escobar G, Joffe S, Gardner MN, Armstrong MA, Folck BF, Carpenter DM. Rehospitalization in the first two weeks after discharge from the neonatal intensive care unit. Pediatrics. 1999;104:e2. 3. Beal JA, Tiani TB, Saia TA, Rothstein EE. The role of the neonatal nurse practitioner in post NICU follow-up. J Perinat Neonatal Nurs. 1999;13:78–89. 4. Callahan WM. Prematurity and infant mortality: what happens when babies are born too early? Washington, DC: Committee on Energy and Commerce Subcommittee on Health; 2010. p. 1–5. 5. Armstrong F, Meis PJ. Clinical, family, and cost outcomes of preterm births; an overview of the problem and prevention opportunities. J Clin Outcomes. 2007;14:547–553. 6. Feeley N, Zelkowitz P, Cormier C, Charbonneau L, Lacroix A, Papageorgiou A. Posttraumatic stress among mothers of very low birthweight infants at 6 months after discharge from the neonatal intensive care unit. Appl Nurs Res. 2009;24:114–117. 7. Melnyk BM, Crean HF, Feinstein NF, Fairbanks E. Maternal anxiety and depression after a premature infant's discharge from the neonatal intensive care unit. Nurs Res. 2008;57: 383–394. 8. Gennaro S, Hennessy MD. Psychological and physiological stress: impact on preterm birth. J Obstet Gynecol Neonatal Nurs. 2003;32:668–675. 9. Jackson K, Ternestedt BM, Schollin J. From alienation to familiarity: experiences of mothers and fathers of preterm infants. J Adv Nurs. 2003;43:120–129. 10. Phillips-Pula L, Pickler RH, McGrath JM, Brown LF, Dusing SD. Caring for the preterm infant at home: A mother's perspective [dissertation]. Richmond, VA: Virginia Commonwealth University; 2011. 11. Bakewell-Sachs S, Gennaro S. Parenting the post-NICU premature infant. Am J Matern Child Nurs. 2004;29: 398–403. 12. Sneath N. Discharge teaching in the NICU: are parents prepared? Neonatal Netw. 2009;28:237–246. 13. Wigert H, Johansson R, Berg M, Hellstrom AL. Mothers' experiences of having their newborn child in a neonatal intensive care unit. Scand J Caring Sci. 2006;20:35–41. 14. Ballantyne M, Stevens B, Guttmann A, Willan AR, Rosenbaum P. Transition to neonatal follow-up programs. J Perinat Neonatal Nurs. 2012;26:90–98. 15. Sherman MP, Aylward GP, Shoemaker CT, Rosenkrantz T, Windle ML, Pramanik AK. Follow-up of the NICU patient. Medscape reference drugs, diseases & procedures. Web site, http://emedicine.medscape.com/article/1833812overview. Accessed July 11, 2012. 16. Wong SE, Butt ML, Symington A, Pinelli J. Parental satisfaction with quality of care in neonatal follow-up programs. J Neonatal Nurs. 2011;17:222–232.
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