- CRCT;
- cluster randomized controlled trial
- FICare;
- Family Integrated Care
Abstract
When an infant is admitted to the neonatal intensive care unit (NICU), the ability of parents to spend time with and provide meaningful care for their infant is often restricted. Added to this is the distress parents may be feeling as a result of the premature birth of their child, as well as the intimidating and technological environment of the NICU. These factors strain the development of an optimal parent-infant relationship, which can have effects that last beyond discharge. A solution to this problem is to offer parents the opportunity to be the primary caregivers for their infant in the NICU. This article reviews the development and theory of the care-by-parent model, including examples of successful programs, discusses the benefits and challenges of the model, and looks to the future of care in the NICU.
Educational Gaps
Involving parents in the care of their infant in the neonatal intensive care unit (NICU) empowers parents and gives them control of the situation, which leads to a better experience for the parents, their infant, and the NICU staff.
Parents with prior experience of the NICU have a wealth of information and insight on how best to involve and support parents in the care of their infant in the NICU. As such, involvement of these “veteran” parents should be encouraged through the creation of NICU parent associations, committees, and support groups.
Objectives
After completing this article, the reader should have gained an understanding of the:
Development of the care-by-parent model.
Evidence that supports care by parent in the neonatal intensive care unit as the optimal model of care.
Barriers to implementation of the care-by-parent model.
Future directions for the care-by-parent model.
Introduction
Ensuring that preterm infants (born at <37 weeks’ gestation) get the best start to life is challenging for both health care professionals and parents. When an infant is admitted to the neonatal intensive care unit (NICU), the ability of parents to spend time with and provide meaningful care for their infant is often restricted. Added to this is the distress parents may be feeling because of the premature birth of their child, as well as the intimidating and technological environment of the NICU. (1) These factors strain the development of an optimal parent-infant relationship, which can have effects that last beyond discharge. (2)
The development of the family-centered care approach during the past 40 years has gone a long way toward addressing the issue of parental involvement in the care of their infant in the NICU. Within the family-centered care model, the patient is treated within the context of his or her family, and family members provide emotional, social, and developmental support. (3) However, in the NICU the role of parents is often still that of a passive observer. The needs and beliefs of parents are most often taken into account, and opportunities for skin-to-skin care, breastfeeding, and developmental care are made available, but parents remain visitors at their infant’s bedside beholden to the health care team for information and acceptance. (4) As a result, parents report feeling isolated, stressed, and unprepared for the discharge of their infant. (5)
To address this problem, a new model of patient and family-centered care in the NICU is evolving—care by parent. In the care-by-parent model, parents are supported to become the primary caregivers for their infant, with nursing staff educating and guiding parents and providing more specialized aspects of care, such as administration of intravenous fluid and medications. (6) This article reviews the development and theory of the care-by-parent model, including examples of successful programs, discusses the benefits and challenges of the model, and looks to the future of care in the NICU.
Development of the Care-by-Parent Model
Before the development of hospital-based perinatal care, infants were born at home and looked after by their parents and midwives. With advances in the technology available to provide care for sick and preterm infants in the early part of the 20th century, care became medicalized and parents were removed from the equation. The push for a return to patient and family-centered care began in the 1970s and continues to this day. (3) In parallel with the consolidation of family-centered care as a philosophy of care, various groups are developing approaches that take this philosophy to its ultimate goal. Rather than encouraging parent participation in the care process, these physicians are ensuring that parents are indeed central to the care process.
Born out of a shortage of nursing staff in 1979, the neonatal unit at Tallinn Children’s Hospital in Estonia operates a program in which the leading principles are “24-hour care by the mother, with assistance from nurses and hospital staff as necessary; promoting breastfeeding whenever possible; minimal use of technology; and little contact between the baby and medical and nursing staff.” (7) The concept behind this approach is that there is a psychological and biological connection between mother and infant in the early weeks of life, which should not be broken by separating the mother from her infant, or the use of aggressive, high-technology medical therapy and contact with a constant rotation of medical staff. (7) In some instances, mothers are unwilling or unable to care for their infant and the infants are cared for by nurses. A comparison of the 2 groups revealed that preterm infants cared for by their mothers gained considerably more weight than preterm infants cared for by nurses. (7)
Other published examples of this “rooming-in” style of care by parent, where mothers are admitted with their infant and expected to provide most of the infant’s care, include units in New Delhi, India; (8) Karachi, Pakistan; (9) Ankara, Turkey; (10) Stockholm, Sweden; (11) Grenoble, France; (12) and Jinan, China. (Li et al, unpublished data, 2014) In all cases, neonatal outcomes were reported to be better when mothers remained in the hospital and provided care for their infant. The documented improvements in outcomes include decreased length of stay; (8)(11)(12) decreased hospital readmission; (9) better infant outcomes, such as decreased need for nasogastric tube feeding; (11) and better parental outcomes, such as improved confidence in caring for their infant. (12) When parents are not able to room-in with their infant, additional studies in India have found that exposing infants to at least 4 hours a day of “kangaroo mother care,” where the mother provides continuous skin-to-skin care as much as possible with an emphasis on breastfeeding, also results in better weight gain, earlier hospital discharge, and higher exclusive breastfeeding rates. (13)(14) However, these programs are all aimed at preterm infants who are medically stable, not receiving any type of respiratory support, and for the most part receiving level II neonatal care, (15) where parents are able to room-in with or spend extended periods holding their infant. When infants are born at less than 32 weeks’ gestation and admitted to a level III NICU, they require more complex care and rooming-in is often not possible; thus, integrating parents into the care of their infant is more challenging.
A new program, called Family Integrated Care (FICare) was developed based on the principles of the Estonian model, was pilot tested, (16) and is currently being evaluated in 20 level III NICUs across Canada in a cluster randomized controlled trial (CRCT). (17) For the FICare CRCT, eligible infants are those born at less than 33 weeks’ gestation and admitted to a level III NICU who do not require mechanical ventilatory support but may still continue to receive continuous positive airway pressure. Their parents are expected to spend at least 8 hours a day in the NICU and are provided with daily education, (18) psychosocial support, and physical support so that they can provide as much of their infants’ care as they are able (Figure 1). Nursing staff receive training (19) and families have access to facilities, such as a parent lounge and food preparation area, so that they can spend prolonged periods in the NICU. In the pilot study of FICare, infants whose parents enrolled in the program had improved weight gain compared with control infants. There was also an 80% increase in breastfeeding at discharge and a 25% decrease in parental stress (as measured using the Parental Stress Survey: NICU) (20) between admission and discharge for mothers who participated in the program. Nosocomial infections and critical incident reports were also lower in the FICare group, but the study was not powered to detect statistical significance between these secondary outcomes. (16) The FICare CRCT will identify whether these results are reproducible on a wider scale. If successful, the trial could provide the impetus to make care by parent the standard of care in level III NICUs across Canada.
In the Family Integrated Care program, a care-by-parent model currently being evaluated in Canada, parents are given education and support so that they can be the primary caregivers for their infant in the neonatal intensive care unit. The parents provide as much of their infant’s care as they are able, such as skin-to-skin care (A), changing diapers, bathing their infant, and administering oral medications. Parents also monitor their infant’s progress, including taking temperature measurements (B) and actively participating in daily decision making (C).
Supportive Research
Although the care-by-parent model of neonatal care is only just gaining traction, there is a large body of research that supports the approach in theory. First and foremost is the extensive literature on the importance of the parent-infant relationship to child development and mental health, particularly in the case of preterm infants. Central to this body of research is Bowlby’s theory of attachment, which suggests that infants have an in-built need from birth to form emotional attachments and that to separate parents from their child is detrimental to the health and well-being of the infant. (21) Add to this the stress that parents experience when their infant is admitted to the NICU, which can be alleviated with psychosocial and educational support and interaction with their child, and it makes great sense to ensure that parents are integrated into the care of their infant in the NICU.
Attachment of an infant to its mother begins in utero during the last trimester of pregnancy, as the auditory and olfactory systems become functional. (2) For an infant born at term, studies have found that voice and maternal odor are important stimuli that shape the infant’s response to their environment in the first few days after birth. (22)(23)(24)(25)(26) In return, the infant’s responses elicit caregiving from the mother and the development of a reciprocal relationship that supports infant neurodevelopment and learning. (2) Even though a preterm infant’s olfactory and auditory systems may still be developing, the presence of these same maternal stimuli are just as important, if not more so. For example, stimulating preterm infants with their mother’s voice, via a recording through a speaker or bone conduction or live speaking and singing, has been found to lower heart rate; (27)(28) result in a more stable skin color; (28) improve oral feeding rate, volume intake, feeds per day, and time-to-full oral feedings; (29)(30) improve oxygen saturation; (27) decrease the number of critical events (hypoxemia, bradycardia, apnea); (27)(31) and produce a calm alert state. (27)(32) A case-control study by Picciolini et al (28) also examined other neurobehavioral outcomes at term age, 3 months’ corrected age, and 6 months’ corrected age after exposure to maternal voice via bone conduction in the NICU. At term age, visual attention performance and quality of general movements were better in the treatment group compared with control. At 3 months’ corrected age, neurofunctional assessment scores were higher in the treatment group, but this difference could not be detected at 6 months’ corrected age. (28)
Similar to the effect of maternal voice, the use of maternal breast milk odor during gavage feeding resulted in infants transitioning to oral feeding 3 days earlier, (33) and exposing infants to breast milk odor immediately before an early breastfeeding attempt led to longer sucking bouts, more bursts of sucking movements, and increased milk consumption. (34) In both these studies, the infants exposed to breast milk odor spent significantly less time in the hospital than control infants. (33)(34) The soothing effect of breast milk and other pleasant odors has also been tested as a method of relieving pain in premature infants undergoing procedures such as heel lancing and resulted in lower pain scores and less cortisol release. (35)(36) However, caution should be exercised in this area with repeated application of isolated stimuli because the infant may learn to associate maternal odor with painful events.
The presence of parents in the NICU also facilitates greater amounts of skin-to-skin care and enables easier access to breastfeeding support. The importance of skin-to-skin care should not be underestimated. As well as allowing parents to spend time strengthening their relationship with their infant, studies have found that skin-to-skin contact can be used to mitigate infant pain and stress during various NICU procedures. (37)(38) In the long term, regular and sustained provision of skin-to-skin care in the NICU has been reported to result in increased autonomic functioning and maternal attachment behavior, reduced maternal anxiety, and enhanced cognitive development and executive function at age 10 years. (39) Even during the period between birth and reaching term corrected age, electroencephalogram measurements reveal that skin-to-skin care accelerates the neurophysical maturation of preterm infants. (40)(41)
The significant stress that parents undergo when their child is born preterm also serves to disrupt infant-parent attachment (7) and result in adverse outcomes. In particular, parental stress and anxiety within the NICU, as well as after discharge, have been found to affect child behavioral and cognitive outcomes. (42)(43)(44) Parents also report a diminished sense of competence after admission of their infant to the NICU as a result of barriers raised by the technological environment, the vulnerability of their child, and feelings of helplessness because they do not feel able or qualified to care for their infant. (1)(5) As such, facilitating greater parent-child interaction for preterm children has been reported to improve significantly children’s behavior and cognitive development, (45)(46)(47) and allowing mothers to care for their infants decreases stress related to feelings of incompetence. (48)
Challenges
Having parents as the primary caregivers for their infant in the NICU raises many challenges because it often requires a complete shift in the NICU culture. Not only do parents need a comprehensive education program that enables them to be competent in caring for their infant in the NICU, but the nursing staff members also need training to reorient them to their roles as educators, coaches, and facilitators. The responsibility for care should always remain with the medical staff, but the nursing role becomes that of reconnecting parent and infant by guiding parents in the provision of care rather than simply providing task-oriented patient care. As such, any nurse training needs to include information on the parent experience in the NICU, the therapeutic effect of parent presence in the NICU, and how to support parental competency. (19) The involvement of parents also has to be supported by unit policies and facilities that allow parents to spend an extended time in the NICU, for example, provision of a parent lounge, parents rooming-in with their infant, comfortable chairs at each bedside, sufficient breast milk pumping equipment, unrestricted visiting hours, and involvement of parents in medical rounds.
Each of these aspects of the care-by-parent model can represent a significant change to the status quo and may come with an upfront financial cost. As such, it is important to take a multidisciplinary approach that includes parents in the process and generates buy-in from all stakeholders. The involvement of parents who have had an infant in the NICU is particularly important because they bring a unique perspective to the table. Only parents can really describe how important the care-by-parent model is and offer insight on how to involve parents in their infant’s care. On the subject of costs, although care by parent may require up-front investment, it may also result in significant costs savings. To date no data have been published on the effect of the model on health care costs, but the positive outcomes recorded, such as decreased length of stay, are likely to significantly reduce costs. In addition, having parents as the primary caregivers for their infant allows nursing staff to focus on providing more technical care for the sickest infants and make more efficient use of their time.
Future Directions
Current evidence indicates that the integration of parents into their infant’s neonatal care is important to the infant’s well-being and outcome in the NICU. Because most of these published studies involve single sites or small groups of sites, it is important to assess this method of care within the context of larger groups of NICUs. The FICare CRCT in Canada is one step in this direction, but additional studies are needed in other countries and settings. In addition, the longer-term effects of the model of care need to be studied, particularly in regard to behavioral and neurodevelopmental outcomes in childhood and beyond. Further evidence of the effectiveness of care by parent in the NICU will provide the impetus for increased endorsement of this approach, but this needs to be paired with evidence of the presumed cost-effectiveness of the model and effective tools for knowledge translation to varying NICU environments to ensure robust implementation.
American Board of Pediatrics Neonatal-Perinatal Content Specification
Know the importance of a system that provides comprehensive, coordinated, family-centered early intervention services.
Footnotes
Author Disclosure
Dr Warre disclosed no financial relationships relevant to this article. Dr Lee developed the concept of the Family Integrated Care program and in conjunction with Dr O’Brien is leading a randomized controlled trial of the program. Dr O'Brien also disclosed she serves on an advisory board for AbbVie. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device.
- Copyright © 2014 by the American Academy of Pediatrics
References
In this issue
