Family-Centered Rounds in the Neonatal Intensive Care Unit

Family-Centered Rounds in the Neonatal Intensive Care Unit Gail M. Harris rs ris In neonatal intensive care units (NICUs) across the nation, true collaboration and shared decision-making with families in the care of their baby is not yet the standard of care. The overwhelming and often traumatic experience of being the parent of a critically ill infant can preclude such collaboration. The medical fragility and prolonged hospitalization of survivors can also negatively impact the parent-infant bond (Melnyk et al., 2006). Such adverse effects can be manifested as depression, dysfunctional parenting and anxiety disorders yielding vulnerable babies and vulnerable parents (Melnyk et al., 2006, p. e1415). Health care professionals in the NICU can help to counteract these effects by partnering with parents and families. Abstract: Promotion of family-centered care is common in neonatal intensive care units (NICUs) across the nation. Yet, true collaboration and shared decision-making with families in the care of their baby is not the standard of care. Family-centered rounds can provide the opportunity for this level of collaboration, but care must be taken to overcome barriers to family-centered rounds. DOI: 10.1111/1751-486X.12090 Keywords: family-centered care family-centered rounds neonatal intensive care NICU prematurity

Partnerships with families can help promote parent identity and a sense of control in a senseless, overwhelming and frightening environment (Gooding et al., 2011; Wigert, Hellström, & Berg, 2008). Trust is paramount in this equation and is contingent upon establishing and maintaining caring relationships (Swanson, 1993). Engaging parents as partners through family-centered rounds can provide the opportunity for true collaboration and shared decision-making, but only if health care providers recognize and understand the experience of parents. This entails creating family partnerships built on mutual respect and trust. This level of partnership is vital in the NICU and embodies the essence of patient centeredness (Berwick, 2009; McGrath, 2005). The nurse/ parent relationship is pivotal; trust prospers as nurses assume the roles of teacher, guardian and facilitator (Reis, Rempel, Scott, Brady-Fryer, & Van Aerde, 2010). This article presents evidence supporting the significance of caring relationships related to family-centered care principles in the NICU. The paper will also explore the evidence supporting pediatric family-centered rounds. The focus on pediatric family-centered rounds is relevant as presently there is limited evidence in the literature related to family-centered rounds in the NICU setting. Also, discussed are strategies for creating successful parent-provider partnerships through NICU familycentered rounds in the hope of building the evidence for this approach to care in the future. Background and Significance Family centeredness is a philosophy of pediatric care that encompasses the values and actions that recognize the significance of the family in the life of the child. Family-centered care principles promote family empowerment. These principles also encourage families to be active participants in care (Latta, Dick, Parry, & Tamura, 2008). The true origins of neonatal family-centered care stem back to the 1800s, when the majority of infants were born at home and cared for primarily by the mother and extended family (Gooding et al., 2011). This concept of care changed drastically with the turn of the century and the advent of technology that served to decrease neonatal mortality. Hospital births became the norm, and by the end of the 1940s, hospital births accounted for 99 percent of all births in the United States. The standard practice Gail M. Harris, DNP, RN, PNP-BC, is a neonatal nurse practitioner coordinator at Levine Children s Hospital at Carolinas Medical Center in Charlotte, NC. The author reports no conflicts of interest or relevant financial relationships. Address correspondence to: gmn6y5@mail. umkc.edu. Family-centered care principles promote family empowerment for hospital births during this time was separation of mothers from their husbands prior to birth and separation of mothers from their infants following birth, due to fears of infection. A paradigm shift emerged from that seen in the 1800s, with physician as authoritarian, nurses as gatekeeper to the infant, and families as bystanders (Gooding et al., 2011, p. 21). Fueled by the American consumer and the need for control, the merits of family-centered care began to re-emerge in the 1970s. Principles for family-centered care in the NICU followed in 1993 (Harrison, 1993). These principles beckoned open and honest communication between parents and professionals and advocated for parent access to the chart and rounds discussions (Harrison, 1993, p. 644). Support for family-centered rounds came in 2001. The Institute of Medicine in the hallmark text Crossing the Quality Chasm listed patient-centered care as one of six aims for the health care system in the 21st century (Committee on the Quality of Health Care in America, Institute of Medicine, 2001). In a 2003 joint policy statement, the American Academy of Pediatrics and the Institute for Patient and Family-Centered Care challenged health care providers to engage parents as partners and shared decision-makers through inpatient family-centered rounds (Committee on Hospital Care, 2003). Many health care providers have answered this call, and the evidence to support a pediatric patient-centered approach through family-centered rounds is emerging. This challenge comes at a critical time. A recent publication describes the dissatisfaction that many NICU parents feel due to limited involvement in their child s care and limited parentphysician communication (Gooding et al., 2011). Compounding this dissatisfaction is the volume of infants requiring this level of care and the length of hospitalization for many of these children. More than half a million babies born each year in the United States are premature (Centers for Disease Control and Prevention [CDC], 2012). Survival for many of these infants is contingent upon the care received in the NICU. Those at greatest risk for mortality and morbidity are of very low birth weight (CDC, 2010). 20 Nursing for Women s Health Volume 18 Issue 1

FIGURE 1 Swanson s Caring Theory in the NICU Maintaining belief: A belief that parents can be engaged partners in care. Knowing: By gaining an understanding of the parents experience, caring becomes personal. Being with: Doing for: Enabling: Providing physical, spiritual and comfort needs. Providing physical, spiritual and comfort needs. Educating, explaining and being an advocate. Source: Swanson (1993). Very-low-birth-weight infants weigh <1,500 g at birth. Typically born between 22 and 28 weeks gestation, these infants have a median length of hospital stay of 3 months (Callaghan, 2010, p. 1; Stoll et al., 2010). These tiny babies are at greatest risk of lifelong developmental and neurologic sequelae associated with preterm birth. They demand the concerted efforts of health care providers to engage their parents as partners and shared decision makers in their care (Gooding et al., 2011). Influence of Caring on Partnerships Caring is a nurturing way of relating to a valued other toward whom one feels a personal sense of commitment and responsibility and is crucial in the NICU (Swanson, 1991, p. 165). Caregivers, described as parents and health care providers alike, undergo a process in the NICU identified as caring, attaching, managing responsibilities and avoiding bad outcomes (Swanson, 1990, p. 64). Five domains further define this caring (see Figure 1) and comprise Swanson s Caring Theory. Caring is the foundation of respectful relationships between patients and health care providers and is contingent upon establishing a closeness or trust among caregivers (Swanson, 1990, 1991, 1993). The importance of caring in the NICU cannot be overemphasized. In a recent neonatal field study, researchers remarked that while it s unconscionable to refrain from providing technical care to a patient, caregivers often overlook parent relational care (Wigert et al., 2008). Parent interviews in two different February March 2014 neonatal units revealed several themes precluding their active participation in rounds. Parents from both units had the perception that rounds were less about the baby and more about the medical diagnosis. Additionally, both parent cohorts voiced that the convenience of the staff dictated when they could take care of their baby. The children belonged more to the ward then to the parents (Wigert et al., 2008, para. 35). The significance of the role of the nurse/parent relationship in establishing trust in the NICU has been the focus of additional nurse inquiries. A qualitative study on parent satisfaction demonstrated that the nurse/parent relationship was the most influential factor affecting the parents satisfaction with their NICU experience (Reis et al., 2010, p. 677). Another study demonstrated that a nurse/parent relationship built on trust is essential to help families face the challenges of prolonged hospitalization (McAllister & Dionne, 2006). A recent small qualitative study from the United Kingdom illustrated the importance of trust and transparent information exchange with parents of premature infants. Through parent interviews, the researcher identified the importance of staff recognition of the vulnerability of parents. Evaluating the experience of the parent helps to individualize care and fosters trust and confidence in the health care team (Gavey, 2007). In an additional nursery where family-centered rounds are the norm, a descriptive study using a questionnaire revealed the majority of parents of preterm infants chose the nurse over the neonatologist as the person who spent the most time ex- Nursing for Women s Health 21

plaining their child s condition. The investigators suggested that the open family-centered rounds process fosters nurse/physician interdisciplinary collaboration. This results in enhanced parent comfort with the nurse as their primary source for communication (Kowalski, Leef, Mackley, Spear, & Paul, 2006). Nurse researchers have also evaluated parent professional collaboration and decisionmaking in the NICU. A quasi-experimental study of the effectiveness of a tool to strengthen parent and professional collaboration found accuracy of parent understanding of medical information positively correlated with partnering and shared decision-making (Penticuff & Arheart, 2005). In a recent review of the literature, a 14-step process for information exchange toward shared decision-making suggests that effective partnerships between professionals and families are based on mutual respect, valuing of family expertise, fully shared information, and joint decision-making (McGrath, 2005, p. 94). The Creating Opportunities for Parent Empowerment (COPE) research further elucidates the power of information exchange (Melnyk et al., 2006). Investigators in this study evaluated the effect of information provision and an education and behavioral intervention to enhance parent-infant interaction and decrease parental stress in the NICU. This randomized control study found that participants had less maternal stress during hospitalization and less maternal anxiety and symptoms of depression following discharge. Mothers provided with interventions early in the hospitalization also reported having stronger parental beliefs, better parent-infant interactions and decreased lengths of stay for their premature babies (Melnyk et al., 2006, p. e1425). Influence of Family-Centered Rounds Partnerships Family-centered rounds are interdisciplinary work rounds at the bedside in which the patient and family share in the control of the management plan as well as in the evaluation of the process itself (Sisterhen, Blaszak, Woods, & Smith, 2007, p. 320). This means parent(s) are physically or virtually present for bedside management rounds whenever feasible and whenever desired by the parent. As individual comfort permits, parent(s) share information in the rounds dialogue. They help discuss what has transpired with their child in the most recent 24 hours and then through information exchange, help to create the daily plan or long range plan. Therefore, engaging parents in the process of rounds can promote an opportunity for information exchange and partnering in decision-making while fostering trust (Committee on Hospital Care, 2003). Benefits of Family-Centered Rounds In a prospective observational and survey-based study of familycentered rounds, parents reported feeling more involved in care with improved understanding of their child s condition (Cameron, Schleien, & Morris, 2009). A recent quality improvement case report noted improvement in discharge timeliness with family-centered rounds (Muething, Kotagal, Schoettker, Gonzalez del Rey, & DeWitt, 2007). In a quasi-experimental design study of family-centered rounds, families affected medical decision-making 90 percent of the time (Rosen, Stenger, Bochkoris, Hannon, & Kwoh, 2009). In the same study, staff reported feeling more prepared to assist families, had a better understanding photo bradleyolin/flickr.com 22 Nursing for Women s Health Volume 18 Issue 1

Engaging parents in the process of rounds can promote an opportunity for information exchange and partnering in decision-making while fostering trust of the medical needs of the patients and had an increased sense of collaboration through family-centered rounds. In an extensive review of the literature on the use of familycentered principles in the intensive care setting, providers and patients perceived that patient-centered rounds improved communication and collaboration (Davidson et al., 2007). Canadian and American hospitalists share this sentiment. Seventy-two percent of respondents to the Pediatric Research Inpatient Setting (PRIS) network survey believed family-centered rounds enhanced team communication (Mittal et al., 2010). A qualitative-descriptive study found parents also felt the most valuable aspect of family-centered rounds was communication (Latta et al., 2008). During semi-structured interviews, parents repeatedly relayed the importance of asking and responding to questions, learning firsthand what was happening and learning about the daily plan of care and future goals/plans from all disciplines collectively. Parents also felt that nurses presence during rounds enhanced communication (Latta et al., 2008). Parents satisfaction with family-centered rounds is another common theme in the literature. In a recent prospective observational study, 98 percent of parents wanted to be present for rounds and reported high satisfaction with the process (Aronson, Yau, Helfaer, & Morrison, 2009). In another study, 81 percent of parents indicated an overall increased satisfaction with their child s care when they participated in familycentered rounds (Cameron et al., 2009). A before-and-after survey on family-centered rounds in a pediatric intensive care unit (PICU) found both parents and providers perceived family-centered rounds positively (Kleiber, Davenport, & Freyenberger, 2006). In another survey-based study focused on family-centered rounds in the PICU setting, 90 percent of parents wanted to be present for family-centered rounds (McPherson, Jefferson, Kissoon, Kwong, & Rasmussen, 2011). Several other studies noted improved staff satisfaction related to family-centered rounds. Investigators in a neonatal setting used the valid and reliable Collaboration and Satisfaction about Care Decisions (CSCD) questionnaire to evaluate staff perceptions of family-centered rounds in their survey-based study (Voos et al., 2011). The authors found neonatal fellows and neonatal nurse practitioners had high staff collaboration February March 2014 and satisfaction scores. An additional study suggests that nursing staff satisfaction with family-centered rounds may also improve nursing retention (Rosen et al., 2009). Challenges to Family-Centered Rounds While the benefits of pediatric family-centered rounds are evident in the literature, barriers also exist. The effect of familycentered rounds on resident education is the focus of a few recent studies. A prospective observational study suggests that while the majority of resident physicians (85 percent of those surveyed) preferred parents to be present for rounds, 52 percent of these residents also believed there to be a decrease in resident teaching with the process (Aronson et al., 2009). Resident physicians are not alone in this perception. Attending physicians enrolled in a recent study also believed that parent presence during rounds interfered with resident education (Cameron et al., 2009). Sixty-seven percent of health care providers in a recent PICU study also shared this sentiment (McPherson et al., 2011). Medical students perceived that family-centered rounds created barriers to teaching as well, but had a slightly different perspective. A pre- and postclerkship study specifically focused on the perceptions of medical students related to family-centered rounds (Cox et al., 2011). These investigators found information sharing in the presence of families was a commonly voiced concern. This concern encompassed presenting information in understandable terms, comfort in doing so and having the ability to respond to questions from attending physicians during family-centered rounds. Despite concerns, investigators reported that medical students looked favorably upon familycentered rounds and conveyed a better appreciation of the benefits of the process postexposure (Cox et al., 2011). Educating medical students about family-centered rounds might also help allay concerns. One group of researchers recommended the use of Web-based video vignettes as resources (see www.cincinnatichildrens.org/professional/referrals/patientfamily-rounds/videos/) to teach students (Cox et al., 2011). Two other recommendations to facilitate teaching during familycentered rounds described in the literature included asking Nursing for Women s Health 23

Parent preparedness also demonstrates the caring commitment to the family necessary for successful family-centered rounds permission from the family to teach during family-centered rounds and the use of hypothetical examples when teaching (Muething et al., 2007). Another perceived barrier is confidentiality. A neonatal survey-based study identified concerns related to confidentiality (Bramwell & Weindling, 2005). In the study nursery, infant beds were relatively close together. Some parents voiced distress about the potential of overhearing the information of others. Some parents also voiced concerns of others overhearing them during ward rounds. Confidentiality concerns are not unique to the NICU. Studies in the literature on pediatric family-centered rounds also discuss this barrier. Parent confidentiality concerns varied among parents in one study but were more heightened on the day of admission (Aronson et al., 2009). Thirty-three percent of respondents in the PRIS survey also perceived confidentiality as a barrier (Mittal et al., 2010). Seventy-seven percent of PICU providers voiced concern about the potential of confidentiality breach during family-centered rounds when surveyed (McPherson et al., 2011). The last perceived barrier to family-centered rounds identified in the literature relates to efficiency. The PRIS survey reported that 34 percent of hospitalists believed the duration of family-centered rounds was longer compared to traditional rounds (Mittal et al., 2010). Sixty-five percent of health care providers in a PICU survey perceived inefficiency as a very negative outcome (McPherson et al., 2011, p. e259). Another study reported that family-centered rounds took 20 percent longer than traditional rounds (Muething et al., 2007). These investigators also commented that although family-centered rounds took longer, they were ultimately more efficient through improved discharge timeliness. Addressing barriers to family-centered rounds before beginning the process is essential. Brainstorming solutions facilitate family-centered rounds through parent preparedness. Parent preparedness also demonstrates the caring commitment to the family necessary for successful family-centered rounds. Strategies to Prepare Parents in the NICU Families need to understand that family-centered rounds conversations may be overheard. Providing families with information related to the risks and allowing them to make a choice might allay confidentiality concerns (Muething et al., 2007). Other measures to protect the child s and family s confidentiality during family-centered rounds suggested in the literature include moving rounds to another location to meet the needs of the patient and family, asking other families to leave briefly, or using discretion with the use of family-centered rounds on any given day (Aronson et al., 2009; McPherson et al., 2011). Preparation related to the process is also important. The majority of parents in a PICU study choosing not to participate in family-centered rounds did so based on fears that the process would increase their confusion and anxiety (Cameron et al., 2009). NICU parents responded that they lacked information about the purpose and timing of rounds (Bramwell & Weindling, 2005). One method to prepare parents for family-centered rounds includes the use of an informational pamphlet (see Figure 2). A study by Kleiber et al. (2006) suggested the importance of describing the role of the parent on rounds in the brochure. Another study suggested detailing the nuances of the teaching environment related to family-centered rounds (Aronson et al., 2009). The literature describes other parent preparedness tools. A recent review article on best practices for family preparedness and communication recommends the use of sort cards (Yee & Ross, 2006). Sort cards are index cards with key words or phrases that may help parents categorize and prioritize their information needs. Choice is another crucial aspect to consider for parent preparation. It s essential that parents understand that while there s an open invitation for full partnership in family-centered rounds, they have a choice regarding participation. Parents must feel support for their decision to participate or not participate (Cameron et al., 2009). Parents preferred level of involvement in family-centered rounds each day can be facilitated by posting a note or choice card on their child s hospital door (Muething et al., 2007). In the nonsingle room NICU setting, the bedside white-board can serve as the location for the choice card. Family preparedness also involves educating health care professionals to use lay terminology, avoid jargon and honor 24 Nursing for Women s Health Volume 18 Issue 1

FIGURE 2 Sample Educational Pamphlet Family-Centered Rounds in the Neonatal Intensive Care Unit (NICU) Having a baby in the NICU can be stressful. Studies show that parents who are more involved in their child s care can feel less stress. We invite you to help plan your baby s care with us by being a part of daily patient rounds. Daily patient rounds in the NICU is the time when nurses, doctors, nurse practitioners and respiratory therapists come together to talk about the care of each baby in the nursery. Each baby gets a plan of care for the day during these rounds. When parents participate, rounds are called family-centered rounds. Partnering with you in the care of your baby Studies show parents are more pleased with their child s care when they have a chance to be part of family-centered rounds. the perspective and cultural needs of the family (Gooding et al., 2011). Health care professionals should also employ two-way listening and repetition, allowing sufficient time following family-centered rounds to answer parent questions and to entertain further discussions (Cameron et al., 2009; Yee & Ross, 2006). It s also essential for staff to have an appreciation of what it s like to be a parent in the NICU. Day-to-day information exchanges with multiple caregivers with various personalities and communication skills can be overwhelming for parents (McGrath & Hardy, 2008). A recent study also discusses the unique challenges associated with NICU family conversations. Recommendations include educating health care providers to consider the family s perspective when conversing. Making a human/relational connection with parents facilitates this process (Meyer et al., 2011). The NICU is an overwhelming environment laden with the highest forms of technology to save the tiniest of lives. Despite the technological advancements of the 21st century, there will never be a substitute for the protection of the mother s womb, the definitive caregiver to the child (Swanson, 1990). Health care professionals in the NICU can help parents by attempting February March 2014 to understand the reality of being a parent of a critically ill infant. To do this, they must imagine themselves as a mother, who suddenly finds the warmth and security of their child within the womb replaced with the sights, sounds and sensations of a foreboding maze of complex machinery. Alternatively, health care professionals must also envision themselves as a father who as protector of his family suddenly finds himself reduced to a powerless and impotent bystander. Conclusion The journey to help parents in the NICU must begin with a belief in the resilience of the human spirit to overcome adversity (Swanson, 1991). Next, we as nurses must attempt to know or imagine what the parent s experience is like. We must listen and be attentive to parents needs. We must identify measures to inform, guide and empower parents to be caregivers with us (Swanson, 1991). The capacity to relate to parents on this level must be interwoven into every action. Family-centered rounds can equip parents with information and tools to be successfully engaged partners in care, but engagement won t occur unless trusting relationships exist. Participation Nursing for Women s Health 25

References Aronson, P. L., Yau, J., Helfaer, M. A., & Morrison, W. (2009). Impact of family presence during pediatric intensive care unit rounds on the family and medical team. Pediatrics, 124(4), 1119 1125. doi:10.1542/peds.2009-0369 Berwick, D. M. (2009). What patient-centered should mean: Confessions of an extremist. Health Affairs, 28(4), w555 w565. doi:10.1377/ hlthaff.28.4.w555 Bramwell, R., & Weindling, M. (2005). Families views on ward rounds in neonatal units. Archives of Disease in Childhood Fetal and Neonatal Edition, 90(5), F429 F431. doi:10.1136/adc.2004.061168 Callaghan, W. M. (2010, May 12). Prematurity and infant mortality: What happens when babies are born too early? Washington, DC: U.S. Department of Health & Human Services. Retrieved from www. hhs.gov/asl/testify/2010/05/t20100512a.html Cameron, M. A., Schleien, C. L., & Morris, M. C. (2009). Parental presence on pediatric intensive care unit rounds. Journal of Pediatrics, 155(4), 522 528. doi:10.1016/j.jpeds.2009.03.035 Family-centered rounds can equip parents with information and tools to be successfully engaged partners in care, but engagement won t occur unless trusting relationships exist can strengthen parents sense of control and promote their developing parent identity, but parents won t participate unless they perceive genuine caring from the team (Wigert et al., 2008). Similar to Nightingale s legacy to nursing, the goal in the NICU is to keep or put patients in the best condition for nature to act upon them (Swanson, 1990, p. 69). In the NICU, a philosophy of care must exist that also considers the parent as patient. Creating a culture of caring in the NICU that supports the parent patient through the family-centered rounds process provides the best chance for the best condition for the most vulnerable among us. NWH Centers for Disease Control and Prevention (CDC). (2010). Neonatal intensive care unit admission of infants with very low birth weight 19 states, 2006. Morbidity and Mortality Weekly Report (MMWR), 59(44), 1444 1447. Atlanta, GA: Author. Retrieved from www.cdc.gov/mmwr/preview/mmwrhtml/mm5944a4. htm?s_cid=mm5944a4_w Centers for Disease Control and Prevention (CDC). (2012). Preterm birth. Atlanta, GA: Author. Retrieved from www.cdc.gov/ reproductivehealth/maternalinfanthealth/pretermbirth.htm Committee on Hospital Care. (2003). Family-centered care and the pediatrician s role. Pediatrics, 112(3), 691 697. 26 Nursing for Women s Health Volume 18 Issue 1

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