Transition to home from the newborn intensive care unit: applying the principles of family-centered care to the discharge process

Increasingly newborn intensive care units (NICUs) are embracing family-centered care principles. Family-centered newborn intensive care requires that families are welcomed as partners in caregiving and decision making. Traditionally, discharge planning has been done without significant family involvement. In fact, parent participation in caregiving may still be limited until discharge is imminent. By increasing parental involvement in caregiving throughout hospitalization and working with families to facilitate the discharge process, parents may emerge from the NICU experience with increased competence and confidence in infant caregiving. This article reviews common discharge practices and processes in the NICU and offers strategies to assist nurses in integrating a family-centered approach into discharge planning.     

Parental support in neonatal intensive care units: a cross-cultural comparison between New Zealand and Japan

This is a cross-cultural comparative study involving both quantitative and qualitative data analyses. This study examines sources of parental stress in the two neonatal intensive care units (NICUs) located in New Zealand and Japan and explores how cultural norms of NICU care environments influence parental stress-related experiences and nursing support. The three main sources of data collection were the following: a NICU staff interview, parental interview, and parental questionnaire survey, the PSS: NICU. Thirty-one pairs of parents in each NICU (N = 121) participated in this study. The differences between the two NICUs in terms of the NICU care environment and sources of parental stress within the NICU contexts were identified, highlighting NICU characteristics associated with the sources of stress in the two NICUs. Recognition of the norms of NICU care environments that may hinder parent-staff communication is an important element of NICU nursing practice.     

Parenting preemies: a unique program for family support and education after NICU discharge

Research supports the importance of family-centered care in the neonatal intensive care unit (NICU). The significance of continuity in family-centered care beyond the NICU has recently gained attention. Parenting Preemies is a unique and easily replicated postdischarge program designed to ease the transition from hospital to home for NICU graduates and their families. The comprehensive program provides an effective means to demonstrate ongoing, family-centered, and cost-effective outreach after discharge. The specific target population includes premature, low birth-weight, and special needs infants, and their parents. A multidisciplinary team utilizes evidenced-based principles to facilitate an education and support group, in conjunction with home visits, as the foundation for promotion of optimal outcomes for preemies and their parents. Participant satisfaction is consistently positive.     

A Philosophy of Care for a Neonatal Intensive Care Unit

Crisis reactions, a stressful environment, infant care practices, and nurse behavior may cause difficulties in entering the natural parental role for parents of infants who are admitted to a neonatal intensive care unit (NICU). In connection with discussions in the Uppsala NICU on what constitutes good care, a philosophy of care, based on Callista Roy's adaptation model, was formulated for the purpose of providing developmentally supportive, family-centered care, and for defining good care and the professional nurse role. The philosophy describes the infant's needs and environment. Caring activities focus on support of the infant's and his parent's roles and self-concept in their progress towards independence from professional assistance. The philosophy is an essential component in the introductory program which integrates newly recruited personnel from different disciplines into the unit. It is presented as a suggestion of how a model-based philosophy of care can be formulated by operationalization of the theoretical concepts of a nursing model.     

Coping and caring in different ways: understanding and meaningful involvement

The experience of having a baby in the neonatal intensive care unit (NICU) is frightening and creates uncertainty for families. Each parent copes with the challenge in his or her own way. Nurses can play an important role in helping parents find their own unique paths to meaningful involvement in caring for their infant by utilizing five frameworks in the assessment and planning process. The frameworks include: (a) family-centered care, (b) a cultural context, (c) loss and grief issues, (d) personal style considerations, and (e) reflections on the caregiver's own value system. The stories of three families illustrate individual coping styles and the application of these frameworks in understanding family coping in the NICU. A list of suggested questions identifying family background and strengths can assist in applying the five frameworks in assessment. A list of areas of potential parental involvement can assist nurses in helping families determine the ways in which they would like to be involved in their infant's care while in the NICU.     

Facing challenges to family-centered care. II: Anger in the clinical setting

Common sources of parental anger in the hospital setting include visiting restrictions, an unexpected change in the child's health status, confusion resulting from conflicting or insufficient information provided by the staff, and feeling undervalued in the care of their infant or child. Principles of family-centered care can be applied to develop strategies that assist nurses in handling these stressful situations in a professional and therapeutic manner. Nurses' own defensiveness and anger in response to parental anger can also be eased by use of these techniques as well as by mentoring, education, and support.     

Ethical Considerations in the Neonatal Intensive Care Unit

Advances in treatment and technology capabilities, coupled with the ability to care for younger, smaller, and sicker neonates contribute to ethical conflicts in the neonatal intensive care unit (NICU). Although the ethical approach to care is sometimes inconsistent, it is important for clinicians to develop and adopt a framework for ethical decision-making in the NICU. Providers need to understand the four ethical principles of autonomy, beneficence, nonmaleficence, and justice and apply these principles to clinical decision-making about care in the NICU. Ethical decision-making must be family-centered and respectful of cultural differences. Providers must comply with professional ethical guidelines as well as government and legal mandates. Adopting ethical frameworks for neonatal care ensures a more holistic approach to care in the highly technical environment of the NICU.     

Room for family-centered care – a qualitative evaluation of a neonatal intensive care unit remodeling project

The physical layout of a Neonatal Intensive Care Unit (NICU) seems to play an important, yet disregarded role in establishing family-centered care (FCC). Based on two focus group interviews this article qualitatively evaluates how a physical layout intervention changed matters for parents and health personnel. Collectively, the participants experienced three interior design layouts: open space design, modified rooms and smaller rooms. Inspired by grounded theory, the article explains how establishing smaller rooms equipped with a parent bed placed next to the sick infant provided “room for family-centered care” in a double sense: it reduced the parents’ burden by providing space for them to come to terms with the situation and to start the bonding process; it allowed professionals to commit to meeting increased demands. The study concludes that smaller rooms enhance FCC in a NICU when personnel are prepared to accept the challenge.     

Parental support needs during pediatric resuscitation: A systematic review

BackgroundResuscitation of a child is one of the most critical times that parents need support, and parental support is fundamental to providing family-centered care in high acuity settings. The aim of this systematic review was to appraise and synthesize studies conducted to examine the support needs of parents during resuscitation of their child from their own perspective.MethodThe PRISMA model guided the systematic literature search of Google Scholar, PubMed, Cochrane, Scopus, and Ovid for studies published until the end of 2020. Keywords used were: family support, family-centered care, family needs, resuscitation, CPR, children, neonatal, pediatric, family presence, family-witnessed, and parents.ResultsThere were 787 articles located. After reviewing for relevancy, 21 articles met criteria and were included in this review. Findings indicate the needs of parents during resuscitation of their child include: Spiritual and cultural support; Communication with the child before and after resuscitation; Professional behavior from staff; Receiving information; Presence at resuscitation; Trust in the resuscitation team; and Having physical and mental needs met.ConclusionParents have differing support needs when their child is resuscitated in the hospital, and meeting these needs is critical for providing family-centered care.     

以家庭为中心儿科护理模式创建与评价

目的：探索以家庭为中心儿科护理模式,提升患儿及家长的满意度和患儿安全。方法：创建以家庭为中心儿科护理模式,包括制定以家庭为中心儿科护理政策,配备数量充足和资历合格的护理人员,明确总责护士和责任护士的具体职责,对临床护理人员进行以家庭为中心儿科护理理论和实践的培训与考核,研制工具以评价护理人员执行以家庭为中心护理措施的情况,评价以家庭为中心儿科护理模式的实施效果。结果：患儿家长对以家庭为中心儿科护理模式的总体满意度为93.5%,患儿安全指标如给药错误发生率、跌倒/坠床发生率明显下降。结论：把以家庭为中心儿科护理理念转化为行动,深入到儿科护理实践的方方面面是一个长期持久的过程。而在患儿危机时刻,让家长和孩子在一起更是一个巨大的挑战,需要医护人员和患儿家长共同努力。     

Assessment of family-centered care policies and practices for pediatric patients in nine US emergency departments.

INTRODUCTION: Family-centered care recognizes the integral role of the family in the health and well-being of the pediatric patient. However, implementing a family-centered care approach often requires significant philosophical, practice, and environmental changes. A self-assessment inventory of family-centered practices can identify areas for change. METHODS: ENA conducted a validation study on an instrument used to assess family-centered care in the emergency department. Nine emergency departments of varying demographics used the Family-centered Care Self-assessment Inventory to evaluate their family-centered care practices. The inventory is organized into 7 sections: (1) vision, mission, and philosophy of care; (2) family support; (3) information and decision making; (4) services coordination and continuity; (5) personnel practices; (6) quality improvement; and (7) community partnerships. Individual and group interviews were completed with a variety of staff in each emergency department. RESULTS: All 9 emergency departments demonstrated some integration of family-centered care principles. However, staff knowledge about family-centered care varied. Support of family-centered care was most consistent in the departments with specific competencies, educational programs, and practices that were inclusive of the family. DISCUSSION: The Family-centered Care Self-assessment Inventory tool was effective in evaluating family-centered care for pediatric patients in emergency departments. The assessment tool helped the departments to identify current family-centered care practices. Based on those assessments, the departments were able to identify areas of strength and opportunities for improvement in the care of children and their families.     

A TEAM approach to NICU care

The NICU can be a very stressful place not only for the infants who need intensive care, but also for their parents. By implementing family-centered care using the TEAM model described here, nurses can make baby's stay less upsetting, promote bonding between parents and child, and help improve postpartum care.     

Ethical issues in the neonatal intensive care unit

The case of Baby Y presented a difficult and complex ethical dilemma for the family and the staff involved. The issues of religious beliefs and law, up-holding these beliefs in the center of a religious community, financial concerns, and health care workers disagreeing about carrying out treatments made this case one that few will forget. When asked after Baby Y died how they felt, many members of the staff answered that it should not have gone on as long as it did and that they learned a lot from the family and the experience. Palliative care has been well associated with the adult cancer population in the form of hospice care. It is the hope that this well-integrated aspect of care crosses over to the NICU population. Many of the patients in the types of cases mentioned previously stay in the NICU for extended periods of time until a decision is made clear or the infant expires on his own time. The hustle and bustle of a busy, open, and not-so-private NICU is not the place for this to take place. The NICU should have a designated place where these infants can be cared for better in a more family-centered and staff-friendly environment. Pain management is another important aspect of palliative care. Comfort of the infant is of utmost importance, as it helps the family believe the suffering is under control. During the last few days or weeks of life, the family should have time that is peaceful and restful, and, eventually, the infant should have a pain-free death.Lastly, a part of the palliative care philosophy and approach includes providing treatments that may ap-pear to prolong the inevitable but in fact help the process along to resolution. In the case of Baby Y, surgery to repair some of the defects may have allowed her to go home with her family and spend her short life with them. This was the wish of the mother,especially, and it never happened. It may well be the"what if" she continues to ask for the rest of her life.     

Case study of an educational intervention to favor siblings’ adaptation during the hospitalization of a preterm infant in the neonatal intensive care unit

Hospitalization of a preterm infant in the Neonatal Intensive Care Unit (NICU) places additional strain on the family and influences the siblings' adaptation. Although it is essential to support the siblings’ adaptation and provide family-centered care in the NICU, sibling involvement is rarely integrated into nursing care. An evidence-based intervention was therefore developed in a level-III NICU and its impact on sibling adaptation was evaluated using a Case study in which three families with a hospitalized infant and siblings between 3 and 12 years old participated. The parents were asked to consult a website and attend a 30-min educational session on issues related to sibling adaptation, and the siblings received a structured introduction to the NICU and visited the preterm infant. All three families were satisfied with the activities, although two parents felt neutral about whether the intervention met their expectations. Overall, the intervention seems to have the potential to facilitate sibling adaptation during the experience of a NICU hospitalization.     

Addressing the Needs of Mothers with Infants in the Neonatal Intensive Care Unit: A Qualitative Secondary Analysis

PurposeMothers of infants hospitalized in neonatal intensive care units (NICUs) need to be recognized as essential partners of the care team as their presence and involvement are key to infants' health and developmental outcomes. Addressing mothers' perceived needs is beneficial for the improvement of supportive nursing care; however, little qualitative research on their unmet needs has been conducted in South Korea. This study assessed mothers' perspectives on their NICU experiences and their unmet needs within the South Korean cultural context.MethodA cross-sectional, multicentered, secondary analysis study was conducted using the written responses to an open-ended questionnaire. Of the 344 NICU-experienced mothers, 232 throughout South Korea (seven cities and five provinces) voluntarily completed the questionnaire via smartphone-based or web-based surveys. Their narrative responses were analyzed using thematic content analysis guided by the critical incident technique.ResultsFour themes emerged. NICU-experienced mothers of preterm infants referred to the “family-friendly environment” (16.4%) as a positive experience. The greatest unmet need was “relationship-based support” (58.2%), followed by “information and education-based support” (20.0%) and “system-level challenges” (5.4%).ConclusionThe importance of creating a family-friendly NICU environment should be emphasized by ensuring 24-hour unrestricted access and encouraging active parental involvement in infant care, as well as actively supporting NICU families through supportive words and actions. The assurance of antiinfection management and better staffing levels should be fundamentally guaranteed to NICU staff.