Family-centered care in the NICU

Family-centered care is a philosophy of care that embraces a partnership between staff and families. Families, patients, and staff benefit in a family-centered care environment and the design of the newborn intensive care unit (NICU) must not interfere with its successful implementation. Unrestricted parental presence in the NICU, parental involvement in infant caregiving, and open communication with parents are basic tenets of family-centered care. By virtue of their continual presence and role in the NICU, nurses are in a unique position to support family-centered care.     

Developmentally supportive care in the newborn intensive care unit: early intervention in the community

The traditional focus of hospital nurses on the medical concerns of infants and toddlers is expanding to encompass the more global view that integrates the developmental level of each infant/toddler into the nursing care plan. Research on early brain development has supported the focus on developmentally supportive care in the NICU. Nursing support of the early relationship between infant and parent that will influence the infant's future development is part of this process. The integration of developmental care concepts including family-centered care that begins on admission to the NICU may continue into the process of discharge and transition to home. The nurse is in an excellent position to support the family in naming their concerns, their strengths, and the hopes and dreams they have for their infant. Nurses in the NICU, home care, community, and public health increasingly focus on a developmental perspective in their work but will be continually challenged to increase their knowledge and understanding of developmental milestones, neurodevelopmental assessment, and their role in collaborating with the wider world of early intervention. This collaboration includes the health care system, the educational system, and the social service system as equal players. For some nurses, this will be a new experience whereby the responsibility for the child is shared among members of an interdisciplinary team that includes the parents. Nurses are key to providing developmentally supportive care and working collaboratively on behalf of the infants and toddlers 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.     

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.     

Development of a family liaison model during operative procedures.

The essence of family-centered care is the provision, by all health professionals, of psychosocially supportive care that fosters family integrity and functioning. Data from a hospital-based satisfaction survey at The Children's Hospital of Philadelphia (CHOP) indicated that the primary reason for parents being "less than completely satisfied" was lack of communication. A search of recent literature suggests also that breakdown in family-centered care in intensive care units is neither new nor unique. The purpose of this article is to describe how efforts to improve communication with parents and families led to the development of a family liaison program and an expanded role for staff nurses in the Cardiac Intensive Care Unit (CICU). The goals of this family liaison program were three-fold: to facilitate establishment of a relationship between CICU nursing staff, parents, and families at the earliest possible point in time; to ensure communication with parents and families at regular intervals during their child's surgery; and to promote practice that incorporates principles of family-centered care within the CICU. The design and implementation of such a program presented nurses in the CICU with both a challenge and an opportunity to take an innovative approach to meeting the fundamental need for information reported by parents and families, and echoed throughout nursing literature. This family liaison program serves to educate parents and families, communicate updates, provide physical and emotional support, and establish continuity of care for the patient and family. Additionally, nurses involved in the program have given positive feedback regarding their expanded role in this family-centered care model.     

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.     

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.     

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.     

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.     

Access to videoconferencing in providing support to parents of preterm infants: Ascertaining parental views

Having continued hospital support, even after returning home, in the form of videoconferencing between their home and neonatal intensive care unit (NICU), is of great importance for parents of preterm born infants. It is essential to elicit parents' views before providing videoconferencing access to parents. Therefore, the aim of this study was to ascertain the views of parents of preterm infants toward the use of real-time videoconferencing between their home and the NICU. Twelve parents, who participated in the study, were interviewed. Thematic content analysis of their interview texts was carried out. The analysis revealed three categories: willing to try; addition to the conventional care; might facilitate taking the step to go home. The theme identified from content analysis was ‘grabbing the chance to get extra support’. Parents view videoconferencing facility as a possible chance to get extra support. It appears to be one among several other ways to support families after returning home with their preterm infants.     

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。     

Development of a care pathway for babies being discharged from a level 3 neonatal intensive care unit to a community setting for end-of-life care

The development of a care pathway for babies being discharged from a level 3 neonatal intensive care unit (NICU) to a community setting for end-of-life care is discussed. The development of the care pathway was a collaborative project between a level 3 NICU, the local children's hospice and the local primary care trust. The development of the care pathway enables parents to decide where they want their babies to be cared for: NICU, hospice or home care. It enables staff to rapidly refer babies and their families to hospice or community care and provides staff with the support they also need during this difficult time.     

The nurse practitioner role in the NICU as perceived by parents

PURPOSE: The aim of this study was to understand and describe the nature of nurse practitioner care delivery in the newborn intensive care unit (NICU) as perceived by parents of critically ill neonates. DESIGN: This qualitative study used a phenomenologic approach to answer the research question: "What is the lived experience of parents whose babies were cared for by a nurse practitioner in the NICU? METHODS: Consistent with phenomenologic methods, eight parents were asked: "What was it like for you to have a nurse practitioner care for you and your baby?" Parents whose babies had within the last 8 months spent at least 2 weeks in the NICU and had been discharged to home were asked to participate by letter. Consent of interested parents was obtained and interviews were conducted in the parents' homes. All interviews were audiotaped and transcribed. RESULTS: In addition to being able to effectively manage the medical care of the complex neonate, nurse practitioners were consistently perceived as: "being positive and reassuring," "being present," "caring," "translating information," and "making parents feel at ease." IMPLICATIONS: Nurse practitioners working in the NICU can feel validated by the fact that they are clearly appreciated by parents. Inclusion of NPs in the NICU care team enhances the care provided to infants and their families.     

Rush SpecialKare Keepsakes

When an infant is admitted to a neonatal intensive care unit (NICU), parents seldom have the opportunity to celebrate special events in the infant's life within the context of the family. Our Rush SpecialKare Keepsakes is a program for parents of NICU infants that combines therapeutic photography, journaling, and memento preservation, with the goal of documenting the infant's birth and place within the family. The program has two distinct components: weekly scrapbooking sessions, which are free of charge to all NICU families; and Holiday Family Photo Shoots, in which infants are photographed with their family members to celebrate traditional holidays throughout the year. The program, which was conceived and implemented in January 2001, is under the direction of two NICU bedside nurses, who blend scrapbooking techniques with clinical expertise, so that weekly scrapbooking sessions are transformed into a unique type of parent support group. Data from the first 6 months of the program indicate that all 173 parent participants overwhelmingly appreciated the opportunity to attend these sessions, which they perceived as a brief respite from the NICU and an opportunity to interact with other families.     

Early intervention care programme for parents of neonates

Parents with neonates in the neonatal intensive care unit (NICU) experience different needs at different stages of their neonates' stay in the NICU. The needs of parents with neonates in NICU's play an important role in aspects such as the ability to cope with changing parental roles and emotions, the relationship between parent and infant and the managing of the parents' own needs. The aim of this study was to develop an intervention care programme for parents with neonates in the NICU. This intervention care programme will empower parents to manage their own needs and the needs of their neonates while the neonate is admitted to the NICU and after discharge from the NICU/hospital. Literature is available on care programmes for neonates, but not on programmes for the parents of neonates in NICU. The study was a multi-phased study, using qualitative methodologies to determine the needs of South African parents with neonates in level III NICU's. In phase I, the needs of parents with neonates in NICU were elicited qualitatively. The needs were identified from the data and the results led to the implementation of phase II. In phase II the question was adjusted and new data was collected. Phase III was implemented to validate the data derived from phases I and II. The data was categorised in different need categories and these categories were used to plan an intervention care programme for parents with neonates in NICU's. The programme provides information to address needs as identified by parents in the research study and as derived from the literature. Need categories identified from the study and literature were as follows: information, communication, emotional, learning, discharge and individual needs. This programme is available in electronic format to enable parents to obtain information according to their changing needs and to provide unlimited access to updated information. The "Early intervention care programme for parents of neonates" will empower parents to manage their own needs and the needs of their neonates while the neonate is admitted to the NICU and after discharge from the NICU/hospital.     

Early intervention care programme for parents of neonates

Parents with neonates in the neonatal intensive care unit (NICU) experience different needs at different stages of their neonates' stay in the NICU. The needs of parents with neonates in NICU's play an important role in aspects such as the ability to cope with changing parental roles and emotions, the relationship between parent and infant and the managing of the parents' own needs. The aim of this study was to develop an intervention care programme for parents with neonates in the NICU. This intervention care programme will empower parents to manage their own needs and the needs of their neonates while the neonate is admitted to the NICU and after discharge from the NICU / hospital. Literature is available on care programmes for neonates, but not on programmes for the parents of neonates in NICU. The study was a multi-phased study, using qualitative methodologies to determine the needs of South African parents with neonates in level III NICU's. In phase I, the needs of parents with neonates in NICU were elicited qualitatively. The needs were identified from the data and the results led to the implementation of phase II. In phase II the question was adjusted and new data was collected. Phase III was implemented to validate the data derived from phases I and II. The data was categorised in different need categories and these categories were used to plan an intervention care programme for parents with neonates in NICU's. The programme provides information to address needs as identified by parents in the research study and as derived from the literature. Need categories identified from the study and literature were as follows: information, communication, emotional, learning, discharge and individual needs. This programme is available in electronic format to enable parents to obtain information according to their changing needs and to provide unlimited access to updated information. The "Early intervention care programme for parents of neonates" will empower parents to manage their own needs and the needs of their neonates while the neonate is admitted to the NICU and after discharge from the NICU / hospital.