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.     

The impact of preterm birth on the family and society. Part 2: Transition to home

The birth of a preterm infant and the transition from the acute care of the newborn intensive care unit (NICU) to home can impose many emotional and financial stresses on the family. This article, the second in a series on the impact of preterm infants on the family, discusses the issues that must be considered by the nurse in planning for the discharge of these infants, who may have complex medical needs at home. The coordination of these home services and advocacy for preterm infants and their families is an important role for nurses.     

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.     

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.     

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.     

Family-physician interactions in the intensive care unit

Surrogate designation has the potential to represent the patient's wishes and promote successful family involvement in decision making when options exist as to the patient's medical management. In recent years, intensive care unit physicians and nurses have promoted family-centered care on the basis that adequate and effective communication with family members is the key to substitute decision making, thereby protecting patient autonomy. The two-step model for the family-physician relationship in the intensive care unit including early and effective provision of information to the family followed by family input into decision making is described as well as specific needs of the family members of dying patients. A research agenda is outlined for further investigating the family-physician relationship in the intensive care unit. This agenda includes a) improvement of communication skills for health care workers; b) research in the area of information and communication; c) interventions in non-intensive care unit areas to promote programs for teaching communication skills to all members of the medical profession; d) research on potential conflict between medical best interest and the ethics of autonomy; and e) publicity to enhance society's interest in advance care planning and surrogate designation amplified by debate in the media and other sounding boards. These studies should focus both on families and on intensive care unit workers. Assessments of postintervention outcomes in family members would provide insights into how well family-centered care matches family expectations and protects families from distress, not only during the intensive care unit stay but also during the ensuing weeks and months.     

The effects of nurse-delivered caregiving in the neonatal setting: An integrative review

Infants hospitalised in neonatal intensive care units require interventions for lifesaving care and to meet basic human needs. Evidence that stress influences neurodevelopment suggests the effects of caregiving in the neonatal intensive care unit (NICU) warrant further investigation to assess links with infant developmental outcomes. This review explores the effects of nurse-delivered caregiving in the NICU on infant physiological and behavioural responses, and longer-term developmental outcomes (behaviour and temperament). CINHAL, MEDLINE and PsychINFO were systematically searched for studies in peer-reviewed journals related to nurse-delivered caregiving and developmental outcomes. Synthesis of the literature identified altered physiological and behavioural responses as immediate effects of caregiving in neonatal settings, and non-optimal developmental outcomes. Results indicate that caregiving is not innocuous. Yet, little is known about nurses’ perceptions of the effects of caregiving. Identifying the care components that influence development is essential to minimise the potentially adverse impact of the NICU experience on infants and 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.     

Adapting the neonatal intensive care environment to decrease noise

A protocol of environmental noise reduction was developed and tested over a 14-month period in a 70-bed tertiary care neonatal intensive care unit (NICU). Evidence-based research and a detailed sound assessment guided the development of the protocol. Modifications of caregiving activities and categorized changes in the physical environment were specific to the NICU tested; however, guidelines for adapting the protocol to other NICUs are explained as well as methods for implementation to promote staff awareness and cooperation are reviewed.     

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.     

Nurses' beliefs and values about doing cue-based care in an NICU in Taiwan

Although advances in medical technology have increased the survival rate of preterm infants, science is no cure-all for these high-risk patients. A growing number of studies report that caregiving interventions cause physiological and behavioral distress in such infants. The results have prompted changes in caregiving practices, attempting to reduce stress and strengthen protection for the infants, in order to promote their stability and development in the neonatal intensive care unit (NICU) . This study uses qualitative research methods to grasp the richness and diversity of nurses' beliefs and experience in the taking care of preterm infants. Ten groups of questions explore how NICU nurses take care of premature infants, nurses' perspectives on cue-based care, and the extent to which NICU nurses practice cue-based care. The results generated three themes: (1) timely and skillful management of the preterm infants; (2) compassionate and holistic care for the infants and their highly stressed families; and (3) the relationship between good nursing care and meeting the needs of preterm infants, families, physicians, units, and the environment. It is apparent that the approach to care delivery in NICU practice is still clinical-based, and that there are some obstacles to the delivery of cue-based care. The reasons for this include lack of knowledge, incomplete collaboration with team members, and insufficient support from the administrative systems. To improve the quality of nursing care and preterm infant outcomes, it will be necessary to educate NICU nurses on cue-based care, to enhance collaboration among all team members, to reduce their non-nursing workload, and to re-design NICUs for optimal cue-based care.     

Maintaining family connectedness in long-term care. An advanced practice approach to family-centered nursing homes

The decision to place a relative in a long-term care institution is one of the most difficult processes families can go through. Family members often experience conflicting feelings of stress, shock, anxiety, fear, resistance, and guilt. In addition, many individuals, regardless of the amount of previous nursing home experiences, possess misconceptions about nursing home care (Grove, 1997; Mastrian & Dellasega, 1996; Tickle & Hull, 1995). Even after the family realizes the necessity of nursing home placement, achieving a level of comfort with such a decision and maintaining family relationships is a difficult challenge. Unfortunately, family-centered nursing care in long-term care settings is hindered by multiple barriers, including resistance to institutional change, family members' fear and hesitation, institutional rules and protocols, lack of institutional encouragement of family involvement, insufficient programs and activities addressing the social and emotional needs of the family, and ineffective communication between the staff and families. To remedy these barriers, it is suggested the family advanced practice nurse (APN) view the families as clients and initiate family-centered policies to encourage family involvement in the caregiving experience. Ultimately, this will promote individualized care of elderly adults and encourage family processes within the walls of the nursing home.     

Primary care of the premature infant discharged from the neonatal intensive care unit

Premature infants require varying degrees of newborn intensive care and have a wide range of physical and developmental outcomes. Subsequent ambulatory care for these infants is often complex. Although tertiary hospitals often provide multidisciplinary follow-up clinics, the pediatric nurse practitioner (PNP) responsible for primary care has a unique opportunity to influence the lives of these special babies and their families. While the basic principles of well child care and health maintenance apply to this special population, there are several inherent challenges. The transition from neonatal intensive care unit (NICU) to home can be stressful for families. Infants born prematurely often have unpredictable behavior and present with cues that are vague and unclear to caregivers. Growth must be monitored adjusting for prematurity, and nutrition must be tailored to the physical and developmental level of the infant. Assessments of development, vision, and hearing must also be adjusted for prematurity. Fortunately, the majority of premature infants discharged from the NICU thrive and develop normally. However, some will experience medical problems and developmental delay. Knowledge of complications common to premature infants will be helpful to the PNP providing primary care. These include difficulties of growth and feeding, gastroesophageal reflux, apnea and bradycardia, chronic lung disease, fine and gross motor abnormalities, and other learning problems. Providing care to the NICU graduate is one of the challenges faced by PNPs in primary care, but one that is both rewarding and enjoyable.     

Differences in family caregiver outcomes by their level of involvement in discharge planning.

Family caregivers play vital roles in assisting elders after they are released from the hospital. Although health care professionals advocate involving family caregivers in discharge planning for elders, little is known about the extent to which this involvement benefits or jeopardizes the caregiver's health and their perceptions of the caregiving experience. The purpose of this study was to determine whether the level of family caregiver involvement in discharge planning for an elder made a difference in caregiver health, discharge planning satisfaction, perception of care continuity, preparedness to assist the elder, and acceptance of the caregiving role 2 weeks and 2 months postdischarge. The sample consisted of 130 family caregivers for elders hospitalized with heart failure. Telephone interviews were conducted 2 weeks and 2 months postdischarge. The findings indicated that family caregivers who reported more involvement in discharge planning had significantly higher scores on satisfaction, feelings of preparedness, and perception of care continuity 2 weeks following the elder's hospitalization than those who reported little or no involvement in planning. Caregivers who reported more involvement in planning also were more accepting of the caregiving role. At 2 months postdischarge, caregivers who reported more involvement in discharge planning reported better health and more acceptance of the caregiving role than those who had little or no involvement in planning.     

Evaluating and improving the practice of family-centered care

Evaluating and improving the practice of family-centered care involves planning the evaluation effort collaboratively with families, gathering information from a variety of audiences, investigating the different arenas of family-centered care, following growth in family-centered practice over time, using a variety of evaluation approaches, and integrating evaluation with efforts to change toward family-centered approaches to care. Resources available to guide the evaluation effort include guidelines for reviewing written materials in a unit, program, clinic, or practice; written surveys and checklists; guidelines for focus groups or interviews; suggestions for using health care scenarios to gather information about family-centered approaches to care; and questions for nurses to use to reflect on their own practice.     

以家庭为中心的NICU早产儿出院指导对早产儿家庭护理的影响

目的探讨以家庭为中心的NICU早产儿出院指导对早产儿家庭护理的影响。方法选择在NICU住院的极低及超低出生体质量早产儿174例,采用区组随机化法分为研究组和对照组各87例。对照组采用常规出院指导;研究组采用以家庭为中心的出院指导计划。观察2组早产儿出院时、纠正胎龄2、4、6个月时的身高和体质量变化;观察入NICU时和出院时早产儿母亲护理知识、护理技能、焦虑评分(SAS)和抑郁评分(SDS),比较2组早产儿6个月内母乳喂养率、再住院率、患病率和病死率。结果 2组出生时和纠正胎龄40周体质量、身长和头围差异均无统计学意义(P0.05);纠正胎龄2个月、4个月、6个月研究组体质量、身长和头围均显著高于对照组(P0.05)。研究组母乳喂养率显著高于对照组(P0.05),患病率和再住院率显著低于对照组(P0.05),2组病死率差异无统计学意义(P0.05)。入NICU时,2组早产儿母亲的护理知识和护理技能差异均无统计学意义(P0.05),出院2个月时较入NICU时显著升高(P0.05),研究组提高更为显著(P0.05)。入NICU时,2组早产儿母亲的SAS和SDS评分差异均无统计学意义(P0.05),出院2个月时较入NICU时显著下降(P0.05),研究组下降更显著(P0.05)。结论对NICU早产儿实施以家庭为中心的出院指导,可促进患儿体格发育,降低患病率,改善家属不良情绪,具有重要的临床价值。     

Family-centered developmental care practices and research: what will the next century bring?

Family-centered developmental care is an essential element of neonatal intensive care. It is of particular importance when the infant is vulnerable and at greater risk for poor outcomes complicated by a family unit that is easily challenged by the unique needs of the infant. Yet, all infants and their families deserve this philosophy of caregiving. Family-centered developmental care must continue to be tested through research to determine which interventions work, what does not work, and which interventions need further refinement. This article provides a brief history of where we have been in neonatal caregiving, provides definitions for family-centered developmental caregiving and offers some "predictions" about where these practices need to be in the next century. Research questions and strategies are also addressed. As we continue to forge ahead integrating this philosophy into the caregiving arena, it is important to remember that there are many unanswered questions.     

Newborn individualized developmental care and assessment program training and education

The Newborn Individualized Developmental Care and Assessment Program (NIDCAP) was developed from a multidisciplinary study of the preterm infant's behavior, and serves as a guide for the newborn intensive care unit (NICU) professional to provide individualized developmental care. Implementation of the NIDCAP approach has reduced the iatrogenic complications of prematurity and enhanced the infant's neurobehavioral competence. This theory- and evidence-based approach involves formal training and education and requires a multidisciplinary commitment to change within the context of the hospital system. Site assessment and self-assessment of individual trainees initiate the process for a thorough and reflective change in clinical practice within the NICU. The training consists of work sessions with the NIDCAP trainer, interspersed with guided independent neurobehavioral observations. The clinical report interprets the meaning of the infant's observed behavior within the context of the NICU environment, the infant's medical status, and the family concerns in order to best articulate the infant's goals, from which individualized suggestions for care are developed. NIDCAP is a system-wide intervention approach that strives to enhance relationships between infants and families and the professionals who care for them.     

Discharge planning utilizing the discharge train: improved communication with families.

In Ontario, publicly funded, regionalized healthcare enables transfer of convalescing infants from level III neonatal intensive care units (NICUs) to regional level II nurseries prior to discharge home. To facilitate a timely transfer and allow time for preparation of families and regional hospital nurseries, NICU staff must recognize infant readiness early. This article describes the implementation process of a 4-part, multidisciplinary, discharge planning instrument that assists staff in early identification of infant readiness for transfer or discharge home. Titled the Discharge Planning Train, this interactive instrument encourages communication and collaboration between all levels of the multidisciplinary staff and with families and decreases confusion at the time of transfer. Barriers to and strategies for successful implementation are included. Evaluation methods and results are presented. The success of the instrument in improving communication and collaboration with the families is well described by the RNs.