Family Support and Family-Centered Care in the Neonatal Intensive Care Unit: Origins,
      Advances, Impact

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Abstract

Family-centered care (FCC) has been increasingly emphasized as an important and necessary element of neonatal intensive care. FCC is conceptualized as a philosophy with a set of guiding principles, as well as a cohort of programs, services, and practices that many hospitals have embraced. Several factors drive the pressing need for family-centered care and support of families of infants in NICUs, including the increase in the number of infants in NICUs; growth in diversity of the population and their concurrent needs; identification of parental and familial stress and lack of parenting confidence; and gaps in support for families, as identified by parents and NICU staff. We explore the origins of and advances in FCC in the NICU and identify various delivery methods and aspects of FCC and family support in the NICU. We examine the research and available evidence supporting FCC in the NICU and offer recommendations for increased dissemination and for future study. Copyright © 2011 Elsevier Inc. All rights reserved.

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Most cited references 73

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Reducing premature infants' length of stay and improving parents' mental health outcomes with the Creating Opportunities for Parent Empowerment (COPE) neonatal intensive care unit program: a randomized, controlled trial.

Bernadette Mazurek Melnyk, Nancy Feinstein, Linda J. Alpert-Gillis … (2006)

Although low birth weight premature infants and parents are at high risk for adverse health outcomes, there is a paucity of studies that test early NICU interventions with parents to prevent the development of negative parent-infant interaction trajectories and to reduce hospital length of stay. Our objective was to evaluate the efficacy of an educational-behavioral intervention program (ie, Creating Opportunities for Parent Empowerment) that was designed to enhance parent-infant interactions and parent mental health outcomes for the ultimate purpose of improving child developmental and behavior outcomes. A randomized, controlled trial was conducted with 260 families with preterm infants from 2001 to 2004 in 2 NICUs in the northeast United States. Parents completed self-administered instruments during hospitalization, within 7 days after infant discharge, and at 2 months' corrected age. Blinded observers rated parent-infant interactions in the NICU. All participants received 4 intervention sessions of audiotaped and written materials. Parents in the Creating Opportunities for Parent Empowerment program received information and behavioral activities about the appearance and behavioral characteristics of preterm infants and how best to parent them. The comparison intervention contained information regarding hospital services and policies. Parental stress, depression, anxiety, and beliefs; parent-infant interaction during the NICU stay; NICU length of stay; and total hospitalization were measured. Mothers in the Creating Opportunities for Parent Empowerment program reported significantly less stress in the NICU and less depression and anxiety at 2 months' corrected infant age than did comparison mothers. Blinded observers rated mothers and fathers in the Creating Opportunities for Parent Empowerment program as more positive in interactions with their infants. Mothers and fathers also reported stronger beliefs about their parental role and what behaviors and characteristics to expect of their infants during hospitalization. Infants in the Creating Opportunities for Parent Empowerment program had a 3.8-day shorter NICU length of stay (mean: 31.86 vs 35.63 days) and 3.9-day shorter total hospital length of stay (mean: 35.29 vs 39.19 days) than did comparison infants. A reproducible educational-behavioral intervention program for parents that commences early in the NICU can improve parent mental health outcomes, enhance parent-infant interaction, and reduce hospital length of stay.

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The Stockholm Neonatal Family Centered Care Study: effects on length of stay and infant morbidity.

Ulla Waldenström, Eva Berggren Broström, Annica Ortenstrand … (2010)

Parental involvement in the care of preterm infants in NICUs is becoming increasingly common, but little is known about its effect on infants' length of hospital stay and infant morbidity. Our goal was to evaluate the effect of a new model of family care (FC) in a level 2 NICU, where parents could stay 24 hours/day from admission to discharge. A randomized, controlled trial was conducted in 2 NICUs (both level 2), including a standard care (SC) ward and an FC ward, where parents could stay from infant admission to discharge. In total, 366 infants born before 37$$\raisebox{1ex}{$0$}\!\left/ \!\raisebox{-1ex}{$7$}\right.$$ weeks of gestation were randomly assigned to FC or SC on admission. The primary outcome was total length of hospital stay, and the secondary outcome was short-term infant morbidity. The analyses were adjusted for maternal ethnic background, gestational age, and hospital site. Total length of hospital stay was reduced by 5.3 days: from a mean of 32.8 days (95% confidence interval [CI]: 29.6-35.9) in SC to 27.4 days (95% CI: 23.2-31.7) in FC (P = .05). This difference was mainly related to the period of intensive care. No statistical differences were observed in infant morbidity, except for a reduced risk of moderate-to-severe bronchopulmonary dysplasia: 1.6% in the FC group compared with 6.0% in the SC group (adjusted odds ratio: 0.18 [95% CI: 0.04-0.8]). Providing facilities for parents to stay in the neonatal unit from admission to discharge may reduce the total length of stay for infants born prematurely. The reduced risk of moderate-to-severe bronchopulmonary dysplasia needs additional investigation.

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Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005.

Judy E Davidson, Karen A Powers, Kamyar M. Hedayat … (2007)

To develop clinical practice guidelines for the support of the patient and family in the adult, pediatric, or neonatal patient-centered ICU. A multidisciplinary task force of experts in critical care practice was convened from the membership of the American College of Critical Care Medicine (ACCM) and the Society of Critical Care Medicine (SCCM) to include representation from adult, pediatric, and neonatal intensive care units. The task force members reviewed the published literature. The Cochrane library, Cinahl, and MedLine were queried for articles published between 1980 and 2003. Studies were scored according to Cochrane methodology. Where evidence did not exist or was of a low level, consensus was derived from expert opinion. The topic was divided into subheadings: decision making, family coping, staff stress related to family interactions, cultural support, spiritual/religious support, family visitation, family presence on rounds, family presence at resuscitation, family environment of care, and palliative care. Each section was led by one task force member. Each section draft was reviewed by the group and debated until consensus was achieved. The draft document was reviewed by a committee of the Board of Regents of the ACCM. After steering committee approval, the draft was approved by the SCCM Council and was again subjected to peer review by this journal. More than 300 related studies were reviewed. However, the level of evidence in most cases is at Cochrane level 4 or 5, indicating the need for further research. Forty-three recommendations are presented that include, but are not limited to, endorsement of a shared decision-making model, early and repeated care conferencing to reduce family stress and improve consistency in communication, honoring culturally appropriate requests for truth-telling and informed refusal, spiritual support, staff education and debriefing to minimize the impact of family interactions on staff health, family presence at both rounds and resuscitation, open flexible visitation, way-finding and family-friendly signage, and family support before, during, and after a death.