Journal of Perinatology (2007) 27, S38S44 r 2007 Nature Publishing Group All rights reserved.

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Results of the Premature Birth National Need-Gap Study

SD Berns1, MD Boyle2, B Popper3 and JS Gooding1, the Preemie Health Coalition
1

National Ofce, March of Dimes Foundation, White Plains, NY, USA; 2Mothers of Supertwins, East Islip, NY, USA and 3Family Voices, Boston, MA, USA for preterm infants. During the 1970s and 1980s, while families were extremely grateful for the dedicated and skilled NICU staff, parents voiced the need to receive more information about their babies and to be more involved in the day-to-day care, including decision-making, of their newborns.3 This family-centered approach has now been embraced by NICUs across the country and has emerged as a standard of care.4 The basic components of family-centered care (FCC) include treating family members with dignity and respect, sharing information, encouraging family collaboration and facilitating family participation in care.5 These principles have been reinforced in guidelines issued by the American Academy of Pediatrics and Institute for Family-Centered Care, which also point to the importance of sensitivity to families cultural differences.6 The American College of Critical Care Medicine guidelines emphasize the need for encouraging as much family participation as possible in the care process, providing ample information on care methods, involving families in decision-making and offering emotional support.7 Evidence from clinical trials has attested to the benets of FCC in terms of enhanced parentinfant interactions, better mental health for parents and improved outcomes for infants.810 During the past two decades, providers have placed even greater focus on the value of the FCC approach for the care of preterm infants in the NICU, including the application of these principles to the transition home.1117 These efforts can be further advanced by learning about parents experiences in the NICU and identifying potential areas of improvement. To that end, we conducted a national survey designed to assess parents satisfaction with their role in the care of their premature infants, their opinions regarding areas needing improvement and their perceptions of the NICU experience to discover tangible methods of providing support.

Objective: Family-centered care is a standard of practice in neonatal intensive care units (NICUs). The purpose of the study was to assess successes and opportunities for improvement with parents experiences and involvement in their premature infants care in NICUs.

Study Design: Researchers surveyed 502 parents whose children were currently p30 months old, had been born at a gestational age p36 weeks and had gone through or were currently in NICUs. Result: Most parents of premature infants were reasonably satised with the access, attention and information received from physicians and nurses in the NICU. However, approximately one-fourth were only moderately satised and nearly 10% were dissatised. Conclusion: While progress has been made in meeting the needs of parents in the NICU, more work needs to be carried out to improve family-centered care efforts. Specic attention should be given to providing more information and interaction opportunities for families, which may ultimately improve NICU outcomes. Journal of Perinatology (2007) 27, S38S44; doi:10.1038/sj.jp.7211841 Keywords: family-centered care; premature birth; neonatal intensive care unit

Introduction In 2004, 12.5% of all infants born in the United States were preterm, dened as births occurring at <37 weeks gestation.1 This gure represents more than a 30% increase since 1981.1 The growing incidence of premature births is a major public health concern, costing the US more than $26 billion per year.2 The increasing frequency of such births, now over 500 000 births per year in the United States, has placed an even greater need on addressing the issue of effectively engaging parents in the care of their premature infants, both in the hospital and during the transition to home. Since the 1960s, when neonatal intensive care units (NICUs) were rst introduced, parents and parent organizations have worked actively to foster family involvement in the process of care
Correspondence: Dr SD Berns, Chapter Programs, March of Dimes, 1275 Mamaroneck Avenue, White Plains, NY 10605, USA. E-mail: SBerns@marchofdimes.com

Methods This study was conducted by USA/DIRECT Inc. using a national sample of online household panel members supplemented by 5% telephone interviewing to broaden reach of the target sample. Selection criteria for study inclusion were: parents (X18 years of age) with a child currently p30 months old who had a gestational age p36 weeks at birth and had gone through or was currently in the NICU. A 30 min survey totaling 76 questions was

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administered to participants and it encompassed the following FCC topics: parental NICU involvement, communication, information and transition to home. Pretesting for comprehension among 15 subjects was conducted from 10 to 16 October 2006, and eldwork was conducted from 23 October to 17 November, 2006. The hypothesis of the study was that health-care professionals in the NICU adequately prepare parents to care for their premature infants, but more could be done to ensure that parents needs are met both in the NICU and during the transition to home. Broad areas examined included the extent and degree of satisfaction associated with parental involvement in the NICU, the quality of communication between parents and hospital professionals, the adequacy of information provided to parents concerning the care of their premature infant and the sufciency of parents preparation for arriving home from the hospital. For the statistical analysis, all comparisons were made by a Standard t-test to determine differences between cells at the 95% level of condence.

was signicantly longer among children with a gestational age p32 weeks compared to 33 to 34 weeks or 35 to 36 weeks (Pp0.05). Parental NICU involvement A 10-point scale was used to rate a series of prelisted adjectives describing parents feelings on rst arriving in the NICU with their infant. The highest ratings were given to feelings of being worried or scared by 80% of parents, and top ratings were given to feelings of being nervous or overwhelmed by 70% of parents. Parents of infants with a gestational age p32 weeks were signicantly more likely to report feeling confused when compared with parents of less premature infants (Pp0.05). A total of 85% of parents indicated that they were encouraged to become involved with the care of their baby in the NICU. Signicantly more African American parents were encouraged to do so when compared with Caucasian parents (92 vs 83%, respectively; Pp0.05). The major ways parents were able to participate in the care of their infant were via holding the baby (89%), changing diapers (80%), providing breast milk (56%) and bathing (50%). When parents were asked whether they were as involved in the NICU as they wanted to be, 78% answered yes, whereas 22% said they would have liked to be more involved. Signicantly more African Americans achieved their desired degree of involvement in the NICU than did Caucasians (87 vs 76%, respectively; Pp0.05). In addition, signicantly more parents of children with a gestational age p32 weeks indicated satisfaction with their degree of involvement when compared with parents of children with a gestational age of 33 to 34 weeks (84 vs 74%, respectively; Pp0.05). Among parents who were not as involved in the NICU as they wanted to be, the main reasons cited were resistance of nurses (29%) and limited visiting hours (20%). The statement that nurses wouldnt allow me/wasnt allowed to hold baby was cited by 20% of parents whose infants had a gestational age of 35 to 36 weeks, 37% of those whose infants had a gestational age of 33 to 34 weeks (37%) and 30% of those whose infants had a gestational age p32 weeks; the differences between groups were not signicant. Among

Results Characteristics of the study population A total of 7233 households were screened nationally, of which 502 qualied for the study. Of the 502 respondents, 93% were primary caregivers and 89% were female. Characteristics of the study population are summarized in Table 1. The respondents represented a cross-section of ethnicities. The gestational age was 35 to 36 weeks in more than one-third of infants, 33 to 34 weeks in more than one-third, and p32 weeks in more than one-fourth. Notably, a disproportionate number of children with a gestational age p32 weeks came from the African American community (see Table 1). The mean length of stay in the NICU was 2.88 weeks overall, 2.71 among Caucasians, 4.05 among African Americans 2.35 among Hispanics, 2.27 among Asians and 3.72 among other ethnic groups. The difference between African Americans and Asians was statistically signicant (Pp0.05). Furthermore, the length of stay
Table 1 Characteristics of the study population
Gestational age (weeks) Total (n 502) % White/Caucasian (n 382) %

Ethnic group Black/African American (n 62) % 21.0 16.1 9.7 11.3 41.9d Hispanic (n 46) % Asian (n 15) % Other (n 25) %

36 35 34 33 p32
a

14.5 21.7 16.9 18.7 28.1

13.6 22.0a 17.8 20.4c 26.2

10.9 17.4 21.7 23.9 26.1

20.0 46.7b 6.7 6.7 20

20.0 8.0 24.0 12.0 36.0

Pp0.05 vs other; bPp0.05 vs black/African American, Hispanic, Asian, and other; cPp0.05 vs black/African American and Asian; dPp0.05 vs white/Caucasian. Journal of Perinatology

Premature Birth National Need-Gap Study SD Berns et al

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Activity Total (n 109) % 3536 (n 40) % Holding my baby Knowing what tests were being done and why Bathing Nursing at the breast Changing diapers Kangaroo care Administering medications Holding the nasogastric tube during feedings Providing breast milk
Abbreviation: NICU, neonatal intensive care unit. a Pp0.05 vs 3536 weeks; bPp0.05 vs p32 weeks.

Gestational age (weeks) 3334 (n 46) % 71.7 69.6 69.6a,b 41.3 45.7 37.0a 34.8 21.7 19.6 p32 (n 23) % 65.2 69.6 43.5 39.1 30.4 52.2a 34.8 43.5a 13.0

70.6 68.8 55.0 41.3 41.3 33.0 28.4 23.9 20.2

72.5 67.5 45.0 42.5 42.5 17.5 17.5 15.0 25.0

Table 3 Extent to which parents felt the nurses and physicians in the hospital listened to concerns they had about their baby
Extent of nurse/ physician listening Total (n 502) % White/ Caucasian (n 382) % Very much Somewhat Not very much Not at all
a

Ethnic group Black/African American (n 62) % 82.3a 14.5 1.6 1.6 Hispanic Asian Other (n 46) % (n 15) % (n 25) %

Gestational age (weeks) 3536 (n 182) % 3334 (n 179) % p32 (n 141) %

68.5 25.1 4.2 2.2

67.0 26.7b 3.9 2.4c,d

67.4 23.9 6.5 2.2

60.0 33.3 6.7 0

76.0 16.0 8.0 0

69.8 24.7 3.8 1.6

67.0 26.8 4.5 1.7

68.8 23.4 4.3 3.5

Pp0.05 vs white/Caucasian; bPp0.05 vs black/African American; cPp0.05 vs Asian; dPp0.05 vs other.

those parents who were less involved in the NICU than they desired, the top activities they would liked to have been more involved in were holding their baby and knowing what tests were being performed and why (Table 2). The degree of interest in kangaroo care correlated with the gestational age of the familys child, with interest peaking for those families whose children were born very preterm (p32 weeks). Communication Eight out of every 10 parents (80%) said they were able to talk as much as they wanted with the babys nurses and physicians during the time the baby was in the hospital. The proportion of parents able to do so was signicantly higher among African Americans than among Caucasians (90 vs 79%, respectively; Pp0.05). One-fth of parents surveyed (20%) indicated that they were not able to talk as much as they wanted with the medical caregivers. A 4-point scale was used to measure how comfortable parents felt about asking questions to the nurses and physicians in the hospital when they did not understand something. The proportion of parents who felt very comfortable was 69% overall and was signicantly higher among African Americans than Caucasians
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(86 vs 68%, respectively; Pp0.05). Slightly fewer than one-fourth of parents (24%) felt moderately comfortable asking questions, whereas 7% felt not very comfortable or not at all comfortable. Another question, using a 4-point scale, found that most parents felt that the nurses and physicians in the hospital listened to concerns they had about their baby (Table 3). The proportion of parents who believed that these caregivers listened very much was signicantly higher among African Americans than among Caucasians. Only a small minority of respondents felt that the nurses and physicians listened not very much or not at all. Parents were also asked about the extent to which they were satised with the degree of involvement they were given in decision-making about the care of their infant. Responses on a 4-point scale revealed that 60% of parents were very satised. A signicantly greater proportion of African Americans than Caucasians expressed this belief (76 vs 58%, respectively; Pp0.05). A response of very satised was also signicantly more common among parents of children with a gestational age p32 weeks as opposed to 33 to 34 weeks (68 vs 55%, respectively; Pp0.05). This response was given by 60% of parents of children with a gestational

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age of 35 to 36 weeks. A total of 29% of parents felt moderately satised with their degree of involvement in decision-making, whereas 10% felt not very satised or very unsatised. In another question, parents were asked what one thing they would change about the level and amount of communication with their infants NICU nurses and physicians, either in the hospital or after taking the baby home. The top answer was more communication, cited by 19% of respondents. This issue was cited signicantly more often by Caucasians (22%) than by African Americans or Hispanics (5 and 11%, respectively; Pp0.05). Other desired changes were better and quicker communication (11% of the overall group), permit more (parental) involvement (9%) and better access to information (5%). A total of 43% of parents said they would not change anything. Information Three-fourth of parents felt they were given just the right amount of information concerning their babys care during the stay in the NICU (Table 4). One-fth stated that they were not given enough information. Compared with African Americans, a signicantly greater proportion of Caucasians indicated that they did not receive enough information. The information provided to parents was primarily verbal (86%), but also in the form of brochures (65%) and handouts (59%). A total of 89% of parents stated that they understood all or most of the written or oral information they were given. The information provided to parents covered a wide range of topics, including washing and bathing the newborn (71%), feeding or providing breast milk (69%), the use of car seats (64%), how to care for the baby at home (61%), breastfeeding (60%), diapering (60%) and the development of a premature infant (58%). A total of 87% of respondents said they were given information about the babys progress and whether the development was on target. When asked what one thing they would change about the information given in the NICU, 26% of parents cited the need for more

information in general, including information on specic issues or problems, the infants development and feeding/breastfeeding. Another area of inquiry concerned topics the parents wished they had received more information about while in the NICU, to help them after the baby left the NICU. The major topics cited were the development of a premature infant (31%), knowing where to go for support after leaving the NICU (25%), information regarding a specic challenge the baby was facing (21%), cardiopulmonary resuscitation (17%) and how to care for the baby at home (16%). A total of 62% of parents stated that they looked for information about caring for their infant from sources other than the babys physicians and nurses. The major sources of such information were websites (74%), family and friends (62%), and books (44%). The most useful sources, other than the physicians and nurses, were considered to be websites (39%) and family and friends (33%). Transition to home Only 37% of parents surveyed received preparation for the transition home throughout most of the infants stay in the NICU. Another 9.7% of parents indicated that they received such preparation beginning on the day of admission; 9.3%, 1 week before discharge; 16%, a few days before discharge; 16%, on the day of discharge; and 1%, never. In the majority of cases (86%), the NICU nurse was the individual who prepared the parent for taking the baby home. The topics discussed during preparation for taking care of the baby at home were most often washing and bathing (73%), feeding/ giving breast milk (67%), diapering (62%), follow-up visits (62%), infant development (56%), breastfeeding (53%) and administering medications (42%). When asked what one thing they would change about how the hospital staff prepared them to take the baby home, 13% of parents stated that they would have liked more information (particularly on feeding/breastfeeding and support groups), and 13% expressed a desire for more hands-on experience, practice and preparation time.

Table 4 Parents ratings of the amount of information they were given concerning their infants care during the stay in the NICU
Amount of information Total (n 502) % White/ Caucasian (n 382) % Too much Just the right amount Not enough No information 3.4 74.9 19.7 0.4 9.7 73.6 22.5d 0.5 Black/African American (n 62) % 4.3 82.3b 8.1 0 Ethnic group Hispanic Asian Other (n 46) % (n 15) % (n 25) % Gestational age (weeks) 3536 (n 182) % 3334 (n 179) % p32 (n 141) %

26.7a 82.6b 13.0 0

60.0 60.0 13.3 0

76.0 56.0 32.0d 32.0

69.8 74.2 19.2 0

67.0 69.8 25.7e 1.1

68.8 82.3c 12.8 0

Abbreviation: NICU, neonatal intensive care unit. a Pp0.05 vs white/Caucasian; bPp0.05 vs other; cPp0.05 vs 3334 weeks; dPp0.05 vs black/African American; ePp0.05 vs p32 weeks. Journal of Perinatology

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Special needs when bringing the baby home most frequently included the use of an apnea monitor (40%) and oxygen (30%), each of which was signicantly more common for infants with a gestational age p32 weeks compared to those born less prematurely (Pp0.05). The feelings parents experienced when rst bringing their infant home were evaluated on a 10-point scale listing various adjectives. Feelings rated among the top two were happy or excited in more than 80% of cases. More than 40% of parents rated feelings of being safe, nervous or condent among their top two. Parents of more premature infants (those with gestational ages of 33 to 34 weeks or p32 weeks) were signicantly more likely to cite happy feelings on rst bringing the baby home when compared to parents of babies with a gestational age of 35 to 36 weeks (87.2 and 91.1 vs 79.0%, respectively; Pp0.05). Specic inquiries were made of 228 parents who indicated that their experience in the NICU did not lead them to feel very condent about caring for their infant at home. A total of 32% indicated that they felt very condent in less than 1 week, 29% in 1 to 2 weeks, 28% in 3 weeks to 2 months and 8% in 3 months to 1 year. More than one-half of parents (56%) reported that the physicians and/or nurses at the hospital communicated with the babys primary health-care provider after the infant left the hospital. Such communication was signicantly more common when the infant was African American or Hispanic as opposed to Caucasian (69 and 70 vs 52%, respectively; Pp0.05). After the baby left the hospital, parents most frequently turned to the primary health-care provider as a source of information and advice (in 85% of cases). Consultation with the primary healthcare provider was signicantly more common among Caucasians and Hispanics than among African Americans (86 and 91 vs 74%, respectively; Pp0.05). Friends and family members constituted the second most common source of information and advice (in 54% of cases). The proportion of parents who consulted friends and family members was signicantly higher among African Americans (66%) than among Hispanics and Asians (41 and 33%; Pp0.05). When asked to identify the most important source of information and advice after the baby left the hospital, the majority of parents (55%) named the primary health-care provider. The primary health-care provider was cited by signicantly more Caucasians and Hispanics compared to Asians (57 and 67 vs 27%, respectively; Pp0.05) and by signicantly more Hispanics compared to African Americans (67 vs 46%, respectively; Pp0.05). Discussion The medical community is making great strides in effectively engaging parents in the care of their premature infants in the NICU and preparing parents for the transition to home. The advantages of FCC have been demonstrated in a variety of clinical studies. For instance, a pilot study evaluating the Creating
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Opportunities for Parent Empowerment (COPE) NICU program found that mothers participating in this educational-behavioral intervention had less stress in the NICU.8 In addition, their infants scored higher on measures of cognitive development at 6 months corrected age. In a subsequent randomized, controlled trial, the COPE program was associated with more positive interactions between parents and their infants, signicantly less maternal stress in the NICU, and stronger parental beliefs regarding their role and the types of behaviors and characteristics to expect of their infants during hospitalization.9 In addition, the infants of the parents who participated in this program had shorter lengths of stay in the NICU. Another trial reported that preterm infants who received developmentally supportive FCC exhibited less stress.10 The participants in the present study were representative of the general US population of parents with premature infants, as indicated by the fact that prematurity levels and lengths of stay were in line with national averages; the average length of an inpatient hospital stay for a preterm infant is 13 days, nine times as long as the average length of stay for an infant born at term (1.5 days).18 The results of the study suggest that most parents of premature children are reasonably satised with the access, attention and information they are receiving from physicians and nurses in the NICU. On average, however, one-fourth of parents are, at best, only moderately satised, and nearly 10% are mostly or completely dissatised. These ndings demonstrate that health-care professionals have an opportunity to better the parental experience in the NICU and help improve outcomes. Considering the frequency with which parents cited fear and anxiety when approaching the NICU, as well as their concerns about caring for their infants at home, it is of utmost importance to attempt to improve areas in which additional guidance and support are being sought. The study revealed several specic areas in which parents indicated either moderate or less satisfaction. To address these shortcomings, nurses and physicians in the NICU should become more sensitive to the following goals:  Alleviating parents fear and uncertainty upon arrival at the NICU. Encouraging parents to become more involved in decision-making concerning the care of their infants as well as actual care  Helping parents feel more comfortable asking questions and listening carefully to their concerns  Giving parents more information concerning their infants progress and development through a variety of methods  Preparing parents for the transition home, and beginning preparation earlier during the NICU stay. Additional goals are:  Encouraging the NICU to provide more information to parents on premature infant development, challenges the baby is likely to face and outside support resources available

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 Sensitizing outside pediatricians/primary health-care providers and their nurses regarding the need to make parents feel more comfortable about asking questions concerning how to care for their infant at home. The study also brought to light important disparities in the NICU experiences of parents from different ethnic groups. Compared with Caucasians, for instance, African Americans were signicantly more likely to feel encouraged to become involved with their infants care; to achieve their desired degree of involvement; to talk as much as they wanted with the infants physicians and nurses; to feel very comfortable asking questions of those professionals; and to feel that the caregivers listened very much. Caucasians were signicantly more likely to indicate that they would have liked to have received more communication and information than was offered by the NICU health-care professionals. Some limitations of this study should be noted. First, participation was limited to English speakers only. In addition, most of the respondents were primary caregivers and female, so the results may not reect how well the needs of ancillary caregivers or fathers are being met in the NICU. It should also be noted that retrospective studies such as this, based on interviews and questionnaires, may be subject to recall bias (reporting bias) because responses are dependent on the participants ability to remember specic experiences.

International, Preemie Magazine, Society for Developmental and Behavioral Pediatrics, and Zero to Three.

Disclosure
The Preemie Health Coalition funded this survey, conducted by USA/DIRECT Inc., with a grant from MedImmune Inc. In addition, BioScience Communications, New York, NY, USA, assisted in the preparation of this manuscript.

References
1 Martin JA, Hamilton BE, Sutton PD, Ventura SJ, Menacker F, Kirmeyer S. Births. Final Data for 2004. National Vital Statistics Reports, vol. 55, no. 1. National Center for Health Statistics: Hyattsville, MD, 2006. 2 Board on Health Sciences Policy, Institute of Medicine Committee on Understanding Premature Birth and Assuring Healthy Outcomes. Introduction. In: Behrman RE, Butler AS (eds). Preterm Birth: Causes, Consequences, and Prevention. The National Academies Press: Washington, DC, 2007, pp 3152. 3 American Academy of Pediatrics, American College of Obstetricians and Gynecologists. Guidelines for Perinatal Care, 5th edn. American Academy of Pediatrics: Elk Grove Village, IL, 2002, pp 35. 4 Harrison H. The principles of family-centered neonatal care. Pediatrics 1993; 92: 643650. 5 Ahmann E, Abraham MR, Johnson BH. Changing the Concept of Families as Visitors: Supporting Family Presence and Participation. Institute for Family-Centered Care: Bethesda, 2003. 6 American Academy of Pediatrics Committee on Hospital Care, Institute for FamilyCentered Care. Policy statement. Family-centered care and the pediatricians role. Pediatrics 2003; 112: 691696. 7 Davidson JE, Powers K, Hedayat KM, Tieszen M, Kon AA, Shepard E et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American college of critical care medicine task force 20042005. Crit Care Med 2007; 35: 605622. 8 Melnyk BM, Alpert-Gillis L, Feinstein NF, Fairbanks E, Schultz-Czarniak J, Hust D et al. Improving cognitive development of low-birth-weight premature infants with the COPE program: a pilot study of the benet of early NICU intervention with mothers. Res Nurs Health 2001; 24: 373389. 9 Melnyk BM, Feinstein NF, Alpert-Gillis L, Fairbanks E, Crean HF, Sinkin RA et al. 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. Pediatrics 2006; 118: e1414e1427. 10 Byers JF, Lowman LB, Francis J, Kaigle L, Lutz NH, Weddell T et al. A quasi-experimental trial on individualized, developmentally supportive family-centered care. JOGN Nurs 2006; 35: 105115. 11 Thurman SK. Parameters for establishing family-centered neonatal intensive care services. Child Health Care 1991; 20: 3439. 12 Dobbins N, Bohlig C, Sutphen J. Partners in growth: implementing family-centered changes in the neonatal intensive care unit. Child Health Care 1994; 23: 115126. 13 Gale G, Franck LS. Toward a standard of care for parents of infants in the neonatal intensive care unit. Crit Care Nurse 1998; 18: 6274. 14 Brazy JE, Anderson BM, Becker PT, Becker M. How parents of premature infants gather information and obtain support. Neonatal Netw 2001; 20: 4148. 15 Bruns DAQ, McCollum JA. Partnerships between mothers and professionals in the NICU: caregiving, information exchange, and relationships. Neonatal Netw 2002; 21: 1523. 16 Grifn T. Family-centered care in the NICU. J Perinat Neonat Nurs 2006; 20: 98102.

Conclusions A recent article on improving practices in the NICU pointed out that family-centered care is more of a journey than a destination.19 Clearly, much progress has been made over the years in rening NICU practices to better meet the needs of parents. Nonetheless, the results of our study indicate that a considerable proportion of parents are having less-than-optimal experiences in the NICU, suggesting substantial room for improvement. Continual reassessment of parental needs, coupled with more in-depth attention to strategies for meeting those needs, should help NICUs more closely fulll the objectives of FCC.
Acknowledgments
The Preemie Health Coalition funded this survey through the support of MedImmune Inc. We thank the Preemie Health Coalition, including co-leads American Academy of Pediatrics, March of Dimes Foundation and National Association of Neonatal Nurses, and members: American Hospital Association, American Medical Womens Association, Association of Womens Health Obstetric and Neonatal Nurses, Childrens Medical Ventures, Family Voices, Institute for Family-Centered Care, Maternal Child and Health Bureau, MedImmune, Mothers of Supertwins, National Association of Pediatric Nurse Practitioners, National Association of Perinatal Social Workers, National Perinatal Association, National Rural Health Association, Newborn Individualized Development Care and Assessment Program Federation

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17 Grifn T, Abraham M. Transition to home from the newborn intensive care unit. Applying the principles of family-centered care to the discharge process. J Perinat Neonat Nurs 2006; 20: 243249. 18 Board on Health Sciences Policy, Institute of Medicine Committee on Understanding Premature Birth and Assuring Healthy Outcomes. Societal costs of preterm birth. In: Behrman RE, Butler AS (eds). Preterm Birth: Causes, Consequences, and Prevention. The National Academies Press: Washington, DC, 2007, pp 398429. 19 Cisneros Moore KA, Coker K, DuBuisson AB, Swett B, Edwards WH. Implementing potentially better practices for improving family-centered care in neonatal intensive care units: successes and challenges. Pediatrics 2003; 111: e450e460.

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