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Journal of Perinatology (2007) 27, S38–S44 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

National Office, 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 benefits of FCC in terms of enhanced parent–infant interactions, better mental health for parents and improved outcomes for infants.8–10 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.11–17 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 satisfied with the access, attention and information received from physicians and nurses in the NICU. However, approximately one-fourth were only moderately satisfied and nearly 10% were dissatisfied. 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. Specific attention should be given to providing more information and interaction opportunities for families, which may ultimately improve NICU outcomes. Journal of Perinatology (2007) 27, S38–S44; doi:10.1038/ 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, defined as births occurring at <37 weeks’ gestation.1 This figure 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 first 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:

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

Notably.7 16.05 vs black/African American. 33 to 34 weeks in more than one-third. 2. Parental NICU involvement A 10-point scale was used to rate a series of prelisted adjectives describing parents’ feelings on first arriving in the NICU with their infant.7 6. In addition. respectively.0 24.Premature Birth National Need-Gap Study SD Berns et al S39 administered to participants and it encompassed the following FCC topics: parental NICU involvement.0 46. The statement that ‘nurses wouldn’t allow me/wasn’t allowed to hold baby’ was cited by 20% of parents whose infants had a gestational age of 35 to 36 weeks. Furthermore. Journal of Perinatology . the length of stay Table 1 Characteristics of the study population Gestational age (weeks) Total (n ¼ 502) % White/Caucasian (n ¼ 382) % Ethnic group Black/African American (n ¼ 62) % 21. Significantly more African American parents were encouraged to do so when compared with Caucasian parents (92 vs 83%.88 weeks overall. all comparisons were made by a Standard t-test to determine differences between cells at the 95% level of confidence. and ‘other’. Asian.3 41.1 9. Significantly more African Americans achieved their desired degree of involvement in the NICU than did Caucasians (87 vs 76%.7 20 20.0 Pp0.05 vs black/African American and Asian. communication.1 20.7 11.0 8. respectively. cPp0. 4. providing breast milk (56%) and bathing (50%). Pp0.4c 26.7b 6.6 22. The gestational age was 35 to 36 weeks in more than one-third of infants.9 18. respectively.27 among Asians and 3. the adequacy of information provided to parents concerning the care of their premature infant and the sufficiency of parents’ preparation for arriving home from the hospital. dPp0. and top ratings were given to feelings of being ‘nervous’ or ‘overwhelmed’ by 70% of parents. significantly 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%.05).72 among other ethnic groups. Pretesting for comprehension among 15 subjects was conducted from 10 to 16 October 2006. the quality of communication between parents and hospital professionals. Among Results Characteristics of the study population A total of 7233 households were screened nationally.0a 17.0 16. The respondents represented a cross-section of ethnicities.4 21. and fieldwork was conducted from 23 October to 17 November. and p32 weeks in more than one-fourth. The difference between African Americans and Asians was statistically significant (Pp0.05 vs ‘other’. The hypothesis of the study was that health-care professionals in the NICU adequately prepare parents to care for their premature infants.05). whereas 22% said they would have liked to be more involved. Characteristics of the study population are summarized in Table 1.5 21. For the statistical analysis.05).9d Hispanic (n ¼ 46) % Asian (n ¼ 15) % Other (n ¼ 25) % 36 35 34 33 p32 a 14. of which 502 qualified for the study. but more could be done to ensure that parents’ needs are met both in the NICU and during the transition to home.35 among Hispanics.71 among Caucasians. information and transition to home.2 10. 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. Pp0.05).1 13. 78% answered ‘yes’. Broad areas examined included the extent and degree of satisfaction associated with parental involvement in the NICU. 2006. The major ways parents were able to participate in the care of their infant were via holding the baby (89%). bPp0. changing diapers (80%). Pp0.05 vs white/Caucasian. a disproportionate number of children with a gestational age p32 weeks came from the African American community (see Table 1). A total of 85% of parents indicated that they were encouraged to become involved with the care of their baby in the NICU.05).9 17.7 28. Of the 502 respondents. the main reasons cited were resistance of nurses (29%) and limited visiting hours (20%).05).0 36. The highest ratings were given to feelings of being ‘worried’ or ‘scared’ by 80% of parents. was significantly longer among children with a gestational age p32 weeks compared to 33 to 34 weeks or 35 to 36 weeks (Pp0. 93% were primary caregivers and 89% were female. When parents were asked whether they were as involved in the NICU as they wanted to be.7 23. 2. the differences between groups were not significant.9 26.05 among African Americans 2.8 20. The mean length of stay in the NICU was 2. Among parents who were not as involved in the NICU as they wanted to be. Hispanic.0 12. Parents of infants with a gestational age p32 weeks were significantly more likely to report feeling ‘confused’ when compared with parents of less premature infants (Pp0.

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.5 2.5 67. The proportion of parents who believed that these caregivers listened ‘very much’ was significantly higher among African Americans than among Caucasians.2 67.5 1. The proportion of parents who felt ‘very comfortable’ was 69% overall and was significantly higher among African Americans than Caucasians Journal of Perinatology (86 vs 68%.0 26.3 33.’ A significantly greater proportion of African Americans than Caucasians expressed this belief (76 vs 58%. Pp0.05 vs p32 weeks. bPp0. whereas 7% felt ‘not very comfortable’ or ‘not at all comfortable.3 3.7 68.3 45.6 1.2 60.’ Parents were also asked about the extent to which they were satisfied with the degree of involvement they were given in decision-making about the care of their infant. those parents who were less involved in the NICU than they desired.2 72. Gestational age (weeks) 33–34 (n ¼ 46) % 71.8 21.6 68.05).6 43.5 25.2 69.0 25. respectively.1 4. bPp0.5a 13.05 vs other.4c.5 Pp0.6a.6 p32 (n ¼ 23) % 65.0a 34.8 23. respectively. Only a small minority of respondents felt that the nurses and physicians listened ‘not very much’ or ‘not at all.8 55.5 39.4 52.5 17.05 vs Asian.8 1.7 69.0 41.05 vs black/African American.4 23.6 69. with interest peaking for those families whose children were born very preterm (p32 weeks). 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).2 2. found that most parents felt that the nurses and physicians in the hospital listened to concerns they had about their baby (Table 3). Pp0. respectively.7 37.7 19.5 15.6 Hispanic Asian Other (n ¼ 46) % (n ¼ 15) % (n ¼ 25) % Gestational age (weeks) 35–36 (n ¼ 182) % 33–34 (n ¼ 179) % p32 (n ¼ 141) % 68.4 4.0 28. Slightly fewer than one-fourth of parents (24%) felt ‘moderately comfortable’ asking questions.9 20.5 42.2a 34.5 45.8 43. cPp0.Premature Birth National Need-Gap Study SD Berns et al S40 Table 2 Activities in which parents desired greater involvement in the NICU Activity Total (n ¼ 109) % 35–36 (n ¼ 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.0 33.3 6. The proportion of parents able to do so was significantly higher among African Americans than among Caucasians (90 vs 79%.’ Another question. dPp0. Communication Eight out of every 10 parents (80%) said they were able to talk as much as they wanted with the baby’s nurses and physicians during the time the baby was in the hospital.b 41.0 8.7 3. This response was given by 60% of parents of children with a gestational .0 0 69. neonatal intensive care unit.05 vs 35–36 weeks.8 24.5 17. One-fifth of parents surveyed (20%) indicated that they were not able to talk as much as they wanted with the medical caregivers.7b 3.05).05).9 2.6 67.d 67. The degree of interest in kangaroo care correlated with the gestational age of the family’s child. a Pp0.1 30.7 0 76.0 16. Responses on a 4-point scale revealed that 60% of parents were ‘very satisfied.5 1.05 vs white/Caucasian.0 42.3a 14.4 23.0 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 ¼ 502) % White/ Caucasian (n ¼ 382) % Very much Somewhat Not very much Not at all a Ethnic group Black/African American (n ¼ 62) % 82.0 70. A response of ‘very satisfied’ was also significantly more common among parents of children with a gestational age p32 weeks as opposed to 33 to 34 weeks (68 vs 55%. respectively. using a 4-point scale.3 41.0 26.9 6. Pp0. Pp0.05).8 4.

When asked what one thing they would change about the information given in the NICU.8 82. 16%. Journal of Perinatology . A total of 89% of parents stated that they understood all or most of the written or oral information they were given. 13% of parents stated that they would have liked more information (particularly on feeding/breastfeeding and support groups).0 60.3c 12. respectively. This issue was cited significantly more often by Caucasians (22%) than by African Americans or Hispanics (5 and 11%. dPp0. to help them after the baby left the NICU. 16%. The information provided to parents was primarily verbal (86%).05 vs 33–34 weeks. The most useful sources. on the day of discharge. diapering (60%) and the development of a premature infant (58%).1 0 Ethnic group Hispanic Asian Other (n ¼ 46) % (n ¼ 15) % (n ¼ 25) % Gestational age (weeks) 35–36 (n ¼ 182) % 33–34 (n ¼ 179) % p32 (n ¼ 141) % 26.2 19. The topics discussed during preparation for taking care of the baby at home were most often washing and bathing (73%). The major sources of such information were websites (74%).9 19. other than the physicians and nurses.7e 1.0 56. neonatal intensive care unit. including washing and bathing the newborn (71%). 26% of parents cited the need for more information in general.0d 32. infant development (56%). cardiopulmonary resuscitation (17%) and how to care for the baby at home (16%). A total of 87% of respondents said they were given information about the baby’s progress and whether the development was on target.7 0.3 82. In the majority of cases (86%). how to care for the baby at home (61%). Other desired changes were ‘better and quicker communication’ (11% of the overall group). a significantly greater proportion of Caucasians indicated that they did not receive enough information. One-fifth stated that they were not given enough information.3 0 76. knowing where to go for support after leaving the NICU (25%). The top answer was ‘more communication. The information provided to parents covered a wide range of topics. A total of 62% of parents stated that they looked for information about caring for their infant from sources other than the baby’s physicians and nurses. Transition to home Only 37% of parents surveyed received preparation for the transition home throughout most of the infant’s stay in the NICU. 1 week before discharge.5 Black/African American (n ¼ 62) % 4.5d 0. Table 4 Parents’ ratings of the amount of information they were given concerning their infant’s care during the stay in the NICU Amount of information Total (n ¼ 502) % White/ Caucasian (n ¼ 382) % Too much Just the right amount Not enough No information 3. bPp0. The major topics cited were the development of a premature infant (31%). and books (44%).8 0 Abbreviation: NICU.05 vs ‘other’. Pp0. the NICU nurse was the individual who prepared the parent for taking the baby home.6 22.6b 13. breastfeeding (53%) and administering medications (42%).0 13. family and friends (62%). breastfeeding (60%).05 vs black/African American. Another area of inquiry concerned topics the parents wished they had received more information about while in the NICU.7% of parents indicated that they received such preparation beginning on the day of admission.2 0 67.3%. feeding/ giving breast milk (67%). including information on specific issues or problems. a few days before discharge.1 68. either in the hospital or after taking the baby home.3b 8. feeding or providing breast milk (69%). whereas 10% felt ‘not very satisfied’ or ‘very unsatisfied. cPp0. and 1%.Premature Birth National Need-Gap Study SD Berns et al S41 age of 35 to 36 weeks. A total of 29% of parents felt ‘moderately satisfied’ with their degree of involvement in decision-making. Another 9.7 73. and 13% expressed a desire for more hands-on experience.4 74.4 9. ‘permit more (parental) involvement’ (9%) and ‘better access to information’ (5%). the use of car seats (64%). ePp0. Compared with African Americans.’ cited by 19% of respondents. never. 9.0 0 60.8 74. diapering (62%). information regarding a specific challenge the baby was facing (21%). A total of 43% of parents said they would not change anything. When asked what one thing they would change about how the hospital staff prepared them to take the baby home. were considered to be websites (39%) and family and friends (33%). but also in the form of brochures (65%) and handouts (59%).05 vs p32 weeks. the infant’s development and feeding/breastfeeding. Information Three-fourth of parents felt they were given ‘just the right amount of information’ concerning their baby’s care during the stay in the NICU (Table 4).05).0 69.’ In another question. a Pp0.7a 82. practice and preparation time.05 vs white/Caucasian.8 25. parents were asked what one thing they would change about the level and amount of communication with their infant’s NICU nurses and physicians.0 69.0 32. follow-up visits (62%).

Feelings rated among the top two were ‘happy’ or ‘excited’ in more than 80% of cases. For instance. one-fourth of parents are. Specific inquiries were made of 228 parents who indicated that their experience in the NICU did not lead them to feel very confident about caring for their infant at home.Premature Birth National Need-Gap Study SD Berns et al S42 Special needs when bringing the baby home most frequently included the use of an apnea monitor (40%) and oxygen (30%).05).05). On average. Additional goals are:  Encouraging the NICU to provide more information to parents on premature infant development. After the baby left the hospital. a pilot study evaluating the Creating Journal of Perinatology Opportunities for Parent Empowerment (COPE) NICU program found that mothers participating in this educational-behavioral intervention had less stress in the NICU. The feelings parents experienced when first bringing their infant home were evaluated on a 10-point scale listing various adjectives. Pp0.05). To address these shortcomings. and stronger parental beliefs regarding their role and the types of behaviors and characteristics to expect of their infants during hospitalization. Such communication was significantly more common when the infant was African American or Hispanic as opposed to Caucasian (69 and 70 vs 52%. In a subsequent randomized. only moderately satisfied. These findings demonstrate that health-care professionals have an opportunity to better the parental experience in the NICU and help improve outcomes.5 days). More than 40% of parents rated feelings of being ‘safe.05).10 The participants in the present study were representative of the general US population of parents with premature infants. the infants of the parents who participated in this program had shorter lengths of stay in the NICU.18 The results of the study suggest that most parents of premature children are reasonably satisfied with the access. More than one-half of parents (56%) reported that the physicians and/or nurses at the hospital communicated with the baby’s primary health-care provider after the infant left the hospital. and nearly 10% are mostly or completely dissatisfied. The study revealed several specific areas in which parents indicated either moderate or less satisfaction. the average length of an inpatient hospital stay for a preterm infant is 13 days.05).2 and 91. 28% in 3 weeks to 2 months and 8% in 3 months to 1 year. attention and information they are receiving from physicians and nurses in the NICU. 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. respectively.05). The primary health-care provider was cited by significantly more Caucasians and Hispanics compared to Asians (57 and 67 vs 27%. Pp0. The proportion of parents who consulted friends and family members was significantly higher among African Americans (66%) than among Hispanics and Asians (41 and 33%. Pp0. Another trial reported that preterm infants who received developmentally supportive FCC exhibited less stress. it is of utmost importance to attempt to improve areas in which additional guidance and support are being sought. respectively. their infants scored higher on measures of cognitive development at 6 months’ corrected age. Considering the frequency with which parents cited fear and anxiety when approaching the NICU. significantly less maternal stress in the NICU. nurses and physicians in the NICU should become more sensitive to the following goals:  Alleviating parents’ fear and uncertainty upon arrival at the NICU. the majority of parents (55%) named the primary health-care provider. Pp0. The advantages of FCC have been demonstrated in a variety of clinical studies. A total of 32% indicated that they felt very confident in less than 1 week. at best. Parents of more premature infants (those with gestational ages of 33 to 34 weeks or p32 weeks) were significantly more likely to cite ‘happy’ feelings on first bringing the baby home when compared to parents of babies with a gestational age of 35 to 36 weeks (87. Pp0. as indicated by the fact that prematurity levels and lengths of stay were in line with national averages. Pp0. Consultation with the primary healthcare provider was significantly more common among Caucasians and Hispanics than among African Americans (86 and 91 vs 74%. each of which was significantly more common for infants with a gestational age p32 weeks compared to those born less prematurely (Pp0. When asked to identify the most important source of information and advice after the baby left the hospital.9 In addition. respectively. parents most frequently turned to the primary health-care provider as a source of information and advice (in 85% of cases). however.1 vs 79.’ ‘nervous’ or ‘confident’ among their top two. Friends and family members constituted the second most common source of information and advice (in 54% of cases). 29% in 1 to 2 weeks. the COPE program was associated with more positive interactions between parents and their infants. controlled trial. nine times as long as the average length of stay for an infant born at term (1. challenges the baby is likely to face and outside support resources available . and beginning preparation earlier during the NICU stay. as well as their concerns about caring for their infants at home. 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 infant’s progress and development through a variety of methods  Preparing parents for the transition home. respectively. respectively.8 In addition.0%.05) and by significantly more Hispanics compared to African Americans (67 vs 46%.

13 Gale G. should help NICUs more closely fulfill the objectives of FCC. 18: 62–74. Fairbanks E. including co-leads American Academy of Pediatrics. no. American Academy of Pediatrics: Elk Grove Village. National Rural Health Association. Menacker F. The National Academies Press: Washington. Births. 7 Davidson JE. Alpert-Gillis L. 12 Dobbins N. to talk as much as they wanted with the infant’s physicians and nurses. 10 Byers JF. 118: e1414–e1427. Franck LS. Newborn Individualized Development Care and Assessment Program Federation Journal of Perinatology . 35: 605–622. and Zero to Three. 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. MD. Nonetheless. Sutphen J. coupled with more in-depth attention to strategies for meeting those needs. Becker M. 1. developmentally supportive family-centered care. Johnson BH. and Prevention. suggesting substantial room for improvement. Changing the Concept of Families as Visitors: Supporting Family Presence and Participation. Weddell T et al. 2006. Crean HF. Kaigle L. 14 Brazy JE. to feel ‘very comfortable’ asking questions of those professionals. Institute for Family-Centered Care. IL. Feinstein NF. Francis J. to achieve their desired degree of involvement. for instance. 6 American Academy of Pediatrics Committee on Hospital Care. National Perinatal Association. 112: 691–696. 3 American Academy of Pediatrics. participation was limited to English speakers only. 4 Harrison H. 92: 643–650. MedImmune. Society for Developmental and Behavioral Pediatrics. 20: 98–102. 20: 34–39. Ventura SJ. 2 Board on Health Sciences Policy. Pediatrics 1993. 16 Griffin T. The study also brought to light important disparities in the NICU experiences of parents from different ethnic groups. and relationships. Kirmeyer S. American Medical Women’s Association. Anderson BM. Mothers of Supertwins. A quasi-experimental trial on individualized. Some limitations of this study should be noted. Improving cognitive development of low-birth-weight premature infants with the COPE program: a pilot study of the benefit of early NICU intervention with mothers. BioScience Communications. 24: 373–389. Institute for Family-Centered Care: Bethesda. Family Voices. National Center for Health Statistics: Hyattsville. 2003. Res Nurs Health 2001. We thank the Preemie Health Coalition. Crit Care Med 2007. pp 31–52. Crit Care Nurse 1998. Lutz NH. information exchange. 8 Melnyk BM. Child Health Care 1994. Feinstein NF. 2007. NY. vol. Guidelines for Perinatal Care. most of the respondents were primary caregivers and female. 20: 41–48. In: Behrman RE. Association of Women’s Health Obstetric and Neonatal Nurses. with a grant from MedImmune Inc. Fairbanks E. and members: American Hospital Association. Children’s Medical Ventures. Child Health Care 1991. Schultz-Czarniak J. JOGN Nurs 2006. conducted by USA/DIRECT Inc.’ Caucasians were significantly 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.. In addition. Sutton PD. First. Sinkin RA et al. Neonatal Netw 2001. Family-centered care and the pediatrician’s role. 55. Maternal Child and Health Bureau. Alpert-Gillis L. McCollum JA. 23: 115–126. Preterm Birth: Causes. Compared with Caucasians. 15 Bruns DAQ. Policy statement. Partnerships between mothers and professionals in the NICU: caregiving. Family-centered care in the NICU. Hamilton BE. Parameters for establishing family-centered neonatal intensive care services. Hedayat KM. Toward a standard of care for parents of infants in the neonatal intensive care unit. Continual reassessment of parental needs. Lowman LB. Bohlig C. so the results may not reflect how well the needs of ancillary caregivers or fathers are being met in the NICU. assisted in the preparation of this manuscript. may be subject to recall bias (reporting bias) because responses are dependent on the participants’ ability to remember specific experiences. Institute for FamilyCentered Care. Conclusions A recent article on improving practices in the NICU pointed out that ‘family-centered care is more of a journey than a destination’. African Americans were significantly more likely to feel encouraged to become involved with their infant’s care. Partners in growth: implementing family-centered changes in the neonatal intensive care unit. 9 Melnyk BM.19 Clearly. Hust D et al. American College of Obstetricians and Gynecologists. National Association of Perinatal Social Workers. controlled trial. Disclosure The Preemie Health Coalition funded this survey. March of Dimes Foundation and National Association of Neonatal Nurses. 35: 105–115. Powers K. Shepard E et al. The principles of family-centered neonatal care. 5th edn. Kon AA.Premature Birth National Need-Gap Study SD Berns et al S43  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. Institute of Medicine Committee on Understanding Premature Birth and Assuring Healthy Outcomes. Introduction. 2002. National Association of Pediatric Nurse Practitioners. Acknowledgments The Preemie Health Coalition funded this survey through the support of MedImmune Inc. 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. much progress has been made over the years in refining NICU practices to better meet the needs of parents. How parents of premature infants gather information and obtain support. It should also be noted that retrospective studies such as this. USA. Final Data for 2004. 21: 15–23. Neonatal Netw 2002. based on interviews and questionnaires. the results of our study indicate that a considerable proportion of parents are having less-than-optimal experiences in the NICU. National Vital Statistics Reports. Tieszen M. Pediatrics 2006. J Perinat Neonat Nurs 2006. Consequences. 5 Ahmann E. and to feel that the caregivers listened ‘very much. Becker PT. References 1 Martin JA. Pediatrics 2003. New York. Butler AS (eds). DC. 11 Thurman SK. Abraham MR. In addition. pp 3–5. Preemie Magazine. International.

Coker K. Journal of Perinatology . DC. Abraham M. and Prevention. Societal costs of preterm birth. 2007. J Perinat Neonat Nurs 2006. Edwards WH. DuBuisson AB. Applying the principles of family-centered care to the discharge process. Butler AS (eds). 111: e450–e460. Swett B. Implementing potentially better practices for improving family-centered care in neonatal intensive care units: successes and challenges. Consequences. 18 Board on Health Sciences Policy. 20: 243–249. The National Academies Press: Washington. Pediatrics 2003. Preterm Birth: Causes. pp 398–429. Transition to home from the newborn intensive care unit.Premature Birth National Need-Gap Study SD Berns et al S44 17 Griffin T. 19 Cisneros Moore KA. Institute of Medicine Committee on Understanding Premature Birth and Assuring Healthy Outcomes. In: Behrman RE.