DOCUMENT RESUME ED 390 557 PS 023 858 AUTHOR Fenichel, … · 2014-07-18 · DOCUMENT RESUME. PS...

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ED 390 557 AUTHOR TITLE INSTITUTION REPORT NO PUB DATE NOTE AVAILABLE FROM PUB TYPE JOURNAL CIT EDRS PRICE DESCRIPTORS IDENTIFIERS ABSTRACT DOCUMENT RESUME PS 023 858 Fenichel, Emiiy, Ed. Zero to Three, June/July 1995. Zero to Three/National Center for Clinical Infant Programs, Arlington, VA. ISSN-0736-8086 Jul 95 45p. Zero to Three, 2000 14th Street North, Suite 380, Arlington, VA 22201-2506 (1-year subscription, $7 CO11ected Works Serials (022) Zero to Three; v15 n6 Jun-Jul 1995 MF01/PCO2 Plus Postage. Child Development; Childhood Needs; Health Needs; Health Personnel; Health Services; *Infant Care; *Neonates; *Parent Child Relationship; *Premature Infants *Neonatal Intensive Care Units; Zero to Three This issue of Zero to Three, the bulletin of the National Center for Clinical Infant Programs, focuses on changes occurring in neonatal intensive care to provide greater developmental nurturance to newborns and their parents. Articles include: (1) "Developmentally Supportive Care in the Neonatal Intensive Care :init" (Heidelise Als and Linda Gilkerson); (2) "Newborn Intensive Care Units Pioneer Family-Centered Change in Hospitals across the Country" (Beverley H. Johnson); (3) "The Colorado Consortium of Intensive Care Nurseries: Spinning a Web of Support for Colorado Infants and Families" (Joy V. Browne and Suzanne Smith-Sharp); (4) "Nursing the Premature Infant" (Lydia Furman); and (5) "Early Intervention and the NICU Health Professional: An Interdisciplinary Training Model" (Virginia Wyly and Jack Allen). The issue also includes letters to the editor, reviews of publications and videos, descriptions of upcoming conferences, and a topic index of 1995 issues. (JW) Reproductions supplied by EDRS are the best that can be made * from the o-iginal document. *********************************************************************

Transcript of DOCUMENT RESUME ED 390 557 PS 023 858 AUTHOR Fenichel, … · 2014-07-18 · DOCUMENT RESUME. PS...

Page 1: DOCUMENT RESUME ED 390 557 PS 023 858 AUTHOR Fenichel, … · 2014-07-18 · DOCUMENT RESUME. PS 023 858. Fenichel, Emiiy, Ed. Zero to Three, June/July 1995. Zero to Three/National

ED 390 557

AUTHORTITLEINSTITUTION

REPORT NOPUB DATENOTEAVAILABLE FROM

PUB TYPEJOURNAL CIT

EDRS PRICEDESCRIPTORS

IDENTIFIERS

ABSTRACT

DOCUMENT RESUME

PS 023 858

Fenichel, Emiiy, Ed.Zero to Three, June/July 1995.Zero to Three/National Center for Clinical InfantPrograms, Arlington, VA.ISSN-0736-8086Jul 9545p.

Zero to Three, 2000 14th Street North, Suite 380,Arlington, VA 22201-2506 (1-year subscription,$7CO11ected Works Serials (022)Zero to Three; v15 n6 Jun-Jul 1995

MF01/PCO2 Plus Postage.Child Development; Childhood Needs; Health Needs;Health Personnel; Health Services; *Infant Care;*Neonates; *Parent Child Relationship; *PrematureInfants

*Neonatal Intensive Care Units; Zero to Three

This issue of Zero to Three, the bulletin of theNational Center for Clinical Infant Programs, focuses on changesoccurring in neonatal intensive care to provide greater developmentalnurturance to newborns and their parents. Articles include: (1)

"Developmentally Supportive Care in the Neonatal Intensive Care :init"(Heidelise Als and Linda Gilkerson); (2) "Newborn Intensive CareUnits Pioneer Family-Centered Change in Hospitals across the Country"(Beverley H. Johnson); (3) "The Colorado Consortium of Intensive CareNurseries: Spinning a Web of Support for Colorado Infants andFamilies" (Joy V. Browne and Suzanne Smith-Sharp); (4) "Nursing thePremature Infant" (Lydia Furman); and (5) "Early Intervention and theNICU Health Professional: An Interdisciplinary Training Model"(Virginia Wyly and Jack Allen). The issue also includes letters tothe editor, reviews of publications and videos, descriptions ofupcoming conferences, and a topic index of 1995 issues. (JW)

Reproductions supplied by EDRS are the best that can be made*

from the o-iginal document.*********************************************************************

Page 2: DOCUMENT RESUME ED 390 557 PS 023 858 AUTHOR Fenichel, … · 2014-07-18 · DOCUMENT RESUME. PS 023 858. Fenichel, Emiiy, Ed. Zero to Three, June/July 1995. Zero to Three/National

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TO THE EDUCATIONAL RE.SOUHCE::INFORMATION CENTER mER"

Developmentally Supportive Carein Neonatal Intensive Care Unit

Heidelise Als,Associate l'rofessor of Psychology. Department of Psychiatryfarvard Medical School and Children's

Hospital,Boston, Massachusetts

Linda Gilkerson, Phi)l'rofessor and Director, Irving U. I larris Infant StudiesProgram, Erikson Institute, Chicago, Illinois

in the

Over the past 15 years, neonatal intensive care unitshave been involved in a transformation of care whichhas been described as the most profound change thathas occurred in neonatal nursing practice (Gilkerson &Als, 1995). These nurseries are moving toward a newmodel of family-centered, developmentally supportivecare--a professional and family alliance which supportsthe parent's engrossment with their child and the

neurobiologically-based expectations for nurtu-ranee (Als, 1993).

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Editor's Notethe ontributois to this is-aio iii /, la to / hii e ale pioneer-. in

mo ement to help intensive Late nut-wiles hot onn' not 0111 \

loilmnall ploln lent me, hanisms sa mg tiii ii es of

preterm and L ritiL \ iii ntants but also supporto.e. nurtur

111:!, lii ininments With 11 cullonec the de\ elopmentUi (lived the infant the lainth and the ...tau

10\ Uri, \\ lie and swami(' ',midi sharp", midge 01 "v, (.1)

of ,upport. \\IuL h they use in relation to the C olorado onsortnim ot Intensive L. are nurseries, aptli desk ribes mon\euoi ts to pro\ ide de\ clopmentally supportive ond fainthi'lltt'red "le ill the \ and be\ ond 11 1 1 \ 1 and

1 ludo alkerson. lor e\ ample, LA plore the responsibitivL Linnet tt.'t.hilt.'''. p. '('ii arding, but ditticult. in the intensivist,inteldependent N1( t environilli.nt. erlev lohnson

describe-. o \\ ob- ot tannly-L entered Lore, plornoting praL -(ices that nurture the strong b9nds that begin betweeninfants and their families before birth and supporting thoserelationships throughout the intensive Lare e\perient e.1)(.st:ribing the challenge of tnirsing a premature intant.1 vdia Furman mites that -nursing is a relationship, and its-upport 111,1v best be ak t.:Implished via a relatiLinship- pLisAN \ trom a nursing -douta.- Virginia \\',1v and la, k Allenrecogniie the challenge ot providing familv-centered early

intervention services iii the \ through discharge, and intransition to community early intervention servRes--andtheir integrated training ot NICL: health professional" andt.'arli inter\ entionists is helping to make this happen.

An especially skilltul web-spinner is Marg. Wagner, whodescribe-. no less than P4 videotapes, for parents and profes-sional audiences, about the care ot premature and high-riskimams, in the N I(I.. and atter discharge.

I MI[li I'M( [

ContentsimImmlmm

1 1)evelopmentally Supportive Care in thy \conatalIntensive Care UnitIlchlelise.11.: int,/ I ohla Calker,on

11 \ewborn hitensive ( are I 'nits Pioneer 1..111111\centered Change in I lospitals acniss the ountr\

lolmsoil

18 Hie olorado onsortium ot Intensive Care 'Nurseries:Spinning a 1Velri ot L,upport tor C. olorado Infants andFamilieslot/ litOinle Mid tilt:Thole

24 Nursing the Premature InfantI lidlii I finnan

30 Fatly Intervention and the NICI 1 lealth Prolessional.

An Interdisciplinary 'training ModelINI/11/ and folk Allen

36 I etters to the Fditor

37 l'obliL

39 Videotapes

41 Conference Call

42 liupit ii Indy \ volume 17,

2 Ione 'lob: latri Zero to Three

Zero to Three StaffI ditor, Lunihi it todwit

on.sulting 1 ditoN, leree Pawl and lath ,,limikott

Assistant f ditor, Vieliotape Ala, eh WagneAN. to Ito" I, tit, ti nioialth, nui a' 5l, I i) Ink!! \,?i,,u,,ii t. trail

t !lima? Infilin Programs Unless other,ose noled materials published oi

la [Mee Mao lera(111(1%1 liv 11,-.11(h rine-,10(1111, enirla(A'1, Onh fir

Menthe?, tO 'PM inaln edit( ation MO onani"11! ion. far non 0111111,

1.11 ((v.. /inward Phi, R(1 lit ill RI ICrowd? llama Progianis as the Nil( rt flirt! lapiA'R:11( aienet (51 nline::(11

ISSN 0736-808b1995 /.1-.R0 tit I I lid f /National Center for Intant

Vnigrani,,2000 14th Street North, Suite 380, Arlington, VA 22201-25Onlel: (7031 528-1300

Publhations orders: I-800-899-4301

ZERO TO THREE/National Center for Clinical Infant ProgramsBoard of Director-,Kathryn E. Barnard, University of Nrshorglori

lk.rry Bra/elton, Children's I lospaal Meori, al Leiner Itosr.o:

Maria D. Chavez, University ot New Mevi,Robert N. Emde, Univer:ityot Colorado School et Medi, liii

Linda (;ilkerson, rrikson laq it ute, Chrorgo

Stanley 1 Greeiwpan, George Washington limn., sity hoot ,0 11,.11, vie

Robert J. Ilarmon, University ot Colorado School or

Irving B. liarris, Pittway Corporation, ChitagoAsa Grant thlhard,111, Georgia State University, Atlanta

Gloria Johnson-Powell, I lamard Medical &hoof

Sheila 13. Kamerman, Columbia Unwersity Shoot or Slit :al lio.k

Anneliese F. Korner, Stanford University A !Mica! Center

I. Ronald Lilly, Tar West Laboratory, San Francis, o

Bernard Levy, New York CityAlicia F. Lieberman, Una-versa y of California, San Fran, iso

Samuel J. Meisels, University of Michigan,Inn Arbor

Dolon, G. Norton, University of ChicagoRobert A. Nov...r. George Washington Uniccrsity t.i hi ti/il MO/4 Hie

foy 0. Omitsky, [Ann:nal:a Stale Univerqty Medical t 'ewe, Ne.c u i bons

leree II. l'awl. University of California, San I- raniNco

Deborah A. Phillips, National Research Conn, il, W'ashnigron

Kyli. Pruett, Yale llniversity School of Medu

Arnold J. Samerott, University of Michigan, Ann Arbor

Marilyn M. Segal, Nova Unwersity, Lauderdale

Rebecca Shahmoon Shanok, Jewish Board of lanuly f. Children

New York CityP Shonkotf, Brandeit University. Waltham, Massa, Iniscri

I %Tin C; Straits, Mamaroneck. Neu' lark

Ann P lu rnhutll. University of Kan.yvi, t aterme

Bernice Weksbourd, family Pew, Inc . Chitago

Serena Wieder, Silver Spring. Maryland

;onion Williamson, Medical Center, Idison. New loses

Barry Zuckerman, Boston Univerqty Schoot Medy ore

Life MembersMary D. Salter Ainwsorth, University ot Virginia

Peter Blos, Jr., Ann Arbor, Michigan

Peter 13 Neubauer, Nrw York CityArthur I I. Parmelee, University of California Aqua! Center, I os Angeles

Jolnis 15 Richmond, Harvard Unwermly Medical School

Mary Robinson, Morgan Slate University, Baltnnore

Pearl L. Rosser, Siltrr Spring, Maryland

Albert J. Solnit, New I laven, Connecticut

1-dward Zigler, Yale University, New Iliwen

Lsecutive Director, Matthew MelmedAssociate Directors, Carol Berman, Fmily Fenichel, and Ilaida W.:mem

This publication was made possible in part by a grant fromlohm.on & Johnson Consumer Companies.

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DevelopmentallySupportive Care in theNeonatal IntensiveCare Unit

I

Brain development in the hill-term intant occurs inthe intrauterine environment, an environment me.i ia tedby maternal pnitection from environmental perturba-tions, with an ongoing supply ot nutrients, continuoustemperature control, and regulating chronobiologicalrhythms. In contrast, premature infants are cared for inthe NICC, at the time when their brains are growingmore rapidly than any other period in their life lcl.en-non, ( illes, Sz. Neff, 1983). The preterm infant's nervoussystem is being shaped in a setting characteri/ed bysensory overload and, therefore, by a stark sensory mis-match to the developing nervous system's e,,pectationfor environmental inputs (Als et al, 1979; Freud, 1991;(;ottfried & Gaiter, 1985; Wolke, 1987). From an evolu-tionary perspective as members of the human species,preterm infants are neurobiologically social (Als, 1977;Ak et al, 1979; Ak & Duffy, 1982) and expect the secu-rity of three inherited environments to support theirdevelopment: their mother's womb, their parents' bod-ies, and their family's social group (Hofer, 1987). Thus,safeguarding the parent's role as the infant's primarynurturers is fundamental to the survival and growth otthe premature infant (Als, 1992; Als, in press). I low doesone estimate the potential effects on the infant's nervoussystem of moving too early from the relative equilib-rium of the intrauterine aquatic econiche of the mother,to the extrauterine terrestrial environment of the N ICU(Alberts & Cramer, i 988) by-passing the on-parent bodyphase of early nurturance? What impact does this dis-ruption have on the infant's and family's development?I low can the life-saying intensive care nursery becomea supportive, mirturing environment that enhances thedevelopment of all involved?

Developmentally supportive carel'he developmental approach views the infant as anat tive collaborator in his own care, determinedly striv-ing to continue his developmental trajectory (Als, inpress). This approach postulates that the infant's behav-ior provides the best information base from which todesign care (Als, 1982). Collaborating with the infant,then, involves inferring from the infant's own behaviorwhat he seeks to accomplish and what strategies he isusing, and estimating Ivhat supports might he useful tofacilitate, the infant's overall development and neurobe-havioral organization in the face of necessary medical..nd nursing interventions. The questions become. Whatis the infant's developmental agenda? (Als, 1978) andI IOW i',111 regi vi ng IX' implemented in a way that

respects and furthers the mtant's development xyhile atthe same time accomplishes the caregiving goals?

The Newborn Indieldualized Developmental Careand Assessment Program iN IDCAP) model was devel-oped as a framework lor the implementation ot devel-opmental care ( Als ;ibes, I h t s ( ) ) . I he N !DCA Papproach includes a systematic method tor the detailedobservation of infant behavior and tor the use of eachinfant's unique repertoire ot strategies as a guide forcaregiving. Typically, a developmentally trained profes-sional works in partnership with a developmentallytrained nurse to support the primary care team and thefamily. The developmental professionals conduct theobservations, prepare detailed reports with suggestionsfor ways to support the infant's physiological stability,behavioral organization, and developmental progres-sionthd share this information with the caregivingteams and the family.

Behavioral observationThe detailed behavioral observation documents the lan-guage of the infant's behavior in three channels of com-numication: the autononlic system, motor system, andthe state system (Ak, 1982). As described elsewhere(Als, in press), the autonomic nervous system's func-tioning can be observed in the infant's breathing pat-terns, color fluctuation, visceral stability or instability,and autonomic behaviors such as tremors and startles.Is this an infant who breathes smoothly and regularly?Or does he quickly show, even when challenged withonly the slightest touch, movement, or sound, irregularrespiration, pauses or tachypneic bursts? ls this aninfant who maintains his color well throughout face andbody or does he quickly become pale, and cyanotic?Does this infant maintain a steady visceral system evenwhen interacted with vigorously or does he quicklybegin to hiccough, gag, spit up, or defecate in responseto mild input?

Simultaneously, motor system functioning can heobserved in the infant's body tone, postural repertoire.and movement patterns. Does the infant maintain tonewell, showing animated facial expression and well-toned limbs throughout? Or does he quickly become..flaccid, lose tone in the face, trunk,.and extremities?When still, does the infant maintain soft flexion or doeshe quickly become overly flexed, appearing to usehyperflexion for self-protection? Or, the opposite, doesthe infant overly extend arms, legs, lingers, and toes infull extension, face retracted, head, neck, and backarched and extended? When the infant moves, are themovements smooth and well controlled or are theyquickly disorganized, with poor flexor/extensor bal-ance?

The infant's state organization (13razelton, 198-0 canhe observed in terms of the intant's range of states, therobustness and modulation of the available. states, andthe patterns ol transition from state to state. Is this an

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intant who shows the full continuum ot states movingtr( 'm deep sleep to light sleep. to a dr()%\,,V Ctate, to quietak-rtness, to an active aroused state to upset and cryingbehavior? Or does the mtant twit ally move tnim sleepto a ri nised states and immediately back down to sleepagain, skipping the alert state? When the intant is sleep-ing, is the sleep nibust, or does the infant never quitesettle, showing tacial movenlents, vocal discharges, andgeneral restlessness? What is the quality of the infant'salert ',tat"? I his expression animated, with shiny-eyedalertness and gently forward-shaped mouth, availabletor engagement and interaction? Does the infant quicklymi we to panicked, wide-eyedness or does he barelyseem to muster the energy to interact through lidded,glassv-eved, strained appearance?

'Ube ob. ::ryations may be conducted weekly or ascliMeallv deemed necessary by a developmental spe-cialist and take place at a mutually agreed upon timewhen the nurse or other caregiver is interacting with theinfant (e.g., taking vital signs, diapering, or suctioning).l'he observer does not interact with the infant, butstands close by watching and recording at two-minuteintervals on a NII)CAP check sheet. In order to arrive ata sufficient sample of behavior, the infant is observedtor at least 20 minutes before interaction with the care-giver, throughout the caregiver interaction, and for 20minutes after. In addition to recording the details ofbehavior, the observer notes physiologic data (e.g., heartrate, respiration rate, and oxygenation), light and soundlevels, and environmental activity around the bedside.Caregiving interactions are also described.

Behavioral interpretationAll observations are seen in the context of the intant'sefforts al selt-regulation through approach and avoid-ance behaviors (Als, in press). This framework assumesthat the infant has strategies available to move towardand take in stimuli, if the input is appropriate in timi»g,complexity, and intensity in relation to the illfant",-.thresholds of functioning and, conversely, that theInfant has strategies to move away from or avoid inputswhich are too complex or intense or are inappropriatelytimed. Such behaviors are Cc:ought of os stress behav-iors. Of course approach and self-regulatory behaviorscan shift and become stress behaviors; the same behav-iors, when successful in reducing stress, can serve asself-regulatory strategies. For example, for the veryyoung infant, a hand on the face and mouthing Max'represent stability, Yet if overly frequent, these behav-iors may indicate stress, or possibly seizure activity. Asa general rule, extension behaviors are thought to reflectstress, and flexion behaviors are thought to reflect self-regulab ,ry competence. Diffuse behaviors are thoughtto reflo.ct stress, and well-defined behaviors are thoughtto reflect regulatory balance. Self-regulatory balance isreflected lw the presence of regular respirations, pint-color, a stable visceral system, smooth movements,

4 illus./Ink IOW-, tem to Three

ti 4

Unit length view of two incubators at the Chicago hfinc:-1,1Hospital, circa 1901.

modulated tone and softly flexed posture, and steadysleep and awake states.

The developmental professional prepares a descrip-tive narrative based on the observed behavioral dia-logue between the infant and the caregiver. The narra-tive begins with a description of the environment sur-rounding the bedspace. Next, the behavioral picture ofthe infant before active caregiving is described in rela-tionship to physiological measures. Then the caregivinginteraction with detailed focus on the infant is docu-mented, including the infant's efforts, initiations, andresponses as well as the caregivers efforts to aid theinfant. Repeated observations reveal much informationabout the infant's strengths and robustness and thegoodness-of-fit between the infant and the care pro-vided. The infant's behavior is interpreted as to theinfant's apparent current developmental goals. The nar-rative concludes with cart-giving suggestions and envi-ronmental modifications to consider in order to morefinely attune care to the infant's behavioral thresholdsand to support the infant's developmental trajectory.The narrative is shared vith the infant's professionalcaregivers and with the family, and, depending on thenursery's stage in developmental care integration.included in the infant's medical chart (Als et al, 1 9Sh;

Als et al, 19'44).

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NIDCAP guidelines for careIn order to effectively implement developmentally sup-portive care within the NIDCAP framework, I foirrICS,Sheldon, Si. A Is (in preparation) and Vento & Fineberg(in press) have outlined guidelines for care. Following isa description of a developmental care environmentbased on their recommendations.

Consistency of caregiving: Within 24 hours afteradmission, a primary team is identified for each infant.The team includes the family and specific representa-tives from medicine, nursing, respiratory therapvindsocial work as well as a specially trained developmentalprofessional. The team works collaboratively with thefamily to develop an individualized plan of care whichshould be reviewed daily on rounds and discussed inregularly scheduled team meetings with the family.

Structuring the infant's 24-hour day: In order to pro-vide the infant with sufficient rest and to supportgrowth, interventions are organized into individuallyappropriate clusters timed in accordance with theinfant's sleep-wake cycles, states of alertness, medicalneedsind feeding competence. All caregiving. interac-tions are evaluated regarding their necessity and appro-priateness, e.g., does an infant in need of ventilationhave to be suctioned on a fixed schedule or as clinicallyindicated? Taxing procedures such as suctioning areperformed by two-person teams.

Pacing of caregiving: During the delivery of care, care-givers approach the infant and family in a calm manner,explaining to the family the goal and sequence of care.The care provider organizes the enviriment, gathersneeded materials, and prepares herself to be attention-ally and emotionally available to the infant and family.The infant is observed before hands-on interaction. Thecaregiver then introduces herself to the infant with asoft voice and gentle containing touch. During care, theinfant is offered periods of rest and recovery betweencaregiving actions and containment through gentleholding or handswaddling, finger-holding, or suckingon a pacifier or finger. Parents are nurtured in support-ing their infant during caregiying as the infant needs thecomfort and security of this family's care. Since theinfant comes to recognize the familiarity of the parents'hands, bodies, and voices, he is comforted by their pres-ence and often shows increased physiologic stabilitywhen they are present. The care provider stays with theinfant and family by the bedside after care to assure thatthe infant is settling comfortably.

Support during transitions: Increased support is typi-cally needed around transitions, particularly betweencaregiving activities (e.g., ventilator care, positionchanges, feeding, diapering) and around the beginningsand endings of care. Extra support is needed as theinfant awakens or when the infant makes efforts tosleep. Caregiver interactions are guided by the infant'sbehavioral cues with special attention given to the facil-

itation ot restful sleep at the end of the alert state.Appropriate positioning: Infants are supported into

softly flexed, comfortable aligned positions duringsleep, teeding, bathingmd necessary procedures. Posi-tioning can be supported with aids such as blanket rolk,nesting, gentle swaddling, special buntings, and hands-on containment. Side lying or prone positioning, if theinfant has sufficient strength, is typically more desirablethat supine positioning for comfort and for physiologi-cal stability. Supports are used in an effort to enhancethe infant's own competence and gradually decreasedas the infant's autonomous regulation increases.

Individualized fc-eding support: IFeet...ng method andschedule are determined by the infant's individualneeds and competencies. Feeding should be a pleasur-able experience for the infant, one over which the infanttakes increased initiation and control. Caregivers holdthe infant in a secure and comfortable position. Oftensemi-upright with soft flexion cradled in the caregiver'sarms is quite supportive. Attention to the infant's auto-nomic, motor, and state systems guide the pace of thefeed ing.

Opportunities for skin-to-skin holding: Opportunitiesfor mothers and fathers to hold their infants, includingventilated infants, skin-to-skin (Kangaroo Care) areavailable at all times. Infants have been found to experi-ence increased respiratory stability and more restfulsleep when held by the parents, while parents report thatthey experience a sense of calm and fulfillment. Staffreceive support and education so that they are comfort-able facilitating skin-to-skin holding and providing care-giving while the infant is being held by the parents.

Collaborative care: All special examination andassessment procedures, including physical exams, ultra-sounds, chest films, and neurology examinations areperformed collaboratively by the respective specialistassisted by the infant's nurse and, if possible, facilitatedby the parent to support the infant's comfort and well-being. This allows infants to be cared for during proce-dures by persons who know them and how theyrespond to stress and to comforting.

Quiet, soothing environment: Nurseries should bequiet, soothing places where thoughtful consideration isgiven to the lighting, sound, and physical arrangement.The lighting plan should include individualized bed-side lighting with dimmer capacity and indirect, read-ily adjustable general lighting. A variety of sound con-taining procedures are used, including separate spacesaway from the infant's beds for admissions and rounds,elimination of radios and overhead pagers, and sounddampening strategies for commonly used equipment(e.g., vibrating rather than sound beepers, sound shield-ing blankets for incubator covers, and a flashing lightwhich is triggered when the sound rises above agreedupon levels).

Family comfort: A useful way to sensitize staff to themessages conveyed to parents by the environment is for

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staff to walk the path from the hospital's parking lot tothe infant's bedside (Als, in press). What does the layoutsav o parents about the importance of their role in theirch,.d's care? Parents are exquisitely attuned to the emo-tional anThiance of the setting. What is conveyed by thebehavior of those with whom the family comes into con-tact with, from the parking lot attendant to the attend-ing physician? To increase family comfort in the unit itis recommended that home-like, individualized spacestor families be provided. Recliner chairs big enough fortwo persons are available at each bedside. Parentsshould be encouraged to view the space around theirinfant's bedside as theirs, to be arranged to their liking;to bring clothing, blankets, toys, pictures and otheritems from home to personalize their infant's bedspace.Twins are cared for by the same team together in thesame area, if not in the same incubator or crib. Readilyavailable, trained, child care support is provided for sib-lings.

Developmental support: Specially trained develop-mental professionals should be on staff full-time. Theseprofessionals should be knowledgeable about infantand family development, support the primary careteams, and serve as resources .-.nd catalysts in the imple-mentation of developmental care. Developmental pro-fessionals should be linked with their counterparts inother units and have opportunities to participate in rel-evant local, regional, and national conferences. Nurs-ery-wide implementation should be supported by amulti-disciplinary developmental team. The teamshould have access to unit-specific training and consul-tation opportunities, including an opportunity todevelop a process for monitoring and reflecting uponthe process ot change (Gilkerson & Als, 1995). A ParentCouncil with multicultural representation should alsobe formed. Families and staff should ha, ready accessto psychosocial support. Formal arrangements to usethe expertise of a licensed clinical social worker, psychi-atric nurse, or psychology/psychiatry consultant shouldbe in place.

Fundamental principles of infantcaregivingWhile developmental practices may at first glance seemforeign within the context of newborn intensive care,they are based on fundamental principles of infant care-giving that transcend settings. Winnicott is quoted withsaying: "A baby is always contending with being doneto." Regardless of the setting, three features shouldcharacterize infant caregiving: individualization,responsiveness, and respectfulness (Gerber, 1979). Gon-zalez-Mena & Eyer (1980) offer 10 principles of relatingto an infant with respect. Among these are: involveinfants in things that concern them, invest in time whenyou are totally available, learn the infants' unique waysof communicating and give them the opportunity toexperience yours, respect infants as individuals, build

security by teaching trust, and be concerned about thequality of development in each stage (p. 9-10).

Developmental care em,ures that infants are thoughtabout individually in the NICU environmentthd con-ceived of as competent to collaborate in their Own care.The developmental approach asks NICU caregivers towatch closely tor the infant's own efforts, to notice inwhat context the infant is most xvell-regulated and com-petentind to offer just enough assistance to supportthe infant's own developing capacities and next steps.The guidelines tor feeding stress the importance of theinfant's increasing initiative and competence. Itz thisway, caregivers promote the development of effectance,effectance motiyati(m, and the experiences of mast.'ryoutside ot the womb.

In the dav care literature, considerable attention ispaid to the activities of physical caregiving: diapering,feeding, sleeping, comforting. Caregiving is defined asnot just the activity, but the entire sequence andambiance ot care: what happens before, during-mdafter. This approach is illustrated in the followingdescription ot diapering in an infant care program:

First prepare the environment and yet tlw materialsready. Next go to the child, but first, let her be. 1Vatch andwait until she notices you. Let her know what will happenand tell her about each step along the ion/. After care, staywith her until qhe has settled with an activity and is re-engay,ed (Abel, reNonal communicatiim, Nor).

The developmental approach brings this same attca-tion to the process of caregiving to the NICU. Becauseinfants are forming their perceptions of the world, theyabsorb not only what is done in physkal caregiying, butthe manner in which it is done. Gonzalez-Mena andEyer (1980) point out that certain basic needs of theinfant are met through physical care; other higher levelneeds are met in the IV,11' the physical care is delivered.The pacing of care, so central to the developmentalapproach, allows for a thoughtful, unhurried, finelyattuned dialogue between infant and caregiver. Thiskind of early experience communicates to the infantimportant messages about the human environment.

Lally and Phelps (1994) stress that settings for infantsshould offer security, protection, and intimacy. Primarycaregiving arrangements and continuity of providersare central to creating a sense of security and trust forthe infant and for the family. When caregivers are con-tinually changing, idants have to work harder to gettheir message across (Lally & Phelps, 1994): but alsohave no opportunity to develop expectancies and there-with trust. This has been shown to lead to depression,failure to thrive, and hospitalism syndromes. For infantswho are premature and medically fragile, this is of evengreater seriousness since the resources to rally in theface of stress are more limited.

The presence of parents is the most fundamentalbasic security that an infant can have; it is imperative

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that staff be supported and educated about the primacyof parenting and about their role in supporting therealignment of parental and fetal infant co-regulatoryenergies. The professional caregiver's own direct inter-actiou with an infant in the NICU needs to model theattunement to the per,Amhood of that intant at all times.This assures the parent of the appropriateness of theaffective value with which they imbue each of thechild's movements and actions, no matter how small.This co-regulatory nurturance of attunement throughmodeling and through respectful preparation of appro-pi iate settingss for the parent/infant co-regulation is theprofessional caregiver's most far reaching responsibilityin the service of the infant's well-being. This is of par-ticular importance because of the very intcnsivist set-ting which the infant requires. The developmentalmodel not only seeks to protect tho infant from inap-propriate and overstiimilation and from unn,_cessaryproLedures but seeks to assure that each infant is caredfor by persons who know the infant intimately, that is,who know the infant's ways of initiating and of shoN.ing competence and distress. These are caregivers whodefine their own competence by their co-regulatoryresponsibility and effectiveness, that is, who have anappropriately educated emotional investment in theinfant and parents' increasingly autonomous co-regula-tory competence.

Support for the effectiveness ofdevelopmental careIncreasingly, research is documenting the role of devel-opmental care as an important framework for newbornintensive care delivery resulting, for the most high-riskgroup of very low birthweight ventilated infants, inimproved medical outcomes such as decreased intra-ventricular hemorrhage, reduced severity of chroniclung disease, improved growth, earlier discharge, andsignificantly reduced hospital costs Als et al, 1986;Becker et al. 1991; 1993; Als et al, 1994; Fleisher et al, inpress). Increased protection of and support to the devel-oping nervous system bY adapting the environment tothe individual capacities of the infants appears to resultin improved patterns of brain functioning (Als et al,1994). This has also been demonstrated for hea 'thypreterm infants receiving developmental care. Theirbrain functioning patterns were found to be signifi-cantly more similar to full-term infants, and very differ-ent from those of preterm infants not receiving develop-mental care (Buehler et al, in press). It appears thatdevelopmental care may differentially protect thefrontal lobe, a finding of interest, given that the neu-ronal organization of this region occurs relatively late inthe developmental sequence (I luttenlocher, 1984).These findings are particularly encouraging since thefrontal lobe is implicated in organizing executive func-tions of the brainattention, state regulation, planning,prioritizing, and monitoring. These are the :unctions

which have previously been found to he particularlyvulnerable in the preterm infant (Als et al, 1989; 11ack ofal, 1994).

Challenges of implementing developmentalcare nursery-wideOvei the past five ;ears, we have collaborated with col-leagues from five hospitals on the National Collabora-tive Research Institute for Early Childhood Intervention(NCRI-ECI), a multi-site study funded by the USDepartment of Fducation, to examine the effectivenessof the developmental approach (Als et al in prepara-tion). In addition to an experimental investigation, thisstudy provided the opportunity to examine questions ofimplementationto explore the reasons that clinicalinsight of the individual practitioner about the impor-tance of developmental care is not easily translated Mtolarger scale, nursery-wide implementation. A seniorneonatologist anticipated the dilemma 25 years ago ashe recalled his first awareness of developmental care:

Let me tell .tiou about the first deivlopmenial nurse.seemed to do better at gaz-age fecding than the others. Iwatched how she fed the babies. She put the tube in and thenshe'd stroke around the baby's belly, just like she was calm-ing him. We noticed tlie babies fed a lot better, didn't spit upas much, and gained weight better. So zi,e ,ioticed that, amiour thought aws, why doesn't everybody do it?(Gilkerson & Ak, 19)5, p. 2(t)

This nurse's caregiving demonstrates her intuitiveassociation between infant behavior and her caregivingpractices, a link which resulted in improved outcome.Parents often ask: Why does developmental care need tobe proven? Isn't it obvious that this care is what theinfant and the family need? Nurses and physicians havecommented that it is just common sense to make thebaby and family as comfortable as possible. Whatmakes developmental care so challenging? Why is it notpracticed by everyone? And how can nursery staff besupported to move toward this new framework torcare?

As part of the NCRI-ECI study, interviews were con-ducted with over 160 N1CU professionals and familymembers to explore issues in iniplementation. Itappears that many of the challenges are tied to thenature of the developmental approach itselfthe factthat it is theory-guided, relationship-based, and sys-tems-oriented (Gilkerson & Als, 1995).

The key concept of the developmental care frame-work is the concept of co-regulation, based in an evolu-tionary, theoretical framework of a neurobiological basisfor the social nature of humans. The concept of co-regu-lation is central to the understanding and support of therelationship between the infant and family in the NICU.Implementing a theory-guided rather than a procedu-rally-driven approach is challenging in any setting; itis especially challenging in acute care environments

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:4# to.

which are, by tradition and necessity, oriented to stan-dards, protocols, and caregiving routines (Gilkerson,1990). A co-regulatory framework to care requires thatthe caregivers be mindful of others and, therefore, bereflective about their own actions and ways of being.Reflection as a framework for practice is not typicallyarticulated in action-oriented, intensiyist care work. Yet,with the move toward developmental care, reflectivepractice, by necessity, becomes a focus.

The role of reflection in the implementation of devel-opmental care has been spelled out recently in moredetail (Gilkerson & Als, 1995). The ZERO TO THREEWork Group on Supervision and Mentorship definesreflection as "the continuing conceptualization of whatone is observing and doing" (Fenichel, 1992, p. 10).

Reflection provides a framework for "knowing-in-action" (Schön, 1983; 1987) and shifts focus to includeself-knowledge as a necessary professional competency(Bowman, 1989). Since the core of developmental care isthe observation of infant behavior and the formulationof caregiving plans based on that observation, Schon's(1983) conceptualization of "reflection-in-action" is par-ticularly apt. Developmental care implementationrequires "the processes of 'feeling,"seeing,' and 'notic-ing' what it is you are doing; then learning from whatyou feel, see, and notice; and, finally, intelligently, evenintuitively adjusting your practice" (Tremmel, 1993,p.438). Tremmel (1993) points out that to be open toreflection one has to change the way one's mind works,a challenge for any trained professional caregiver. Anexperienced nurse described how difficult, yet reward-ing, it was to let go of familiar formulas that haveshaped practice: "So much of nursing is doing routinethings in a routine way. I used to suction every 3 hours,regardless. Now I think, 'Who am 1 suctioning formeor the baby?'...1 knew what to do before, now I knowwhy." (Gilkerson & Als, 1995). Developmental care

requires the encouragement ot Be\ ible minds, comfort-able with -doing, learinng, and coming to know" (Trem-mel, 1993, p.438).

Relationships imply connections. Nurses whoembrace a developmental approach acknowledge the-onnections between themselves and the infants andfa lilies for whom they care.

ii,ca to think 'Tin In. pot a itt Hon cathetadown the enitotim hial Odle. Im :oing 10 (11,111ze diaper,

liii .t.:0111s: 10 alp 111111, \011!...: the a001,,111,11.111

:,'0111N 011 hi mit ?text job and liii not Nolu:; fo look aph/Iuntil I Ilan. more tasks to do to hum.- I knew wliat I had todo that day but I recall/ didn't ha,v a NellNe 11'110

0'1,011 NW"

All/ llalla,,e1 i, different aow. I think when I .Q0 Into the

i,olette, it's almost tIsit. I un ("minx in to communi-cate with you !baby! (oh! the baby.- :.;ont,1/4; to communicateback with me. lin Noing to obserzw told assess the Infant andthere an' sonic things I hazy to do but I'm going to watchwhat he's telling me and adjust what I hazy to do gij'en thet nes that he's Nwing Jae . . . 1:11 (01111C(101. much wowin tUlle. AIN 1,1,r; r 241

This new connection with the infant strengthens thecapacity to nurture relatedness between parent andinfant.

Ret'ore I leartu'd about the dePelopmental aniroach,...! hi talk-ing rola! parentsl, I focused on fixed traits like he has blueeves . I didn't talk about . . . his humanness. Nino I thinkI facilitate parents seeing their infant like a Iamilv would,knowing their baby at home. ((.111.vr,on Ak, lN5 p 2.11

Yet work with relationships is demanding. Theresponsibility of connectedness can be threatening,especially to caregivers vhose identity is tied to compe-tence with technology ahd science. A basic tenet withinthe mental health disciplines is that work with relation-ships requires ongoing supervision, a component whichis typically absent in traditional NICU settings, as it is inmany other infant care settings. The 71-: RO TO TI IR I_ EWork Group on Supervision and Mentorship (Fenichel,1992) has defined three essential elements of supervi-sion: regularity, collaboration, and reflection. In thisframework, supervision is a relat4mship for learningwhere time is set aside on a regular basis, with an expe-rienced and trusted professional, to explore the "imper-fect processes" of professional practico (Belenkey et al,1986) and one's own responses to the work. Shanok(1992) describes supervision as a place where "strengthsare emphasized and vulnerabilities are partnered"(p.40). In the NICU the professional is continually calledupon to make decisions and to act. In supervision,Shanok explains, learning is by reflection which thentranslates back into more thoughtlul, mindful action.All NICU professionals should have access to opportu-nities for reflective supervision; at a minimum, mem-bers of the core developmental team should have theopportunity for individual supervision to strengthen

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their seh-awareness and their capacity to engage in andsupport relationships.

The relational nature ot developmental care is alsoevident M the process of implementation. Because ol thenature of intensivist care and interdependence amongthe caregivers, changing patterns of N ICU care is a com-plex endeavor which often requires considerable skill insocial negotiation and collaboration. For example,alloying an infant to complete a lull sleep-wake cyclewithout interruption may affect the timing of the phys-ical e`arnination hY the attendi"g Physician and resi-dents, medical procedures carried out by the fellows,specialty consultations, laboratory work, respiratory orother therapies, or even the services of the housekeep-ing staff. The developmental team must design aprocess which considers multiple perspectives andincludes all involved. This is particularly importantxvhen changes affect what Scheinfeld (Personal commu-nication, 1993) has called the "flow of activities." In astuds, of staff emotions in a psychiatric hospital setting,Scheinfeld found that the way a staff person typicallydoes a routine or procedure has psychological meaningto him. The "flow of activity" gives comfort, a sense ofcontrol, a sense of being able to effect outcome. Whenthis flow is interrupted, there can be a chain of emo-tional responsesanxiety, loss, anger. Because thedevelopmental approach seeks to provide care withrather than to infants, the developmental model mustbe implemented in a parallel fashion, that is, with ratherthan to staff. For implementation to succeed, an experi-enced nurse manager explained, the unit must worksimultaneously towards two goals: We must integratedevelopmental care into practice ant' build collabora-tive relationships at the same time." Therefore, one ofthe most important capacities for the developmentalistin the intensive care setting is the ability to stay engagedwith others despite apparent differences. Bettelheim(I3ettelheim & Rosenfeld, 1993) states that when wedon't know how to perceive another's behavior we"start with the assumption that the reasons or motivesthat lie behind his actions...seem good to him" (p. 107)."We must always proceed on the assumption that theother person's thoughts and actions are worthy of beingconsidered in the most positive wav possible" (p.119).Staying connected in this way requires a high degree ofintrapersonal and interpersonal knowledge and skill,another reason why the provision of ongoing reflectivesupervision is essential.

In the beginning days of implementing the develop-mental approach in one nursery, a staff nurse remarkedthat she often felt torn between the needs of the babyand the needs of the staff. The polarization which thisnurse experienced results in part from the press of clin-ical work and the lack of Mlle to consider the needs andperspectives of all involved. In the NCRI-EC1 study, wefound that it was essendal for the developmental teamand the nursery leadership to set aside regular opportu-nities to reflect upon the process of implementation to

slow dow:n the process and to consider all aspects of theevolution toward developmentally supportive care. Amodel for this process is described elsewhere (Gilkerson

Ak, 1(495).

The relational nature of developmental care, by del i-nition, makes it systems-oriented. As noted above, achange in any one part of the system has effects tor theentirety of the system. Changes in the larger system, inturn, affect the dynamics within the smaller unit. Aspart of the periodic review of the implementationprocess, it is important to step back and take the pulseof the larger nursery system ((;ilkerson, 1993) in orderto understand the unit culture, particularly patterns ofcommunication and conflict management (Shorten et al,1991); critical events affecting the unit; and, most impor-tantly, the unit's identity and sense of distinctive com-petence (Cooperrider & Srivastva, 1987). Fostering ofchange and growth, therefore, must always keep inmind the two interrelated and mutually catalyzing com-ponents of the system's growth and of the growth ofindividuals within the system.

SummaryThe biggest change in NICU care, the move from proto-col and procedure-driven to relationship-based devel-opmental care is gaining momentum. A methodologyfor teaching about the observation of the infant's behav-ior is now available. Research documenting the efficacyof the approach is increasing; insights into individualand systems supports needed to ensure success andeffectiveness of the approach are becoming increasinglyunderstood and articulated. As the N1CU begins todefine itself not only as a physical care setting, but alsoone that supports emotional well-being, the infants andfamilies in its care will gain. Moreover the sense of effec-tiveness and satisfaction of the professionals in the set-ting will also increase.

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Als, II. (1982). Towards a synactive theory of develoiment: Pbsmisefor the assessment of infant individuality Infant Mental I lealth lour-nal, 3(4), 229-243.

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Newborn Intensive Care Units Pioneer Family-centered Change in Hospitals across the CountryBeverley H. JohnsonInstitute for Family-centered Care, Bethesda, Maramd

lire baby girl deliPered by emergency Cesarean section waslike so many infants who begin their lipes in newborn inten-siiv care: born only 26 weeks after conception, Jessica neededimmediate, signifiomt lite support. She was phiced on (1 Pell-tailtor mid rushed frinn the delivery ntom and fr(un hermother within minutes of birth. But unlike many prematuri.infnuts who struggle with serious lung infections and othermajor complications in the weeks after birth, Jessica math'rapid and steady progress entirely free of the typical complications of.pretenn deliz,ery. Within two weeks, she was offthe 'entilator, and a aTek later she IWIO il(Tdeti supple-mental oxygen. She started nipple feedings earlier thanexpected, gained weight steadily, and at just .36 weeks afterconception, Jessica went haute with her family as a healthy,gwwing, infant with a strong prognosis for a healthy future.

What explains this baby's quick, complication-freerecovery from intensive care in the first days and weeksafter birth, while so many critically ill newborns face amuch more difficult struggle to survive? Dr. gretchenl.aw hon, director of the perinatal-pediatric develop-mental progra i at the Children's Medical Center otNorthwest Ohi , attributes much of the baby's successto important family-centered changes taking place inconjunction with the individualized developmentalapproach to newborn intensive care. These changesplace families at the center of care, acknowledging thatparents and other family members are the most impor-tant people in a baby's life and are absolutely critical tohis or her well-being, especially when infants need life-saving technology and the help of skilled professionalstaff to surviv:

Family-centered care promotes practices thai nurturethe strong bonds that begin between infants and theirfamilies before birth and supports those relationshipsthroughout the intensive care experience.

Jessica's parents were included in her care from themoment of delivery. Although her mother was not ableto hold the baby immediately after birth, she was able tosee her briefly. Jessica's father followed her into inten-sive care and moved freely between the infant and hermother during the first few hours, supporting both ofthem during this critical period. The next day her eight-year-old brother spent time with his new sister. Staffmembers explained the baby's condition to him,answered his questions, and told him about their plansto support Jessica, him, and their parents. At first, med-ical staff met daily with the parents, reviewing plans for

care, anticipating problems, lktening to their concerns,and supporting their decisions on issues such as breast-feeding. As the baby's health progressed, these meet-ings occurred weekly. 1hroughout Jessica's intensivecare experience, her parents spent a considerableamount of time with her and became comfortable hold-ing, feeding, and diapering her while she was still in thehospital.

"It is impossible to overestimate Olt, power of a par-ent's presence," says Dr. Lawhon. "I've seen this againand again. When two critically ill infants have the sameclinical diagnosis, the one lvilo has family present,pulling for him or her and actively participating in care,will almost always do better."

While the national political debate on health carereform has stalled over issues of financing and organi-zational structuremd managed care is driving struc-tural and economic changes in rnany communities andstates, health care professionals and families in hospitalsacross the country are working closely together to pro-mote significant change in the ways that infants, chil-dren, adolescents, and their families e perience andparticipate in their own health care.

Increasingly, newborn intensive care units (NICLis)actively promote this family-centered change. Physi-cians, nurses, and families collaborate intensively toimprove the quality of care, contain spiraling costs,meet important emotional and developmental needs ofinfants and familkN, and improve medical and develop-mental outcomes.

What is family-centered care?Family-centered care offers a new way.of thinking aboutthe roles of families and health core providers. Family-centered providers recognize that over time, the familyhas the greatest influence over an infant's health andwell-being. They assume that all families, even thosewho are struggling with very difficult life circum-stances, bring important strengths to their infant'shealth care experiences.

Family-centered care providers acknowledge thatemotional, social, and developmental support compriseintegral components of health care. This approachempowers families and fosters independence; supportsfamily caregiving and decision making; respects familychoices, builds on family strengths; and involves fami-lies in all aspects of the planning, delivery, and evalua-

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tion ot health care services. Information sharing and col-laboration between families and staff are cornerstonesof family-centered care (Institute tor Family-Centered(are, 1995).

Why are NICUs becoming more family-centered?Family-centered change has developed in response to agrowing sense that the care ot preterm and critically illinfants, while technically proficient, often fails io meetimportant emotional, developmental, and practicalneeds of babies and their families. Also, traditionalapproaches to neonatal intensive care often fosterdependency in families, interfering with the Ulf:ant-fam-ily relationship and with the family's ability to providecare at home and in the community. NICUs employsome of the most sophisticated technological advancesin modern medicine. While the skilled professional useof this technology has enabled health care professionalsto preserve and extend the lives of premature and criti-cally ill infants, it has sometimes been delivered withoutawareness of the impact of treatment on developmentalneeds and long term relationships. Parents haveexpressed the dilemma this way:

in vile of s!aff'-; efforts, I couldn't feel conOrtable in theNICLI. It is 0 plaiz. to inspire pity and terror in a parent.lospitals are intimidating. WU., even more so. I felt I had

no control in this situction, I was /list a bystander. Peoph.were saying ETry iMpOI'ant things to me in 0 language Icould Ica rcly comprehend. ,41thouNli I am norniaily a verycompetent person, I fel t totally lost. tRapacid, lq512, p. 375)

In contrast, when NICU staff create a family-centeredatmosphere for care, families knov they provide essen-tial c -.re for their infants. 1.'or example, one youngmother said, "Nurses taught me to do all my baby'scare. They were just there to do his care Ivhen I wasn'tthere."

Cost also drives family-centered change in theNICUs. Traditional approaches to hospital care areexpensive, and NICUs use a high proportion of a hospi-tal's resources. hifants under the age of one month, pri-marily NICU patients, account for nearly one-quarter ofthe patient days in a children's hospital and 27 percentof hospital charges. When a family participates effec-tively in an infant's NICU care, infants spend less timein the hospital, transition to home more easily, andexperience fewer hospital readmissions. All of these fac-tors affe:1 the cost of care.

Other forces driving family-centered change inNICUs include:

ilevelopmental care. This in-depth, system-atic approach to neonatal intensive care incorporates thestrong belief that "family-centered care and develop-mental care are inextricably linked" (Als, personal com-munication, 1992). The data emerging from the devel-opmental care research documents the efficacy of this

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approach for improving medical and long term devel-opmental outcomes and minimi/ing the cost of care.Lath/ intervention. The availability ot effective earlyintervention programs for infants and toddlers withspecial needs and their families has grown in recentYears. As community-based early interventionproviders and NICUs work more closely together, hos-pital staff become more aware of infants' long termdevelopmental needs, the value of family-to-family andother family support, and the importance of facilitatingthe transition from the NICU to the conlnlunity. In somestates, NICUs receive funds and personnel to further theimplementation of family-centered, developmental careand to improve coordination between NICUs and com-munity-based early intervention programs.Family advocacy. Increasingly, families are voicing theirconcerns and priorities about traditional approaches toN1CU care. Awarcmess that families are the infant's pri-mary caregivers is growing among professionals. Fami-lies' contributions to changes in maternity care and ser-vices for children with special needs demonstrate thatfamilies bring valuable expertise to planning, imple-menting, :Ind evaluating NICU policies and practices.Quality 'mprovement. As hospitals strive to assure thequality of services and satisfy their primary consumers,they are inznsifying their efforts io respond to the iden-tified needs and priorities of infants and their families.The collaboration central to family-centered care pro-

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ides important continuous feedback on the quality andappropriateness of services from those who receivet horn.

What changes does family-centered carebring to NICUs?Family-centered thinking profoundly changes how pro-fessionals and families work together and care forinfants in critical care settings. It also spurs importanthanges in the design and physical environment of

N ICUs to provide more supportive care for infants andtheir families.

deuclopmental care and familylpro-fessional collaboratiou

hrough the newborn treatment approach known asindividualized developmental care, health professionalsincreasingly recognize that even the most vulnerablepreterm infants have innate strengths and individualdevelopmental needs. Individualized developmentalcare builds on each infant's emerging competency toachieve stability and shape his or her own development.This approach to care results in lower morbidity,reduced complications, shorter hospital stays, lowercosts, and better long term outcomes (Als, 11., Lawhon,G., Duffy, F.1 I., McAnultv, G.I3., Gibes-Grossman, R., &11:ickraan, I.G.,

Those \vho practice individualized developmentalcare emphasize the importance of working closely withfamily members to help them appreciate their infants'individuality, humanity, and very real strengths in anenvironment that is often frightening and dehumaniz-ing.

With a family-centered approach, staff no longer seefamilies as visitors to the NICU, but as their infants' pri-mary caregivers and essential partners with staff. Thosewho practice individualip2d developmental and family-centered care understand that they are not substituteparents, but facilitators whose job is to help parents andother family members assume their natural role as pri-mary caregivers. They recognize that infants and par-ents come to NICUs with strong relationships devel-oped during pregnancy, and that N1CU staff shouldnurture and protect that vital bond, minimizing theharm that the necessary technological interventions caninflict on it.

In addition to working closely with individual fami-lies, family-centered NICUs systematically involve fam-ily members in policy development and program plan-ning by inviting them to participate in advisory coun-cils, to facilitate peer support, to serve as educators forstaff and professionals-in-training, to do, -lop linkageswith community agencies, and to participate in othercollaborative activities. By involving families at thislevel, NICU professionals gain valuable insight abouthow families experience care, what they need and want,

J 4

and how the N can continuously improve servicesto accommodate and support them.

One of the most important and controversial aspectsof family-centered change involves creating 24-hour-a-day open visiting guidelines. With such guidelines, fam-ily members, rather than hospital staff, define who their"family" is and decide the length and time of ' isits.Currently, many NICU visiting policies claim that visit-ing hours are open, then list exceptions when the unit isclosed, such as during changes of shift, rounds, admis-sions, emergencies or some procedures.

When NICUs ail] other hospital units gain experi-ence with truly open policies, previously held belief sabout issues such as confidentiality begin to change.Nurses and physicians who practice family-centeredcare discover that they can conduct rounds and otherreporting procedures in discreet ways that respect fam-ilies and preserve their confidentiality. When complexissues require discussion, sit-down rounds in other loca-tions usually meet the need more appropriately thanextended bedside discussions and help reduce noiselevels at the infant's bedside.

Some NICUs restrict visiting hours primarily torelieve staff of the need to accommodate family mem-bers during part of the day. Unfortunately these N ICUsdo not recognize the vital role of families to infants'health. NICUs struggling with visiting issues need to re-examine staff priorities---recognizing their primaryresponsibility to serve infants and families--andexplore other ways to meet staff members' legitimateneed to deal with the stress of caring for critically illinfants.

Family-to-family support

Families who share the stressful experiences of criticalcare can support each Wher in tremendously valuableways. To encourage familv-to-family support, family-centered NICUs promote formal and informal contactamong families. Their staffs look for ways to facilitatehelpful one-on-one relationships between families withsimilar backgrounds or parallel n'edical situations. Thiscan include recruiting and training families of NICU"graduates" to share their experiences with families inthe hospital, offering both practical and emotional sup-port. Family-centered NICUs also help families connectto family-to-family support networks in the community.

What barriers do individuals and institu-tions face as they implement family-cen-tered care?

Many individuals and most organizations struggle withchange toward family-centered care. Such changerequires health care professionals and family membersto think and act in ways that counter long-held beliefsabout their roles and responsibilities. At first, family-centered practices may also seem to require more staff

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time and energy am+ dkturb carefully devised policiesand practices. BarrieN to change include:

filtt attitude.. Traditional NlCU training and procedureshave encouraged professional stall to think of them-selves as infants' primary caregivers in intensive care.Learning to share responsibility for the babies' healthand facilitate family caregiying can be very difficult,particularly under the stressful conditions ot criticalcare. Until they have direct and positive \ perience!-sharing responsibility with families, professionals mayfeel that working with family members will only add toan already burdensome work load.

In fact, family-centered practices ultimately lightenstaff loads. As cl nurse who learned to practice falcentered care ot Phoenix Children's I lospital has said,-IWorking with families; is more work up front, but itgives added energy and you see added value. In theend, you do less care because families are able to do it."

Other stresses may also make staff reluctant to makefamilv-centered changes. Because they must performdifficult and sometimes poInful procedures on fragilenewborns, some NICU staff find that focusing on thetechnological aspects of their work ;s less stressful thanrelating to families and thinking about the emotionalneeds and feelings of the tins infants they work to save.Maternity tare. In some hospitals, prenatal and mater-nity policies for pregnant women at risk for prematuredelivery foster dependency and low self-esteem amongthese women. For example, some hospitals designatenap times or set visiting policies that restrict times yhenfamilies can be together. Health care providers oftendevelop care plans without incorporating the prefer-ences and concerns of a woman and her family. Sched-ules designed for staff convenience without thought towomen's needs and priorities, failure to explain med-ications and procedures, and the absence of informationabout what to anticipate with high risk pregnancies fur-ther rob expectant mothers of the belief that they canmake decisions related to their own bodies and carecompetently for their newborns.family reluctance to speak up and participate. The frighten-ing and intimidating nature of intensive care makesmany families reluctant to speak up and assert them-selves. Because most families have little experienceworking as partners wi':h health care professionals, theyneed support in order to do so effectively in such astressful environment.Unit design. The physical design and space allocation ofmany NICUs has been determined by the need forequipment and staff without sufficient regard to includ-ing, supporting, and encouraging families during theirinfant's care. The entrances to NICUs often create nega-tive first impressions that intimidate families. Noisy andbrightly lighted units frequently lack bedside space forfamilies, places to spend quiet time with their infants,places for families to learn and practice caregiving,

14 ILaw/l uly 1995 Zero to Three

rooms to con er with others on the health care team, andlounges for rest and rela \ation with family or friends.While important lamily-centered changes can occur inan unsupportive physical environment, inadequate orpoorly designed physical spaces severely limit, and caneven prevent, full implementation of family-centeredcare.

vi,ftms, polfoe:,md the mitth of 'iilnvt'rw,' con-fident Restricted vkiting hours and institutionaldefinitions ot family that limit who may visit fail to rel.-ogni/c the diversity ot families, support their needs,and honor the central role they play in infants' lives. Themistaken belief that open visiting and full informationsharing policies will endanger privacy and confidential-ity prevents some professionals from fully implement-ing family-centered policies.Lack of gaff knozoledge about developmental need:. Highlytrained staff who deliver sophisticated technologicaland medical care may lack knowledge about the uniquedevelopmental and emotional needs of fragile preterminfants. Their limited knowledge of infant developmentmay prevent them from effectively helping familieslearn their infants' developmontal cues. Further, staffmay not fully appreciate the importance of a stronginfant-family relationship to the child's long term healthand well-being.

Strategies for change

Making the change to family-centered care requires along and evolutionary process in most hospitals. Smallchanges undertaken experimentolly can have a power-ful positive impact on a unit and, ultimately, on anentire institution. When NICUs become centers ofchange that focus the energies of motivated staff andfamilies, they also become catalysts for broader changetoward family-centered policies and practices through-out a hospital. Several strategies can help begin theprocess of change or energize changes already begun.These include:ner,elop a statement of shan'd znsion. Vision, mission, andphilosophy of care statements set the tone and directionfor a hospital and its maternity and newborn intensivecare services. Effective vision and mission statementsconvey an explicit commitment to family-centered care;emphasize the beliefs, values, and priorities of womenand their families as key considerations in shapingmaternity and newborn services; and convey respect torfamilies and their primacy in their infants' lives.

For example, the vision and mission statementsadopted by the staff in the developmental pod of theNICU at Phoenix Children's Hospital in Phoenix, Ari-zona, include the following language: "We will achievesuccess through our dedication to patient and family asa priority, while managing care with a team approach. . . Our main focus is on optimal developmental out-

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come for our patients and maximum family involve-ment and education." These statements help guide deci-sions, policies, and practices at the N1CU.

Conduct a NICassessment. A detailed examination ofthe NICU's philosophy, environment, policies, andpractices, performed by an interd isci plinary teamincluding families who have experienced care in theNICU, can help identify and prioritize areas forimprovement and measuring progress. A useful assess-ment includes such questions as:

Does the NICU have a written philosophy ot carestatement that respects the pivotal role of families inpromoting the health and well-being of their infants?

Does the N1CU's environment convey that it is acaring place for infants and families?

Does the NICU environment provide adequate pri-vacy for familiesat the baby's bedside, for breast feed-ing, and for consultations with health professionals?

Do NICU position descriptions and performanceappraisals clearly articulate the necessity of working inrespectful and collaborative ways with families?

Are families involved in caring for their infantsfrom the very beginning and throughout the hospitalstay?

Are documentation procedures and forms devel-oped in consultation with families?

Do staff interact respectfully with all families?Do families who have experienced the NICU par-

ticipate in developing and evaluating its policies, pro-grams, practices, and unit design?

The self-assessment inventory included in theresource list accompanying this article serves as one toolfor conducting such an analysis.Cr(bothtx a variety of formal and informal u,aus to collaboratewith families. When consulted and included, familymembers with experience in NICUs make valuable con-tributions to program and policy development. To buildcollaborati e relationships with families at this level,NICUs can establish family advisory councils, hire fam-ily members as liaisons or consultants, and include fam-ilies on planning teams for facility design and construc-tion.

For example, Hermann Hospital in Houston, Texas,has created a parent advisory group and a family-cen-tered care committee for the NICU. These groups helpaddress issues of concern to families. To alleviate fami-lies' confusion on first entering the NICU, they havedeveloped three videotapes to explain how staff mem-bers function in the NICU and what the equipment isfor. They have also created a "communication book"specifically for families, to supplement the medicalchart as a way for family members to communicate withnurses and physicians. The groups are also seekingways to better involve teen-age parents in programplanning and evaluation for the NICU.

Cedars Sinai Hospital in Los Angeles works closelywith families in the NICU through Good Beginnings, a

parent-to-parent support group that has operated in thehospital since Ig7q. Director Dorothy Williams, onceparent in the NICU, now coordinates family-to-familycontacts and trains parent volunteers to provide one-on-one support to family member, during their infant',hospital stay. The prop am includes weekly meeting,for parents and offers financial support tor transporta-tion and babvsitting to those in need so that they canspend more time with their babies. Because the commu-nity is culturally diverse, Good Beginnings is workingto diversify its team of volunteer and peer supporters sothat they can bet k2r address the individual needs of fam-ilies in the NIC U. Good Beginnings members also serveon policy groups such as the hospital's Newborn JointPractice Committee and the life Support AdvisoryCommittee.Conduct a rt'sOln h Ilemonstmtion project. One strategy forpromoting family-centered change when there is someresistance to change is to create a pilot study with asmall group of professionals and family memberswithin a NICU. I-laving a limited research project withinthe unit designed to demonstrate the value of family-centered practices can facilitate innovation in a non-threatening way. Skeptical staff members become moreopen to change as they observe over time the positiveimplementation of new practices.

In April 19921 team of nurses at l'hoenix Children'sHospital in Phoenix, Arizona, undertook a two-yearstudy to test the effectiveness of individualized devel-opmental, family-centered care, compared with stan-dard NICU practice. The team practiced developmentalcare with infants and their families randomly assignedto a five-bed pod within the hospital's 45-bed NICL.Preliminary results of the study indicate that infantswho received individualized developmental care withhigh family involvement spent less time on ventilators,gained weight more rapidly, and had shorter hospitalstays.

Parents in the experimental pod also rated the NICUexperience more highly than those receiving standard care."This approach is a great satisfier of families and staff,"says Carol Vecchi, family care coordinator for the nurseriesat the hospital. "We know it's better for families."

The study was so successful that the unit has createdthree new collaborative care teams to serve an addi-tional three pods and 17 more beds. A multidisciplinarygroup is also exploring wa:s to modify lighting andother design elements in the unit.

Staff who participated in the study report that theexperience gave them valuable opportunities to re-examine their roles and learn new ways to integratefamilies into their infants' care. One staff member saidof the experience: "I thought I always involved the par-ents, but I only involved them on my terms, not theirs."

Staff reported that working as a team and collaborat-ing with families took extra time at first, but ultimatelylightened their load as parents and other family mem

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bers began to tak. primary responsibility tor theirinfants.

last/hoe tranung. -rho Nevborn IndiyidualiiedDevek)pmenta I Care and Assessment Program (NIP-( AP) educates and trains health care prof essionals tostructure pmgrams of care based on individual infants'strengths and developmental needs, organiied in waysthat support individual infants and their families. Thosewho practice individuali/ed developmental care workto support and nurture the parent /infant relationshipand build relationships with other professionals whocan provide support for ihe infant and family atter dis-charge.

The Children's Medical Center of Northwest OhioIn Foledo has recently created a position devoted toimplementing individuali/ed developmental and fam-ilv-centered care for the NICU, pediatricsind perinatalservices. This position is held by developmental special-ist Dr. gretchen Eawhon. She conducts NIDCAP train-ing in the NICU and works with staff to help integratefamilies into their infants' care as early as possible.Incorporate familv-cenfered philosophy into physical designand integnIte finnilies into the design planning process. Thesquare footage necessary to accommodate state-of-the-art technology, treatment methods, and multiple, spe-ciali/ed staff forces many hospitals to expand andredesign the spaces allocated for newborn intensivecare. Whether planning a limited renovation or signifi-cant new construction, providing adequate space tomeet family needs should be a top priority.

Even relatively limited renovation and redecorationcan make a significant difference to families. For exam-ple, the Children's Medical Center of Northwest Ohioplans to renovate its NICU to create a more welcomingand supportive environment for infants and families.All of the rooms will then have dim lights and muffledsound. The unit's two entrances Nvill create welcomingfirst impressions for families. Planners are also explor-ing ways to create better space for families within theN1CU.

Planning for renovation or new construction createsimportant opportunities for hospital staff, design pro-fessionals, and families to work together, rethinking theways NICUs serve and support infants and their fami-lies and planning more appropriate NICU environ-ments. Integrating family members into the planningprocess can help N ICUs carry out the principles theyhave articulated in vision and mission statements. Forexample, one NICE' has developed a vision for its spe-cial care nursery that includes the following points:

We believe that the most essential commient in thelong term outcome of an infant is the pawnt-chihl relatim-slnp.

We behelfe that the parotts do not "visit" their babiesin the Special Care Nursery; rather, they pnu,ide can' andparent big.

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We will create an environment that supports and pro-tects the baby's individual ,thilities told tlw enterg

parentim behavior.LAIL, Bates Medical Center, Berkeley. Calitorii.1,1)

These ideas have profound implications for the designof physical space. When such familv-centered values aretaken seriously, they shape fundamental design deci-sions, suggesting ways that the facility itself can supportfamilies. A design planning team that includes familymembers is more likely to make the important connec-tions between these values and the often difficult designdecisions that also include cost, medical and lechnologi-cal requirements, and other factors.

institute home visiting. Some innovative perinatal pro-grams now include home visits to families to improvepregnancy outcomes and reduce health care costs. SinaiSamaritan Medical Center in Milwaukee, servinglargely an inner city population, instituted home visit-ing as part of a statewide prenatal care coordinationprogram. Inpatient nurses and medical students in theirobstetrical clerkship are encouraged to spend a davwith an experienced home care nurse. The home visitsnot only help pregnant women receive consistent pre-natal care, they also increase students' and profession-

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a Is' respect and appr-ciation for the strengths ot fanu-lies, their deep commitment to their children's welfare,and the difficulties they face in caring for them. A simi-lar strategy could be valuable tor NICU professionalsand families.Prot.iiic family centered transitional ("an . Posffiye experi-ences supporting families in transitional care can influ-ence thinking and practice in NICUs. In the TransitionalCare Center (TCC) of Rainbow Babies and Children'sHospital in Cleveland, Ohio, family-centered practiceshave significar ly improved outcomes and ,,hort.enedhospital stays. Special features of this unit include a sep-arate living and sleeping area for each baby and his orher family and a common area with cooking and eatingfacilities. Now planning a major hospital constructionproject, the team is expanding the TCC and applying theinnovative concepts from the TCC to the new NICU.Repiew maternity programs to ensure that policies andpractices support women's choices, help them developcompetency and self-assurance, and help them antici-pate and prepare for the complications of a prematureor difficult delivery.Connect with early intervention programs. lhuld on thedevelopmental perspective of early intervention profes-sionals in NICUs and integrate them into planning andadvisory groups, support networks, and other mecha-nisms for professional/family collaboration and collab-oration between hospital-based and community-basedproviders.Rethink staffing patterns in NICUs. A NICU is a difficultplace for residents to gain independent experience. Thecomplex nature of care delivered in NICUs requiresmore continuity and expertise than most physicians-in-training can reasonably provide on their own.Advanced nurse practitioners and physician assistantscan provide technically proficient care and offer morecontinuity for families. Developmental specialists andparent liaisons also bring important expertise and per-spectives to a NICU team.

ConclusionAs professionals and families gain experience with fullcollaboration and discover the rewards of workingtogether, family-centered policies and practices pro-foundly change the health care experience for infants.children, adolescents, and their families in hospitals.NICUs working to fully integrate families into theirinfants' care become models of family-centered care forother NICUs and other hospital units.

In a changing health care environment in which hos-pitals face increasing pressure to cut costs, improvequality, and more effectively meet the needs of con-sumers, family-centered care helps institutions, profes-sionals, and families provide high quality, cost-effectivecare for one of our most vulnerable populationspre-mature and critically ill infants.

The fundamental change in thinking that places theneeds of Mdividual infants and their families at the verycenter of health policy and practice is not easy for manyhealth care institutions and professionals, and it takestime. But once health care providers see other familymembers as the child's primary caregivers, especiallyduring hospitalriation, the process ot family-centeredchange can be highly rewarding to professionals andvitally important to the long-term health of newbornsand the people who matter most to them--their

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hiospaa/s Mopinx, Fowaril zrath lamilw-Ceutereil Core.

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lamthi-Centered Cow.Videotape---Desiximis for rannlyVentered Care

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tered Carr tor parent /profe5sional teams, and innoz,ationsiii McdiCili Iii ten lion for physical educators

Zero to Three June/July 1995 17

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The Colorado Consortium of Intensive CareNurseries: Spinning a Web of Support forColorado Infants and FamiliesJoy V. Browne, l'h.D. and Suzanne Smith-Sharp-,tipported by the Interagency C(lordinating Council torthe lmhyiduals ith I )1,0 Llikation Act. oloradoDepartn1L'nt ot Wu: anon

.1 Tider.-; wcb Ironxer than it Whs.Although rt is made ot thin delicate strands, the we'b is not

easily brokeu .

towoz-cr, a ,:oeb :4ets torn every day...and a spider mustrebuild rt when ii Nets full 01 holes.

0r, foggy mornings, Charlotte's web was truly a thing ofbeauty. This morning each thin strand was decorated walldozens 4 )1 tiny beads of water.

lire web glistenol in the light and made a pattern of loPe-liness and myqtery, like II delicate zwd.

There, in the center ot the a 'el' i teal hi wopen in block let-ters, was a message.

"I hai,e vou hearth about the words 111111 appeared in the spi-

der's web?" asked MN. Arable nert,ously."les," replied the doctor.

ilo you understand it?" asked Mrs. Arable."Understand wIrat?""Do you understand how then. could be any writing in a

spider's web?"

"Oh, no," said Dr. l)orian. "I don't understand it. But forthat matter I don't understanth how a spider learnol to spin a

web in the first place. When the wtn-ds appeared, eperyonesaid they uvre a miracle. But nobody pointed out that the u,ebitself is a nuracle."

"What's rmraculous ahmt a spider's web?" said Mrs.Arable. "I don't see why you say a web is a miracleit's justa web."

"Ever try to spin one?" asked Dr. Dorian.

trern Chariot tr".. lVt.b. by Y.11 Whitt.

Neonatal intensive care nurseries (NICUs) across thecountry are struggling to become "family-centered."But while they embrace the morality and logic of thevalues of family-centered care, NICU staff find that itcan be extremely difficult to bring about the changesneeded to implement this philosophy.

I low can a NICU move toward developmentallysupportive and family-centered care during these days

AcknowiceNment!,:ye wish to thank Rose Barber and AnnMarie MacIxod for their enormously helpful contributions tothe revkw of the manuscript.

18 June/july 19'45 Zero to Three

ot health care "reform," and the associated -down.-.i/-ing," "rightsiiing," and reorgani/ati(m? And even it asingle nursery can take on this challenge successfully,could almost all the NlCUs in a state work collabora-tively toward a common goal of providing individual-ized, developmentally supportive, and famil\ -centeredcare to high-risk and special needs infants and theirfamilies? The e \perience of the Colorado Consortium ofIntensive Care Nurseries demonstrates that a statewidemovement can provide a strong web of support forchanging the wav that intensive care is provided toinfants and their families. This experience also providesvaluable insights into the process and progress ofchange within individual NICUs.

Evolution of the Colorado ConsortiumThe initial sparks for the consortium began in the late1980s, when NICL; professionals began to read aboutdevelopmentally supportive care in the literature,attend meetings on the topic, and incorporate newinformation into their clinical practice. A training centerfor the Newborn Individualized Developmental Careand Assessment Program (NIDCAP see box) had alsobeen established in Denver in 1990. The availability ofthe training center for consultation and education indevelopmentally supportive care furthered progresswithin individual nurseries. Eight of Colorado'c 20NICUs committed themselves to training a few of theirstaff in this approach.

Nurseries that had invested in NIDCAP trainingsoon recognized the need for addirional support andconsultation in order to implement the recommendedapproaches and to work toward nursery-wide changes.Because the eight nurseries that had received NIDCAPtraining originally were working toward a commongoal, it seemed logical to develop a system of supportfor this group. Newborn I lope, Incorporated, a Col-orado philanthropic organization that supports educa-tion and research for professionals who care for infantswith respiratory complications in newborn intensivecare units, provided support for the initial consortiumefforts.

The consortium has become a statewide network oflevel Il and III neonatal intensive care units which pro-

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DefinitionsDevelopmentally supportive care IS a method III ( dlinglIlt thigile iniants II c eliding to an evaluation ot the Huhs ulna! imam "s needs and strengths. the imam Is S leved Isat) ,R (Ise t (nth I111110( tO his 01 he! (MI) 1 RC.

Ihe nev horn intensive c are enviionment and 1 ateP,IsIng,R Its Ities ,Ife then individuali/ed at( onlingis the Ness -

boot Indiyiduall/ed Deselqunental ( are and AssessmentPlogiam [NII)( PI provides a names\ olk to; assessmentand mills iduali/ed inters ention pletooll and high tiskimam, \ Is. I'M tc. In!anV, %%Flo re( elk e de\ elopmerliaiksupport's(' ( are using the MD( Al' approac h has e

impros et! meth( al, developmental, and minds intel.ftout( Mlles ,Is ( ompared with infants ss ho do not [re els('this modified ( cre (Als. et al.. I Wih. tOIL Ile( Lei. at al..

911 Pm I leis( her, et al., 1995i.

Family-centered care is the «unpassionate, open. totalmt lusion of the tamily in the ( are and dec ision makingpipe ess for their baby. In order to ac complish a great

deal ot information must be provided and edu( ation nlusttit ( cri, not only regarding medical tae ts, but also about

rights. solues. pi joitties, e\pectiltions, ."'d need.' ol thef,unils. I he ;(),11 is to /cave the potset Ii ith the I:1mill

that is. rimer take it away in the first place, necessitating-entpowering" the family at a later date. iSmith-Sharp, def-inition deseloped for use in education anti consultationwith the Colorado ( onsortimm. I larrkon" prim iples fortantily-c entered neonatal care (1 99 3) address the difficul-ties that families continue to have con«ining «minfuni-c 111011, environmental and developmental ( ont ems, pain

management, ethical de( ision makingmd follow-up.These print iples piovide the beginning guidelines forprogress toss arch lannlyq entered ( are in ( olorado's e on-

sodium of NICLls. The belief that dcvelopmentalls sup-portive anti tamilv-«,ntered care are interwoven andinseparable is central to the valuec of the consortium andis reflected in all consortium efforts.

vides support for nurseries that are striving to imple-ment both developmentally supportive and family-cen-tered care. Consortium staff consists of the project direc-tor, a physical therapist, a veteran parent of NICU grad-uate, and a registered nurse who works in a NICU. Allproject staff use the N1DCAP orientation to develop-mentally supportive care and embrace the farnily-cen-tered care philosophy and are committed to its imple-mentation. Consortium staff support member nurseriesthrough on-site and telephone consultation, dissemina-tion of current literature, and organization of astatewide meeting where nursery representatives canshare experiences.

Enthusiasm for early consortium efforts kindled theinterest of other nurseries. An innovation grant from theColorado Department of Education allowed the consor-

tium to welcome any nurseries in the state that wereinterested in participating. Expanding the consortiumwas easy. Ot the 20 NICUs in Colorado, only threedeclined to participate, on the grounds that they weretoo involved in issues such as reorganization or down-sizing, or had too few infants in their nurserik::, to war-rant participation. The remaining 17 nurseries wereexcited about being included and anxious to beginwork.

Consortium goalsThe statewide consortium's current goals are:

to enhance the provision of developmentally sup-portive care to Colorado infants who begin their lives inintensive care U nits:2. to assist each nursery with the implementation ot aphilosophy of family-centered care; and3. to enhance the identitication and reterral of infantsneeding transition to community-based developmentaland family support services, such as Part 11 ot the Indi-viduals with Disabilities Education Act (IDEA) andpublic health. This process had been initiated in level IIInurseric.. by a Colorado Part I I-funded project intitled"N1CU Connections," Linda Ikle, project director.

To work toward these goals, each nursery has devel-oped a working team composed, at a minimum, of aconsortium staff member, a nurse manager, a staffnurse, a veteran NICU p,aentind a community Partcoordinator. Teams welcome additional members, iden-tified for their interest in and commitment to the nurs-ery's goals. Teams commit themselves to meetingmonthly with a consortium staff member and to worktoward implementation of the goals of the consortium,as well as their own related goals. Consortium staff pro-vide monthly consultation and support, educationalresources, and a means of networking among partici-pating nurseries.

Strategies to help nurseries growWe use three strategies to help nurseries achieve theirindividual goals as well as the goals of the statewideonsortium:

1. frequent consultation with consortium staff;2. a communication link, to share progress andapproaches with other nurseries; and3. collaboration among nurseries throughout the state toidentify and address common issues.

ConsultationOn-site consultation has frequently been the catalyst formovement toward a nursery's goals. As a nursery joinsthe consortium, it participates in an evaluation of itsenvironment, caregiving practices, policies and proce-dures, and attitudes toward developmental and familysupport. With this information available, each nursery isassisted in developing its own goals and action plan,taking into account its developmental level (see below)

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and available resources. As a nursery progresses, it

reviews its goals and action plans to determine whatchanges need to be made.

Developing a relationship with each nursery team isthe major responsibility of consortium staff. As eachteam identifies its own needs and goals, the consultantindividualizes support and provides continuing guid-ance. In many respects the consultant functions as amember of the nursery team and, as such, contributes tothe development of the nursery.

The conse ilum consultant gets to know and drawsoui the strengths of each member of the nursery team.Parent and coinmunity members often. contribute someof the most productive activity and creative ideas, butbecause these members come from "outside the sys-tern," their contributions may be undervalued. The con-sultant's recognition of these contributions and supportfor their implementation can go a long wav towardmaking these team members feel valued and their ideaslegitimized.

The consultant is also a catalyst for change. To helpthe team increase its potential for change, the consultantmust first understand the unique strengths, interper-sonal relationships, and power struggles that are char-acteristic of the group. Then she must create an envi-ronment which encourages all members of the team tocontribute and to discuss differences of opinion respect-fully. Establishing a level of trust among team membersprovides the foundation for reflection on current prac-tices or procedures that the team may need to changeand for challenging old ways of thinking. Within anongoing, safe relationship, the consultant is able to per-sist in offering new information or alternative ways ofthinking. The team is able to consider the information,relate it to their own needs and goals, and use it, if theychoose, to make change occur.

The consultant helps nurseri es identify 1.iarriers toprogress. A nunaber of nurseries have been coping withsevere reductions in staff, physical relocation of thenursery, and similar issues that make working on con-sortium goals a lower priority. In these circumstances,the consultant helps the nursery team recognize that theissue is not under their control, that it does affectprogress toward their goals, and that it is all right topause and regroup. Several nurseries have gonethrough the process of identifying an external issue ofconcern, taking time out to address it, and then comingback to re-evaluate whether the goals and action planinitially established are appropriate to the new circum-stances. Almost all nurseries return to the work with anew resolve to progress toward their goals.

CommunicationCommunication among nurseries helps them .o remem-ber that each team is pi', of a larger effort, workingtoward similar goals. The consultant broadens eachnursery's knowledge base by supplying current litera-

ture and other materials, news of educational opportu-nities, and relevant information about activities in othernurseries. .All of the nurseries have generously sharedtheir torms, procedures, and protocols with other con-sortium participants. A newsletter disseminates addi-tional information.

The experience of open communication among hos-pitals has prompted nurseries, 1vhose doors have tradi-tionally been closed to outside professionals and agen-cies, to invite visitors in, in order to share ideas andtechniques. As a result, nurses from referring units cangive more accurate information to parents whose babywill be transferred to another nursery, and can assurethose parents of a similarity of concern for family needs.Representatives of community agencies may makerounds with nursery staff in order to identify infantsand families who will need community support ser-vices. Enhanced communication among staff of nurs-eries and community service agencies fosters creativethinking about hoy to provide family-centered care.

The consortium's annual day-long statewide meetingoffers an effective and enjoyable forum for representa-tives from all nurseries, parent groups, community sup-port groups, arid service agencies to discuss issues,strengthen the network, and experience a personal,energizing connection with the consortium. The meet-ing serves to identify issues of statewide concern and togenerate position statements supporting policy change.

CollaborationIncreased communication among nurseries across thestate has facilitated collaboration. Collaboration onissues of common concern has united the consortiumand influenced statewide change in policy and proce-dures that affect infants and their families.

Transport between nurseries is an example of anissue affecting families across the state. A critically illinfant may be transported from a community hospital toa distant NK1J in order to receive a level of intensivecare that is not available in the familv's community. I3utvhen the infant recovers, insurance or managed carecompanies may not cover the costs of transport back tothe community NICU, thus putting a continuing hard-ship on families who may not be able to travel long dis-tances in order to be with their baby. When infants aretransferred from one NICU to another, parents oftenhave difficulty adapting to the new nursery's proce-dures, personnel, and environment. Nurses able to helpparents "transfer trust" from one nursery to another arenot consistently available. Since many of the nurseriesin Colorado were concerned about transport issues, theconsortium was able to define the issue, determine con-tributing factors, and make recommendations forchange. Statewide forums have been established toidentify financial, political, and family factors that needto be addressed. Nursing staff across the state are work-ing to ease families' transition between nurseries by

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providing educational information, videotapes, and vis-its for parents to the nurseries to which their babies %yinbe transferred. The effort is ongoing.

Implementation of Ind i yid uali,ed Family ServicePlans (IESPs) in the NKI: is another statewide issuethat nurseries have addressed collaboratively. Begin-ning the IESP process as soon as possible allows infantsand families to receive essential support in a timelyfashion. A study by consortium staff revealed that mostot the key elements needed to initiate an I FSP in theNI(21. are already in place and well documented inmedical records. All C'olorado N ICUs %vitt soon be ableto use ,1 common format for initiating IESPs; the consor-tium will educate nursery staff about the importance offamily participation at all levels of planning and deci-sion making for their baby.

Factors affecting progressNurseries have varied in their patterns of progresstoward implementing developmentally supportive andfamily-centered care, independent of the strategies usedto support their growth. Each nursery has its own his-tory, cast of key players, style, and work ethic. The evo-lutionary process unique to each nursery reflects thatnursery's developmental level and trajectory, the keycomponents contributing to work toward their goals,the nursery's style of dealing with difficulties, and theadded catalyst for change provided by consortium sup-port.

Developmental trajectories of individual nurseriesEach nursery appears to have its own developmentaltrajectory. From our experience, we have proposed sixstages or levels of development that nurseries negotiateas they achieve the ability to integrate more sophisti-cated methods of approaching problems, to producepositive change within their settings, and to adapt tonew ways of thinking. Each level involves both growthand some turmoil; indeed, increased turmoil seems tobe inevitable before a nursery progresses to the nextstage. Progress through each developmental level seemsto depend on exposure to and experience with the pre-vious level, as well as on internal and external factorsthat support or disrupt progress to the next level. Somenurseries spend a great deal of time working at eachlevel before progressing to the next; some move quicklythrough the early levels, only to get "stuck" at a morecomplex stage.

The first level is that of awareness. At this stage,nursery staff become exposed to and excited about theconcepts of developmentally supportive and family-centered care, and aware of the potential impact of theseconcepts on their own practice. This "birthing process"produces a great deal of interest among staff in explor-ing educational opportunities and ways to implementdevelopmentally supportive and family-centered care.Interested staff expectand attempt--quick changes in

the nursery environment and caregiying practices,oftentimes without the investment of the entire nurserystaff. As a result, staff can become overwhelmed by toomuch information and frustrated by haphazardness inimplementation plans. If too many changes areexpected without appropriate preparation, turmoilwithin the staff results.

The next developmental level appears to be disrup-tion, characterized by staff resistance and/or apathytoward change. Emerging from the experience ofincreased information and expectations, staff demon-strate unwillingness to change their techniques andapproaches to caring for infants and families. Policiesthat were bent to produce flexibility are suddenly tight-ened againfor example, visitation policies arereviewed to make sure that parents are not "overstep-ping their bounds" by being present during staffreports. Typically, some staff reject new supportive tech-niques for infants. For example, a well-intentionednurse may provide a blanket roll in the bed againstwhich a baby can brace his feet. The nurse on the nextshift pulls out the roll, saving, "There's too much stuff inthis bed; I can't get to the baby to du my care."

The nursery may then move to the level of organiza-tion, in which an orderly approach to the implementa-tion of developmentally supportive care is evident. Inthis stage, nursery staff typically seek information andresources in a systematic manner. They may begin totake on the identity of a "developmentally supportivenursery" and direct many of their resources towardimplementing developmentally supportive care. Staffmay seek outside consultation, attend meetings ondevelopmentally supportive care, visit other nurseries,and begin to develop an organized plan for educationand policy change.

When a nursery has established itself as develop-

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mentally supportive, it 111,1 move to a level of identity,in which procedures and protocols for delivery of careare developed and implemented. Typically, staff at thislevel accepts many developmentally supportiveapproaches as "the right thing to do," but they may stillhave a less-than-complete understanding of the ratio-nale underlying their behavior or of ways to individual-ize the approach with infants and their families. At thisstage, a prescriptive approach is common: All infantsvill receive "developmentally supportive care" or"family-centered care" --as defined by nursery proto-cols. For example, all infants may be positioned in bed-ding to facilitate flexion and leg bracing ("nests"), with-out regard to individual babies' age or capability.

At the next level, integration, a nursery's approachesto developmentally supportive and family-centeredcare become more sophisticated and individualized.Staff at this stage may recognize areas of care that needenhancement or expansion, but they may have diffi-culty moving toward these goals without further assis-tance. Nursery staff at this stage believe that they havea family-centered approach, but in reality they haveonly made changes to make parents more comfortableand have "allowed" them to participate in their infant'scare. Stat may still be unable to conceptualize infants as,-ollaborators in their own care, or parents as equal part-ners in the nursery. Sometimes conflict between staff'sbelief that theV can accomplish further goals by them-selves and their need to obtain more expertise or con-sultation may impede a nursery's ability to move to thenext level.

At the level of generation, a nursery is able to inte-grate developmentally supportive and family-centeredcare into its philosophy and practice on a thoughtfuland sophisticated level. Staff are able to be flexible andindividualized in their practice and can generate newapproaches and applications in novel situations. Nurs-ery staff not only provide dev«ipmentally supportiveand family-centered care within their unit, but are alsoable draw on their experience to provide expertise andconsultation to other areas of the hospital. The opera-tionaliza tion of developmentally supportive and fam-ily-centered care is apparent in every area, from indi-vidualized care delivery to implementation of profes-sional standards and evaluation procedures.

Components of changeAs each nursery in the Colorado consortium has madeprogress along the developmental levels, we havebecome able to.identify several essential components ofpositive change.

Key pishmaries, people with a passion for implement-ing developmentally supportive and family-centeredcare, are essential. Their passion enables them toweather the storms of implementation. Key visionariescan be nursing, rehabilitation, or management person-nel who doggedly work toward their goal. A manager

yho k a visionaryboth a "leader" and a "manager--has frequently been critical to the success ot individualnurseries. While a leader participates in planning,implementing, and evaluating a process, a manager'srole includes delegating authority appropriately andexpecting positive outcomes. A visionary manager'scommitment to advocating tor the efforts of the groupsupports collaboration and encourages growth. Oneconsortium nursery was faced with closure, vet themanager pursued activities to the last week ot opera-tions. She realized that not only w(nild the infant!.. andlamilies benefit, but the statt yllo were to be reassigned.1.ild also carry the nursery's values and approach(swith them to a new unit.

nur,ery's commitment to value the Indwutual infantand Ins or her familv in the deliperu of intensice care is tilesecond kev component of succes. Typically, those nurseriesthat have invested in the implementation of a philoso-plw which focuses on infant and family needs, ratherthan on intensive care techniques alone, have been ableto make significant progress. These nurseries have alsosolicited parents as partners in working toward theirvision. Several of the nurseries have now establishedparent adv.tiory groups and consult them about familyand infant needs when new policies and procedures arebeing considered. Other nurseries are systematicallyrevising procedures to incl uue Levelopmentally sup-portive interventions.

Carefulhi planned strategies and inuestment pmgressare a third component of success. Several consortium nurs-eries have committed time and money to developmen-tally supportive care NIDCAP training for staff. With-out exception, these nurseries have shown moreprogress toward their goals and have been more flexiblein incorporating family-centered care than nurseriesthat have not invested in training.

Nurseries that support their commitment with astrategic plan have made significantly longer stridesforward than nurseries without a plan. One nursery, forexample, seemed stuck; and participation in meeting;was dwindling until the team was able to state its goalsclearly and develop a written action plan. Then meetingattendance increased, and the nursery experienced sig-nificant growth.

A mutual respect f(n- each team wordier's contriludionscharacterized the more successful nurseries. Since each ofthe nursery teams included, at a minimum, a manager,a staff nurse, a parent, and a community Part 1-1 coordi-nator, working toward common goals involved the dis-cussion of widely differing perspectives. After listeningto a parent, one team fought successfully to changetime-honored hospital policy so that parents couldreceive a copy of their baby's medical record at nocharge. I lonoring the views and values of all teammembers contributes to the richness of the wo : thateach nursery produces.

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How nurseries nogotiate difficultiesRegardless of the supports provided to help nurseriesprogre,- 5, tactors such as changes in management policy,staff changes, statt ratios, and geographic location ot theunit strongly influence what happens in the nursery.

In the context ot major changes in health care deliv-ery and Iinant e, maniiNement policies tend to expect moreproductivity with fewer resources. Typically, hospitalmanagement tends to reduce the number of hoursallowed for education and planning, for staff and man-agers alike. Many nurseries are turning to foundationsor competitive public grant funding to support stalleducation and purchase supportive equipment. Cre-ative, committed nursery staff a-e best able to stretchlimited resources and continue !0 support the values otindividualized care.

.Staff chat/scs in many hospitals involve reductionsand reorganization. Reductions, through attrition, reas-signment, or lay-offs, significantly affect both moraleand consistency of care. Personnel assigned to a nurseryfrom other units lack exposure to or training in devel-opmentally supportive and family-centered care. Reor-ganization often means added responsibilities for man-agers, who no longer have the time to support theircommitment to the developmental program. Somenurseries in the consortium have experienced a com-plete turnover of staff and management; some haveclosed.

Chanxes ii staff-to-infant ratio are a direct result ofchanges in management policy. Most consortium nurs-eries are now caring for more infants with fewer staff.This means that staff spend their time on necessaryintensive care procedures, medication, administration,and essential caregiving routines (e.g., feeding) andhave little time left to devote to enhancing family-cen-tered and developmentally supportive care. In additionto the impact on infants and families, staff who are com-mitted to providing such care experience tension andloss of professional satisfaction Yhen they cannot do so.

Physical relocation of a nurserya move to a newlyrenovated unit or relocation with other critical care ser-vices in a "mega-unit"may affect the implementationof developmentally upportive and family-centeredcare. Although a move may yield benefits, such as morespace and resources for fami:k.s, it is hevertheless dis-ruptive. Some of the nursery's previously achieveddevelopmental milestones may be lost temporarily,until a new level of equilibrium is achievet_ .n Lie newunit. This is especially likely if a move involves a loss ofspace or a less desirable location.

The role of creative strugglingThe process of creative struggling allows groups to usetheir resources and team attributes to identify andaddress barriers to progress. Creative struggling seemsto be an important part of the growth of ntuseries; itclarifies their vision and helps them realize their collec-

tive strength in resolving difficulties and develipingnew approaches. Work toward resolution of the strugglecan yield new insights and progress. It is important,however, that teams articulate their goals Well andincorporate concrete activities into an action plan. Otherwise, teams may have difficulty in recognizingprogress toward their goals and inay expe.-ienee frustra-tion and apathy, despite a con,-;ultant's best efforts tooffer expertise and support.

All of the consortium nurseries have niggled toimplement their goals. We have learned that when bar-riers seem insurmountable or external ;actors over-whelming, no substantial work gets done It is accept-ablein some cases recommended--to take "time out."These "bridges of inactivity ove.. chaotic waters"allowed nursery staff to attend to the issue at handIndthen return to work toward their goals with freshresilve.

Nurseries progress toward their goals according totheir individual time frames. The processes of creativestruggling and change take more time and patience tha»either consultants or teams themselves expect.

In sum ..."fhe Colorado consortium has grown from a few nurs-eries to a statewide network of NICUs, all workingtoward the implementation of developmentally sup-portive and family-centered care. The consortium expe-rience demonstrates that commitment to change can befound not only within individual nurseries but extendto an entire statewide system as well. Unified by a com-mon vision, entire systems can movenot easily, notsteadily, but with organization, thoughtfulness, andresolve--toward changing the intensive ca experiencefor infants, families, and professionals.

ReferencesAls. Lay, hon, , Brown, I .. Gibes, K., Duffy, 1%11 . McAnulta, (., .

Blickman, I G (19861 Individualized behavioral and envininmentalcare for the VI.131V preform intant at high risk for( 1 1aou .pmonaradysplasia: NIC1' and developmental outcome Pediatrit. s, 78. 1123-(32

Als, 1 , I awhon, (;., )ifity, McAnulty, G.B , Gibes-C. ,ros,man.Blickman, I.G. (1994). Individualized developmental care tor

the Veil, 1(.w-krth- weight preterm infant. loutnal of the AnwrikanMedical A,:ociation, 272, 853-88.

Als, I I. (1983). Manual tor the naturalistic observath(n (0 term andpreterm infant,. Unpublished manuccript.

Becker, P.T., ( runwald, P.C., Nloorman, I. & Stuhr, S 1991). Out-Corn,.`s ol developMen tally supportive nursing care kir VC/ V IOW hi I thweight infants. Nursing Researt h, 411. 150-1=,c.

Becker, P.T., Grunwald, P.C., Moorman, J., Stuhr, S. (1993). ts otdevelopmental care on Ivhavioral organization in very-low-birth.weight infants. Nursing Ri -,earch, 42, 214-220.

Fleicher, VandenBerg, K A , Constantinou. J.0 (In prey.). Familyfocused developmental care and interventions tor very low birth-weight infants in the NI( 1

larrison, I I. (1)91). 'Me prin iples for familv-ientered neonatal carePediatric.- "'. 643-6r0

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Nursing the Premature InfantLydia Furman, M.D.

0: (.;eneral Acadenn, Pediatrics. Rainbow Babies andhildren's I iospital. leceland. olno

A mother whose infant is premature, and %v ho hopes tonurse, is in ,1 difficult situation. She tact-, looming wor-ries about her baby's chances of survival and healthydevelopment, and at the ',011ie time she is unlikel1 to beable to take any active role in hk or her care. Eachmother handles this overwhelming situation differently.For some, any ideac about breastfeeding fly out the win-dow; tor others, nursing becomes crucial, as the "onlything 1 can do for my baby."

Even when nursery policy and staff are supportive,the individual mother and her own preterm baby muststruggle to become a nursing couple. Because "suck andswallow" may not become coordinated until 34 Iveeksgestation, many mothers must "breastleed" a pump 24hours per day, long before they can put their tiny babyto the breast. Once nursing begins, sessions are usuallybrief, and are often limited by the loby's fragility toonce or twice a day. The waiting and pumping, andpumping and waiting, can seem interminable, particu-larly for the mothers of the smaller (<1500 grams) andYounger babies. Even the mothers of larger and olderbabies (34-36 weeks gestation) face hurdles, such as thebaby's "sleepiness." I will focus on the growth anddevelopment of the nursing relationship in preterminfants and their mothers. I will address the nutritionaland technical issues involved, but will draw most heav-ily on detailed interviews with seven mothers ofpreterm infants.

Scientific issuesIs breastfeeding the premature infant a reasonable goalmedically? Is breastmilk a viable source of nutrition forthe preterm infant? Without fortification, the ability ofterm milk to produce adequate physical growth inpreterm infants, particularly those with birthweightsless than 1800 grams, has been questioned on the basisof randomized trials (Lucas et al., 1984; Lucas et al.,1989; Steer et al., 1992). Term milk, however, has a sig-

Ackflowledpnents: Many thanks to Maureen flack, MIKAIB,and to Shelley Senders, M.D. for referring the mothers inter-viewed and for helpful discussions. Thanks also to BettyRogers, R.N., 115CLC, Donna l'rots (mother of Olivia), Donna1)owling, M.N., and Nancy Fildenkris, R.N., IBC I.C, for con-tribi fting their insights, and to Erna Furman and Robert Fuima, M.D. for reviewing the manuscript. Special thanks tothe nursing mothers, each of whom generously shared hertime and ideas.

niticantly different composition than preterm humanmilk (Schanler & Oh, 1980; Anderson et al., 1

et al., 1981). Although premature milk differs somewhatamong mothers and changes consktently with advanc-ing gestation, it does appear to support adequate (i.e.,intrauterine) rates (Committee on Nutrition of theAmerican Academy of Pediatrics, 1977) ot growth inpreterm infants who are ted their own mother's milkMuhud hia & Musoke, 1989; Ramasethu, et al., 1993) or

banked preterm milk of the same gestational agelross, 1983). 'Me difference between preterm and term

mothers' milk, and the fact that each is nutritionallyappropri ite at a different age, are remarkable remindersof the unique and crucial importance of the indix'idualmother and her milk to her own infant.

Is premature formula "better" than prematurebreastmilk? Comparision trials are all short-term, andfew are randomized. Faster daily gains in weight(although not in length or head circumference) can beObtained with preterm artilidal formula, both as com-pared with, and as a supplement to, preterm mother'smilk (Gross, 1983; Mercado, et al., 1990). Likewise, pro-tein fortification of preterm breastmilk can increaseinfant growth rates (weight, length, and head circum-(erence) (Carey, et al., 1987; Greer & McCormick, 1988;Kashyap, et al., 1990). These gains can exceed in uterorates, the long term benefits of which, if any, are notknown. It is also not clear if fortification of preterm milkwith minerals (especially calcium and phosphorus) isnecessary or desiratle. Although study results do notagree (Modanlu, et al., 1986;Carey, et al., 1987; GreerMcCormick, 1988), it seems likely that "approximately50 percent of breastfed infants of less than 1800 gramsbirthweight [need calcium, phosphonis, and vitamin Dsupplementation1 after hospital discbarge" (Hall, et al.,1993). It appears that both fortification (addition ofingredients) and supplementation (addition of quantity,based on the mother's supply) of premature breastmilkcan be individualized. Based on the available evidence,exclusive feeding of sufficient quantities of pretermbreastmilk (of the same gestational age as the infant)can be nutritionally equivalent to premature formulator the preterm infant who receives careful follow-up.

Observational studies performed in neonatal inten-sive care unit (NICU) settings reveal that mothers canand do succeed in nursing their preterm infants,although a general consensus exists that fewer actuallybreastfeed than had wanted to. A survey of 327 mothers

24 Juno/July 199q Zero to Three

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in a ,-,xviss neonatal intensive care referral unit showedthat at 3 mc ths, 50 percent of nwthers were completelybreasttceding and 25 percent were combining breastwith bottle --rates similar to both the Swiss and the U.S.national averages for all infants (I lunkeler, et al., 1994).

Canadian study compared 55 mothers of (2 low birth-weight (<2500 grams) intants with 55 mothers of 55term infants (>38 weeks gestation and >2500 grams).Incidence rates of lactation at delivery were 58 percentfor the low birthweight infants and 73 percent for theterm infants, but in the long term, only 11 percent of thelow birthweight infants, versus 85 p2rt.ent of the terminfants, were entirely breastled (Lefebvre & Ducharrne,1989). Studies from the United States are limited innumber and size, and report anecdotally higher successrates. For example, with a focused and proactive proto-col, 16 of 22 mothers ot premature infants intmding tonurse were discharged cornpletely breastfeedi..g (Stine,1990). However, when only mothers formally "choos-ing" to nurse are studied, outcome results may appearmore favorable than when all infants are included; the"bottlefed by choice" group often includes smaller andless mature infants who stay in hospital longer (Gunn,1991). In countries with less neonatal intensive careavailability, both low and very low birthweight infantswho are, of necessity, discharged home to breastfeed cando so (Ramasethu et al., 1993). In summary, motherswho want to nurse their premature infants can be reas-sured that breastfeeding is an achievable goal.

Case reportsThe seven mothers interviewed for this article are mar-lied, Caucasian, and middle to upper middle class, agroup anecdotally representative of those seeking tonurse in this neonatal unit. Three achieved "complete"nursing, two breastfed "partially" with limited supple-mental bottlesmd two wanted to breastfeed but wereunable to do so. Each agreed willingly to be quoted, andall spoke eagerly, reflectively, and with strong emotion.Three mothers had given birth for the first time; the oth-ers had two to four other children each. Except for oneset of triplets, all were singleton births. The infantsranged in gestational age from 26 to 35 weeks, in birth-weight from 700 to 2300 grams, and in chronologic ageat the time of the interview from 2 months to 2 years.None had congenital malformations or required majorsurgery. The stories of two of these babies and mothers

PamelaPa Meld, (W)35 I 1 mcrnths old, was horn at 20 weeks gestation,weighing I i 10 grams. She required ventilation for 4 days andsupplemental o\vgen tor 7 weeks. Mis. G., who had hottlejedher three older ( hildren, de( ided to bmastteed Pamelabecause "it was the only thing 1 «Arid do for her." Mrs. G.1R.gan punimng immediately after delivery and pumped every1-4 hours duung the day and al slightly longer intervals during

t he night she had woo about -kangaroo ( are awl -did a lotof slin-to-skul holding .as MLR II as 1 ( ould." 331313 h she teltwas Set helpful to her and Pamela. she des( !Med neonataland maternm nurses as .extiernek helpful and ',Lipp 1111I Ill 11(1,,balld aly) "U))pOlted hel de( 1,1()11 II) nurse. w hen

she would saS, I hate this pump!-. he would kindls rept\"Nol too much longer.

Mrs. ( !malls was able to )ot Pamela to hreast one or twotimes per (la at 14 weeks gestational age 16 s eeks dtter hirthibut reported sers little suc es,. Pamela went home two weeks

(wnPlclels bonleleeding. and in arldition, Mrs (,he( ante ill ssithi mastms on Pamela s first (EIS home. But %IN

ss ho des( obi, herselt as ( atm. 1.ml ha( k, and doe!mined "till 33 anted to 11311,e. She obtained prompt medic altreatment Ioi hel mastitis and der ided ion IR1 own, to attempt

IReastteed Pamela at edc h feeding, allow mg halt an hour forthe nursing, atter w h Ii lw had planned to gke Pamela a bot-tle it she did not latc II on or nurse. Despite !natal trustrationsand difhc tithes. Pamela nes er needed a bottle and anc; 1 4

days, "got the idea." .At 1 1 months of age (0 months c onec te(1age), she now nurses three limes per da5 and om c at night,eats table mod. refuses a bottle, and is beginnuig to use ( up.Her growth and des elopment are normal for het um orrec ledage.

KateKate L., now IOW months old, was born at 12 \seeks gestatiml,weighing 1 1 00 grams and went straight into room air to gainand grow. She is the tirst biologic child of Mrs. t ., who saidshe was c ((minified to hreastteeding prior to delis (IA, a desirestrenglIRmed bs Kate's im.mature birth: "1 telt it was the onlsthing I could do tor her \IN. t . began pumping c cis 1 hoursimmediately after delnery. She descrilx.d neonatal nurses asextremely supportne Cepecially those Who had been nursingmoms themsekes-1. although o« asional stepdown unit noNesjoked that it would "sun. IR, easier" to gie Kate bottle 1.,Ite

was fed by "nosetube" iga5agef initially and re( ed (ink fourbottles during her entire hospital stay, per Mrs. I s request. Shewas put to the breast mitialls once a das at 11 weeks gesta-turnal age (one week atter bri-du and often was gas aged whileat the breast to help her asses iate satiety with nursing. Mrs. I .

reported that at IIPst Kate's mouth was too small to ( met hernipple and that she la( ked coordination and strength, althoughshe evc,ntuall,' bee am(' able I0 fat( h on with a spec rat"squeaking noise- Mrs. I . ( ame to ret ogni/e. Kate 111(.11 cmder-w cot a hernia operation two (lays prior to her disc barge homeat one month of age.

On«, home, Mrs. L. attempted «Runkle breasneedingdespite her own exhaustion and very ,,OIT nipples. Kate beganto lak h on and nurse, but did not gain weight. I ler "phenomcnatty supportive" pediatric ian proyit led a referral to a lactation«msultant, who re«immended ( hanges in the position of thenipple in Kate's mouth and advised nursing regularly at two-hour inter% als. No supplement was prem. tilled. Although Mrs.

. had one bout ot mastitis, nursing appeared to be getting Ontrae k.

Iwo Week,. later, %Olen Kate was 1(1 weeks gestational age,

267cm to Three June/July 1995 25

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DiscussionIhe stories of Mrs. ( and Mrs. I . raise as many ques-tions as they answer. Vhat permits a "successful" oto-come, and what interferes? Neither oi these mothershad nursed previously, and both were extremely COM-Mit ted to breast feeding their babies, a decision triggeredby the baby's prematurity for Mrs. G., and strengthenedby it for Mrs. L. Other mothers also said they chose tobreastfeed not lust because breastmilk is "best" (nutri-tionally and immunologically), but because it was theonly way to even indirectly provide for and make con-tact with their tiny babies. Several mothers felt that ded-ication and independence beyond the usual were neces-sary .ingredieMs for success in nursing, and reportedboth feeling "different" and being treated differently bystaff because of their commitment and determination.Most reported being one of many mothers pumping inthe neonatal intensive care unit, but being only one of afew (or none) actually nursing in the stepdown unit.Another mother, Mrs. M., whose baby bottlefed despiteher desire to nurse, commented sadly, "I really thinkyou need to be there almost 24 hours a day... I just could-n't do that." The three mothers who had nursed previ-ous children each volunteered that they would havequit if not for one or more prior successful nursing expe-riences.

Frequent pumping is essential and establishes andsustains lactation until the baby can nurse. Experts rec-ommend initiating breast pumping shortly after deliv-ery and pumping at least five or more times a day (somesuggest 8-12 times per day) with a pumping durationexceeding 100 minutes per day to achieve adequatemilk production (Hopkinson, et al., 1988; Walker, 1992).(One hundred m;nutes per day equals, for example,pumping both breasts simultaneously for 10 minutesroughly every 2 1/2 hours.) Advice given to (or at leastperceived by) Some mothers that regular (every threehours) nighttime pumping is unnecessary may con--tribute to lactation failure (Rogers, B., personal commu-nication). In addition, pumping both breasts simultane-ously with a heavy-duty, piston-type intermittent pres-sure electric pump contributes greatly to milk yield(Niefert & Seacat, 1988; Auerbach, 1990). Two motherswho had misguidedly used hand-held suction pumps athome noted their milk supplies dwindling with these

26 June/July 1995 Zero to Three

devit es and then increasing ome they stumbled (intothe solution to the problem and changed to the correctpump. The cost ot home breast pump rental, estimatedat '-i,200-300, was not reimbursed by any of the severalhealth insurers these mothers used.

Only one mother reported a "let down" sensationwith pumping, vet tor some, pumping became almost asubstitute for nursing. Several mothers continued topump regularly for several weeks while initiating nurs-ing, and eyen concurrently with effective nursing. theyrecogniied that they were doing "double duty," vetwere unable to discontinue. When it bet affie lea r thatbreastteeding was not succeeding, Mrs. M. spoke about"weaning," not in reference to her baby, but to herpump.

A significant difficulty with pumping is the lack otinteraction with the infant. Rather titan promoting afeeling of oneness between mother and baby, pumpingfocuses mothers and nurses on the quantity of breast-milk produced. Mothers commented on the arduous,time-consuming, and endless nature of the pumpingthat is necessary. Three who nursed successfully felt thatthe worst thing about pumping was not the fatigue,boredom, or occasional discomforted associated with it,or even the fact that it was time in the hospital spentaway from the infant. Rather, for them, pumpingbrought worries about the baby's survival to the tore. "It(pumping) was mentally difficult. Was this baby goingto survive?" (Mrs. P) "When is (she) going to drink thismilk? Will they ever be able to feed her at all?" (Mrs. S.)"Please, let my baby live to have this milk." (Mrs. R.)Mothers who are able to experience, acknowledge, andverbalize these overwhelming feelings may have adegree of personal maturity that both supports theirperseverance in a crucial way and then permits them tomove beyond pumping to nursing.

What about the introduction of bottles? Do theyinterfere with breastfeeding? Convenience, more rapidweight gain (and hence earlier discharge) are associatedin most clinicians' and many mothers' minds with theuse of bottles. Well aware of potential pitfalls, Mrs.conscientiously restricted the bottles Kate received, andvet ended up bottlefeeding, while Mrs. G.'s baby wenthome completely bottlefeeding, and yet was able tonurse. Is "nipple confusion" real? Do babies get"hooked" on the bottle? Experts disagree. Infants offour of the five interviewed mothers who did succeed incomplete or partial nursing received frequent bottles inthe nursery. The following case illustrates the extreme.

The tripletsC. gave birth by emergem y ( esarean sus lion i I weeks

gestation to three babies, ranging in weight from 1 500 to 1 800grams. l he babies were gavaged until breast and IsAile woeintnidui cid. Once lumui, Mrs. C. nursed one baby at a tittle

("Illy %pet Sil time with ear h one") and established a uniquentlating nursing s( hedule. On a given day, two babi(-, would

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111(',1,41(4.(1 ( 01(11)11'1('1. ,111(1 011(` \\0(11(1 (1111\ 1)0111(,,

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11,11)\ ,111(1 (CM. (CI esleulay's -nui,,nn;"" %.ould hdebottle all (IA% 1(n1C t \\ hen queHed About het !mine,, renhek

dhh' \II` ( laughed and aul, "ly,111. I dunk the\illtnn;111 ,en, [lung kN hettef than 111,11 ,t()111,n h tube' \lim.

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1,111('011,,1\ 11,1(1 111.(11 11(.111411. She re( that her (1,un;lile ,nte() \\ hen the If IpIck %%HI' 110111, 11,11 1 1/0(11 11(11srd 11,11 1

10111,..ed hottle.

Feeding from bottle and breast an different oralmotor skills, and low birthweight babies or those oi lessthan 33 weeks gestation who must wait to go to thebreast or who are too fragile to nurse more than once ortwice a day will obviously need additional oral feeds.Interim alternatives to straight gavage or bottle feedsare aYailable and include cup feeding and both finger-t ceding and sucking on a drained breast in combinationwith gavage (Armstrong, 1987; Bull & Barger, 1987;Narayanan, le)89). (In fingerfeeding, the baby sucks onthe mother's finger, to which is taped a tubing con-nected to a syringe or other device filled with milk.)lowever, it appears that multiple individual factors,

such as the flexibility and personality styles of themother and baby, possibly the baby's physical adept-ness, and even the way bottle and breast are introduced,may be more important than the actual numbers of bot-tles offered. The described success of strict "no bottle"policies (Stine, 1990) may have more to do with the sup-portive environment that fosters such an approach thanwith the protocol itself. If the mother assists in the feed-ing plan, participates in her baby's care, uses a supple-mental nursing trainer as necessary, and receives indi-vidual and conscientious support in her nursing efforts,it seems unlikely that even regular bottles will necessar-ily derail breastfeeding.

Barriers to breastfeedingInitial efforts at breastfeeding were discouraging formost mothers interviewed, even though their infantswere generally "healthy" prematures. Screens affordedlittle privacy, the' lack of which, like the constant moni-tor noises and staff activity bothered some (especiallyfirst-time) mothers more than others. Mrs. M.exclaimed, "I just can't relax in the NICU!" She recog-nized that staff "checking" on her nursing effortsintended to be supportive ("Hey, how's it going?"), butshe' felt interrupted and then felt as if she wasn't doingwell enough. Mothers described initial difficulties cen-tering on the baby's mouth size (too small), fragility("he had lots of [oxygen] saturation drops"), andfatiguability ("she licked and nuzzled for -10 secondsand then fell asleep").

The baby's small physical size also necessitated dif-ferent holding techniques ("dancer's hold" to supportthe head) and extra pillows. Blow-by oxygen was notdescribed as a significant interference. Mrs. C. corn-

mented on oxygen by nasal cannula: "Do-able but notgreat. It did inhibit miziling up, but at least I didn'thave to worry about an airway!" Actually, tran';-uta-neous oxygen saturation, minute ventilation, andbreathing patterns arc more optimal vith breast thanbottle feeding (Meier, Igsti), though individual experi-ence's may vary. Iwo inlants had apneas with "suck andswallow" while nursing, one even atter discharge. I lermother, who did mirse fully kand in tact found that herpremature infant learned to latch on more quickly thanher first, full-term infant), dealt with the. situationcalmly: "I took her on. (the breast), patted her back, toldher to breathe., and then she. went back on."

In retrospect, several mothers felt they had expectedtoo much in the. beginning and wished they had beenwarned how long it would take their babies to learn tolatch on a nil really nurse. ihree reported that nursing"clicked" around 37-40 weeks gestation. Mrs. R., whose35 week infant was ultimately able to breastfeed, said,"If only I had known from the beginning that it wouldall come together at 40 weeks! I \vould sob at each feed-ing . . I was so frustrated and angrywhy couldn't Inurse'?"

Sources of supportEach mother noted the need for anticipatory guidance',personal support, and proficient technical help. Mothersin this sample were fortunate to have ample financialresources, available transportation, and intact, support-ive families. Neonatal nurses all treated mothers'breastmilk like "pure gold" (an attitude' which motherscommented on and appreciated), but nurses varied intheir breastfeeding expertise. The nurses who hadbreastfed their own children consistently received the'highest marks from mothers. A lactation consultant andtne stepdown unit staff were' praised by some mothersand panned by others; this points to the role of individ-ual differences and personal factors in the interactionaround as intimate' an endeavor as nursing. Stepdownunit nurses typically were responsible for five or sixpatients; they had little time for the ongoing one-on-oneassistance most nursing mothers needed. A researchnurse (without clinical responsibilities) who was con-ducting a study on babies' physiological responses dur-ing breastfeeding sat through nursings with severalmothers and was mentioned in glowing terms. Physi-cians were not singled out as helpful until after dis-charge: one community pediatrician in particularserved as a significant support for three mothers. Mostmothers sought resources independently and were dis-appointed by the paucity and poor quality of the writ-ten materials available and by the difficulty they experi-enced in, for instance, locating phone numbers for lacta-tion support services they knew existed.

Although it is clearly possible to nurse a prematureinfant successfully, mothers must endure a significantamount of mental and physical hardship that goes well

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buytind %vhat the mother of a term infant normallyencoimters. Once achieved, however, a satisfactorynursing relationship appeared to give each mother anenormous boost in establishing ,1 relationship with herchild. Although this sampk. of mothers from a tertiaryare hospital k unlikely to be representative of all moth-

ers of premature infants, their experiences are nonethe-less instructive. They are survivors, in that nut-sing issupported, but not pi oactivelv encouraged, in the nurs-ery. The individual baby's and mother's personalities,abilities, and relationship a ppec,red to be crucial deter-minants of outcome. Calmness, resilience. determina-tion, good tamily supports, personal maturity, and awillingness to "march to the beat of a different drum-mer" marked the mothers in this group who were ableto nurse. The breastfeeding had to be truly important tosucceed, but it also seems that if nursing came to repre-sent too much ot the "premature experience," it servedas a focus of anxiety, rather than of good feeling (dis-cussion with Donna [Dowling).

Turning points in the nursing relationshipThere are several turning points at which the nursingrelationship can either fly or fail. After the baby's birth,the mother must begin to pump regularly and fre-quently with a heavy-duty electric pump, and mustcontinue to do so for one to three months. Both correcttechnical advice and ongoing empathic personal sup-port are needed throughout this time. Particularly while"breastfeeding" a pump regularly, mothers max' feel-locked out" of cart. and may feel the baby "belongs" tothe nurse and not to them. They may hesitate to requestprivate time with their infant for fear of upsetting thebaby or the nursing schedule. MrS. G. and Mrs. L.'s lac-tation consultant both spoke positively about "kangaroocare" (skin-to-skin contact for mother and baby), whichfacilitates physical closeness to the baby and lets the.mother help with care in a concrete way (Whitelaw,1990; Anderson, 1991). Few nurseries have been able tointegrate this type of care into their daily routines, for avariety oi reasons. However, the potential benefit of"kangaroo care" to 1ooth the mother-child relationshipand to the nursing relationship seems worth exploringand has been documented in a preliminary way(Whitelaw, et al., 1988). If daily skin-to-skin contactbetween the mother and her infant is possible duringthis early phase, the mother's relationship with herinfant can grow, and pumping can remain a means to anend, not become an end in itself.

A second turning point for the nursing relationshipcomes with putting the baby to breast and helping himor her learn to latch on and nurse. This phase seems tolast at least six weeks (34 weeks to term) and demandsendless patience and calm persistence from the mother.'The "three steps forward, two steps backward" natureof the process is limited by the baby's physical maturityand wellbeing. Technical advice (on positioning, etc.) is

28 Rine/July 1995 Zero to Three

helpful, but close personal support and anticipatoryguidance may be even more important.

A third turning point comes when the motherattempts "complete" nursing and discontinues pump-ing and bottles. During and for several days precedingthis process, a "hold" on major and minor medical inter-ventions (such as medication changes, hernia operation,changes in oxygen therapy, etc.) would be helpful, sothat the focus can be, if briefly, on the nursing ratherthan on the infant's medical condition. Cost contain-ment, or the mother's preference, may push this transi-tion to the home setting, though a supervised "romning-in" space within the hospital (e.g., dormitory quarters)is workable if available.

The addition of more nursing staff, more lactationconsultants, and more pro-breastleeding protocols mayor may not be helpful to mothers kvho are trying tonurse their premature infants. Consultants, who tend tohave a short-term relationship with the mother, andnursing staff, Yhose professional responsibility is theinfant's well-being, necessarily provide interventionswhich are more performance-focused and less in tunewith the state of the nursing relationship. If a nursing"doula" were assigned to each hopeful nursing motherat her baby's birth (Shelley Senders, M.D., personalcommunication) longitudinal, individualized personalsupport would be available during these critical times.

The concept of a nursing "doula" is not new or orig-inal; the La Leche League has used this approach withsuccess. Perhaps there are neonatal nurses who havenursed their own children who would have an interestin this role, which involves supporting a person (themother) and a relationship (the nursing). Performanceof this skilled and time-consuming job would need to bereimbursed, and separated in time and space from otherprofessional duties (such as infant care), possibly as partof a staff nursing position. Such a support person needsto know not only breastfeeding in a "hands-on" way,but also premature infants; she "practically needs to bea therapist."

The emotional vulnerability of any postpartummother is compounded for the mothers of prematureinfants, whether or not they want to nurse, by the stressof premature labor and delivery and Iw ongoing realityworries about the baby's condition. Ideally, sorting out,clarifying, and discussing feelings about the baby, thepregnancy and delivery, and the nursing; providingtechnical support and advice; and sitting with themother through multiple nursings would all be part andparcel of the nursing doula position. Although somemay feel this simply describes the job of a good lactationconsultant, few neonatal intensive care units have theresources to fund enough consultants familiar with pre-matures for the number of mothers hoping to nurse,given the amount of time required to forge and main-tain a relationship with each.

Nursing is a relationship, and its support may best be

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accomplished through a relationship. l'hus, longitudi-nal interactive guidam e to mothers may offer an advan-tage over protocols based on specific interventions. Thepotential benefits of "kangaroo care" in promoting themother-child relationship (and hence the mirsing rela-(ionship) seem under-appreciated. Breast teeding even ahealthy premature intant is very difficult, however, andmay not be a reasonable goal for many, or even mostmothers. If those vho do hope to nurse are given guid-ance that bring.s them closer to their infants, a great deal\yin have been achieved. A successful nursing relation-ship is a significant achievement, and may herald a pos-itive and satistying relationship after an e\treinelv dit ti-cult and stressful beginning.

References-kntierson, (. (1991). I. in rem knot\ ledge about skin lo-skin ikongaroid core tor preterm infants lrermatol, 11 216-226Anderson, ( Atkinson s ., and Br an. M.N (1981) Filer* andmacronutrient lontent ot human milk thiring early lactation Frommother,. giving buth prematurely and at term. AmIt. linNutr, ii 2-ros.

26;

Armst 0 mg, I I & 1,-)s7) Itrea,tIceding It iw birthweight babiesances in Kens a. II lumani act. 1. 34-17.

Auerbach, K.G. (19901 Ientia. and sanu..aneous breast pumpingA comparison. IntINtirsStudm 27: 27-255.

Bull, p. and Barger, 1 (19871 Finger reeding with the SNS RentalRoundup, 5 2-3

(.arey, 1) E., Rowe, 1.C., (;oet!, C.A et a! (19871. Growth and phosphorus metabolism in premature infants led human milk, fortitiedhuman milk or special premature formula. Am11)(sChild, 141.

Committee on Nutrition ot the Amen, an Academy of Pediatrits(1977). Nutritional needs 01 low hirthweight infants. Pediatrits, ni

(1reer, F.R. and NE-( ormick, A (1988) Improved bone mineralvationand growth in premature infant,. ted fortified own mother's milk.PediatrResm 1121 961-969.

(1ross, S.j. (1983/ Growth and biochemical response of preterminfants ted human milk or modified infant formula. NEngJMed, 308:237-241.

Gross, S.J , (letter, I. and "Fomarelli, 1,1.M. (1981). Composition ofbreast milk Irorn mothers of preterm infants. Pediatrics, 58: 49(1-493

Gunn, T.R. (19911 Breastfeeding preterm intants. NZMedJ, 103. I 87-

188

R.I., Wheeler, R.E., and Rippetoe, LI. (19931. Calcium andphosphorus supplementation atter initial hospital discharge inbreastfed infants of less than 180(1 grams birthweight. Jpermatol, 13:272-278.

lopkinson, I M., Schanler, R.J , and (lat./a, C. 11988) Milk produt honby mothers of premature infants. Pediatrics, 81: 815-82)).

iunkeler, B., Aebi, C., Minder Ch.E., et al. (1)941 Incidence andduration of breastfeeding of ill newhorns.JPediatrGastroenterolNutr,18: 37-40.

Kashvap, S., Schulze, K.E, Forsyth, M., et .11. (19901. Grois II,. nutrientretention and metabolic response of low birthweight infants It'd sup-plemented and unsupplemented preterm human milk AmIChnNutr.52: 254-252.

Lefebvre, F. and Ducharme, M. (1989). Incidence and duration ot lac-tation and lactatnmal performance among mothers of low birth-weight and term inlants.CanMedAssocl, 140: 11'W-11(A.

1 ti. as. A Gore, NI ,( ic. I I. ii u (19Sli nial on(vetting low Ilirthweight intants Itict ts ot diet (.11 e'arlt grmu thAr.111)ist hild. "19 722 ill

I t . Nlot lc% l . olc I I l't .11 l0,uu lit It dill it pretermbabies and de% elopmental status ip ii km, t Ni, hl its( hild (4 I 70

I

\ aqd breast I it, on tians, utaneoll-.

tu`"l'" Pli'`urc .111li lemPchtlitru- Ill Prclel 011111.9'k "1"1'"16 4 I

\ I . \ 1 and t. .111 \ 1990i hsini;apoierediati 12 I

I 12.

M0.1.111111 II I) I int \I (1 11.11)st11.1 I\ et .11 il9s6( Gloit 01. blo.1101111,-11 status and nuneral metabolism in ert lot. lin (ht. eightinlants o' cit ing fortified preiel m human milk Ip..liatrg.-11,,enterolnutr, 5- 762 767

\ 1611(1,1111a. s. O. and \111.,ke. 119s9( Postnatal tt eight gam 01e\,Itisively brea-ated preterm Atil,on infants 11 kip. ii Pethatr. 1.1141-244

I I lliSt)) I tuition nulk tor low birthx, eight !wantsImmunologt. notrition and thAN pro tical tic hnologies N, talledi.11110pol-tit.). I

Nietert. NI and 'seat at. I (1988) Pracht al aspek ts ,it breast iceding thepremature infant. Permatologv Neonatolog. 12 24 iii

Ramasethu, 1., levaseelan I and Killibakarala C I'. Iropi.alPediatn 15: 241-244

Schanler, N.J. and Oh, IV ( I °NW Composition ot breast m;11., obtainedfrom mothers of premature infants as compared to breast milkobtained !num donoN. Irediatr, 96: 679-81.

Stine, M.1. (19901. Breastfeeding the premature newborn A proto. 01without bottles. Ihumanlact, 6: 167-1711.

Steer, PA., Lucas, A. anti Sincl,ur, (1'4'421. Feeding the low birth-weight infant. In: Sinclair, 1.C. and Bracken, \LB tbds.i FfIcctiveCare ot the Newborn Infant. (-Word: 0\ lord University Press 94-140.

Walker, M. 119921. Breastteeding the prvmatureintant N A At .0( l'sClinical Issues. 1: 520-613

IN'hitelaw, A. (19901. Kangaroo baby care: Just a nice esperience or animportant advance tor preterm infants7 Pediatrics. 83: ),04-60',.

Whitelaw, A., Ileisterkamp, G., Sleath, A., et al. (1988) Skin to skincontact for very low hirthweight mtants and their mothers. Archnis-Child, 53: 1377-1380.

Call for' Manuscripts-

Clinical Child Psychology and Psychiatry, which willbegin publication in January, 1996, will publishpapers between 5000 and 10,000 words in length, aswell as short papers, annotations, commentaries,debates, book reviews, and correspondence. Corre-spondence should be sent to Dr. Bryan Lask, Depart-ment of Psychological Medicine, Great Ormond StreetHospital, Great Ormond Street, London WC1NUK, tel: +44(0) 171 829 8679; fav +44(0) 171 829 8657.Books for review should be sent to Bernadette Wren,Book Review Editor, 177 Brooke Road, l,ondon E58AB, UK.

3 0 Zero to Three June/July 1995 29

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Early Intervention and the NICU HealthProfessional: An Interdisciplinary Training ModelVirginia Wyly, Ph.D. and Jack Allen, NIA

lraining Projet t, '4ate University College at Burial,'lttalo, New 1 ork

my balni hooked up to all those tubes and zetres,lit/lit a'allt to 101(01 her. But the intensive care staff helpedand supported us zohile baby was there. When we finallytook her home Zly telt like IleW parents at last. I thou:.;ht that,al at that medical ami hospital time was over. But at her stymouth WIlow-up. We were told she would need physical ther-aliy.

The nwst diseouraglug thing for waS that one of an/Who was born prematurely did not do as well as the

other twin. When he was born we wen' not even sure if heu'ould make it. Well they hdli came home but not at thesame time, and he continued to be slower than his brother.At I 8 numths his brother said words and walked but he

tio his doctor put us in touch with an early inteiventionlin)gram where he's miw enrolled. No one at the hospital toldIN this might happen.

Every year over 200,000 premature infants are born inthe United States (National Center for Health Statistics,1990). With advances in neonatal care, the survival rateof these infants has dramatically increased. Moreover,iniants of 23 weeks gestational age or weighing lessthan 750 grams are being kept alive routinely. Thesevery fragile babies are at risk for developmental delay.Approximately half of very early, low birthweightinfants will require early intervention services, includ-ing long periods of specialized hospital care in neonatalintensive care units (NICUs) (Bruder & Cole, 1991). Assurvival rates have increased, so too has the incidence ofchronic impairments, physical disabilities and develop-.mental disorders (Long, Artis, & Dobbins, 1993; Hack &Eanaroff, 1993). This serious situation requires our bestefforts in a rapidly changing context.

The increased survival rate of premature infants hasfocussed our attention on the need for and types of ser-vices we provide for these infants and their families. Arewe doing enough for them? Are we engaging the familyearly enough? Are we providing appropriate interdisci-plinary early intervention? Until recently, early inter-vention for infants with disabilities and their familiesbegan sometime after discharge from the NICU. NICUhealth professionals often tend to view discharge as asuccessful end to hospitalization. But families oftenview discharge differently. For many of them, dischargewill in fact be the beginning of a long process that

30 June/July 14,15 Zero to Three

involves ongoing medical and therapy services as vellas a continuing search for earlv intervention serviceslliruder Sz Walker, 199(1: Sabbeth, 1984).

The family experience in the NICUtlunixlit havinN a baby in the hospital tor three months was

the hardest thins; I would ez'tn- exiwrience. I was told thatthere misht be some problems because she was so tiny, Ind Iwas unprepared when she was dia:olosed as hap* cerebralpalsy.

The birth of a premature, fragile infant is stressful forthe family in many ways (Hughes, Mc('ollum, Sheftel,& Sanchez, 1994). Not only is the birth unexpected, butthe infant's potential medical crisis and extended hospi-talization, coupled with the overwhelming NICU envi-ronment, may take a toll on families' energies andres.mrces at a time vhen they most need them (Wyly &Allen, 1990). Furthermore, family routines are disruptedas family members spend time visiting the infant.Because extended family members and friends may notknow what to say or do in response to a prematurebirth, valuable soci;il support may not be available toparents.

Parents often feel out of control while others care fortheir baby in the NICU. Fheir parental role as primarycaregivers is often taken over by professional staff.NICUs that involve families in decisions and encouragefamily members to participate in non-medical caregiv-ing procedures and developmentally supportive com-forting measures for their infant enable and empowerparents in their role as caregivers.

Infants in the NICU who are acutely ill or at devel-opmental risk are likely to require early interventionservices in the NICU and after discharge. But when thesystem of care is fragmented and disorganized, or sim-ply not available, additional stress is placed on familieswho face difficult decisions about obtaining services fora child with an identified disability or at developmentalrisk. Clinicians have suggested that this stress jeopar-dizes the nature of the current and future parent-infantinteractions (Affleck & Tennen, 1991).

Even when infants who graduate from the NIC1.1 arephysically and developmentally normal, the transitionfrom hospital to home can be problematic for families(l'earl, Brown, & Myers, 1990).

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When an infant is discharged from a NICL1, parentsreport feeling helpless and alone (Ensher & Clark, 1994;lanline & Deppe, 1990). When their infant is home, par-

ents report that they lack confidence in their parentingskills for their premature infant (Sheikh, O'Brien, &McCluskev-Fawcott, 1993). In addition, parents mayoften lack definitive information about their infant'sfuture.

Families who expect that once their infant is home,lite will be normal are often shocked and dismayedabout the infant's ongoing medical and developmentalproblems. In tact, some infants may need a variety ofservices that continue well into the elementary schoolyears or beyond (Blackburn, I

To meet the needs of families with preterm infantswith developmental disabilities or who are at risk fordevelopmental delays, NICU health professionals andearly interventionists need to work collaboratively. Thechallenge is to provide family-centered early interven-tion services in the NICU, through discharge, and intransition to community early intervention services.

IDEA and NICU infants born atdevelopmental riskThe Individuals with Disabilities Education Act (IDEA,Part H) responded in part to the situation by makinghospitalized infants and their families eligible for fam-ily-centered developmental services (Dobbins, Bohlig, &Sutphen, 1994; Krehbiel, Munsick-Bruno, & Lowe 1991).This action \vas consistent with current trends in earlyintervention, which identify hospitals as importantsites for early intervention services and family support(Flynn & McCollum, 1989; Gilkerson, 1990; O'Brien &Dale, 1994).

While general consensus on "best practice" empha-sizes parent-professional collaboration and programdesign that recognizes the family as the constant in aninfant's life, (Shelton, Jeppson, & Johnson, 1987), thereality of practice is another matter. In fact, we are a longway from providing a seamless system of family-cen-tered early intervention in the NICU, at discharge, andthrough transition to community early intervention ser-vices.

Despite federal legislation (IDEA, Part ED that identi-fies the hospital as a site for family-centered early inter-vention services, this focus has only recently become atraining priority for NICU health professionals. NICUtraining traditionally has focused on technology, newmedical procedures, and medications rather than onmeeting family needs. That NICU staff are now lookingfor ways to provide systematic training on implement-ing early intervention services within a family-centeredneonatal care model represents a true paradigm shift.

Because early intervention professionals are nowassuming a more central role in preparing families andpremature infants for their discharge from the N1CUand in helping families find and use early intervention

services (Thorp & Mc( ollum, 1988), they need to workmore closely with NICU health professionals to deliverfamily-centered early interventions for at-risk infantsand their families and facilitate transition to communityearly intervention programs (DeSocio & Ensher, 1986;Gilkerson, Gorski, & Panitz, 1990; Thurman, 1991;Zeanah & Jones, 1982). Early intervention professionakneed to learn about premature infant development, theoutcome of medical stressors on the infant, commonproblems of infants in the NICU, procedures and equip-ment used in neonatal intensive care settings, anddevelopmental probl, ms specific to premature intants.They need to increase their awareness of the impact ofthe premature birth on the family system and the longterm outcomes on both family and infant. Finally, inorder to develop an Individualized Family Service PlanUFSP) as mandated Iw Part 11, the infant interventionistneeds to he able to identify ways to help families regaincontrol over their lives while supporting them in access-ing protessional services (Cooper & Kennedy 1989).

Evolution of the NICU Training ProjectSince 1985, with support from the Office of Special Edu-cation and Rehabilitative Services in the Department ofEducation (OSERS), we have developed, validated, anddisseminated the NICU Training Model. Originally, wedesigned this model for neonatal nurses and otherN1CU and pediatric health professionals who serveinfants with disabilities in neonatal intensive care units;we focused our early efforts on the infant and the NICUnurse as caregiver.

In the next stage of our model development, wemoved toward a stronger emphasis on the family andparent-professional relationships. We began to inchideparents of premature infants in our training workshops.As part of that effort, St. Luke's Hospital and WesternHills Early Intervention Center of Sioux City, Iowaasked us to offer a training workshop whose partici-pants would be drawn from the hospital's NICU andthe Western Hills early intervention staff of infant teach-ers, physical, speech and occupational therapists, socialworkers, and a parent advocate. While this mix was out-side our original program's design, the idea was appeal-ing. We tried it.

We found that MICH nurses, teachers, and other earlyintervention professionals were enthusiastic aboutinterdisciplinary training. The opportunity to learnfrom one another and describe the unique skills eachgroup uses was enlightening. Most important, work-shop participants felt that the training would help themprovide improved services for infants and toddlers withdisabilities.

We were excited about the enthusiastic response andthe outcomes from the Sioux City training. So in 1991,when we received a similar request from Buffalo, NewYork for a training workshop including a combinationof NICU-hased related service personnel and early

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--°..

intervention professionals, we tried the adapted N ICUTraining Model again.

Our follow-up of these training workshops showedthat both NICU and early intervention personnel usedwhat they had learned in the training. NICU profes-sionals told us they gained an appreciation of theimportance of family-centered NICU care and the needto individualize family services starting in the NICU.The early interventionists learned what infants and fam-ilies experience in the NICU and better understood theirspecial needs. At the training's conclusion both groupsdeveloped (and later implemented) a formal plan forsharing information and maintaining contact.

We searched the literature and talked with colleaguesaround the country but found no comparable trainingprogram. We did, however, find that others were awareof the need we first recognized in Sioux City. Cooperand Kennedy (1989) wrote:

Adzunces in neonatal intelisiz'e cii re hatv dramaticallyincreased the survival rate of infants born prematurely orwith medical complications. Fixtires show that the numberof ;womanl intensive care units (N1CUs) in the UnitedStates increased from 448 to 594 in 1985 (Hospital Statis-tics, 1987). Increases in infant survival rates, coupled withthe enactment of (P.L.) 99-457, have created a necessity forprofessionals involved with infant service delivery to haveup-to-date knowfrdge concenting neonatal intetisive

care...Consequently, the infant interventionist must be wellacquainted with the treatment appnwhes utilized in theWU.

Beginning in 1992-igain with funding from OSERS,we modified our initial model by including hospital-based and community-based early interventionists inour training population. Whenever possible, parents ofNICU infants who require early intervention serviceswere also included as training participants. We contin-ued our family-centered focus and added informationabout Part II, IFSPs, discharge planning, and transitionto community-based services to our curriculum. For thepast three years, we have refined the model and testedit with NICU and early intervention, professionals at 10hospitals throughout the country.

The results have been overwhelmingly positive. Notonly did the 200 participants positively evaluate thetraining model but our follow-up data showed that sig-nificant changes resulted from the training. The follow-ing are several typical participant comments about ourjoint training design:

It was very interesting to "try on" others' shoes.Continue to "mix" professions; it vas very effec-

tive.Keep using small groups, role plays, case studies,

videos, and combining NICU professionals and educa-tors.

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The group sharing enhanced the realness and open-ness in dealing with family issues.

The NICU training modelThe NICL; training model addresses: ) team collabora-tion for delivery of family-centered neonatal care ser-vices; 2) the high-risk infant experience in the N ICU andthrough transit;..on; and 3) the family experience in theNICU and through transition to community early inter-vention services. Specifically, the training model isdesigned to train N ICU health professionals and earlyinterventionists to:

Work collaboratively as a team with families andinfants;

Use individualized assessments ot infants and fam-ilies;

Employ developmentally supportive care withinfants;

Assist families in supportive infant interventions;Recognize and appropriately respond to parent

emotional states;('reate supportive environments for infants and

families in the NICU and beyond;Implement family-center. i neonatal care;Provide continuity of intervention services from

hospital to home;Develop services consistent with Part H, including

IFSPs and transition planning.The training is designed to bring about cognitive,

affective, and behavioral change. Our past trainingexperience has shown us that the training model musthave a strong philosophical base, employ interactivelearning methods, and teach participants the curricu-him content.

Participants are selected based on experience, com-mitment to family-centered neonatal care, and theiragreement to facilitate family-centered care practice insupport of families with infants at risk for developrnen-tal disabilities. The participant mix varies, dependingon the site and area needs. A typical group of partici-pants might include neonatal nurses, neonatologists,physical therapists, occupational therapists, respiratorytherapists, early interventionists, hospital-based follow-up personnel, social workers, psychologists, speech-lan-guage pathologists, and parents of N1CU infants.Because of the interactive nature of the training, welimit groups to 25 participants.

We choose hospital training sites based on the popu-lation they serve, their commitment to implement PartH of IDEA within the context of family-centered care,their links to early intervention services, and their will-ingness to incorporate the elements of the NICU Train-ing Model into the institution's ongoing inseryice train-ing program.

Training is conducted over two days and involvesadult learning processes, small group designs, videoanalyses, demonstrations, simulations, and role plays.

34

We use follow-u- evaluations with participants and fam-ilies to assess how well training is translated into prac-tice.

training consists ot I ) discussion ot the content mate-rial studied by participants prior to training; 2) provid-ing additional content information to participants; 3)demonstrati(1ns of developmental care practices withinfants, effective communication strategies, and indi-vidualized assessments; 4) role-play and case studyanalyses of prolessional-prolessional communication,parent-professional communication and family inter-ventions; 5) focus group discussion on team buildingand ways to implement family-centered care; (1) struc-turing intervention strategies; 7) analyses of videotapedinfant behaviors and states, professional-parent COM-

munication, and infant interventions; 8) small grou pproblem solving; c)) practice in specific interventiontechniques in the NICU, writing 1FSPs in the NICL, anddrafting discharge % transition plans; and 10) using prob-lem solving and communication in collaborative teamefforts.

The training is designed to maximize participants'learning and to facilitate team collaboration for family-centered care. Thus the two days of training are highlyinteractive and afford opportunities for NICU and earlyintervention professionals to learn from one another.Several examples of training activities will illustratehow we facilitate this process.

Early in the training workshop, the NICU healthprofessionals form a circle to discuss some of the workstressors associated with caring for premature infantsand Vieir families in the NICU, the stressors' impacton t' (em, and ways they address the problems associ-ated with the stressors. While they talk, the early inter-ventionists listen from an outer circle. This is called afishbowl design. The same type of group discussion isthen conducted with the early intervention group inthe inner circle. Although the fishbowl lasts only 30minutes, it allows each professional group to quicklylearn what the other does, as well as to identify somepertinent issues and problem-solving strategies con-cerned with providing family-centered early interven-tion services for infants and their families.

Effective communication is a key. theme throughoutthe training. Families have identified communicationproblems with professionals as a potential barrier tosuccessful implementation of family-centered neonatalearly intervention. We have written role plays based onreal family-professional situations. These scenarios arethen given to small groups of participants, who areasked to select players and plan how they will play thescene. One role play depicts parents visiting theirinfant in the NICU where they are told that their babyis ready to go home later that day. The parents do notfeel ready for the discharge, but a NICU staff memberassures them that they are. In another role play, a par-ent whose infant has been discharged from the NICU

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is visited in her honw by a hospital-based early inter-vention follow-up team who inform her that herinfant will need early intervention services. Themother insists that her baby is fine, since he was wellenough to be discharged from the NICU.

Role plays are used as a vehicle for training partici-pants to "feel" what it like to be a parent who is negoti-ating the system. Since each role play contains a conflictsituation, they also offer participants the opportunity topractice ways to deal with conflicts as well as supportfamilies. While the role plays are fun and serve to ener-gize the group, the discussion that follows touches onmany salient issues concerned with alternate ways ofmanaging parent-professional and professional-profes-sional communication problems, interdisciplinaryteamwork, and sensitivity to families. Interestingly, atthe outset of the workshop, participants will oftenremark that they don't like role playing, but at the work-shop's conclusion, they will identify role plays as one ofthe most effective training tools in the workshop.

Another training design used to link the expertise ofN ICU and early intervention professionals is a smallgroup task of drafting an individualized developmentalcare plan for a hospitalized infant (Cole, Begish-Duddy,Judas, & lorgensen, 1990).

The one-page plan contains several simple comple-tion statements about the infant e.g., My name is

. I can . I get stressed by . You can pro-mote my well-being by . Each group completesthe plan, based on a description of the hospitalizedinfant presented by a group member who is a NICUhealth professional. Each group then presents its plan,followed by a large-group discussion directed at waysto involve families in writing the plan, update it as theinfant progresses, incorporate it into an IFSP, and useit as a communication tool.with other professionals.

Towards the end of the training workshop, a focusgroup is used to address the question, "What do wehave to change in our practice to reach a seamless sys-tem of service delivery for families and infants?" It is inthis small group format that NICU health professionals,hospital-based and community-based early interven-tionists, and parents identify what changes need to beimplemented in their programs and how to do it. Initialplans for collaborative teamwork are identified at theworkshop's conclusion.

Effecting change

The real difficulty in changing the course of any enterpriselies not in developing new ideas but escaping front old Ones.lohn Maynard Kevne,.

The goal of training is change shifting paradigms,breaking old habits, and trying new behaviors. A two-day joint training experience provides opportunities forNICU health professionals and early interventionists toshare their experiences and identify ways to change

t heir current practices in order to achieve greater c(illab-oration. During the training process we emphasize thatfor change to occur, training participants must not onlywork individually or in teams to model the desiredbehaviors in their own work settings, but also work sys-tematically as a gnmp to implement programmaticchanges. Further, they must share the training contentwith others in the NICU or early intervention programto promote ownership of the ideas and facilitate supportfor change. Follow-up is a key to successful training.

What changes do training participants achieve? Inour follow-up evaluations, participants tell us that theyhave a greater awareness and sensitivity to the needs ofNICU infants and their families. A parent of prematureinfant who is also a special education teas-her com-mented:

Being a parent who suruh,ed the MCI I experience, I lookback and realize how much Imwe could /tape been dont. tocomfort my baby and allezwte the qr(-.s put upon our family. As a special educatimi infant teacher, I found the IINcw:-shut of strategies for helping families cope with their experi-ences inzwhiable in dealing the enwtional baggage /kir-cuts often carry for years after their NICLI exiwrielletN. TheNICLI Training Project has wminded Mt' to keep our inter-ventions baby-led and (.11ml/1j-64-used. tc. Scl,ult/. rer.onalcommunkatitm, December, I'M )

Participants report specific changes in implementingfamily-centered early intervention, staff education-mdlinking the resources and expertise of N ICU and earlyintervention professionals. The changes made reflect thespecific needs of the participants from each site.NICU staff Yho participated in training have at the var-ious sites have:

created a developmental task forceformed a Family-Centered Care teamprovided educational seminars/inservices on

developmental care, family support and early interven-tion

established a Family Advisory Councilwritten a family support grantmodeled and mentored appropriate developmental

interventions with staff and familiesincluded physical and occupatIonal therapists as

teaM members in planning developmental careestablished a staff informational network e.g, bul-

letin boards, newsletters, videosestablished developmental rounds that include

early interventionistsstructured a more welcoming climate for families in

the NICU.Early intervention training participants report the fol-lowing post-training activities:

hosted one-day practica in the El program forN1CU staff

early intervention staff spent a day in the N1CUconducted inseryices with parents of premature

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infants as speakers 01, family needsestablished a parent resource library to assist tran-

sition trom the NICU to early interventionconducted in--,erviie Ira inings in the NICL on

long-term developmental problem-, in-i!"(..-..ment, andfamily everience in transition trom the NICU

identified liaistMS between c(mimunitv early inter-vention and the NICL)

drafted transition plans with N ICU stall.

ConclusionAS -iervice providers and families look tor ways toimprove the life circumstances ot the high-risk infant inthe NM..., systematic efforts are being made to trainpersonnel cooperatively to meet the challenges of thisnew field (Vanden Berg, 1q87). A comprehensive, coordi-nated multidisciplinary, interagency approach to ,,erv-ing infants and their families requires cooperationbetween hospitals and early intervention services.

For the past 10 VedN, we have developed andadapted our training program to meet the changingneeds of professionals who work with prematureinfants and their families. The training we have con-ducted in sites across the country has led to numenmschanges in both NICUs and early intervention pro-grams. While developmental care in the NICU and fam-ily-centered early intervention in the community are byno means universally available, we do see a commit-ment to better serve fragile babies and their families.

ReferencesAttlee's, Sr. Ionnen, I I (1991i. I he effects ot newbiirn intensiiare on parents' psychological well-being. Children's 1 lealth Care,

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Blackburn, S. (1995). Problems ot preterm 'Wank alter discharge.lournal 01 Obstetric, (;vnei ologii Ind Neonatal Nursing, 24, 4. -49

Bruder, NI. B , & Walker, L. I990) I )ischarge planning: Ilospital iiihome transition tor infants topics in Early Childhood Special Edu-cation. '4, 2642

limiter, N1 B., & Cole, NI. (19911 Critital element, of tran,dion fromNICL to home and tollow-up Children's I tealth ( are, 2)) , 40-49.

Colo, Begish-Duddy, A ludas, M. I & lorgensen, K. M. Woo)( hanging the NICU envininment: The Boston I .ity I lospital model.Neonatal Network, 9(2), 15-22.

Cooper, C. S., & Kennedy, R. D. 984). A 11 ll pdalelt protessnmalsworking with neonates at risk. Topics in Early Childhood SpecialEducation, 9, 32-50.

DeSocio, D. A , & Ensher, G. L. (1980. Intervening in intensive carenurseries. In hnsher & D. A. Clark, Newborns at risk: Medicalcare and psychosocial intervention. I90-214. Rockville, MD.: AspenPublishing Co.

Dobbins, N., Bohling, C., & Sutphen, I. (19941. Partners in growth:Impk.menting family-centered changi's in the neonatal intensive careunit. Children's Health Care, 23, 115-116.

hnsher, G. & Clark, D. A. (1994). Newborn.- at risk. Rockville,MD: Aspen Publishing Co

Flynn, I. I.., & McCollum, I. A. 098'0. Support systems: Strategic'sand implications tot hospitalized newborns and families. journal ofEarly Intervention, 13, 173-182

alker,on, I (1990) t nder,tanding in,titutional tom honing -at I, A

11,0111% tor ho,pitai and earl mien. ention .,11aboration I Want-.

and \ioung hildren, 2. 22-30

calkerson. I .. (mrski. l' A & l' (1990i 1 lo,pital ha,ed inteiention lot preterni infant-, and their In s I Nlei,e1, &

shonkolt ii i, t, landhools ea, lc hildhoo,1 Intel ention (pp 4-1-,Ne lork: Cambodge t eisitc Press

11a, k. NI 6; I anarotl..A '19" 1 I Mk ome, ot extremokmtant-. A perinatal dilemma Nen I ngland lout nal (it led!, me1.24. 1049

lanline. NI 1%, &I Derrc. I Ig`hom )1,11,IigIng the premature nuantannly 1,,ue, and implit anon. hi, inter\ ention Lark

Childhood Special anon. 1; 2',

Itiv.ht--. \1. NlcCollum. I . WI. , 11,1411 I loparent, cope waft the ecperiem ot neonatal inten,ne ,are hit

dren., I lealth ("are, 21. 1 14

knish. k-Bruno. & I ote. 1.1-1 (1991i k I !Mom,

plan hildr,n', 1 lealth i, are. 20. 26.';';

important ,ite for tannly-tentered eark, intervention. lopit in kirkChildhood Special 1.s.dut ation, 11, 106- IN,

National Center tor 1 lealth Stati,tic, (1991) Advaine report ot finalnatality .tatktics for 1988. Nlonthly Mil Statism, Report, 1914)

O'Brien. NI k InI1 .11 I I, .uS" Ice, in Owneonatal inten,ave care Unit: A revieci ot rowan h. journal ot Farlt

Inter\ enhon. 18, 79-90.

Pearl, 1.. Is, Brown, W., & Myer., K S. ( transition from neona-tal intensive care unit. Infants and lilting ('luldn'n. 4)-50

',abheth, A. t 910). Marital adjustments to chronic hildhoodA critique of the literature. l'ediatru.s. 71 762-767.

Sheikh, I.., O'Brien, NI., Sr McCluskey-Eawcett, K. I I 99;1 Parentpreparation tor the NICU-to-home transition: Statt and parent perceptions. Children's 1 lealth Care, 22. 227-219.

Shelton. T. 1 Ieppson, F. S., & lohnson, B 11. (19571. l'amilv-cen-tered care tor children with special health care needs Washington. 1).C.: Ascociation for the Care ot Children's I lealt h.

l'horp, E. K., & McCollum, I. A. (1988). Ilet Ming the inlonu sredal-i/ation in early childhood special education. In I. B. lordon, I I (

lagher, R I.. I lutinger. & NI. B. Karnes (Eds.), hark' childhood ..peoaleducation: Birth to three. Reston. Virginia ( 'mini it E.ceptionalChildren.

Thurman, S. K. (19911 Parameters tor establishing tamilc i Pntered

neonatal intensive care service, Children', Ilealth ( are 20. 14.1ii

VandenBerg, K. Ii L/87). Re,rsing lradilitmal model- An ludo idu-alized approach to developmental interventions in the mtensic carenursery. Neonatal Network. 3 (5), 32-38.

Wyly, M. V., & Allen, J. (1990). Stress and coping in the neonatalintensive care unit. Tucson, Arirona: Therapy Skill Builders

Zeanah, C. (-I., Sr Jones, J. 1). (1982). Maintaining the jlarent-stattalliance in the intensive care nursery. Psychosomatiis, 23, I 218-12',1

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Letters to the Editor:

For the past tour yeaN, I have coordinated an earlyintervention program in rural Alaska. The progralllcovers an area the si/e ot several states-40-plus com-munities spread over the interior of Alaska. Only asmall portion of these communities is accessed by asystem of roads; the rest is accessed only by air or boat.The challenges faced by all rural providers are com-pounded by extreme weather, incredible distances,multiple cultures, lack of -modern.' conveniences, anda critical shortage of tunds. kVeather can range from/ero to 80 degrees below /ero in the winter, with snowfrom September to May. Since most travel is done insmall planes (two to 13 seats) to villages without con-trol towers or landing lights, it becomes a major unden-taking to make monthly visits to families. Communi-ties range from one- to four-hours' travel cime by aireach way, to eight hours by car on the road system.Planes are unheated in the ivinter; roads must beplowed continuously in the winter and are usuallyunder construction in the summer. People with med-ical emergencies are usually flown fmm their village toFairbanks, with the time between placing the call formedevac to arrival in Fairbanks ranging from four to12 hoursweather permitting.

The families we serve are from varied ethnic andsocio-economic backgrounds, including Athabaskan!ndian (speaking several dialects), lnupit and YupikEskimo, Caucasian, and African-American. A majorityof the families live a subsistence lifestyle (dependenton trapping, hunting, and gathering) and receive someassistance either from the state or trit--31 government.I tomes are usually -,-ithout running water or sewagedisposal systems. All communities have electricity andphone service, but both are erratic at times.

These factors all combine to make our service deliv-ery different from programs described in theApril/May, 1995 issue of Zero to Three on working withinfants, toddlers, and their families in rural areas andsmall towns. The article by Sue Forest on challengesand strategies is probably accurate with respect to typi-cal rural areas; however, it does not address the chal-lenges faced in remote rural areas such as Alaska.I tome visits here are, unfortunately, scheduled everyfour to six weeks with families, due to the enormousdistances and costs of travel. Teleconferencing withfamilies is limited, since not all families have phones oreasy access to phones. In addition, cultural differencesmake non-face-to-face contacts limited in value, sinceseveral cultures rely on body language to completecommunication. Connecting other professionals torural remote areas involves extra challenges, for sev-eral reasons. Therapists who are willing to give up

valuable (and expensive) treatment time III town tojourney to remote sites to do evaluations and,'or ther-apy are extremely rare. A critical shortage ot physical,occupational, and speck h therapists means that lami-lies are tortunate it a therapist accompanies the earlyinterventionist once or twice a year. Alaska has astatewide travel team ot therapists who assist remoteprograms, but they are so overloaded that two trips toeach program are the maximum available.

he early interventionist becomes the main point ofcontact for families, providing support, guidance,activities, contact with the occasional therapist, andvolumes of information on eerv topic from toilettraining to specific therapy exercises. We work asclosely with other professionals as possible, but pro-grams must be designed which the family or other vil-lage supports can follow with success. Trips to townfor therapy sessions are close to impossible for mostfamilies, due to distance, weather, and cost. Profes-sional isolation is the greatest drawback to serving thisarea; we can often connect only 1w phone, except torone convention per year. Ideas are shared through asupport network of others who are doing the Sametype of service with equal challenges. We read journalssuch as /cro to Three to keep current with new ideasand strategies in the field.

Providing early intervention services to families inremote rural areas increases the challenges, but it alsoallows us to participate in family life in ways whichother providers seldom achieve. It is not unusual forour families to include us in village gatherings to cele-brate birthdays, anniversaries, funerals, or other spe-cial occasions. We have been invited to fish camps,boat rides, snow machine treks, and carni, als in thespring. We are given unique glimpses into a pattern oflife that is very different from our past experiences ortraining, since most providers are from the lower 48.

Veleta MurlihtiCoordinator/Early hitervention !-TecialistInfant Learning Programlanana Chiefs Conference, Inc.FairbanksAlaska

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I really enjoyed the latest issue of /cro to Ihree andread it with a per,onal interest. I have two daughters;my youngest was born with spina bifida and hydro-cePha Itt-;. I also work as an early interventiimist. InI'm() we moved to North Central Washington tromPortland, Oreg(m. We lived there till July, '94, when wemoved to Southeastern Minnesota. I am very inter-ested in policy implementation and service delivery inrural areas. I read the articles eagerly and could relateto much of what the authors were describing.

At ter moving several times and becoming interestedin "rural living,- I wanted to know what the definitionof a rural area was. 13.D. Rios states (19)*) that devel-oping a definition has been a conceptual problem foreducators, legislators, demographers, sociologists, andothers for some time. Even though much of the mid-west is rural (I grew up on a farm in Wisconsin), Istarted making a distincticm behveen rural andremote/rural. In Sue Forest's article, the termremote/rural is used in the first sentence. Some of thedifferences as I see them involve access to local ser-vices. While living in North Central Washington I hadto drive many hours over mountain passes to get tomy daughter's medical specialists. We had much thesame issu:s as were mentioned in the articles: difficul-ties in recruiting and retaining qualified personnel, nopublic transportation, scarcity of services or having totravel great distances to obtain them, few resourcesand supports. At the time we lived there, we had awonderful early intervention program. Our birth-to-three program was home-based; one of the compo-nents of our childfind was "taking our show on theroad." Our county was x.ery large, and many families:lid not have transportation. Our staff traveled to daycare centers and clinics and did screenings. We also fol-lowed families through the mail with our Follow UpNetwork (FUN). This program would have never beenavailable in this remote/rural area if a few had not hadthe vision or dedication to make it happen. This is alsoapparent in reading the articles in the April/Max' issueof Zen) to Paw.

The most important factor in services or policyimplementation in any area is people. The visions, thededication, and attitudes. This has always been myexperience, as both parent And professional. Thebeliefs, dreams, and dedication of people make ser-vices possible. This is true at both state and local lev-els. I truly appreciate those peopleprofessionally,because I am able to work in the profession I trulylove, and personally, because they have made a differ-ence in my daughter's life.

Tewsil VVOngWinona, Minnesota

I) (19Sx) "Rural ,\ ( t'iitt?) bcvond I )vfmilion' Rvroi I "0 i I X )

R( -85-))M Mralingion. ( Ice ol Wu, ationol Ito.eatt h anti Impiovment(I I:1( I ),huniont Iti.ptodu, bon e \ I I) 2%520)

Publications

Developmental Interventions: Premature Infants andTheir Families (199- \i, virginia 1VvIv 0-;ing,tilar PublishingGroup, Ink ., 41st treet. san Diego, CA 92107,11q7)

This x.olume, focusing on what can be done to enha Ikethe developn, nt of high-risk preterm neonates, Is

designed to demystify the -earliest of interventions.-Drawing on empirical research, theory, and application,Wyly and colleagues lack Allen and Janet Wilson pre-sent case histories, suggestions for neonatal intensivecare unit environmental interventions, and specificcomforting techniques and strategies for caregiver andfamily coping. Thchniques outlined include multimodal.sensory stimulation, state mddulation, neuromotorinterventions, and stress alleviation Family issues areaddressed in chapters on family-preterm infant interac-tions, family reactions to premature birth, and family-centered care in the NICU.

Low Birth Weight (The Into,, of Chihhen, NIonlier I.Spring, I 99.5)-Richard E. Behrman, Editor (The David andLucile Packard Foundation, 300 Second Street, Suite 102, I osAltos, California 94(122) Free by request.

This issue of The Future of Children focuses on the "seem-ingly intractable" problem of preventing death and dis-ability in infants as a result of being born too soon at lowbirth weight. The 14 essays in this volume summarizeknowledge and experience about the causes ot low birthweight, prevention efforts, and the care of babies bornprematurely. Jeffrey Horbar and Jerold Lucey review theeffectiveness of technologies used as part of neonatalintensive care and discuss several new approaches toevaluating neonatal technology. Marie McCormick andDouglas Richardson discuss the development of region-alized NICU services and the current trends towardderegionalization. Maureen Flack, Nancy Klein, and H.Gerry Taylor prcvide a critical review of the physical,neurosensory, intelligence, behavioral, school perfor-mance, and health outcomes of very iow birth weightinfants. Jon Tyson analyzes ethical quu ,tions faced byhealth care providers, administrators, and parents NYhocare for the extremely low birth weight infant.

Neonatal Nursing lican n,....,-.,oreen Crawford and MarvkeMorris, editors (Chapman esz 11,111, distributed in the U. bySingular Publishing Group, Inc., 4284 41st Street, San Diego,CA 92105-1197) $42.99.

Written by senior clinical nurses at the Neonatal Nurs-ing Unit, Leicester Royal Infirmary, UK, for neonataland pediatric nurses, midwives, and their students, thistext focuses on nursing actions and responsibilities incare of the sick newborn, providing relevant researchfindings, pathology, anatomy, physiology, and clinicalapplications. In an effort to offer a holistic overview of

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int a nt care, the volume addresses ethics, continuing carein the community, intranatal care, statistics, pharmoki-netics, a nd e planations of terminology.

The Best Intentions: Unintended Pregnancy and theWell-Being of Children and Families (1995)-SarahOn/Wn and I l.on Ei,,enberg, editors (National Atademv Press,2101 Constitution Avenue, VW., 1.ockbox 28's, Washington,I X 200v--,1529 k15. -,1.1prIv*ot copies of Summary avoil-able tree of charge front Division of I lealth Promotion andDiseasc Prevention. Institute of Medicine, 2101 ConstitutionAvenm., N. W., Washington, IX. 2041S.

Experts estimate that 57 percent of all U.S. pregnanciesare unintended, either mistimed or unwanted alto-gether. Not just a problem ot teenagers or unmarried,poor, or minority women, unintended pregnancy affel tsall segments of society. In this report, the I :1-member(ommittee on Unintended Pregnancy of the Institute ofNledicine describes the number and comple\ity of fac-tors resulting in unintended pregnancy and its conse-quences. The committee urges that the nation adopt anew social norm: That all pregnancies should beintendedthat is, they should be consciously andclearly desired at the time of conception. They advocatea campaign to reduce unintended pregnancy, aiming: 1)to improve knowledge about contraception and repro-ductive health; 2) increase access to contraception; 3)e\ plicitly address the major roles that feelings, attitudes,and motivation play in using contraception and avoid-ing unintended pregnancy; 4) Leve.-1 1op and scrupulouslyevaluate a variety of local programs to reduce unin-tended pregnancy; and 5) stimulate research to a)develop new contraceptive methods for both womenand men; b) answer important questions about how bestto organize contraceptive services; and c) understandmore fully the determinants and antecedents of unin-tended pregnancy.

Cost, Quality, and Child Outcomes in Child Care Cen-ters, Public Report (1995)-Cost, Quality & Child OutcomesStudy Team (Cost and Quality Study, Campus Bo\ 159,Box 173364, University of Colorado at Denver, Denver ('O80217-3364) Executive Summary (2)) pages) 58.00; PublicReport (85 pages) 1515.00; Technical Report (400 pages) $40.00.

In 1993 and 1994, researchers from the University ofColorado at Denver, the University of California at LosAngeles, the University of North Carolina at ChapelHill, and Yale University collected and analyzed datafrom 401 child care centers and 826 preschool-aged chil-dren attending a subsample of these centers. Study find-ings, reported in the general media in January, 1995 andelaborated in the study's Public Report, revealed thatchild care at most centers in the United States is poor tomediocre, with care in 40 percent of the infant and tod-dler rooms observed to endanger children's health andsafety. Only one in 12 infant and toddler rooms werejudged to he providing developmentally appropriatecare. The quality of child care was primarily related tohigher staff-to-child ratios, staff education, and admin-

istra tors' e\ perience. In addition, teachers' wages, theireducation and speciali/ed training were the mostimporta nt characteristics tha t distinguish poor,medioi re, and good-quality centers. The study's techni-cal Report, meant as ,1 reference work for professionalsin the held ot early childhood education, economists,and researchers, describes study objectives and re,,earchquestions, ot fers descriptive comparisons of the centers,analvies re,,ults, and presents major findings and rec-ommendations; IOU tables are included.

Two Generation l'rograms for Families in Poverty: ANew Intervention Strategy (1995)-Sheila Smith. FditorAble. Publishing Corporation, 155 Chestnut Street, Nor-

wood, New lersev 07648

This volume, part of the Advances in Applied Develop-mental Psychology series, is designed to provide a com-prehensive understanding of a two-generation interven-tion strategyin api.roach that integrates two kinds offamily supports: I) self-sufficiency services designed toimprove the parent's education level, vocational skills,and employment status; and 2) child development ser-vices that may include preventive health care, parentingeducationind high quality child care or early child-hood education. Chapters examine the theory underly-ing this approach, the challenge and opportunities prac-titioners face in attempting to implement two-genera-tion programs, and the complexity and importance ofresearch that can determine the effectiveness of specificmodels. Contributors include, among others, ByronEgeland, Sarah M. Greene, Robert Halpern, Toby Herr,Wade E I forn, Faith Lamb Parker, Chaya Piotrkowski,Jane Quint, Craig T. Ramey, Sharon Landesman Ramey,Gloria G. Rodriguez, Sheila Smith, and Martha Zaslow.

Preparing Collaborative Leaders: A Facilitator's Guide(1994)-Wendv Russell (The Institute for Educational Leader-ship, Inc., MI Connecticut Avenue, N.W., Suite 310, Wash-ington, D.C. 20030 $95.00.

This guide is designed to offer support for the trainingand development of leaders who are open to thinkingabout and solving problems in new and collaborativeways. Activities and exercises in the Guide are designedto tap participants' prior knowledge first, then chal-lenge (and perhaps replace) their views and operatingassumptions. It encourages participants to examineopportunities for change within their own organization.Fifteen units are designed to: 1) draw on each partici-pant's work experience; 2) engage learners through a%'ariety of training approaches; 3) build on groupprocess and team development skills; and 4) use currentresearch and resources on collaboration and leadership.Assuming a I 2-month program to train collaborativeleaders, the guide outlines meetings in three phases,"getting together," "mastering the essentials," and"building change" (with a specific collaborative effort inmind.)

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Videotapes

Caring for Premature Babies (1994). Produted b\11'Pl: Productions and distributed by Films tor the

lumanities & Sciences, PO liox 20-53, Princeton, NI 08543-203, tel Si)t)/27,--R12h. 311 min.

In a news report format, this video explores the risks forpre-term labor, the possible steps to postpone it, and theproblems of the premature infant. Foremost among theinfant's problems are underdeveloped lungs, but pre-maturity affects all body systems and puts the infant atrisk for learning disabilities, cerebral palsy, and eye andear impairment. The program covers some of the tooknow available io save young lives--tools that can also.cause damage. Some of the ethical issues involved inhelping 'ery low birth-weight babies to survive are dis-cussed.

YEAR ONE (1993) . Produced at The George WashingtonUniversity and distributed by Learner Managed Designs, POBox 3067, 1 awrence, KS hh04h, tel: (913) S42-908S.

The YEAR ONE materials were designed as a resourcetor health and education professionals to help them pro-vide an effective and responsive continuum of care forinfants with special needs and their families. Each mod-ule contains a videotape and a resource guide.

The Family I yericiwe. 45 min. $249. This tape, in twoparts, documents the emotional experiences of familieswhose infants are at risk for developmental disabilitiesdue to prematurity or other conditions. Part I addressesthe experiences of families from pregnancy throughbirth and early months of life and the decisions facingthem when their infant requires a lengthy hospitaliza-tion. The role of professionals in assisting families withtheir decisions is examined. Part II looks at hospitalpractices that support families in taking over the care oftheir infants and integrating them into their family life.

The Neonatal Ixperience. 45 min. $249. Designed to beused in preservice or inservice training of serviceproviders in community-based early intervention pro-grams, this two-part video illustrates the major medicalcomplications of infants who are premature or at risk fordevelopmental disabilities. Topics include NICU termi-nology; systemic conditions such as jaundice, respira-tory conditions, cardiac conditions, and central nervoussystem concerns; deficits of vision and hearing;and pos-sible complications associated with feeding and growth.

The Community Experhnice. 30 min. $198. When an infantborn prematurely or at risk for disabilities is medicallystable and ready for hospital discharge, the need forongoing services remains. This video presents informa-tion on developmental outcomes, assessments and com-munity resources that will enable pediatricians or care-

givers to counsel patents and make informed andappropriate referrals. Interviews with physicians, thera-pists, developmental specialists, educational profession-als and parents are featured.

The NICU and Pediatric Video Series (1990). l'iodu,ed12\ ludith I. Porkorni, Ph.l ). at the Ceorgetown UniversityChild Development Center and the Georgetown Universityhvision of Neonatology and ditributed by Polvrncrph

11S South Street, Boston, MA 02111, te1:800.'370-34-4,

These videos translate researt. 11 on developwent ot hos-pitali/ed preemies, infants and older children into spe-cific ways of promoting emotional and physical health.Study guides, bibliographies and pre/post tests areincluded.

The NICLI Video Series includes the following:

Preemie Development: An Overview. 14 min. $175. Pro-vides a comprehensive review of the general sequenceof preemie development early preemie, developingpreemie and older preemie. The various stages of pre-emie development are outlined including the behav-ioral states, physiologic and motor responses and atten-tional reactions of preemies.

The Preemie and the NICLI Environment. I(-) min. $175.Explains the variety of ways in which preemies react tostress and illustrates typical self-comforting behaviors.Also described are ways in which staff can reduce exces-sive stimulation that all too frequently occurs in theNICU and how they can help facilitate a preemie's self-comforting.

Positioning and Handling the High Risk Infant. 15 min.$175. Explains the importance of proper positioning andhandling and illustrates how positioning and handlingcan be used to normalize a preemie's muscle tone andmovement patterns.

Tile Growing Preemie. 12 min. $175. As the preemieresponds to care and develops in the NICU, ways ofpromoting sleep, encouraging alert times, reducingfussiness and facilitating feeding in the growing pre-emie are both explained and demonstrated.

Helping Families in the Special Care Nursery. 14 min. $175.Reassuring parents and encouraging their involvementin the care of their infant is an important part of a NICUnurse's role. This video instructs nurses how to identifyparent's feelings and coping strategies and ways inwhich staff can help parents to adjust to the NICU expe-rience.

Parenting the Acutely ill Intnnt. 14 min. $175. This videois intended tor showing to parents whose infants haverecently been admitted to the N1CU as a wav of facili-tating their adjustment to this potentially frighteningenvironment. Explaining what happens in the NICLIond presenting common feelings helps parents to better

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understand and care for their infant's needs. Parents areencouraged to becohie actively involved in their infant'scare.

Pmentmx the C;rowmx Preemie. 0 min. $175. After parent,have adjusted to the environment ot care in the NICLthey need to be prepared for playing a more active rolein the preparation for taking their infant home. Thisvideo glYi", parents an overview of preemie develop-ment and encourages them to handle and interact withtheir hospitali/ed infant, better preparing them for dis-charge.

'The Pediatric Video Series includes flu, following:

Promo /lux the neceloonent of Infants with PmlouNeil I toslutoh:at ton. 13 min. $17-3. A variety of ways for promot-ing an infant's development during a stay in the Pedi-atric Unit is presented-- play, adjusting routines to suitthe needs of the child, the use of proper positioning andhandling techniques, and involving the family in day-to-day care.

I lelpin Famitie of Iliftnt-; Prolon,vd I lovitalizotion.il min. $175. Nursing statt plays an important role infacilitating the adjustment of a family to an intant's hos-pitaliiation This program teaches ways in which statfcan promote successful parent-intant interaction duringhospitaliiation in the pediatric unit and nursing strate-gies for optimiiing a family's adjustment in preparationfor the infant's discharge.

Pawn t (he Wont with ProlonNeit I loTihilizotion. 12 min.$175. This video is intended for showing to parentswhose infants will be hospitaliied for a prolongedperiod, to help them adjust and to play a more positiverole. It helps parents to cope with the stress of having aninfant in the pediatric unit, explains how they canbecome more actively involved \ vith their hospitaliiedchildind offers them advice for helping siblings,grandparents and other close relatives deal with theirown feelings.

Introduction to the NICU and Caring for Your NICUBaby (lq0-1). Produced by Kathleen Mc( luskev-Eawcett,Ph.1) and Marion O'Brien, Ph.li at the Kansas Early Child-hood Research Institute, The University ot Kansas, I .awrenceand di,Aributed bv Paul I I. Brookes Publishing Co., P.O. Bo\10624, Baltimore, MD 21285-10624, tel: 800/638-3775.

Introduction to the MCI. I. 15 min. Parent Notebook andProfessional Manual included. $43. Developed to helpparents cope with the stress of having a baby in theNICU, this video introduces parents to the sights andsounds Of the NICU and problems common to NICUinfants. Techniques and equipment used to counteractthese problems are demonstrated, and the various peo-ple who staff the N ICU are introduced. The importanceof parents being involved in their babies care is dis-cussed, and basic techniques for safely touching, hold-ing and repositioning their baby are described. Tech-

niques for obtaining intormation to support caregivingis offered.

Caring fOr Your NIC1.1 Baby. 17 min. :'irent Notebookand Professional Manual iuicluihed SN. When parentsare familiar with the NiCl..; they can begin to masterskills essential to nurturing their baby. Thchniques boyteeding, bathing and taking a baby's temperature aredemonstrated. ferences in development betweenpre-term and full-term babies are described, and cuesthat 111,1v signal illness are identified. The tape informsparents and gives them the opportunity to witness basiccare techniques that can prepare them to care if )1" theirinfant at home.

High-Risk Babies (I 7) I .w I ) ar.mouth-I bitch-cock Medical Center and distribtited 1w Films tor thy un inan-itics & Sciences, PO Bo\ 2053, Prink eton, NI 08543-2053. tel:800/257-5126. 30 min. SI-IL)

This program examines the causes of babies born atriskthose born prematurely and those who have othermedical problems requiring a stay in the NICU. Thetape looks at ways that premature delivery can be pre-vented, though a large percentage of such births is unex-plained. The program also follows several familiesthrough the ordeal of premature delivery and the jour-ney to home.

Preemies: The Untold Tragedy 09931. Produced byChristopher School and distributed by Films for the II u ma nties & Sciences, PO Bo\ 20'13, Princeton, NJ 08;43-2053,te1:800/257-5126. 53 min. 514).

This documentary follows the story ot babies who sur-vived premature birth, making the case that outcomestor "miracle babies" are seldom miraculous. Many ofthe medicines and techniques used in neonatal units arestill classified as experimental, though parents typically

o not know that. Many survivors suffer lifelong healthproblems mai can grow up with severe disabling condi-tions. The tape calls for long-term follow-up of sur-vivors and for emphasis on preventative medicine.

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Conference call

September, 1995

September 14-18: fhe Societv for BeLivioral Pediatricswill hold its 13th annual meeting and (All: workshopsSeptember 14-18 in Philadelphia, PA. Kathryn E.Barnard and James l'errin will present a half-dav work-shop on /1 Rti i t) URI. Vs Diagnostic Classification: 0-

and DSM-Primarv Care on Saturday, September 16.Contact Noreen M. Spota, SUP Administrative Director,19 Station Lane, Philadelphia, PA 19118-2939, tel: (215)248-9168.

September 20-22: The Calitornia Department ot Devel-opmental Services will sponsor ,1 Governor's Confer-ence, Partners in Prevention III, in San Diego, Califor-nia. Jack P Shonkoff vvill give a special address, "Pro-moting Child Competence: The Science of Early Inter-vention Programs." Contact the Department of Devel-opmental Services, 1600 9th Street, Sacramento, CA, tel:(9 In) 654-2773.

September 20-22: The National Association of Chil-dren's I lospitals and Related Institutions will hold itsannual meeting in Milwaukee, Wisconsin, with thetheme "Value vs. Values, Mission vs. Margin." Speakerswill include Laurence O'Connell, Irwin Rubin, andAmitai Etzioni. Call Helen McBride, NACI1Rl directorof ed uc a tion , at (703) 684-1355.

September 28-30: The National Black Child Develop-ment Institute will hold its Twenty -fifth AnniversaryAnnual Conference, "Renewing the Spirit of Excel-lence," in Washington, D.C. Contact Vicki Pinkston,NBCDI, 1023 15th Street, N.W., Suite 600, Washington,D.C., 20005, tel: (202) 387-1281 or 1-800-556-2234.

September 28-October 1: The Association for Pre- andPerinatal Psychology and Health will hold its 7th Inter

national ( ongress in san Front isco. California on thetheme, "Uirth and Violence: 'Hie Societal I mpatSpeakers will include, ,lmong, others, Marshall KI,ms,1.1ovd deNtause, and Michael "1.rout. Contact ,\ PPM t,599 Stevenson Avenue, Alexandria, VA 22104-3300.

October, 1995

October 13-15: I healthy Mothers, I lealthv Babies Coali-tion will hold its biennial educational conference inRosslyn. Virginia (outside Wa-,hingt( n, D( ') on thetheme, "Promoting Prenatal Care: Strengthening Link-ages and Empowering Communities." A national forumtor community perinatal outreach workers will be heldOctober 11-12. Contact I IMI IB, 409 12th Street, S.W.,Washington, D.C. 20024. tel: (202) 863-2552; fax: (2(12)484-5107.

October 20: The California Infant Development Insti-tute sponsor Ct one-day seminar in Los Angeles byStanley Turecki, who will discuss "Temperament Issuesin Toddlers and Preschoolers. Call (213) 851-6122.

November, 1995

November 1-5: The Division for Early Childhood ot theCouncil for Exceptional Children will hold its I 1 th

annual international conference on children with specialneeds in Orlando, Florida, with the theme, "BroadeningRealities: Valuing Diversity." Valora Washington andBeth Harry will deliver plenary addresses. For informa-tion, write to DEC Conference, 3 Church Circle, Suite194, Annapolis, MD 214(11.

November 17-19: The National Perinatal Associationwill hold its annual clinical conference and exposition inWashington, D.C. Contact Contemporary Forums Con-ference Management at (510) 828-7100, xO, or NPA at(813) 971-1008.

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INDEXA Topical lildc\ Volunie ;/eh) II) riliet1111.111,1,A gr,,111,, toptc tht andr,. nn1, rub!), a ion, mid11,1Ve .11,111.111'd In ir111 It, 11.11111

lIgnst `,,..11tonlbcr, l'Al4 through !nut. kik.1,m 1\11011,111 Ittill I 11,1,st as revi,.\[hi, 'twat', that a brio ot th,.1,111,11,

t ion klco .11,12,,arN ,/,1, ,2 111d

Med I he spvcial thome, lor ca, h issin ol Volhave hcen

Child carelLui,;. II\

,.11.1,,,: it .:I.; *.1,11....0

11,1.e. I

...2 Imam...oh/WA

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,221, ;e2th .122han:..11.1,1:. .1, 2f,:, the

Pi,mrain ior Iimmt lochilvr ar,gis cr.I . , non- keiv, Mkt ..22,

11, .211 Alidls, Mod/ 0. :j if

Rosenthal, \11,,.1,2 , app22,a,h he ,2 .2,, I .or :11

.2, I-2.22.! of

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11.1ilnumth I 111,11,,KI. Medi, di(I: ;i1 Re.le,i 31 .1,1,,

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11,,vos. I.. I and 51,,. a.is.vbah, boil, nalulally lead ;nth Ihe telt

Rese, h on the atonnieThe at 2thwein,221 pattern, :nneiehor IN and infant,I , 1 l,,, `...p1 1 VI 1 p '11

Mlle II,1,...clopment of ,eaIldn,. o2 Ade:,

\,,1 1 N., I Nutt I'",3 1,

11.111, ,111,1 Wieder.Alediated fear /UM, 21,velopmental and 2202,.2212,.d

Auguq/Septernher, 1994I ',an, t. 111211C1111211I .111t1 ClI112111 .111, 11111 11,1 1,1111

%CI

Dc tuber/Nos ember. 199.4

Dec ember, 1494/1,11mm,, I'M;I dui ming and slIpro( nn.nn

I ehruarN/Mar(h, I195( hnhal re,ponst, nnant, and iannh-.April/May, 1993

hund Ini.,..n,..-lune/Itd, 199';( in ne,.i.ataI , arc unit.

10I 1,11.

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181 1 ',4.1 WM' ha% 1'1'1 p .1.1

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e allap122.1* 101,1;10? dud5,..1 I lug spiA 1.1.1 I p ;.

FamiliesAilsdlut (.roup Corporation

annli, e in . Imo a I lie roaviKemeif ,( 11,100taile

l"I NI. AP1 513,

As''octation °Uhl 1)c chl"Vnt N'''ci`liNts and Ili,'Ruth Pearce Fund lor ( onipatil,mthlins:, Mil/ do they hNht ,n! ;Chia ;ce .I.

I 1 \li, '\111 ma, ., ..2

FS and Thonia..T.,e2212,21 Re,le.2

1.,,,", p

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rale flint4.I 1 1.. lunt, 1.0,i p

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nt hospitals al, p.n., the l'1.11.1f,I No 2, ' Jul% p 1 I

R, Payne, C, R and 51, I arIand.tehreting prenatal and rostral non die In 2112,21 Ne.

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',Li, istir.... of /CIO 10 /uo. are al ailahlo tor

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( alttornia1)ept. ot I.dth:ationKra,hlIN the With, ,ompeten,2 to' Inapan2.and Serimy the famuu. Cultutal eo,n120,11,,, tor slanReview of video.,0 I-. ,

42 lune/July 1995 Zero to Three 4 3BEST COPY AVAILABLE

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hot herapu m "rotor, culturalI lt 1 N.:, I.1.11 , '

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BEST COPY AVAILABLE 44Zero to Three June/July 144S 43

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