Parenting in the Neonatal Intensive Care Unit - Carlos Haya

JOGNN I N R EVIEWParenting in the Neonatal Intensive CareUnitLisa M. ClevelandCorrespondenceLisa M. Cleveland, RN, MN,CPNP, IBCLC, University ofTexas Health Science CenterSan Antonio, School ofNursing, Department ofFamily Nursing, 7703 FloydCurl Drive, San Antonio, TX78229-3900.clevelandl@uthscsa.eduKeywordsparentsparentingneonatal intensive care unitneonatal nursingfamily centered careABSTRACTObjective: A systematic review of the literature was conducted to answer the following 2 questions: (a) What are theneeds of parents who have infants in the neonatal intensive care unit? (b) What behaviors support parents with aninfant in the neonatal intensive care unit?Data Sources: Using the search terms ‘‘parents or parenting’’ and the ‘‘neonatal intensive care unit,’’ computer librarydatabases including Medline and CINAHL were searched for qualitative and quantitative studies. Only researchpublished in English between 1998 and 2008 was included in the review.Study Selection: Based on the inclusion criteria, 60 studies were selected.Data Extraction: Study contents were analyzed with the 2 research questions in mind.Data Synthesis: Existing research was organized into 1of 3 tables based on the question answered. Nineteenarticles addressed the first question, 24 addressed the second, and 17 addressed both.Conclusions: Six needs were identified for parents who had an infant in the neonatal intensive care unit: (a) accurateinformation and inclusion in the infant’s care, (b) vigilant watching-over and protecting the infant, (c) contact with theinfant, (d) being positively perceived by the nursery staff, (e) individualized care, and (f) a therapeutic relationship withthe nursing staff. Four nursing behaviors were identified to assist parents in meeting these needs: (a) emotionalsupport, (b) parent empowerment, (c) a welcoming environment with supportive unit policies, and (d) parent educationwith an opportunity to practice new skills through guided participation.JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.xAccepted August 2008Lisa M. Cleveland, RN,MN, CPNP, IBCLC is aclinical instructor at theUniversity of Texas HealthScience Center SanAntonio, School of Nursingand a doctoral student at theUniversity of Texas, Austin.Infants are admitted to the neonatal intensive careunit (NICU) for a variety of reasons includingprematurity, sepsis, and respiratory di⁄culty. Thisexperience can be particularly distressing for thefamilies of these infants. When faced with a NICUadmission, parents struggle with the unknown inthe unfamiliar and potentially threatening environmentof an intensive care unit. These parents oftenencounter challenges to the development of theirparenting roles (Fenwick, Barclay, & Schmied,2001a, 2001b; Heerman, Wilson, & Wilhelm, 2005;Hurst, 2001a, 2001b; Lupton & Fenwick, 2001).These challenges may have long lasting e¡ects onfamily functioning (Talmi & Harmon, 2003). Somelongitudinal studies of NICU families suggest thatfor at least a time period following the infant’sdischarge, families may go on to experience di⁄cultiesin their day to day lives and ability to cope(Rautava, Lehtonen, Helenius, & Sillanpaa, 2003;Talmi & Harmon). Issues stem from stress causedby the hospitalization itself and may lead to symptomsof acute stress disorder (ASD), a precursor toposttraumatic stress disorder (PTSD) (Holditch-Davis,Bartlett, Blickman, & Miles, 2003; Shaw et al.,2006). Analysis of speci¢c sources of stress indicatedthat alteration in the parental role was moststrongly associated with the symptoms of ASD. Parentsreported that an inability to help, hold, care forthe infant, protect the infant from pain, and sharethe infant with other family members were primarysources of stress (Shaw et al.).Nurses have the unique opportunity to assist familiesduring this potentially di⁄cult experience.However, before nurses can do this, they must possessa good understanding of the needs of parentsin the NICU and how to address them. Continuingresearch in this area is the key to doing this successfully.With this in mind, it is essential for nursesto remain active in setting the agenda for neonatalresearch and for protecting the rights of this vulnerablepopulation (Franck, 2005). The Association ofWomen’s Health, Obstetric, and Neonatal Nurses(AWHONN) has made the following research goals666 & 2008 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWa priority: preterm and near-term infants, reductionof disparities in low birth weight, the impact of technologyin the NICU, and parent education(AWHONN, 2007). In addition, Harrison and colleaguessuggest numerous topics for neonatalresearch and pose the important questions: ‘‘Whatnursing interventions help to reduce stressorsexperienced by families who have infants in theNICU?’’ (p. 65) and ‘‘What interventions help to promoteattachment and adaptive parenting betweenparents and preterm infants and between parentsand infants with serious health problems?’’(Harrison,Lucas, & Franck, 2003, p. 65).Another researcher in this area of study, Franck,claims that numerous topics in neonatal care, suchas parental stress in response to a NICU admission,have been well described in the literature, but few ofthese studies have been followed up with interventionalmethods or clinical trials. Some areas ofneonatal care have been over-researched, such asthe development of numerous neonatal pain assessmenttools, while other important areas havebeen neglected (Franck, 2002). For example, studiesfocusing on parental visitation and involvementin the NICU were well researched during the 1980s,but little research on this topic has been conductedmore recently (Franck & Spencer, 2003). Therefore,the purpose of this literature review was to conductan investigation into the current research on parentingin the NICU with a particular emphasis onresearch methodology and design. All articles werecritically analyzed with two primary questions inmind: (a) What are the needs of parents in theNICU? (b) What nursing behaviors support parentsin meeting these needs?MethodsA systematic review of both qualitative and quantitativeresearch was conducted to identify what isknown about the needs of NICU parents and whatbehaviors support these parents. Both methods ofresearch were included because of the potential foreach to contribute to a more complete understandingof this topic. A systematic review was employedbecause it results in a scienti¢c, reproducible, summaryof original research ¢ndings with clearlystated inclusion and exclusion criteria. This methodof review limits personal bias from the reviewer andcontributes to evidence-based nursing practice(Stevens, 2001; Whittemore & Kna£, 2005).The computer library databases Medline andCINAHL were searched for research studies publishedbetween 1998 and 2008. This time framewas selected due to the rapid advances in technologyand the changing environment of the NICU overthis time period. A review of the most current researchon parenting in the NICU was the aim of thisreview.To be included in this review, the studies had to beresearch, printed in English, speci¢c to parenting inthe NICU, and speci¢c to the two research questionsthat were the focus of this review. Thecombined search terms were ‘‘parents or parenting’’and ‘‘neonatal intensive care unit.’’ Two hundredand sixteen studies were obtained from Medlineand another 168 from CINAHL. Titles and abstractswere reviewed to determine if the studies met thestated criteria. If a determination could not bemade in this manner, the article was retrieved andread before making a decision. Thirty-seven studies(5 doctoral dissertations) meeting the searchcriteria were selected from CINAHL and 16 wereselected from Medline. An additional 7 articlesmeeting the criteria were selected from the referencelists of articles already included in the review(Fenwick et al., 2001a, 2001b; Hurst, 2001a, 2001b;Pearson & Anderson, 2001; Peterson, Cohen, &Parsons, 2004; Schroeder & Pridham, 2006). Thesestudies were included because they met the inclusioncriteria and were determined to be relevant toanswering the research questions. A total of 60studies were selected for review based on thesearch criteria.ResultsAfter carefully reviewing the ¢ndings of each study,the author determined that 19 studies addressedparenting needs (see Table 1), 24 addressed supportivebehaviors (see Table 2), and 17 addressedboth (see Table 3). The studies were then organizedaccording to research methodology. Of the 19with a focus on parenting needs, 5 of the studies utilizedquantitative methods and 14 were qualitative.Of the studies addressing parent support in theNICU, 19 were quantitative, 2 were mixed methods,and 3 were qualitative. The 17 studies addressingboth research questions included 6 quantitativeand 11 qualitative studies (see Table 4). Also noteworthy,4 of the studies reviewed were written usingthe same research data (Fenwick et al., 2001a,2001b; Fenwick, Barclay, & Schmied, 2002; Lupton& Fenwick, 2001). In a di¡erent instance, Hurst(2001a, 2001b) utilized the same data baseto write both of her articles. Although the focusof each article was slightly di¡erent, what initiallyappeared to be 6 separate studies was actuallyonly 2.JOGNN 2008; Vol. 37, Issue 6 667

I N R EVIEW Parenting in the Neonatal Intensive Care UnitTable 1: Parental Needs in the NICUStudy and Year Purpose of Study Participants Setting Methods Major FindingsQuantitative Descriptive StudiesBialoskurskiet al. (2002)Explore the organization ofmaternal needs andpriorities in the NICUPurposive sampling of 209 mothersage 18-45UnitedKingdomQuestionnaire with 2 self-assessmentsurveys: critical care maternal needsinventory and a ranking scale93% of mothers ranked receiving accurateinformation as a priority. Good communicationwith sta¡ was also important while self-relatedneeds were considered less importantJoseph et al.(2007)Identify perceived stress infathers of surgical infants22 fathers 18 years and older. Infantscategorized by condition: cardiac,respiratory, neurological anomaliesMid AtlanticUnited States22 item Parental Stressor Scale: InfantHospitalizationFathers’ stress was highest for Parental RoleAttainment and Infant Appearance and Behavior.Infant pain, separation from the infant, andbreathing problems were most stressfulLam et al.(2007)Explore parents’ stress andperceptions of supportrelated to nursing behaviors63 parents, 76% mothers. (English,Arabic, and Chinese speaking)infants with cardiac or surgicalproblemsAustralia NICU nursing sta¡ behavior andcommunication subscale of the ParentalStress Scale and the Nurse Parent SupportToolSources of stress included inadequate informationconcerning tests and treatment and uncertainty ifthe nurse would call parents if the infant’scondition changed. Stress and perceived supportwere moderatePunthmatharithet al. (2007)Compare the needs, needresponses, and needresponse satisfaction ofmothersPurposive sampling of 420 mothers(140 from each hospital); mean agesof the 3 groups ranged from 25-28years3 hospitals insouthernThailand3 questionnaires developed by theresearcherSigni¢cant di¡erences were identi¢ed betweengroups for needs, need responses, and needresponse satisfactionWard (2001) Identify the perceived needsof parentsConvenience sample of 52 parents (42mothers,10 fathers) mean age 25years, 56% White, 65% of infantswith primary diagnosis ofprematurityMidwesternUnited StatesNICU Family Needs Inventory (NFNI)derived from the Critical Care FamilyNeeds Inventory (CCFNI)Assurance was most important and support wasleast important. Fathers ranked support,assurance and information needs signi¢cantlylower than mothers. Comfort and proximityneeds did not di¡er between mothers andfathers668 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWTable 1. ContinuedStudy and Year Purpose of Study Participants Setting Methods Major FindingsQualitative StudiesArockiasamyet al. (2008)Understand the experiencesof fathers with seriously illinfantsPurposive sampling of fathers; 12White, 3 East Indian, and 1 AsianCanada Semi-structured interview conducted by amale physician. Constant comparativecontent analysisLack of control with ¢ve subthemes: world view,information, communication, roles and externalactivitiesBroeder (2003) Examine the process ofbecoming a mother duringhospitalization anddischarge homePurposive sampling; 8 mothers(White), 25-41 years old, no infantanamoliesMidwesternUnited StatesSemi-structured interviews every twoweeks during hospitalization and monthlyfor 4 months following discharge.Interpretive data analysisMothers wanted to remain connected duringseparation from their infant while being preventedfrom holding them. Getting to knowthe infant while the nurse was the primarycaretaker was a challengeErlandssonandFagerberg(2005)Describe how mothersexperienced the care andtheir own healthConvenience sample; 6 mothers ofNICU infants approximately 2months after birth and afterdischarge from the hospitalSweden Semi-structured, open-ended, interviewsfocusing on the mothers’ experience inthe co-care ward. Description, reduction,and higher level invariant meaningsanalysisMothers wanted to be close to their infants, be seen,and be part of a functional team. Theorganization/sta¡ prolonged the separation. Evenafter returning home, mothers had di⁄cultydealing with the separationHeerman et al.(2005)Explore and describemothers’ experiences15 upper middle class, White mothers MidwesternUnited StatesInterviews of open-ended questions.Spradley’s domain analysisMothers progressed from outsider to partnerthrough 4 major domains: focus, ownership,care giving, and voice. Mothers progress atdi¡erent rates and nurses can facilitate thisprocessHiggins andDullow(2003)Explore the experiences ofparentsConvenience sample of parents 20-40years old with infants of goodprognosisSoutheasternAustraliaInterviews conducted post discharge Main theme of parenting from a distance.Three subthemesof watchfulness, needing to be near theinfant, and feeling useful instead of uselessHolditch-Davisand Miles(1999)Determine how well mothers’experiences ¢t the PretermParental Distress Model31 mothers, infant o1,500 g,mechanically ventilated or both.Average maternal age 5 29 years,86% were married,19 White,11African American, and 1 AsianUnited States Interviews at 6 months corrected gestationalage. Data analyzed using the theoreticalframework as a guideMothers’ experiences were consistent with the 6sources of stress outlined by the theoreticalmodel; (a) pre-existing and concurrent personalfactors, (b) prenatal and perinatal experiences,(c) infant illness, treatment, and appearance, (d)concern about infant’s outcome, (e) loss of theparental role, and (f) healthcare providersJOGNN 2008; Vol. 37, Issue 6 669

I N R EVIEW Parenting in the Neonatal Intensive Care UnitTable 1. ContinuedStudy and Year Purpose of Study Participants Setting Methods Major FindingsHurst (2003) Examine how resources toensure family centered carea¡ected the experience ofa Mexican Americanmother in the NICUOne bilingual Mexican Americanmother (case study)Western UnitedStatesAudiotaped interviews and ¢eld notes aboutthe mother’s experience analyzed usingnarrative and content analysisInadequate resources in the NICU createdsituations where responsibilities such asinterpretation and transportation for othermothers were shifted to the participantHurst (2001a) Gain insight into mothers’perceived needs andexplanation for their actionsPurposive sampling; 12 Englishspeaking mothers 20-43 years (7White, 4 Latina,1African American)NorthernCaliforniaBedside observation, audio-recordedconversations, and privately conductedinterviews. Thematic content analysis,constant comparative coding/classi¢cation, and narrative analysisMothers had informational, interactional, andemotional safety needs, they negotiated actionswith healthcare providers, cautiously challengedauthority, and gathered support from othermothers, friends and family. Fear of beinglabeled ‘‘di⁄cult’’ and ‘‘vigilance’’ were keyconceptsHurst (2001b) Explore mothers’ descriptionand interpretation of theirexperienceSame data base as Hurst (2001a) NorthernCaliforniaSame as Hurst (2001a) Underlying themes of mothers ‘‘vigilantly watchingover’’ their infants. Mothers were alert to issues ofsafety that might signal danger for their infant.Feared being labeled di⁄cult, and expressedconcerns over the lack of complete and accurateinformation provided, inadequate sta⁄ng andlack of continuity of careJamsa andJamsa (1998)Describe parents’experiences of the nursingcare of critically ill infantsPurposive sampling; 7 mothers and 4fathers of full-term ill infantsFinland Informal interviews with preplanned openendedquestions. Inductive, contentanalysisParents found the NICU environment ‘‘shocking’’and the technological environment made themfeel like outsiders in the care of their infantsOrapiriyakulet al. (2007)Explore maternal attachmentinThai mothersPurposive sampling of 15 mothersaged 16-42. Infants o37 weeksgestation, had no anomalies, andwere or had been mechanicallyventilatedThailand Interviews and observations. Constantcomparative method analysisMothers were ‘‘struggling to get connected’’composed of 4 phases: (a) establishing theconnections, (b) disrupting the connections, (c)resuming to get connected, and (d) becomingconnected670 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWTable 1. ContinuedStudy and Year Purpose of Study Participants Setting Methods Major FindingsTaylor-Huber(1998)Determine the meaning of theexperience of parent dyadswith infants in the NICU9 parent dyads, age 22-53 years, 8 ofthe 9 dyads were married. Nofurther demographics wereprovided2levelIIINICUsin UtahThree parent dyads, unstructured,interviews. Data analyzed for themesAn overall theme of stress was identi¢ed with 4subthemes: issues of trust, family roles andrelationships, parental role and authority, andparent-nurse relationships in the NICUTaylor-Johnson(1999)Explore the perceivedlearning needs of mothersin the NICU and afterdischargePurposive sampling of 30 mothers,18-41 years (17 African American, 7White, and 6 Latina)Hospital andhomeUnstructured interviews with ¢eld notes(no audiotapes)Learning needs included baby basic care,breathing, heart rate, medications, and monitorsWhitlow (2003) Explore interactions andattachment in the NICUPurposive sampling of 13 mothers withinfants in the NICU 1-17 years prior.(12 White,1 African American) 21-49yearsAL,TN, andGAQualitative interview; heuristic analysis Mothers were initially overwhelmed by the NICU.Adaptation was essential to interaction with theinfant. Mothers desired to hold infants, acquireknowledge, and learn how to interact with infantsJOGNN 2008; Vol. 37, Issue 6 671

I N R EVIEW Parenting in the Neonatal Intensive Care UnitParents felt excluded from the care of their infants.After categorizing the articles, conventional contentanalysis was used to more closely examine the¢ndings of each study. This type of analysis allowedcategories to emerge from the data with the goal ofanswering the two research questions (Hsieh &Shannon, 2005). Based on the literature, six primaryneeds of parents in the NICU were identi¢ed. Theseincluded: (a) accurate information and inclusion inthe infant’s care and decision making, (b) vigilantwatching-over and protecting the infant, (c) contactwith the infant, (d) being positively perceived by thenursery sta¡, (e) individualized care, and (f) reassuranceand a therapeutic relationship with thenursing sta¡. Four supportive behaviors for assistingparents that meet these needs were alsoidenti¢ed. These included: (a) emotional support,(b) parent empowerment, (c) a welcoming environmentwith supportive unit policies, and (d) parenteducation with an opportunity to practice new skillsthrough guided participation. In the paragraphsthat follow, these parenting needs and supportivebehaviors will be discussed in further detail.What are the Needs of Parents WhoHave Infants in the NICU?A Need for Accurate Information and Inclusionin the Infant’s Care and Decision MakingParents expressed a desire to receive accurate,understandable, information and wanted to participatein the decision making process (Alderson,Hawthorne, & Killen, 2006; Arockiasamy, Holsti, &Abersheim, 2008; Bialoskurski, Cox, & Wiggins,2002; Gardner, Barrett, Coonan, Cox, & Roberson,2002; Hurst, 2001a, 2001b, 2003; Lam, Spence, &Halliday, 2007; Lubbe, 2005; Mok & Leung, 2006;Taylor-Huber,1998; Taylor-Johnson,1999; van Rooyen,Nomgqokwana, Kotze, & Carlson, 2006;Whitlow, 2003). They also wanted to be activelyinvolved in the care of their infants (Erlandsson &Fagerberg, 2005; Fenwick et al., 2001a; Heermanet al., 2005; Higgins & Dullow, 2003; Holditch-Davis& Miles, 2000; Jamsa & Jamsa,1998; Lupton & Fenwick,2001; Orapiriyakul, Jirapaet, & Rodcumdee,2007; Pohlman, 2005;van Rooyen et al.; Wigert,Johansson, Berg, & Hellstrom, 2006). They voiceddistress over receiving inaccurate and/or incompleteinformation pertaining to their infant’scondition (Hurst, 2001b). They felt as though theywere parenting from a distance and struggled withfeelings of uselessness while yearning to be usefulin infant care (Higgins & Dullow). Being able to providebasic care for the infant was identi¢ed ascritical (Heerman et al.). Some mothers stated thatbeing able to provide care was a major turningpoint, especially when they began to feel that theyknew their infants better than the nurses did (Lupton& Fenwick).Unfortunately, some parents identi¢ed a sense ofbeing excluded from the care of their infants. In alongitudinal study, Wigert et al. (2006) found thatmothers often felt like ‘‘intruders’’ in the NICU. Theyfelt that the infant belonged to the caregiver. Thisexclusion from the infant’s care was associated withnegative maternal feelings that could last for severalyears following discharge. On the other hand,approaches that involved encouraging mothers toparticipate in the infant’s care, treating each motheras an individual, and maintaining e¡ective dialoguewith the nurses were found to be associated withmore positive maternal feelings (Wigert et al.).A Need to be Vigilant and to Watch Over andProtect the InfantAn underlying theme of vigilance or watching overthe infant was identi¢ed in several studies (Higgins& Dullow, 2003; Hurst, 2001a, 2001b). Vigilance wasdescribed as a heightened level of watchfulness,information gathering, and re£ection on maternalfeelings (Hurst, 2001a). Mothers were alert for situationsthat signaled danger such as poor continuityof care, lack of attention to the baby, or suspectingthat contraindicated care was being provided(Hurst, 2001b). Parents felt as though they neededto protect their infants from danger by overseeingthe infants’ care. As they started to form trustingrelationships with the nurses, this watchfulness beganto relax (Higgins & Dullow). Frequent phonecalls to the NICU and the parent’s presence at theinfant’s bedside were techniques parents used to‘‘safe guard’’ their infant (Hurst, 2001b).A Need for Contact With the InfantA need to be near the infant and to have physicalcontact was identi¢ed as important to parents(Broeder, 2003; Erlandsson & Fagerberg, 2005;Higgins & Dullow, 2003; Joseph, Mackley, Davis,Spear, & Locke, 2007; Lupton & Fenwick, 2001; Orapiriyakulet al., 2007; Ward, 2001; Whitlow, 2003).Mothers yearned to hold their infants, but when thiswas not possible due to the infant’s fragile condition,the mothers found comfort in sitting next tothe bed touching and stroking their infants. Providingbreast milk was viewed as a form of contact andwas desirable to mothers because they felt this wassomething only they could do for their babies.672 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWTable 2: Parental Support in the NICUStudy andYear Purpose of the Study Participants Setting Intervention Design/Methods Major FindingsQuantitativeBrowneand Talmi(2005)Determine if a family basedintervention might a¡ectparenting knowledge,behavior, and stressConvenience sample; 84mothers; mean age 5 24years;75% White,15%African American; 77% onpublic assistanceOklahoma Group I: demonstration andinteraction; Group II:education; Group III: controlQuasi-experimental. Subjectsrandomly assigned to one of 3groups; 2 experimental, onecontrol The Knowledge ofPreterm Infant Behavior Scale;Nursing Child AssessmentFeeding Scale; ParentingStress Index; Severity of IllnessScoreMothers in both experimentalgroups demonstrated greaterparenting knowledge andinteractional behavior anddecreased stress whencompared to the control groupChristopheret al.(2000)Explore the in£uence of socialsupport and perceived stresson a¡ectionate behavior107 mothers,13-21; 44%White non-Hispanic, 47%Black, 7% Native AmericanNorthCarolinaNone Descriptive, correlational. A 7item perceived stress scale,10item social support scale, andthe A¡ectionate BehaviorsScale developed for this studyNeither social support norperceived stress were relatedto a¡ectionate behaviors, andno statistical interactionsbetween the three variableswere foundCorreiaet al.(2008)Characterize verbal contentsexpressed by the mothers ofpreterm infants attending apsychological supportinterventionPurposive sample of 10mothers with clinicalsymptoms of depressionsand anxiety and 10 without.Ages 14-39Brazil Weekly psychologicalintervention sessionsdesigned to support mothersduring their infants’hospitalizationsQuantitative, interpretive.Structured clinical interview-DSM-III-R, Beck DepressionInventory, State-Trait AnxietyinventoryDepressed/anxious mothersexpressed more negativefeelings or reactions thanmothers in the comparisongroupGlazebrooket al.(2007)Evaluate the e¡ect of aparenting intervention onmothers’ responsiveness andinfants’ neurobehavioraldevelopment in preterminfants o32 weeks gestation233 mothers and infants; 112in the intervention group,121 in the control group.Mothers predominantlyWhite, 24-35 yearsUnitedKingdomA nurse delivered interventionconsisting of tactile and verbalactivities, observation, anddiscussionCluster, randomized, controlledtrial. Parenting Stress Indexshort-form; NeurobehavioralAssessment of the PretermInfant; Nursing ChildAssessment Teaching Scale(NCATS); Home Observationfor Measurement of theEnvironment (HOME)No statistical di¡erence betweenthe intervention and controlgroups for stress, infantneurobehavioral development,or NCATS and HOME scores at3 months post dischargeJOGNN 2008; Vol. 37, Issue 6 673

I N R EVIEW Parenting in the Neonatal Intensive Care UnitTable 2. ContinuedStudy andYear Purpose of the Study Participants Setting Intervention Design/Methods Major FindingsHurst(2006)Indentify parent utilization andevaluation of parent supportservices (PSS)Convenience sample of 303families that used the PSS.90% mothers with meanage of 33.6 yearsWest CoastUnitedStatesNone Quantitative descriptive.Retrospective hospital recordsreviewed to identify familiesthat used PSS. An investigatordeveloped mailed survey toevaluate PSS e¡ectiveness.The intervention improvedparents’ ability to criticallyappraise their infant’s behaviorand to respond appropriately78% utilized one form of supportexclusively while 18% used 2forms at the same time.Continuity was critical; groupsupport was more bene¢cialfor assisting familiesJones et al.(2007)Explore mothers’ and fathers’perceptions of e¡ective andine¡ective nursecommunicationConvenience sample of 20mothers and 13 fathersaged 28-41 yearsAustralia None Semi-structured interviewsasking parents about theirperceptions of e¡ective andine¡ective communicationE¡ective communication wasaccommodating and includednurses asking questions,encouraging parents to askquestions, informal chattingand conversation about thebaby. It was also emotional,warm and empathetic.Ine¡ective communication wasunder or over-accommodating,including inconsistentinformation and nurses failingto check parents’understanding674 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWTable 2. ContinuedStudy andYear Purpose of the Study Participants Setting Intervention Design/Methods Major FindingsKowalskiet al.(2006)Determine what sources andexpectations parents haveconcerning information71 mothers and 30 fathers,ages 18-55UnitedStatesNone Qualitative questionnaire Parents received mostinformation from nurse andexpectation was to receiveinformation from theneonatologistLawhon(2002)Evaluation of an individualizednursing intervention based onparental/infant competenceConvenience sample of 10infants and their 10mothers/8 fathers ages 19-35 (median age 5 25.5years/26.5 years); (15 White,3Black)UnitedStatesIndividualized intervention withnurses guiding parentsthrough appraisal of infant’sbehavior and appropriateresponsesQualitative. Enhanced parent/infant competence wasmeasured with the NursingChild Assessment FeedingScale and the Assessment ofPreterm Infant Behavior at 3timesThe intervention improvedparents’ ability to criticallyappraise their infant’s behaviorand to respond appropriatelyMaguireet al.(2007)Examine the e¡ects of a shorttermintervention on parents’knowledge of infantbehavioral cues and caregiving con¢dence10 sets of NICU parents,infants o32 weeksgestation with noanomalies and notrequiring surgeryTheNetherlands4 sessions on preterm infantbehavior over a 2 week period.Control group received noinstructionsQuantitative trial. Lack ofCon¢dence in Care Giving andGlobal Con¢dence Scales.Questionnaire concerningnursing support in the NICUNo signi¢cant di¡erences in caregiving con¢dence betweengroups. Intervention group hadsigni¢cantly higher nursingsupport scoresMelnyket al.(2001)Evaluate the e¡ectiveness of thecreating opportunities forparent empowerment (COPE)program42 English speaking mothers(18^38 years) of low birthweight, premature,hospitalized infants; (64%White, 2.4% Hispanic)New York 4 sessions of (a) appearanceand behavior of preterminfants and parentingstrategies (b) workbook forparent activities to implementskills. Control group received 4sessions focused on hospitaland discharge proceduresPilot study, randomized clinicaltrial. Infant mental developmentmeasured at 3 and 6 months.Mother’s anxiety, mood,stressors, social support,coping, and ability to feedinfantCOPE infants had higher mentaldevelopment scores at 3 and 6months. COPE mothers hadless stress from sights andsounds of the NICU initially andoverall stronger parentingbeliefsJOGNN 2008; Vol. 37, Issue 6 675

I N R EVIEW Parenting in the Neonatal Intensive Care UnitTable 2. ContinuedStudy andYear Purpose of the Study Participants Setting Intervention Design/Methods Major FindingsMelnyket al.(2006)Determine if the COPEintervention could improveinfant behavioral anddevelopmental outcomes258 mothers/158 fathers/signi¢cant others withpreterm infants o2,500 g,26-34 weeks Englishspeaking, 64%-77% White,83%-91% high schooleducation or greater. Meanparent age 5 28North EastUnitedStates4 sessions on appearance andbehavioral characteristics ofpreterm infants and parenting;practice time for skills. Controlgroup received 4 sessions onhospital policies and servicesRandomized controlled trial.Parent anxiety, stress,depression, beliefs, infantparentinteraction, and lengthof NICU and hospital stay. Dataafter interventions,1 week. and2 months. after dischargeMothers (not fathers) reportedless stress in the NICU and lessdepression and anxiety at 2months Both parentsdemonstrated more positiveparent-infant interaction andbeliefs. COPE infants had a 3.8day shorter NICU stayNottage(2005)Examine the relationshipbetween perceived socialsupport and parental use ofhospital non-medical supportservicesConvenience sample; 25mothers,19 fathers, ages24-54 years 75% White,23% African American,and 2% LatinoEast coastUnitedStatesNone Quantitative; correlational.Perceived Social SupportScale for Family and Friends,and the Utilization of SocialSupport (created for this study)Neither perceived social supportfrom family nor friends wassigni¢cantly correlated withuse of hospital supportservicesPearsonandAnderson(2001)Evaluate the e¡ectiveness of aparent education interventionon parenting59 mothers, 45 fathers; 44NICU or special carenursery sta¡Minnesota Parent intervention consisting ofa facilitator and educationalsupportQuestionnaire focused oncontent and areas for futureprogram improvements. Sta¡survey of parental behaviorsAttending Parent’s Circle assistedparents to overcome obstaclesin the NICU and increasepositive parenting behaviorsPetersonet al.(2004)Identify nurses’ perception andpractices of family-centeredcare (FCC)Convenience sample of 37NICU and 25 PICU nurses;54 were registered nurses,52% had 410 yearsexperience, 53% had aBachelor’s degree orhigherAcute carehospitalNone Quantitative. Family CenteredCare Questionnaire (FCCQ)focused on both FCC necessityand current practiceThe number of nursesincorporating FCC into theirpractice was signi¢cantly lowerthan those who stated it wasnecessary. Nurses with 410years experience practicedFCC less than thosewitho10 years. NICU nursespracticed FCC less than PICUnurses676 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWTable 2. ContinuedStudy andYear Purpose of the Study Participants Setting Intervention Design/Methods Major FindingsSchroeder(1998)Examine the e¡ects of guidedlearning on mothers’ care oftheir premature infant16 mothers of NICU infants;ages 20-42; 12 White,1African American,1 Latina,1 Native American,1 AsianWisconsin Standardized parent learningintervention focused on 6di¡erent aspects of guidedlearningMother’s Working Model ofPreterm Infant Caregiving(Relationship) InterviewProtocol; RelationshipCompetencies Assessment;Parent Child Early RelationalAssessment rating scale;Family Provider RelationshipsInstrumentEngaging with mothers in guidedparticipation can positivelyin£uence the relationshipbetween mother and infantSchroederandPridham(2006)Determine if ‘‘guidedparticipation’’ improvesmothers’ relationshipcompetency with their NICUbabies16 mothers, 22-26 years, oflow birth weight infant’s 28weeks gestational age orlessMidwestUnitedStatesMothers practiced parentingthrough guided participationled by the research nurseRandomized trial. InternalWorking Model of Relating tothe Baby and the RelationshipCompetencies AssessmentMothers in the intervention grouphad higher relationshipcompetencies with their infantthan mothers in the controlgroupvan der Palet al.(2007)Compare the e¡ects of basicinfant developmental care andthe Newborn IndividualizedDevelopmental Care andAssessment Program(NIDCAP) on parental stress,con¢dence, and perceivednursing support192 infants in RCT 1 and 168 inRCT 2; all o32 weeksgestation, no anomalies ordrug addictionTheNetherlandsBasic developmental care andNIDCAP2 consecutive randomized trials.Data collected using: theClinical Risk Index for Babies,2 scales of the Mothers andBaby Scale, Nurse ParentSupport Tool, Parental StressorScale: NICUNo signi¢cant di¡erences werefound in parental stress,con¢dence, or perceivednursing supportWalker(1998)Identi¢cation of nurses’ views onbarriers to parenting in theNICU298 NICU nurses Australia None 53-item questionnaire Nurses believed environmentalbarriers and parental attitudescontributed to parentingdi⁄culties. Did not recognizethat nursing practices and unitprotocols could be barriersJOGNN 2008; Vol. 37, Issue 6 677

I N R EVIEW Parenting in the Neonatal Intensive Care UnitTable 2. ContinuedStudy andYear Purpose of the Study Participants Setting Intervention Design/Methods Major FindingsWielengaet al.(2006)Determine if providing careaccording to the NewbornIndividualized DevelopmentalCare and AssessmentProgram (NIDCAP) principalswould increase parentsatisfaction50 parents age 516-40years, (25 in intervention/25in control group) of infants30 weeks gestation or less;English or Dutch speaking.No infant anomaliesTheNetherlandsNIDCAP interventions areguided by infant’s response,developmental level, andphysical condition. Familycentered with goal ofempowering parents to bemembers of healthcare teamQuasi-experimental. Controlgroup received traditional care,interventional group receivedcare guided by NIDCAP.Outcomes measured by theNICU Parent Satisfaction Formand Nurse Parent Support ToolParents were signi¢cantly moresatis¢ed with care provided byNIDCAP principlesMixed MethodBruns andMcCollum(2002)Examine the perspectives ofmothers, nurses, andneonatologists concerningthe importance andimplementation of caregiving,information exchange, andrelationships in the context offamily centered care55 mothers 18-42 years 75%Anglo and married.18neonatologists, and 123nurses; mostly female andAngloMidwesternUnitedStatesNone PARTNERS questionnaire.Qualitative content analysisMothers and nurses had higherratings than neonatologists onimplementation of caregiving.Mothers and nurses ratedimportance higher thanimplementation for informationexchange and relationshipsMacnabet al.(1998)To assess the potential forpromoting journal writing forparents receiving socialsupport in a special carenursery73 parents, English as aprimary language,minimum of a 12th gradeeducationBritishColumbiaAn instructional pamphlet onjournal writing was provided tothe participantsFollow-up phone interview 6weeks after enrollment todetermine if a journal was kept32%of parents kept a journal,73% of these felt it helpedreduce stress. The #1 journalentry topic was seeing yourchild attached to machinesfollowed by interactions withnursing sta¡QualitativeBuarqueet al.(2006)Investigate the in£uence ofsupport groups on families ofat-risk newborns and on NICUsta¡13 mothers, 6 fathers, 2grandmothers, and 16 sta¡membersBrazil None Observation of support groupmeetings and open-endedinterviewsSupport groups provided familieswith information, emotionalsupport and strength. Parentto-parentsupport wasessential678 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWTable 2. ContinuedStudy andYear Purpose of the Study Participants Setting Intervention Design/Methods Major FindingsCescutti-Butler andGalvin(2003)Explore and describe parents’perception of sta¡competencies in the NICU8 parents South-westEnglandNone Grounded theory. Unstructuredinterview.Parent perception of competencywas based more on caringbehaviors than skills. Parentswanted (a) to be integrated intothe NICU, (b) control, (c) achoice to stay duringprocedures, and (d)communication with thehealthcare team andappropriate informationWigert et al.(2008)Explore conditions for parentparticipation in infant care inthe NICU10 parents,14 nurses and 15managersSweden None Observations and interviews withrepresentatives from sta¡,management, and parentsConditions for parentparticipation were driven bythe sta¡, budgetaryconstraints and unit routinesJOGNN 2008; Vol. 37, Issue 6 679

I N R EVIEW Parenting in the Neonatal Intensive Care UnitA ‘‘power struggle’’ between the infant’s nurse and motheroften occurred.Mothers felt that providing breast milk was a methodfor establishing a relationship and a connectionto their infants (Lupton & Fenwick).Lupton and Fenwick (2001) discovered that in somecases nurses were found to inappropriately limit theparent’s contact with their infants. They reported anincident where the mother of a stable, 34 week gestationinfant asked the nurse if she could hold herinfant and was told, ‘‘No, you’ve had your cuddle today’’(p. 1016). Mothers also reported that whenarriving on time to provide care for their infant, theywere sometimes informed by the nurse that the carehad already been administered. During the study,there were additional claims of several mothers arrivingto the nursery to visit their infants and beingtold ‘‘bluntly and loudly’’ (p. 1017) that the nurserywas closed. Some nurses stated they felt as thoughthey were personally responsible for how the parentsparented, and they took their role as teachersvery seriously. As a result, mothers claimed thatnurses often hovered over them and warned ofoverhandling their infants. These actions resultedin feelings of anger and frustration on the mother’spart.A Need to be Positively Perceived by the NurserySta¡Mothers of NICU infants desired to be perceivedpositively by the nursery sta¡ (Fenwick et al.,2001a, 2002). They feared that voicing their opinionwould increase their infant’s vulnerability. Threestudies described the mother’s fear of becominglabeled by the nurses as ‘‘di⁄cult’’ (Hurst, 2001a,2001b; Lupton & Fenwick, 2001). They were concernedabout being seen as pushy and felt theyneeded to be ‘‘nice’’ to the nursing sta¡ to facilitatea good relationship (Fenwick et al., 2002). They alsofelt they needed to conform to the ‘‘good mother’’role as constructed by the nurses. The nurses admittedto having speci¢c criteria for who quali¢edas the ‘‘good mother.’’ These women ‘‘asked lots ofquestions, appeared eager to learn everything,and could be reasoned with’’ (Lupton & Fenwick,p. 1018).Mothers withheld or guarded feelings for fear of losingaccess to their infant. Fenwick et al. (2001a)discovered that fathers were often the ones to initiateany complaints about nursing sta¡, andmothers seemed to rely on this. Con£icts betweenthe nurse and the mother were rarely resolved, andgenerally the nurse would discontinue caring forthat infant and a di¡erent nurse would be assigned.Mothers who were labeled ‘‘troublemakers’’ oftendiscovered that the outcome was passive-aggressivebehaviors from the nurses. If the mother-nurserelationship could not be negotiated, mothers became‘‘disenfranchised,’’ which further contributedto their stress levels, and these women respondedby distancing themselves. These researchers concludedthat this model of care was traditionallycentered on the provider and not the family.A Need for Individualized CareWhile the need to receive individualized care mayseem obvious, researchers suggest that this needmay be overlooked in the NICU (Hurst, 2001b; Punthmatharith,Buddharat, & Kamlangdee, 2007;Wielenga, Smit, & Unk, 2006). This is most apparentwhen addressing the needs of fathers. Of the 60studies reviewed for this paper, 23 included fathersin their sample; however, the number of mothersand fathers in each study were not typically equal(Alderson et al., 2006; Arockiasamy et al., 2008;Buarque, de Carvalho Lima, Parry Scott, &Vasconcelos, 2006; Denney, 2003; Gardner et al.,2002; Herbst & Maree, 2006; Higgins & Dullow,2003; Jamsa & Jamsa,1998; Jones, Woodhouse, &Rowe, 2007; Joseph et al., 2007; Kowalski, Leef,Mackley, Spear, & Paul, 2006; Lam et al., 2007; Lawhon,2002; Lee, Lee, Rankin, Alkon, & Weiss, 2003;Lindberg, Axelsson, & Ohrling, 2007; Macguire,Bruil, Wit, & Walhter, 2007; Melnyk et al., 2006; Nottage,2005; Pearson & Anderson, 2001; Pinelli, 2000;Pohlman, 2005; Taylor-Huber, 1998; Ward, 2001). Inone of these studies, researchers found that theneeds of mothers and fathers were di¡erent.In their study of an intervention to improve mentalhealth outcomes in parents with infants in the NICU,Melnyk et al. (2006) found that the response ofmothers and fathers to interventions was not thesame. After implementation of the intervention, theyfound that the mothers in the research group hadless anxiety and stronger parental beliefs. Interestingly,they found no di¡erence in stress level in thefathers and no di¡erence in state anxiety and depressivesymptoms at 2 months postdischarge. Theauthors concluded that the fathers needed to befollowed for a longer period of time (Melnyk et al.).Ward (2001) also found di¡erences in the needs ofmothers and fathers. She discovered that whileboth thought assurance needs were most importantand support needs were least important, the680 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWTable 3: Parenting Needs and Support in the NICUStudy andYear Purpose of Study Participants Setting Methods Major FindingsQuantitativeDenney(2003)Measure the occurrence of stress inLatino NICU parents and therelation of parental stress, nursingsupport, and parenting e⁄cacy32 Latina mothers and 16fathers, mean age 5 29yearsSouthernCaliforniaParental Stressor Scale:NICU, the NICUCaregiving and Communication Scale, theNurse Parent Support Tool, Maternal E⁄cacyQuestionnaire, and Family DemographicQuestionnaireParenting stress was not signi¢cantly related toparenting e⁄cacy. Parenting e⁄cacy wassigni¢cantly related to nursing support.Sources of stress were di¡erent for Latinaparents than previous studies with WhiteparentsGardneret al.(2002)Investigate the experiences ofparents in the NICU to design afamily support programRetrospective purposivesampling of parents withinfants discharged in thepast year.119 participants(114 mothers, 5 fathers)Regionaltertiaryreferral center39 item questionnaire designed for this study.250 questionnaires sent out by mail with a48% response rateParents were satis¢ed with their care but desiredto do more hands on care of their infant.Parents wanted a more active role in thedecision to discharge their infantLee et al.(2003)Describe the stressful events ofChinese American NICU parentsand assess the in£uence ofacculturation, parentcharacteristic, and social supportson parent stress30 Chinese American families(30 mothers, 25 fathers) 18-43 yearsSan Francisco Infant health data from the medical record,Parental Stressor Scale: InfantHospitalization, Suinn-Lew Asian Self-IdentityAcculturation Scale, Family Support ScaleThe combined e¡ects of uncertainty about theinfant’s condition and future, a strong belief inAsian family values, and lack of support fromhealth care providers accounted for 26% ofthe variance in parental stress for mothers and55% for fathersMok andLeung(2006)Explore the supportive behaviors ofnurses in a Hong Kong NICU37 NICU mothers; 26-38 yearsoldHong Kong Nurses Parent Support Tool Mothers rated nursing support as highlyimportant. Parents desired more nursingsupport than they received in the area ofinformation sharing and supportivecommunicationJOGNN 2008; Vol. 37, Issue 6 681

I N R EVIEW Parenting in the Neonatal Intensive Care UnitTable 3. ContinuedStudy andYear Purpose of Study Participants Setting Methods Major FindingsPinelli(2000)Determine the relationship betweenfamily coping and resources andfamily adjustment and parentalstress in the NICU124 couples, mean age 5 31years mothers/32 yearsfathersOntaria,CanadaBased o n the Resiliency Model of Family Stress,Adjustment, and Adaptation. Instrumentsincluded: State Anxiety Scale, FamilyInventory of Resources for Management,Family Crisis Oriented Personal Evaluationscale, and the McMaster Family AssessmentDeviceResources were more strongly correlated withpositive adjustment and decreased stressthan coping or being a ¢rst time parent.Findings were similar between mothers andfathers; however, mothers used more copingstrategies than fathersVanRiper(2001)Describe maternal perceptionsabout family provider relationshipsand the correlation with familywell-being55 NICU mothers; 69% White,29% African American,and 2% Latino; meanage 5 29 range 17-40 yearsMidwesternUnited StatesFamily Provider Relationships Instrument-NICU,18 item version of Ry¡’s measure ofpsychological well-being, and the GeneralScale of the Family Assessment MeasureMothers had greater family satisfaction and weremore satis¢ed with their care and reportedgreater psychological well-being when theyviewed their provider relationship as positiveQualitativeAldersonet al.(2006)Explore the views of parents and sta¡concerning sharing of knowledgeand care of the infantParents of 80 NICU infantswith con¢rmed or potentialneurological problems. Allmothers participated,16fathers and 40 senior sta¡SouthernEnglandObservations over an 18 month period; semistructuredinterviewsParents described their views on two-waydecision making and a practical need to know.Physicians preferred a distancing aspect ofinformed consent. Parents preferred ‘‘drawingtogether’’Fenwicket al.(2001a)Describe and explain the experienceof mothering in the NICU from thewoman’s point of view28 mostly Australian bornwomen 19-41 years and 20nursesAustralia Mothers interviewed prior to infant dischargeand 8-12 weeks after. Interviews with 20nurses, informal conversations with parents,and bedside nurse/parent interactionsInhibitive or authoritative styles of nursing careled to the mothers’ feelings of struggling tomother, feeling disa¡ected, guarding offeelings, attempts to speak up and out, fear ofearning a reputation or recrimination, and¢nally a disenfranchised mother682 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWTable 3. ContinuedStudy andYear Purpose of Study Participants Setting Methods Major FindingsFenwicket al.(2001b)Explore the use of ‘‘chat’’ as a methodof establishing family-centeredcare in the NICUSame data base as Fenwicket al. 2001aAustralia Same as Fenwick et al. 2001a The use of ‘‘chat’’ or an informal communicationstyle between parents and nurses wasidenti¢ed as critical to the mothers. Only 12%of the bedside recordings revealed the nurses’use of this technique.Fenwicket al.(2002)Gain an understanding of howwomen perceive early mothering inthe NICUSame data base as Fenwicket al. 2001aAustralia Same as Fenwick et al. 2001a The category ‘‘learning and playing the game’’was accomplished through: ‘‘sussing’’ thingsout (identifying and learning the groundrules), being nice, and proving one’scapabilitiesHerbst andMaree(2006)Describe parents’ needs andrecommendations forempowerment from theirperspective20 Master’s prepared nurses South Africa Parent focus groups. Data were presented tonurses with discussion of solutions to meetthese needsTen empowerment guidelines were suggestedby the nursing focus groupLindberget al.(2007)Describe the father’s perspective ofhaving a premature infant8 fathers of premature infants NorthernSwedenNarrative interviews Three themes were identi¢ed: suddenly being ina situation never re£ected on, putting motherand infant ¢rst, and needing to be understoodLubbe(2005)Develop an intervention careprogram for NICU parentsAll parents with an infant inone of the two selectedNICUsSouth Africa Open-ended questions Parenting needs included: information,emotional support, communication, learning,and preparation for discharge. The EarlyIntervention Care Progamme was thendesigned to meet these needsJOGNN 2008; Vol. 37, Issue 6 683

I N R EVIEW Parenting in the Neonatal Intensive Care UnitTable 3. ContinuedStudy andYear Purpose of Study Participants Setting Methods Major FindingsLupton andFenwick(2001)Investigate how mothers withhospitalized infants construct andpractice motherhoodSame data base as Fenwicket al. 2001a2 neonatalnurseries inSydney,AustraliaSame as Fenwick et al. 2001a Physical contact with the infant andbreastfeeding were important. Powerstruggles occurred between mothers andnurses. Maternal frustration and anger wascommon. The nurse’s approach was integral tothe mother’s establishment of a relationshipwith the infantPohlman(2005)Improve understanding of fathers ofpremature infants and the role ofwork in the transition to fatherhood9 fathers, all English speakingand White, 26-39 yearsMidwesternUnited StatesFathers participated in 8 interviews over 15months. period. Interpretive phenomenologyPrimacy of work in the lives of the fathersemerged as a theme with 3 subthemes: workafter birth-a renewed fervor, from expert tonovice, and juggling work and the outsideworldvanRooyenet al.(2006)Describe mother’s experience in theNICU and develop guidelines forregistered nurses to assist thesemothersNot identi¢ed Not identi¢ed Phenomenological interview Mothers experienced shock, fear, anger, guilt,grief, helplessness and a desire to care for theinfant. They needed support from the nurses,personal knowledge, and accurateinformation explained in understandableterms. Guidelines for nurses included:establishing and maintaining a therapeuticrelationship and milieuWigertet al.(2006)Describe mothers’ experienceshaving their full-term infants inNICU10 mothers ages 27-45 infants37 weeks or 4, nodeformitiesSweden Interviews were conducted at 6 mos. 6yearsfollowing the experience. Phenomenologicalhermeneutic text analysisTwo concepts were identi¢ed. Exclusion withnegative e¡ect on maternal feelings andparticipation with positive maternal feelings684 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWranking of various needs di¡ered. Fathers rankedassurance and the need for information signi¢cantlylower than did the mothers.The majority of studies involved only mothers, withjust 4 focusing speci¢cally on fathers (Arockiasamyet al., 2008; Joseph et al., 2007; Lindberg et al.,2007; Pohlman, 2005). Researchers, who studiedfathers in the NICU discovered that the experiencemay be unique for these men. Pohlman (2005)found that work was critically important to fathersas a means of coping with the situation. Loss of controlwas a major hurdle for some NICU fathers(Arockiasamy et al.). Several fathers of prematureinfants in the NICU found themselves ‘‘getting intothe midst of something never previously re£ectedon’’ (Lindberg et al., p.142). This condition consistedof shock and not being able to completely graspwhat had happened along with a dire need to understand.Fathers also described certain aspectsof their infant’s conditions as stressful, particularlypain, breathing di⁄culties, and separation (Josephet al.).A Need for a Therapeutic Relationship With theNursing Sta¡Seventeen studies addressed the parent’s need todevelop a therapeutic relationship with the nurse(Bialoskurski et al., 2002; Erlandsson & Fagerberg,2005; Fenwick et al., 2001a, 2001b; Heerman et al.,2005; Holditch-Davis & Miles, 2000; Hurst, 2001a,2001b; Lam et al., 2007; Lee et al., 2003; Lupton &Fenwick, 2001; Mok & Leung, 2006; Taylor-Huber,1998; van Riper, 2001; van Rooyen, Nomgqokwana,Kotze, & Carlson, 2006; Ward, 2001; Wigert et al.,2006). The researchers identi¢ed the nurse’s abilityto either positively or negatively in£uence the developmentof the parent-infant relationship. Severalresearchers described a ‘‘power struggle’’ thatdeveloped between the parents of the infant, particularlythe mother, and the nurse (Fenwick et al.,2001a;Lupton & Fenwick). This power struggle wasoften a result of inhibitive nursing practices thatincluded the nurse ‘‘protecting’’ the infant and directingthe mother. This approach allowed thenurse to maintain his or her role as the expert andoften alienated the mother (Fenwick et al., 2001a).Mothers were found to be acutely aware of thepower di¡erentials between themselves and theNICU personnel (Hurst, 2001b). This is unfortunatebecause researchers suggest that parents possessa strong desire to collaborate with care providers,especially nurses (Bialoskurski et al.; Erlandsson &Fagerberg; Hurst, 2001a; Lee et al.; Mok & Leung;Taylor-Huber; van Riper; van Rooyen et al.; Ward).In a study of Australian mothers, Lupton and Fenwick(2001) described how mothers of NICU infantssaw nurses as ‘‘gatekeepers’’ between themselvesand their infants. These mothers felt they had togain permission from the nurse to interact with theirbabies and that they were being constantly super-Table 4: Summary TableParent Needs Supportive Behaviors Needs and Supportive BehaviorsQuantitative 5 19 65 not speci¢ed 12 interventional 3 correlational7 non-interventional 2 descriptive1 descriptive/correlationalQualitative 14 3 114 phenomenology 1 ethnography 3 grounded theory2 ethnography 1 phenomenology 3 phenomenology1 grounded theory 1 not speci¢ed 1 ethnography1 qualitative description 1 descriptive1 descriptive case study 1 qualitative, contextual1 Moustakas’ heuristic methodology 2 not speci¢ed4 not speci¢edMixed Method 0 2 0Both quantitative and qualitative methodsJOGNN 2008; Vol. 37, Issue 6 685

I N R EVIEW Parenting in the Neonatal Intensive Care UnitThe nurse’s communication style was found to be acritical factor in the establishment of the nurse-parentrelationship.vised. This resulted in the mother feeling frustratedand resentful. As a means of coping with this, themothers attempted to regain control of the situationby acquiring knowledge about their infants’ condition.What Behaviors Support Parents inMeeting These Needs?Emotional SupportThe results of several studies indicated that emotionalsupport was highly important for parentsexperiencing a NICU admission (Buarque et al.,2006; Correia, Carvalho, & Linhares, 2008; Denney,2003; Hurst, 2006; Jones et al., 2007; Lee et al.,2003; Mok & Leung, 2006; Nottage, 2005; Pearson& Anderson, 2001; Pinelli, 2000; van Riper, 2001;van Rooyen et al., 2006). Mothers had greater familysatisfaction when they viewed their providerrelationship as positive (van Riper), and parentinge⁄cacy in Latino parents was signi¢cantly relatedto nursing support (Denney). Lack of nursing supportmay be a source of stress for both mothersand fathers (Lee et al.). Speci¢c areas whereparents desired more nursing support included informationsharing and supportive communication(Mok & Leung).Three studies in this review focused on parents supportingeach other (Hurst, 2006; Nottage, 2005;Pearson & Anderson, 2001). The results of this typeof intervention were quite positive and this seemedto be an e¡ective technique for providing additionalsupport to parents. In their study, Pearson andAnderson implemented a ‘‘parents’ circle’’ that consistedof a facilitator providing parents witheducational information along with parent-to-parentsupport. These researchers found that parentswho attended parents’ circle overcame obstaclesin the NICU more easily and experienced anincrease in positive parenting behaviors. Hurst discoveredthat parents rated group support as themost bene¢cial type of support they received duringthe hospitalization of their infants.Parent EmpowermentThe ability to empower parents is considered crucialin the NICU (Alderson et al., 2006; Bruns &McCollum, 2002; Cescutti-Butler & Galvin, 2003;Fenwick et al., 2001a, 2001b; Gardner et al., 2002;Herbst & Maree, 2006; Lawhon, 2002; Lindberget al., 2007; Lubbe, 2005; Lupton & Fenwick, 2001;Macnab, Beckett, Park, & Scheckter,1998; Petersonet al., 2004; Pohlman, 2005; Schroeder & Pridham,2006; Wielenga et al., 2006; Wigert et al., 2006; Wigert,Hellstrom, & Berg, 2008). However, in their study,Herbst and Maree discovered that there was noconsensus among nurses about how to actuallysupport this process and turn over as much primarycare to the parents as possible. Since thereare no agreed upon guidelines for nurses, this twopartstudy asked parents to identify nursing actionsthat would be helpful in their process of becomingempowered. This information was then presentedto the nurses in the form of a workshop wherenurses developed guidelines to implement.These guidelines included the following: (a) parentsshould be introduced to the NICU during prenatalpreparation; (b) parents should receive a one-ononeorientation to the NICU upon admission of theirinfant; (c) parents should be informed of any informationinvolving their infant and should be activelyincluded in the decision making process; (d)parents should be involved in the infant’s carewhenever possible; (e) parents emotions should beaccommodated; (f) sta¡ should be caring, knowledgeable,and approachable; (g) developmentalcare of the infant should be implemented; (h) startingupon admission, parent should be prepared fordischarge; (i) the highest quality of nursing shouldbe a priority; and (j) aspects of parent empowermentand family-centered care should be a part ofthe hospital vision and mission statements. The authorsof this article stated that follow-up researchafter these guidelines had been implemented wasnecessary. These guidelines may serve as a templatefor the development of standards of care forNICU families in other hospitals as well.A Welcoming Environment with SupportiveUnit PoliciesUnit environment and the nursing approach arecrucial to assisting parents in the NICU. Restrictivehospital and unit policies can create signi¢cantroad blocks for parents (Bruns & McCollum, 2002;Fenwick et al., 2001a, 2001b; Heerman et al., 2005;Herbst & Maree, 2006; Jones et al., 2007; Macquireet al., 2007; Peterson et al., 2004; Pinelli, 2000;Schroeder, 1998; Schroeder & Pridham, 2006; vander Pal et al., 2007; Walker,1998; Wigert et al., 2008;Wielenga et al., 2006). Even though these obstaclesmay be unintentional, their consequences can beprofound. If parents are anxious, subtle factors suchas the nurse’s tone of voice and body language canbe critical in helping them cope.686 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWThe communication style of the nurse was found tobe a critical factor in the establishment of the nurseparentrelationship. Fenwick et al. (2001b) identi¢edthat the nurse’s ability to ‘‘engage’’ the mother anddevelop a supportive relationship relied on the useof language. Sharing of personal information wasfound to occur through ‘‘chatting’’ with the nurse.All the mothers in this study identi¢ed this skill asbeing associated with the ‘‘good nurse.’’ The nurse’sinitiation of chatting often involved conversationabout life outside the nursery interspersed withinformation about the mother’s baby. When surveyed,only a minority of nurses identi¢ed that theyutilized chatting as a strategy for establishing trustand a therapeutic relationship with the mother. Itwas these same few nurses that were labeled ‘‘goodnurses’’ by numerous di¡erent mothers repeatedly.This occurred in spite of the fact that those nurseslacking the ability to chat attributed a positivenurse-parent relationship to nothing more than themeshing of personality types.In other words, the nurses that had the ability toengage mothers in chat knew they possessed thisability. The nurses lacking it were unsure of what itwas. Interestingly, even though mothers identi¢edchatting to be important to them, bedside recordingsof nurse-parent interactions showed that only12% of the conversations ¢t the criteria for chatting.The researcher concluded that through thistype of verbal interaction, nurses were able to relinquishsome of their power thus leveling therelationship (Fenwick et al., 2001b). Similar to these¢ndings, other researchers found that informalconversation was important to parents (Herbst &Maree, 2006; Jones et al., 2007) and that some parentsactually preferred to be addressed by the NICUpersonnel on a ¢rst name basis (Herbst & Maree).Heerman et al. (2005) found that supportive nursingcare could facilitate forward movement througha predictable trajectory as mothers moved from outsidersin the NICU to engaged mothers. As theybecame engaged, they were more likely to becomeactive participants in their infants’ care.With this forwardmovement, the potential for these mothers tobegin partnering with the nursing sta¡ increased.However, some mothers who desired to become involvedin their infants’ care held back and waited tobe invited by the nurse. One mother recalled thatthe nurse came in and provided all of the infant’scare without ever asking her to be involved. Somemothers were so intimidated by the NICU environmentthat they were afraid to provide care. Nurseswere found to be very helpful in these situations.One mother recalled that she wanted to hold her infantso badly, but the infant was on a ventilator andshe was too afraid. The nurse said to the mother,‘‘You’re mom and you need to hold her and sheneeds to be held by you’’ (p.179). The mother recallsthe nurse’s response giving her more con¢denceand the experience of holding her infant was verymeaningful.Family centered care (FCC) is a well accepted conceptin the care of infants and many NICU’s havealready adopted FCC and put into place policiesthat support the implementation of it. Unfortunately,there seems to be some inconsistencies about whatexactly FCC means and how to go about implementingit. In one study, nurses identi¢ed theelements of FCC as important; however, it was notalways incorporated into their practice (Petersonet al., 2004). Interestingly, nurses with less than 10years of experience incorporated more FCC elementsinto their practice than did nurses withgreater than 10 years. The researcher speculatedthat because FCC was ¢rst introduced in the 1970sperhaps those nurses more recently educated hadreceived more information about its implementation.Additionally, pediatric nurses rated FCC asmore important than did NICU nurses. Here the researcherstheorized that unlike children, infants areadmitted directly to the NICU before they have beenincorporated into the family structure.Parent Education With an Opportunity to PracticeNew SkillsThrough Guided ParticipationHaving an opportunity to practice new skills withassistance from the nursing sta¡ was identi¢ed asimportant by NICU parents. Ten studies includedthe successful introduction of an intervention withsome degree of hands-on opportunity for parents(Browne & Talmi, 2005; Bruns & McCollum, 2002;Kowalski et al., 2006; Lawhon, 2002; Melnyk et al.,2001, 2006; Peterson et al., 2004; Schroeder, 1998;Schroeder & Pridham, 2006; Wielenga et al., 2006).Of the articles reviewed, only 2 studies that includedpractice opportunities showed nonsigni¢cant¢ndings (Glazebrook et al., 2007; van der Palet al., 2007). Glazebrook et al.’s nurse delivered parentintervention had no e¡ect on short-term infantneurobehavioral function, mother-child interaction,or parenting stress. Several other researchers hadsimilar ¢ndings (van der Pal et al., 2007). In theirclinical trial comparing standard care, developmentalcare, and the Newborn IndividualizedDevelopmental Care and Assessment Program(NIDCAP), they discovered that there were nonsigni¢cantdi¡erences between groups for parentalstress, con¢dence, or perceived nursing support.JOGNN 2008; Vol. 37, Issue 6 687

I N R EVIEW Parenting in the Neonatal Intensive Care UnitOnly one study was found that o¡ered parent educationwith no practice. Researchers found that parentsshowed a signi¢cant improvement in knowledge,but no improvement in their con¢dence level(Macguire et al., 2007). Therefore, it appears that ingeneral an opportunity for parents to practice newskills is an important factor in creating change.Melnyk et al. (2006) had impressive ¢ndings withthis type of intervention when they conducteda clinical trial of their Creating Opportunitiesfor Parent Empowerment (COPE) intervention. Thisintervention consisted of four sessions designed toeducate parents about the appearance and behaviorsof preterm infants. The sessions were followedup with speci¢c activities for parents to practicewhile at the infant’s bedside. These interactionswere observed and rated by specially trainednurses in the NICU. The control group also receivedfour educational sessions but theirs were focusedon hospital policies only. The ¢nding of this trialshowed that parents in the intervention group demonstratedmore positive parent-infant interactionand parenting beliefs. In addition, the infants in theintervention group had a 3.8 day shorter NICU stay.Lawhon (2002) also encouraged parents to integratenew knowledge into their infant care. Thepurpose of this descriptive research study was toevaluate the e¡ectiveness of an individualizednursing intervention. The purpose of the interventionwas to improve parent/infant competence andoutcomes. This researcher found that parents improvedtheir ability to feed their premature infant,critically appraise their infant’s behaviors, and incorporatethis appraisal into the provision ofsupportive care for the infant.DiscussionThe results of this literature review need to be consideredwhen setting priorities for nursing care inthe NICU and a compilation of recommendations isprovided (seeTable 5). Student nurses as well as experiencednurses must continue to be educatedabout the needs of parents in the NICU. If notalready set in place, unit policies can be adoptedthat assure the parent’s need to receive completeand accurate information about their infant is met.E¡ective collaboration between nurses, physicians,and other sta¡ can assist parents to becomeactive participants in the making of decisions thatconcern their infant.Establishing an emotionally safe and supportiveNICU where a trusting bond exists between parentsTable 5: Recommendations for NursingPractice1. Support sta¡ and student education on the needs of parentsin the NICU2. Provide parents with clear and accurate informationconcerning their infant’s condition3. Collaborate e¡ectively with parents and other member of thehealthcare team when making decisions concerning theinfant’s care4. Establish an emotionally safe and supportive NICUenvironment to help build trust5. Provide unlimited parent access to the infant and an openvisitation policy whenever possible6. Provide individualized family centered care7. Assist parents to provide care for their infants throughguided participation whenever appropriate8. Provide nursing support and facilitate the establishment ofparent-to-parent support groupsand nurses may help decrease parents’ stress leveland their need to remain vigilant for the safety oftheir infant. In addition, unlimited access and openvisitation policies in the NICU are necessary to assurethat parents are able to be near their infantand to obtain the contact that both parents andinfants require. Whenever medically appropriate, allowingparents to hold their infant and the use ofkangaroo care is recommended.Making the development of a therapeutic relationshipbetween parents and nurses a priority in theNICU is essential. Nurses need to continue strivingto provide a supportive and nonjudgmental environmentfor parents to develop their role asparents. Creating an environment where the provisionof care is individualized to each parent’sparticular needs and designed to nurture parentsin their quest to become empowered is important.Parents must also be made to feel welcome andcomfortable in the NICU so that parent educationand the learning and practicing of new skills will besuccessful. Encouraging parents to care for theirinfant and assisting them through guided participationmay make their experience a less intimidatingone. From the time of admission, all care needs tobe focused on the successful discharge of the infantfrom the hospital.Finally, providing support for NICU parents remainsessential. If not already instituted, nurses can assist688 JOGNN, 37, 666-691; 2008. DOI: 10.1111/j.1552-6909.2008.00288.x http://jognn.awhonn.org

Cleveland, L. M. I N R EVIEWwith organizing parent-to-parent support groups.Nurses have always served as patient advocates;therefore, they are ideal for serving as leaders inthe initiation and reinforcement of new hospitaland unit-based policies that support parents.Nurses remain at the forefront of patient and familycare and have traditionally strived to provideoutstanding care. As technology and the NICUenvironment continue to evolve, we need to remaincognizant of the human needs of these smallpatients and their families.Recommendations for FutureResearchAlthough there has been signi¢cant research in thearea of parenting in the NICU over the past 10 years,several study populations have been consistentlyexcluded. Most of what is known on this topic hasbeen studied with a primarily White, middle class,female, population (Broeder, 2003; Browne & Talmi,2005; Bruns & McCollum, 2002; Fenwick et al.,2001a, 2001b, 2002; Glazebrook et al., 2007; Heermanet al., 2005; Hurst, 2001a, 2001b, 2006; Lupton& Fenwick, 2001; Melnyk et al., 2001; Schroeder,1998; van Riper, 2001; Whitlow, 2003; Wigert et al.,2006). There is a sound body of knowledge onresponse to an NICU admission in the Euro-American/Euro-Canadian population, however, littleis known about other cultures (Bracht et al.,2002).In their study in 2006, Melnyk et al. studied only parents18 years or older who spoke and read English.Their sample consisted of 258 mothers and 154 fathers.Only 10 of these individuals were Latina, 8were Asian, and 1 was Native American. This lack ofethnic diversity is problematic because Blackwomen have the highest rate (13.6%) of low birthweight infants in the country. This is almost twicethe incidence observed in White women (7%)(March of Dimes, 2007).Only 3 studies meeting the review criteria focusedspeci¢cally on ethnic parents (Denney, 2003; Hurst,2003; Lee et al., 2003). Denney studied Latin mothersand fathers in the NICU. Greater than half of herparticipants stated that Spanish was their primarylanguage. She discovered that sources of stress inthe NICU were di¡erent for Spanish versus Englishspeaking parents. In a case study involving a bilingual,Mexican American mother, Hurst discoveredthat inadequate resources in the NICU caused responsibilitiesto be shifted down to the case studyparticipant. This mother was asked to translatefor non-English speaking mothers and on severaloccasions to assist them with transportation to thehospital.Lee et al. studied Chinese American parentsin San Francisco. She found that thecombined e¡ects of uncertainty about the infant’scondition, belief in Asian family values, and lack ofsupport from healthcare providers was a signi¢cantsource of stress for these parents.In addition to the limited research on ethnically diverseparents in the NICU, other populations ofparents are also poorly represented. Of the 60 studiesreviewed for this paper, only 2 included infantswith anomalies (Joseph et al., 2007; Pinelli, 2000).Joseph et al. studied fathers of surgical neonateswith cardiac, respiratory, or neurological conditions.In her study, Pinelli reported that 8% ofthe infants included had some form of congenitalanomaly. Adolescent mothers also tend to be excludedfrom studies. This may be due to di⁄cultiesobtaining consent of a minor to participate in researchor the lower birth rate in this population.Only 5 of the studies meeting the inclusion criteriaincluded adolescent mothers in their sample(Christopher, Bauman, & Vaness-Meehan, 2000;Correia et al., 2008; Orapiriyakul et al., 2007; van Riper,2001; Wielenga et al., 2006). This is concerningdue to the high incidence (14.3%) of preterm birth inthis population (March of Dimes, 2007).ConclusionWhile great strides have been made in researchpertaining to parenting in the NICU, there is a needfor continued study of this topic. Therefore, parentalneeds in the NICU as well as nursing behaviors toaddress these needs should remain a priority fornurse researchers. Nurses have a responsibility toprovide evidence-based care that is e¡ective andmeets the needs of this vulnerable population ofpatients. The focus of nursing is ‘‘the alleviation ofsu¡ering through the diagnosis and treatment ofhuman response, and advocacy in the care of individuals,families, communities, and populations’’(ANA Nursing World, 2007).With this in mind, nursesplay a key role in supporting parents in the NICUand in£uencing better outcomes for NICU infantsand their families.REFERENCESAlderson, P., Hawthorne, J., & Killen, M. (2006). Parents’ experiences ofsharing neonatal information and decisions: Consent, cost, andrisk. Social Science and Medicine, 62,1319-1329.ANA Nursing World (2007). Retrieved April 24, 2007, from http://www.nursingworld.org/MainMenuCategories/Certi¢cationandAccreditation/AboutNursing.aspxJOGNN 2008; Vol. 37, Issue 6 689

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