CONCERNSC:F MOTHERS OF PRETERM LOW BIRTH"
WEI GHTINFANTS DURINGTHE FIRSTWEER OF TilE INFANTS'DISCHARGEFROM IIOS PITAL .
by
Marg a r e t El izabeth Now e , DN, RN
1\THESISSUBMITTEDTO THE SCHOOLOF GRADUATE
STUDIESINPARTI 7\L FULF I LMENTOFTHEREQUIREMENTS FORTHE DEGREE OF MASTER OFNURS I NG AT THESCHOOL OF NURSING,HEHORI7\ LUNI VERS I TYOF NEWFOUNDLAND.
19 93
st.John's Newf ou n dl an d
H.
N<ltiOnallib'ary01Canada B,blIoItX.'Q"cmloon.1lc duC an.'ld'l
.Acqui~1ionsand O'CC1101lccsac""f!;l hl)fl~l'l
8Ibliogra;bc Sevces~'<ndI desSCfVICCSb1b1~raphq lffl,
~~SI 'e.!l :!'9S...W(4n(JIn,
~~~ ?"~c..n
..'
The author has granted an irrevocable non-ex clusivelicence allowin g theNatio n alLibrary of Canad a to reproduce, loa n, distribute or sell copies of his/herthesisbyany means and inanyfor m or format, making th isthesis availa bletointerested person s.
Theauthor retainsownersh ipof thecopyright in his/herthesis.
Neitherthe thesisnorsubsta ntial extract sfrom it maybe printedor otherwise reproduce d without his/herpermission.
l'auteura accorde unelice nce lrrevocable et non exclu sive perrnettant
a
Is Bibliothequ e nationale du Can ada de reproduire,preter.distribuerou vend redes copies desa these de quelque manl ere et sous quelq ueformeque cesoitpour metlredes exemplaires decette thesea
la dispo sition des per sonn esint eressees,L'auteurconserv elaproprtetedu droit d'aut eur qui prot ege sa these.Ni latheseni des extra lts subs tantieis de celle- ci ne doivent etre tmprtmes ou autremenl reproduits sans son autorisati o n.
ISBN 0-3 15-86629-2
Canada
ACKN OWLEDGEMENTS
Many pe op l eha ve co n t r i bu t e d to the comple t ionor thi s thesis. I wou l d li keto express mysinc e r e ap p r eciat ionto my thosissupe rvLe o r , Ms. M,Hl recn Lerye e forher continued encourag eme nt, posit ive crit icism,and advice duringthe conduction or .'lir.
at.u dy, Hersu ppor t encou r a g e d me to continueand
complete the st ud y. I woul d also 1ike to thankM:o;. Edna McKimand Dr. Lan Gien ,membersoC myt.ho stu committee, (or the ir va l uable inp ut.
I am grateful to the mothers Wh o pcrt IcIpecod in th i s study. Th ei r wi l l ingnessto share Ln ro rnut.Icn about thei rexpe r iences he lpedgr e a tlyto mak e thin stud y pos a Ibl e ,
I als o extend my appreciation toMs . Sandril Fr c m:h and Ms. eLo Do wney , Nur si ng Supervisors, fo rtImir fMrt in the recruitmentof SUbj e c t s. Withou t theirLnt.or-cnt, th i s studywoul d havebeenimpossib le.
I als o exte nd mygrati tud eto Shar on!lookey lor th e man y hour s she spent intyp i ngth isthesisrtu rinq the ini tia l phases tocompletion .
Fin all y ,1 wi s h to thank mychild r en,Steven, Barbara , and Bruc e for the irund e rs ta nd i ng , en courag ement,andsuppo r t.
(i)
ABST RACT
rn thisqua Liec c Ive studythe purposewa s to explore and dc ccrIbe theconc e r ns of mo t he r s of preterm Low Birthweigh t (LBl4) in Cants during the fi rs t week followingthein fa nt s ' diachnr- q e Crom ho sp ital. Concepts from rolethe o r y formed the conc e p tu al fr a me wor k forthe study.
Fourteen mothers of preterm LBWinfants participated in the study. Ast r uct ure d diaryand an audio-tapedinterview vcrcus edtocol lectdata. Data were analyz e dfor themesand then catego rized.
'rticanaLy sla of the drrta revealedthatmothers' major concer ns were related bothtothein fant s and to themselves.
Over ha Lf of the conc e r ns raisedwere rel atedto the infants;
themost freque ntwe r e in f a n t s' health, feeding, growthand devel opm ent, and elim ination. Mothers' co nce r n s about th e mse l v e s focusedon fe e l i n g tired, their emotional state, andsc h e d u l e s. Mothe rs also had conce rn s about their partners and the irra mi] tc e• Th e findings suggested that taking on the role of motherof a preterm LBW infant was fac il i t a t e d by clea r roleexpectations, positivelearning expe rien ces,and supportfr o m partners , family, and health professio na ls. These factorsmayha v ehel p e d reduce mot.her-se conc e r ns and therefore, role sr r-afn.
(il)
Tableot Contents
page
Ackno wledgements .•• •.•.... . . •. ••.• ..•...•• •• Abstract.... . ... .... . .. .. .. ... ... ii List of Tables ... .... . .. .... . .... . ... .... .. ... vi
ChapterI: Int r o du cti on
TheProblem••. •• •••••• ••.••.•..•.•.. ••. ... Rationaletorthe study..•..•.•. ...•... Definitionof Terms•. .• •• ••. •••... . •..•• •.
Ch ap terII: Liter at ureReview
TheImp a c t ofTaking on the RoleotMo t h e r •. Factors Which Influence the Takingon the
Role e r Mother of a PretermLBWIn fan t . Concerns of Mothers of Preterm LBW Infants•.
Chapter III: Conceptual Framework
Statementof Purpose .. . .. . . . ... ... . .. . . S3 ResearchQuestions•.••• •••.•• •.• ..••• ••. .••.
(iii)
ChapterIV: Metho d
sampleSelection. .. . .. . ... . . . .. . . . ... . . . 56 Sample Size•. .• . .• .•••••••• • • •••••.•••. • .•••
The Sett1ng... . . .. .... . . ... . ... 60 Data Collection In struments •.•••••• •• • •••.••
Reliability and val idi ty.. . .... . . ... . . 64 DataCol lectionPro c&du res. ... ... ... .... . ... 66 Data Analysis... ... . . ... . ... ... 72 Ethical Conside::ations . . .. .. .. . . . ... . . . . 75
Chapterve TheResul ts
Demographic Cha racteristicsof the Samp le.. . 78 Concernsof MothersofPrete rmLBW Infa n ts
Fol l owi ng theIn f ants' Discharge from the Hospital.... . .. ... .. ... . ... .. . 83 Factors Wh i c h Influencethe Ta k i n g onthe
RoleofMo t h e r of apr e termLBW Inf ant•.•.. .•.• .. .••. . ••• .• •. .•.• . .• .• • 111 Role strain- Th '" Mother••• .•••••• • • • •• ••• •• 126 Summaryof Resul ts••.••• . •• • .•••••.• •••••• • • 132
ChapterVI: Discussion
Demograp hicCharac teristicsofth e samp le .•• 135 Concerns of Mothersof Pretorm LBW In f a nts
Fo l l owing the Infa nts' Di s charge from Hos pi tal. .. ... ... . . .. . .. .. . . . ... .. 136 ractors Wh i c h Inf l uence the Taking on th e
RoleotMothe r ota Pre termLBW infant••• •.••.••. .• • • •••••.•.• . • .• •.• •. 149
(Iv)
RoleSt r a i n - TheMoth er•• •••• ••• • • • • •• ••••• Impl i c at i o n s forNu rsinli••••• •••••• ••••• • • ••
Sugg es tio nsfor Futu r a HursinqResearch •• ••• Limitationsat thestud y ••.• •• • • ••••• •• ••• ••
Conclus io n s •••••• ••••••••••• • ••••••• • ••••••• 163 Refe r e n c e s.• ••• •••••••• •• ••• •• •••••• • •• ••• •••• ••• \65 1I.ppendice s
Appendix AI AppencSixB~
Appendix C:
AppendixD:
Append ix£: AppencSixF:
Append ix GI :A.p p e n di"H=
Explanation to theHothe r•••• 171 Informed Cons entForm•••• • •••
DiarySheet ••••••• • •••• •• • ••• Gu i d e l ine s tor us e of Dia r y•• Demogr" ph i c Dat a (Infant ) ••••
Gui de toIntervi e:-tTopics•••• 176 Rolest r ai nSc ale•• •••••••• • • Lett e r tot.be Assista n t Ex e cutiveDire cto r of Patie n t CareServic es ••• • • ••• 181
(v)
LIST OFTABLES
Page
Table 1 Demoqraph icCharac te ris ticsof the Mothers... . . . .. .. . . .. .. . . .... . 79 Table2 DemographicCh arac teristicsof the
Infants••• .•.•.••••• • •• ••••••••.•. Table3 DemographicCharacte r isticsof
Partners•••••••• • •••• ••••••.•• .• • • Table 4 concernso! Mothers About th eir
Preterm LBWInfa nts... . ... . . . 84 Table5 Conce rnsof MothersAboutTh e msel v e s ... 97 T",ble6 Concerns of Mothers Abo ut Their
Partnors ••• • • • •••• • • •••• • •• ••••.• . Table7 Concerns ofMo t h e r sAbou t theFamily
(Rela t i v e s andOlder Children)•• •• 1.07 Table8 Mo th e r ~I n f antAtt achm ent... . . .. .. . . 1.1 8 Ta bl e9 Mothers'support Sy s t e m•••• • •••••••• • • • 1.2 2
(vi )
CHAPT ERI Introduction
The taking on of the parent roleha s been considered a fo rm of crisis becauseof the physical and emotionaladjustments the family must make,oapociajLy th e mother (Broom, 1984;Hobbs" Cole, 1976: Mille-r [.
Sol lie, 1900; Rossi, 19 6 8 ; Russell, 1974). The mothe r must adjust to her new role,whi c h includes Lenr-n f nq to interpret the needs of her infant, take care oCthe infant, and relate to thein f a n t. It isduri ng the first week that she is home with th e infant, whenthe mother has primary responsibilities for the cn ro of her infant, that she jUdges how well she is able to tak e on this role. During this time the mother may experience difficulties with infant care orha v e concerns over the infants' health orph y s i c a l progress.
When the course of pregnancy terminates in p re t.ot-m labor and birth, the unanticipated birth ends the mot her 'sperceptionof an ideal pregnancy (RUbin, )984: Steele, 198 7 ). The pretem birth may cause intense emot i on s and concerns. Mothers reported fee l i nq.sof
helplessness and guilt about thepreterm birth (Affonso at aL. ,1992). Steele (1987) emphasizedthat the weeks that follow a preterm birth are eXhausting and confusing.
There may be anImmed Lat;n separationof the infant and the mothe rbecause of the infa nt 's ne e d for intensivemedical and nursing care attention . Furthermore, the mother is often dischargedhome wi t h o u t the. infant, and therefore,adaptation to the motherrole has to be postponedunt il the infant is discharged from thehospital. The prolonged separation may cause a delay in the mothet"-infantattachment pt-ecoua, The delay inattachment may in turn leave the mother withfe e l i n g s of Lnadequacyto care for he r infant. It is possiblethatfeelingsof affection towardsthe infant may be delayed. Goodman and Sauv e (1985) and Jeffcoate, Hu mph r e y andLlo y d (19 7 9 ) reported that some mothers didnot feel that the infa nt wa s really their own until the infant camehome from hos pi t a l.
The birth ofa preterm infantis stressful and can produc ea crisis situationfor the nc t' -ar. Ac c ordi ng to Caplan (1964). a crisis occurs whe n a personis
confronted wi th an imbalancebetwe en the diffic-ult.y perceived and the usualmet hod of pro b l em- sol ving . period of disequilibriumoccur-ai fal te r na ti v e wayc cannot be f.o u nd toso l ve the pro b le m. Te ns i on increases and feelings ofarlidet~-and hetptcssnos s resul t. Parent s of p reterm LBWinfan tshav e a mo re difficulttime adapting to pnr-en t.hood, 'l'hia may bo duo to thecr i sis of pr-et.e rm birth, cou p ledwit h the adj ustmentof addinga new membertotho family. when parents br ing their in f a n t s ho mefr omho spi t al the y no longer have thecon t i nue d pj-es.e nce and support of hospital staff. They hav eto mak e day-to - day ccct c tonn re g a r d i ng the infants' needs. Parents may fe e l that theyhave beenabandoned (Censull o, 1986) . The mot.hor-c lack. conf idenceand feel insecurewhen they firs': t.a ko theirinfantshome from hospital (J effcoiiteetaL,. , 19 79 ; Kenner& Lo t t, 1990; McHafHe , 1990). Mothers or pretermVer yLowBirthweight (VLBW) inf a n ts exper-Lenced moreanxiety and depres s i on fro m tho time of dp.livery until theinfan t wastwo mo nths cor rec te d age (Gennaro, York &Brooten, 1990).
Despitethetec h no l o gical ad ....ances ever t anro to mare q e pregnancy, the birthrateof preterm LIjW Lnten t.c
in Canada has rema i ned st.a r..~over the past 10 years (Yawn, 199 0 ). Yawn(1 9 90 ) re po r t e d that Law infants are 40tillle s mo re likely todie wi th in the firstfour weeksof 1Lreand they arethr e etiJrl'!S moresusceptible tone ur o l og i c a l handica ps. John s o n, Cox, and Mc Kim (1987) fo un d that of 14 3live bor n VLBWinf an ts (in fa nts we i g h ing 1500 gram s or le s s )deli v ered in Newfoundl and in 1980-1981,61di e dduring their first year. Eight of theiscwho survivedpa s t their first yea r showedevidence of se vereneurological abnormal i ty. Ninewere foundtoha v e variousoth e r prob lems. which incl udedse iz uresand develo pmental delay.
The Depa rt ment of Healt h , Health Researchand statistics Divis ionrepcreed 7685livebirths in Ne",(oundla nd in 19 90. The proportionof LBW infa nts (infants weighing2500gralls or less) bornin Novr oundte nd in th e sameyearwa s 5.641 ofthe live birth s. Incl ud ed in th e s e st a t'.isticsare pre term infan tsas well as ful l-te r m infant s who had10'"birth we ights . The r e f ore, the numbe rof LBI'o'in fants born in Newf'o undLend in 1990 ap proxi mab ed 43 3 .
Tworec ent studies rev e a led th a t th e lar ges t
cate go ryof concernsfor mothersof pretermLBWinfant s wa s rel ated to the infants' he al t h (Butts et a L,., 1988 ; cennaa-c , ZUkowsky, Brooten, Lowell &Visco, 1990). Gen n a r o , Zukowsky, et a L, (1990) reportedthat at one we ekfollowi n g the preterm LBWinfants ' ho s p i t a l di s charg e the most fre quentl y artic u lated he a l t.h relatedconcerns were breath ingpatterns and medications, fo l l o we d byca r e for infantson an apne a monitor, and lastly the infants' weight gain or lo ss.
McKim (in press-a) found that 48\of the56 mothersin he r study reported thatthe first week at homewi th their preterm infant was difficult . I twasi1
time whenmothersneeded guidance andsupport from nu r s e s . The factorsasso ciatedwith the
e
irrtcu t e firs t weekathome we r e relatedto thedeqr-eeoC tho infant ' spremat urity,the degre e of the infant's illness,whe the rtheinf a nt ha dapneainhospital, and whetherthe Pub lic He al th NursevicLt e d duringthe first wee k after the in fant wa s d''acharqcd from the hospital.Rationalefortbe study
The fi r~; tweek at home wi t h prctcrminfantohan
be en identified as a stressful time for pare n ts (Ken ne r
&Lott, 19 9 01Mc Ha ffi e, 19 89 ). Non e of the research
discussed he r e focusedsolely onth econcerns of mothers of preterm LBWor VLBWinfan ts in thefirst week fol l owingtheinfants' di s ch arge from ho spital.
Cu r re ntlythe rear el imi t e d data on concerns ofmot he rs of pretcrm LBW in f a n t s intheearly post hospital discharge period, especially du ri ng the firs t we ek the infa n tsare home fromhos p i t a l. More informa t ionis still neededon the concernsof mot hers of preterm infants.
The nu rse is ina pri me po s it i o n tohel p casethe facto rscontributingto themother's st ress duringthe pre t e r m LBW infa nt'sfir stweek at home. It is impor ta n t tha t nurse s wh o wo rkwit h th e s e mot he rsof pr ete rm Lawin f ants ha v e a greater und erstand ing of the mothe r s' concerns dur i n g th e infa n ts ' first we ek at ho me from ho s p i t al. The mo::'he r s' perceptio n s of conce rns may di f f erfr om wha t the nursespe rceive as the mot hers' co ncer ns. Knowledg eof th emothe rs ' concer ns wi ll fac il ita tethe disc h arge plann ing pr oc ess . Thisinform a t io n will be us e ful in meeting the needs of mothersofpr etermLBWinf a nt s priorto
and followingthe infants' di s c h a r ge fromhospital . Therefore, thi sstudy is designed to explore and describe theco n cernsof mothersof prete rmLeW inf ants duringthe firstweekfollowingthe inf ants'dis cha r ge from hospital.
Derini tioDofTe rtlls
~ Aco nce r n isa feelingof anxiet y or apprehension, a worry, orsometh i ngseenasa pr o bl e m (Goodman&Sauv e, 19 8 5). Aco nc ern may relate tothe infant, th e mother, her partner, and thefami l y.
Family inclu d esre l a t i ves andold er chil d ren.
~. A pri mipa r aor multiparawtu,aas deli v ere d a pr eterm LBWin fa n t.
~. A woman who has givenbirthto her firstviableinf a nt whethe r aliveor st i l l born.
MUltipara. A woman who has borne one or more viabl e infants.
LowBirthweigh t (LBW) Infant . Apre t erm infant whose birt h weightwas recorded at bi rth as 25 0 0gnlms or less and born at 37 weeks or les s gestation.
Very Lo W Birt h we i g ht (V L BWl Infant . Apr eterm infant who s e birth weight wa s recordedat birth as 1500 gramsorless.
CHAPTER XI LiteratureReview
ThE..' objective of thisli t era t u r e rev Lev is to identifythos e factorsrelatingto the concernsof mothers c r preterminfants after the in f a nt s goho me from hospital . Studieswhichaddressed theconce rnsof mothers ofpretermLBWandVLBWinfantswere reviewed.
Th e literature relating to the impact of taking on the rol e of mother and factors which influencethe taking on the role of mother were also re v i e we d.
Thereviewis organizedin the following sequence which relates to the conceptual framework: thefmpac t;
of taking onthero l e of mother (role taking, role strain), fact o rswhich influence the taking on the role of mothe r of a pretermLBWinfant (roleexpectations, rolele a rn i ng ) , and theconcerns of mothers of preterm LB~;infants (role-set).
The Impa otofTa ki ng on theRoleot Mother 'Recoming pare nts isvi e wedas a critical paintin the developmentof a couple'slife together. rne assumptio nof a parenti ng role is one of the demands andcha l lengesfacedbyparents. Taking on ane w role
10 involves a change in expectations of self and others, a change in relationships,and the le a r n ing or updating of skills (Meleis, 1975). Duvall and Mi l l e r (19B5) emphasized that becoming a parent brings other responsibilities such as settlingdown to family life, stimuLatij nq and directing the infa nts'development, and endeavoring tomeet individual and family developmental tasks.
There were twoschoolsof thought relatiilgto the impact of becoming a parent. Some researchers viewed taking on the parentrole as a crisis (Broom, 1984;
Ho b b s &Cole, 1976;Russell , 1974). In fact these rccce rchc r s viewed the whole area of familyand marriageas a crisis. Rus sell (197 4)defined crisis
"as ach a ng e in self, spouse, or relationships with significant others which the respondentdefinesas 'bo t h e r s o me'" {p , 295). Hobbs and Co l e (1976 ) and Russell (1974) found significantassociationbetween the quality of spousal relationshipsand the ease or difficulty parentsexperienced in becomingparents.
Hobbs and Cole (1976) stated thatmoth e r s reported significantly greateramounts of difficul tythandid fathers. However. none of the variablesstudiedwere
11 found to besig n if i c ant in.identifying degreesof difficulty mothers experienced in taking on therol eof mot h e r. The authors suggested that furtherresearchis nee d e dto explore the variables that impact on becoming a mott:l!r. Otherres e arcbevs viewed parenthood as a normalcr i s is or a devel opmental event (MillerSo SOllie, 1980;Rossi, 1966). Ros s ipointedout tll'lt the paucity of educati onalprogramsfor parenthood ma y explainwhy parentsexperience diffi cultyin taki n gon pa r e n t al roles.
When the child isborn . parentsare forc edto ad a p t from an adult centered dyad to a child focu sed tr i a d (Broom, 1984). Theparents must learn tobalance the i rown and family needs with the child's
requirements . I tmay be morcdifficultfor parentstomove from.;;.dyadic to a triad ic relationship. Therefore , tension may occur in rela tionships . These parentsmay betheon e s who need support.
Caplan (19 6 0 ) and Kaplan and Hason(196 0 ) were pioneers in research relatedto preterro infant s. Thoy foundth.at the birth of a preterm infant pr-eac Ipltiaued stressand produced a potentialcrisissituation, and
12 whenthe infa ntwas pre termandcr i tica l lyil l , the str es s event; caus e d acri s i s situationfor pa r ents.
Kapl an and Mason found that mot he rs vez-eanxi o u s when the i r inf an t. s camehome. The y worr i ed abou t the small nessan d frag ilit y ofthe infan ts.
Goodman and Sauve (1985) emphasized that the bi rth
of apre t erm infantinv o l ve d "a doubleadj us t me ntfo r senepa r ents -becoming a parent an d havi ngto cope wi t ha cri sis situation" (p. 239). They suggested th a t the stressescont i n ued after the infants ' dis charge whenthe mot h erstook onthe deman d ing task of full- time care of the infan ts. Je f f c oat e et a1. (1979) suggested thatpreterm bi r th could providesufficie nt stimUl usto developintoa cz-Lafs be c au s ethe mot h e r s ' selfesteem is threate ned. Mo thers viewe d their ro le as a"gi ver" of love and essentia l car e. Motherswere de la y ed in pe r formingroleexp ecta tions be caus e of immediatesepa ra t ionfromtheirinfant s.
xr rcnsc et er. (199 2)id e nti fi edst ress o rsas reportedby mo t hers of ho s pitalizedpr ete r m infa nts.
The in fants we i ghed 1800 gr a ms or les s . Mot h e rswere interv i e wed on fo u r occ a sions whilethe inf antswere still inhospita l. The first int e rviewoccur red withi n
13 96 hours of the de li veryand the last inte r vi ew took place one week pri ortodisch a r ge. The sa mple size decreasedoverthein t e rv i e wpe r i o d as shown: 36 , 25, 16, 8. The mothersreported emo t i o na l issuesas negative stressors (anevent seen as unde s irabl e ) acros s al l four inte rv i e ws. They expressedfe e ling s of guilt abouthavinga pretermbirth and fe lta senseof helplessness. Th/;l infa nt s ' health st a t us was consid eredane g ati vestres s or duringth e first th ree interviews. Thest r ess was related to the unc e r ta in t y cf theinf a nts ' survi val , the possibi l i tyof complicati ons , and the infa nts ' long te rmpr o gnos is.
Separati on of the infa ntsfromthe moth e r swa s the mos t frequentlyci t e d negativestre s s or dur i ngth e first in t e r v i e w and rema ineda stressor durinq th e second interview. The stres sors incl udednotbeingabl eto holdthe infant s ,beingdischarged wi thou tthe in f ant s , and having to leave the infants in the nur s ery after theyvi s i te d. Als o, motheringconce rn s we r e repor te d as negativestre s sorsduringthe lasttwointervi ews. During the last interviewmothersexperi en c ed stres s as s oc i a t e d with anticipa tinghome respons i bilities following the inf ants'discharge. Posi t ive sereeeors
14 (a n even t wh i c h themothers perceivedasst r e ss f u l but viewedas posi ti ve) includedcommunicationwith nurses about thein f ants' he a l t h status. Moth e r swe r e unsure of how the nurses wo ul d react tothe i r questions and concerns. Positive stressors related to the infants' he a l th status includedpositivethi nk ing about their infants' sur v i v al even though theirinfants' he a l t h was precar ious.
Br oot e n et at • (1988),Gennaro (1988 ) , and Ge nn a r o , Yo rk and Brooten (1990) inves tigatedthe emotionalresponsesof mot hersofpr e t e rm infants.
Gennaro (198 8) examinedthedifferencesof anxietyand depress ionin mothers of preterm LBWin fantsand full- te r m infants one week postpartum and each week forsi x we e ks thereafter. Mailed questionnaireswere completed by 16 mothers ofLBWinf ant s andten mothe r s of term infants. Qua l itat i v e datawere alsocollectedon what eacn weekwas lik e for themothe rs . Gennaroreported thatthe mothers of preterm LBWinf a nt s had heightened anxiety and depressioninthe first postpart umweek. Fo r the ne xt six weeks therewas nodifferencein anxietyand depression exper-IencedbyeLthez-groupof mothers. Al t houghnot sta tisti ca llysignificant, the r e
was a rise inanxi e t y scoresonthe fift h week for ec t ne xs cf prete rm in fa ntsas opposedto we ek fo u r for .ot h e r s of fu ll- termin fant s . Mothnrs re po rted sle epless nig h ts we r e impact ingon theiradjus tment in theirrole s. Fam ilymembers who hadcome tohelpha d now left. Gennaro(19 8 8 )commentedthat at abou tone month postpartum "the honeymoonwa s over and reality ha d set in" (p . 84).
Brootenet e L, (198 8)measuredanxie t y , depression, and host ilityin 47mothe rt; of pr-ete rra Vl.IIW inf ants. Th e infa nt s werefreefro mser i o us hCiJlti.
problems . Thedatllwere col lected at the timeor the inf ants' dis chargelin d ag ai n when the infa nts wereninc mont h sof age. Broote netal. fou ndtha t the mothers wereaorc de p r e s s e d and anxLcu sprio r to the in fants' dis c h a r g e than the y wer eatnine mont hs. Multiparas weremo r e depressedtha nprimiparasprior toth e in f ants' dis charge. However,therewere no diffe rcnc e:-;
in anxietyand hostility expe rie n c e d by primip aras and mu lti pa r a s at the time of th ein f a nts' di sch argeor whe nthe infants we're nine months old. ThemuLt lpa rcuu womenhad previo uschildcar eexperience and were pos s i bly cvervheLmed withthedemandsof carin g for
16 anot her ch i l d especial lyonewho may be vulnerable.
Another finding was tha t mothe r swhos e infants hadlon g hospital stays, that is a meanof 51 days, were significa ntl ylessden ress e dat disch arge tha n moth ers of inf a nt s wi t hshorte r hosp ital stays . Br ooten et at, (1988)sugg estedthat thi sma y be duetothemothers havingtime to gain emotional and phys i c al equ i l i br i um beforethe in f an t s we nt home. Ma te r na l age, education, and marital status had noef f ec t on th e amo untof anxiety, depressio n, and hostility experiencedby the mothers.
Gennaroet al . (1990) comparedanxietyan d depression responses of 27mo the r s of VLBWpreterm infa n tsand35 mothers of LBWinfa nts . Da tawp.re collected from thetime of deliveryuntil the inf ants were fivemo nt hs adjustedage. sc e hersofVLBW infants experienced hi gher lev e lsof anxi ety and de pre s s i on fr ombirthup to the fi rst two mo nt hs. Th e VLBW infa nts were considera b l ysickerthan the LBWinf a nt s andth i s might exp lain the mothers high e r le vel s of anxietyand depression. The highest lev els of anxiety and de pr e s s i on for all mothers was the....eek foll owi ng delivery.
17 Gennaro, Grisemerand Musel (1992) examined expec ted ve r su s actual lite-stylechangesof 60 mothers of pretermLBWinfants. The motherswe r e interviewed eightti mes, one inperson, and subsequentlyby telephone. The interviews occurredon- week following de l ive r y , at infant's discharge, and each mo nth unt;I1 the infants weresix monthsadjustedaq e, Forty-six pe r c entof the infantswe nt home on an apnea moni tor.
Mothersreported thattheygot less sleep and were more ti r e d than they expected to be following the In runt.s' dischargefromho s pi t a l. Fiftypercent of th e mot.hor-rt reported experi encingless t::ime for themselves, bcinq moretire d, and having more responsibility following the infants ' discharge from hospital than th e y dill follo....ingth e infa nts' delivery. 'rnexcwereno differences in expectations of lifestyle cha ngo!;
between primiparas and mul tiparas. However, they stated that the mothersseemed to accept thesechanges aspart of being a mother of a preterm infant.
McKim (inpress-a, in press-b) studi ed the info rma tio nand support needs of 56 mothers of h iqh- riskpr ete r m inf ants. Th e s e infa ntswere followed by th e Newfoundla nd and LabradorPerinatal j'o Lfcv-iu p
a.e Clinicafterthe infants' dischargefrolll.ho spital. The data were collected duringthe mothers' firstvisit to theclini c. She reportedthat 48\ of the56moth ers in her sallple found that the fi rs t week at homewiththeir pr e t e rn infants wasdifficul t . When questionedabout what th,~yfo und difficu l tab o u t theweekthemot hers' responses centeredaround the infants beingborn pro ter m. How pretcrmthe in f a nt wa s . the seriousness of the ill ne s s, andapro mpt visit from the Pub l ic Jlcal thNursewere fact o r s in whethe r the mothers found the firstweek diff i cult . McKim found a relationship betweenthe in fa n ts' ap nea episodes when in ho s p i ta l and thereported di ffi cultymothers had during the firs t week ofthe in fa nts' dLs char'qe from hospital.
acse mo t he rsexp ress ed anxietybe c ausenow theyand theirpartners wereon their ownwithouthelpof th e hospitalnurs e s . Somemothersfeared thattheir infan tsmi g h';':die .
The studi e s re v i ewedher eseem to indicatethat the birth of a preterm infa n t canha v e a positive and/ora negative influence onthe mothers. Ho we v e r , most of the researc he r's have notment i o n e dwhetherth e mothers had professi onalorlaysup po rtar:lwh e ther
10 theyhad participate d indischarge teaching. Al s o , the mother-in f antint era c tion pr oc e s s has no t be en di scus sed . Th ese fa ctors mayhav e apo s i t i v e or ne ga tive inf l u e nce onthe taking on of the ro l e of mo t herofa pre term LBWinfant.
FaotorsWhich InfluenceThe TaJl:ing on the Roleof Mother of a Preterm LBW Infan t
The easewi thwhi c h ectmer-s of preterm LBWinfants assumethemother ro l e dependson several facto rs. Th e s e factorsinclude: moth e r - i n f ant in t e r act ion , tha mo t h e r s' teac h i ng andlearningneeds, and themothers' supportnee ds.
The lit e rature revie w,pertainingto mother-infant interaction , incl udes the effects of earl yde li v e r.y and infantbeh av i or on thetaki ngon of the motherrole.
Moth e r s ofpr ete rrnin f a nts have uni qu e learningneeds , th ere fore, the lit erature re l a t i ng to the impactof pre-d i s charge andpo s t - d ischarg e tea ch i ngontheta king onof themotherrolewas examined. Al s o , the inf o r mal and forma l su pport needs of mothersof preterm in f a nts wer-e exptere e•
20 Mot her-In fant Interact ion
Klau s and Kennell (1982) sta tedthat th ebo n d fonned be t we en ach ild and pare nt sisth e st ronges t of all hu ma n tiesand 10cruci al fo r th e child'ssu rviva l anddevelopmen t. The birth ofinfantswho requi r e d inte nsiv e careoverwhelmed the mot herswithemotions and gr i ef as they deal t withthe lo ss of an id eal pregnancy (Ste e l e , 1987 ) . The fragilityor thepret e rm infant, and the ne e d for expe r t me d icaland nursi ng car e ca used immedia t e separ a ti o n, and dela yed attachmenttothe infant as ....el l as tak ingonthe mothe r role (Klaus&Kenne ll, 19 82).
Ru bin(1984) dete rnined that one of the ta sks of pregnancyis "bindIng in" to the child. Rubi naffIrmed that "it isthe fetal moveme nt s thatbegintotra ns f o rm thetheore t ica lch ildto a real. livingchild "(p. 62).
Rub i n st atedtha t it wasat this time the mot he r beg an tofantas ize aboutthe idealize dchild. Thiswas the beg i nningof the att ac hment proces s. whi ch incr e a sed ove r thene xt mo nt hs ofpreg nan cy .andinte nsified fo ll owi ngthe birth of a fu ll-term infant . When the bi rthwa spr ec ern, Rubinemphas i ze dthatthemoth e r ha d
"avery incompletedeliverywithaninco mplete in fa nt"
21 (p.104). The mot he r becam ea par e nt beforeshe wa s rea dy to takeon the mother role . Thepr eterminfan t didnot meet withherimage or expe ctations of a newborn . Th e pretem in f ant 's beha v io r and appea rance are notwhatthemothe r usua l l yexpects,andthus interfereswiththemothe ras su mingher rol e.
Je f fcoa t eet a1. (1979 ) in te rv iewed two gr ou ps of fami lies - pare nts of preterm LBWinfants and acontrol group of parents of fu l l - terminfa nts, about role percept ionan d re s p on s e to st re ss. The parants of the pre t ermLBWgrou p con s isted of 17 mothe rs and 13 fath e r s . Thecont ro l gro u pconsistedof17 mot hersand 12 fat hers. Th e pare nts.were in terviewed in their homes , andsepa ra t e lywhere possible , whe n thein fa nt s werebetwe e n si x and twent ymont hsof age. Whereas, the time of bi rth for the cont ro l grou p was a joyful eve n t, the pr e t e rmgroupofpar en t s expressedseveral emotions. Fiftee n paren t s of pre te r minf a n t s expressed bei ng upse t and shockedabou t the preterm delivery.
Manyparents fel t a se nseof fa il u r e , shame, or guilt at prod u cingapre termbab y. Some parent s were shocked by th e appear a nc e of their ba by , des c r i bing them"a s lo o ki ng li k eara t " or "ski nn e dmonkey ". Wh e n the
infant ves hospitalized,the mothers felt helpless and frustrated 'oIith their ro l e . Eight of the mothersof pretermLBW infantsreported delay in feelings of love and "realwarmth" for two monthsorlo ng e r. These mothers reported that they felt numb or as though they were ca ri n g fo r some o n eel s e's baby. The demandsof the baby and delay in attachment"c a u s e dsome mo thers tofeel tota lly in a d e q u at e in their mother role1 several repo r t e d at timesthey feltviolenttowards the child" (p. 142). Nineofthese ve n t eenmothers of prQtQrm LBW infantsstated that they didnotfeeltha t the infant belongedto themuntil after the infantwas discharged home. Only50l at the primiparous mothe r s of preterminfants feltcon f i d e n t in takingon their mother role when they tookthem hcme,wne reas experiencedmothers expressed confidenceinth eir role.
Bidder,CroweandGray (1974) exami n ed 20 mUltipa ras' attitudestotheir preterm LBWin fa nts as comp a r e d toth e i r attitudes towards theirpreviously born full-term infants. They found significant differencesbetween the mothers' perception of the pretermand term infants and the idealizedchild of theirpr egnancy. 'rhe mothers described the ideal child
23 as mo recalmand conte nted tha n eitherof their ch ildren who wereborn full-term or preterm. Mo t h e r s were anxious followi ng del i v e r y and agai nafter the infant wa s home . This anxietyimpacted on the mother role: the mothersviewed the i r pr e t e r m infa ntsas weak, andth e y wer eanxious handling the i r infan ts.
Mc Ha f f ie (1990) studied 21 mot he r s' perceptions or the ir adjustmentfollowing the i r preterm births. The dayprio r to discharge two moth erssaid that they did not eeei. ready to take theirinfa nts home. Many facto rsemergedwhichrela ted negatively totheir fe e l ing of readiness. The two mot herswho expressed tha t theywere not feeling readytota k e on the mo th e r role at ho me showed"di f fi CUl t y establishi ng and maintaining relat io nshipsand he l d veryina ppro p ri a te perce pt i o ns of their bab y" (p. 10 ). Thesetwomothers had concealed the i r feeli ngsofnot feelingre a d y to take theirinf ant s homefromthestaff. When the infan tscamehome the mot hers we r eel a t e d but exp re secc feelings of in s e c urity andla cki ng confidence in their mothe r role. Many mot h ersreported howamazed th e y we r e athow much the infantscried. Themothers noted th a t "theyhad not ga ineda truepicture of thisaspect
2'
ofthein f an t s' behaviou r in a shelteredenvironmentof the hospital" (p. 8). At firstthe mothers interpreted thein fa nts' cr y i ng as a re s ult of theirinability to und er st a nd their infant. However, ifthe infant s persistently cr i e d,th e mo t he r svi e we d the infantsas demandi ng. Mc Haffiesuggested that the inte ractio n betweenmothersand infants, as we) 1 as themot h e rs ' perception of readiness to take on the motherrole at ho me, sho u l d betaken in t oco ns i de r a ti onpriorto the infan t s'erscna r q efrom hospital.
using theInfant Temperame nt Questionnaire (ITQ).
Medo ff-Cooper an d Sc hra e d er (1982) found s igni fi c ant di fferen cebetween the temperamentsof 26VL"W in f a nt s and thest a n d a r d popu lat i onin the areasof di stractibility , adaptabil ity, approach, withdrawa l , and mood. Me do ff - Coo pe r and Schraeder fou nd that VLBW infants "were diff icultto soothe (low
distractib il i ty ), less adaptable, negat ive in mood, and withdrawing" (p. 71). Theyconcludedthat "VLBW seems to be as sociated withdifficulttemp e r ame n t ininfancy"
(p. 71 ). They foundthat infantswith low soothability and negative moods were more likelyto be respondedto in a ne g a tiv e ma nn er by the moth er. These findings
'5
illust r a te the needto en h a nce themothe r- i n f an t rel ati o n shi p. Mothers can be assistedto recognizethe pre t e rminfa n ts ' be havio ralrest>~,lsesandlearnto iden ti fy activitiesto soothethe infan ts.
Zahr(19 91) inves tig a ted th e relations hipof 49 mothers'fe el i n g sof con fidence, maternal behaviors and skil ls, and in fa nt temp era ment. Mate rnalconfidence was defined "as the perception mothers hav e ofth e i r abilityto carefor andund e r s t an d theirinf a nt s"
(p.280) . Themothers we r e fron.lo wsoci oeco n o mic backgrounds,andhad ameanof10.5 yearseducation.
Maternal behaviorswer e ev al uate d whi lethe Lnrent.s we r e inho s p i t a l. The remainingdata were collected when the infantswere four and eight mon ths ad j us ted age,duringfollow- upvisits, usingstandardized ins t rumerts. Thest Udyrevealedthat the mothe rs' education, social support, pre v i ou s infantca r e experience, and familyincomecorre latedpositively with the mothers' confidence. Subjects who were confidentinth e mother rolepe r-ce Ivod thei r infant s as more predicta ble . less diffiCUl t . and moreadaptableat bothtest i ng periods. Therewas no relationship round betwe en the infants ' ris k stat usandpercelved
2 '
conf i de n c e sco res, with the exceptio nofth e presence and severi t y of int r a v e nt r i cu l a r bleed at four mo n t h s.
zeru-(1991) sugges ted that these infa ntswereprobably sicke r and les s ale r t than the irfull - t e rm coho rts whichcouldha v eaffect e dthemothers'percep tionof con fi denc e. Therewas al s ono cor relationof mate rna l confide ncewith observedmat e r nalbehaviors inthat mothers who appeared to be comfo r tablewith the ca re of the i r in fa ntsdid not necessa rily pe rce i v ethe ms elves as con fiden t when aske d .
TheMothers' TeachingandLearningNeeds seee on s andLAvi s (1985) emphasizedthatupon di scha r g e fro m ho spit...l, parentsofpretermin f a nts ofte n experien c e "t hesamefeel i n gs of fail u re and inc ompe t e n c e tha t they enco u nt e r e dwhe n the infant was firstbornn(p. 181). The s e fe e l i n gs ma y beallevia ted if th e te a c h ing and learning ne ed s ofmo t h ers of LBW infantsare eee.
Mc Ki m (inpre s s-b) surveyedtheinformati on needs of 56moth ers of prete rminfants. Altho ug h morethan 80\ of the mo t he rsre c eivedinformation on inf allt feeding andbath ing.mc..reth a n50\ of the moth e rs would ha ve likedin for mati o n on infant colic, noisy
27
breathing, spitting up, and russy periods prior to the infants' discharge from hospital. Fift y percentof the mothers wanted informationon how to recognize signs thatthe infant was not well. other informationthey wanted but had not received included: taking infant outdoors, infant behaviorI diaper rashes, breath ing patterns, and how to give medications. McKimfound that 25 of the 42 mothers who had specifi c informat i on neeoe ,descr i b e d that the first week athomewith the infant;~a sdifficult.
KennelandLott(1990) reportedthat parents of pretem infantsex p r e s s e d a need formorc in f orm ati o n and teaching when their infants went home from hospital. They found that, at the timeof di s cha rge and when the infants went home, mothers were experiencinggrief and they worriedi fthei r in f a n ts would survive . ThUS,they questioned whetherthe mothers were ableto assimilate allthe information priorto the infants'dischargefromhospital. The mothersvi e we d their infants as differentand sic ke r tha n termin f a nt s and still worried aboutth e i r breathing patterns. Kenner and Let t (1990 )stated that the move of the infants fr om aco n t r o l l e d env i ronmon t
28 to a les s cont ro lledenvi ronm en t, and lac k of pos i tive reinforcementfromthei r inf ants , may havecau s ed the mothers tohav e doubtsabou t the i r care ta kingskills.
Theyemphas ized tha t nu r s e s needto prov ide afl exible and individ u a lized educa t i ona l prog raminord er to reduce mothers' stress , ena bl i ng them to cope when theirinfantsaredischarged . Censull o (1986) suggestedth at counselling, te a ch i ng , and follow-up afterthe preterminf ant s' dischargecan as s i s t parents ingaining a senseof mastery and thUs, increase the ir sel f co n fid e nc e and enha nce the i r parentingsk ills .
Br ooten,Gennar o , Knapp, Br o wnand York(1989) exami nedthe pre-dischargean dpost-di s cha r g ele arn ing nceds of parents of pretermVLBW infants. The sample incl ude d 36 mot hersand39 infan ts (three sets of twi ns ). Themotherswe r e predom inatelyblack, unmarried,and of lower socioeconom icstatus. In f a nt s requiringcomplex carewere el iminated from thest udy.
Te a c h i ng and home follow-up werecon ducted by Clinical Nurse Specialists. Follow-upvisits we r e made at one we e k, one mo nth, nine, twelve, andeighteenmonths. Post-discharget.e ach.inqne e ds included thene ed for in f o r mat i on about infant feedingand current in f a nt
29 heal th problems . Breastfeeding mothersneeded int en s e teaching. Twenty-sixpercentof the infant s were re- hos p i t a liz ed during the eighteenmonthsof thestudy.
Other major areas of teaching inc ludedinfant growt h anddevelopment, and administeringand monito ring me dications. Teachingregarding thehome environment includedthe needto maintainadequateho me temperatures and toobtaina flashlight incas e of power- failure . Parentsneeded con sta nt reLnro rcc n c nt that their in f a n t s ' growthand devel opmen t sho ul d be as sessedusingthe correctedage andno t as a t.orm infant. Parentsworriedconstantly aboutthe i r infants' weightand needto "c a t c h up". Post-di s charg e te a ch i ng relatedto in f a nt feeding involveda moan of eight sessionsper family, while the usualt.e ac hLnq protocol forVL8Win f a n t s provided onlyone ses sion. The stu dy findings emphasized the needforco ntinuity af care and follow upteachingfor the s e familie s .
Harr isonand Twardas z (1986) studiedtheeffec t s of a structured teaChing programon mothers' perceptions of andin t e r a c t i on with their pretermLOW infants. Thi r t y mothers whosep ret.ermin f an tswe rein intensivecare were randomlyassigned to one of thre o
30 group s : control , ins t r u ct i o n, and atte ntio n. The interventionsoccu r red ....hen infa nts we r e14. 6da ys old.
Mothers inthecontrol group received suppor t and routi necar e fromthenursing sta ff . The mothersin the instruc tiongroup rece ived routi ne careas wellas an one ho ur teachi ngsessionon thepr etenn in f a nt sI
physicalandbehavioral characteristics. The researchersgavethe mothe rsinthe attentio ngroupthe oppor tu nitytodis cus snon -m e d i c a l concerns. This intervent ionlastedone hour. No significant differences werefo un d amongst the thr e e groupswhen maternal percep t ionsofthe i r infa nts were eea sueea when the infant was inhospital and again whenthe in fantwas home approximately one month . ANe on ata l Perception Inve ntorywas administeredprior to intervention for the instruction and att en tionqroupe..
1'Ilso, no significantdifferences were found in mater na l behaviorswhe n measured duringthre ehome visits. This findingdid not support Harrisonand 'rwa rd os a es hypotheses tha t mothers of pret ermLBW infantswho receivedstructured te a c hing about their infants' physical andbehavio ral characteristicswould demonstratea more positivepercep tio nof their
Jl
infants, andmor-e positivematernal beh av i ors than those mothers who di d no t receive structuredtea c hinq, The outcomeof thisexperimentalstudy is inconclu s i v e . The findings suggestthat either a one time tea c hi ng intervention may not be adequate or that the neonntaI our:;,;.=>were al r e a d y providing ad e q u a tia teachingand support. Ot he r things toconsider woul dbe thetiming of the te a ch ing .and the amoun t oftimesp entonthe intervention .
Cag a n andMeie r (1 9 8 3 ) ev a l u a te d thodi s r:ha r q c pl a n ni ng tool th e y had developedand pil oted in 19 -/').
There were two st u d ygroups : 35high -r i s k in fan ts for whom discharge pla nni n g was notsys t e mati c and str uctured, 40high-ri sk infants who se disch a rge planningwa s coor diroa t e dusin g thed Lecb ar-q e pl anning tool. A que st ionna irewas ad mi n isteredtwo to fou r days fOllowingdischarge. The discha rgepla nning tool facilitated th e transiti on fromho spitalto ho meand provedto be an eff e c t ivetool for sta nd ardizingand documentingthe dischargeplanning proce s s. The most valuable findingwasthat parents felt tl1atth ey ....er e il
vital partof the discha rgeplanningproc essandthis helped relievetheanxie ty wh ich accompan i ed dinch ar-qe ,
32 Cagan andMei e r (1 979 and 19 8 3 ) did no t def i n e the te rm
"high-ri sk in f ants " bu t did describe them as prev ious ly ill infants who were car e dfor inthe special ca r e nursary and for whomsurviva l wa s no longera thre at.
Ca g a n (19 8 8 ) str ess e dtha t sta n d a rd di s c h a r g e pla nn i n g tools are only on emethodof smoo thingthe tran s it i on from hos p ita l tohome. Nur s es should strive towean parents fromtheinte nsive ca r e un i tprio r to the in f an t ' s di s ch a r ge by fosteri n g parent-nu rse interde pendenc e . The par ents ca nlearntodepen d on themselvesand make decisions while us ingnu r s i ng staff as a resource. The parents wiil take theirinfant s ho me feeli ng more secu reabout th e i r abilities.
The Su ppo rt Ne edsofMothers of pr e teon tRW
rnrants
It isa po licy in Ne wfoundl andthat a Pu bl i r He a lth Nurse vis i t newmo the r s....ithin the fi r st we e k of the infants ' Jischar ge fromhos pital to as sessthe family need s and to provide su p p o r t. Mc Ki m (inpress- b) in de s c ri b i ng th e support ne ed s ofthe 56 mo the r s in her study found tha t althoug h93% of the mot he rs received(I vi s it fro mth e Pub l ic HealthNur se, only61%
ofth e s e mothe rswere vi s i teddur i ng the firs t week r>f theinf a nt s' dischargefromhosp i t a l. Mc Ki mfou n d that
J3 there wasadelayin thePu bl ic HealthNur s e s ' visits if theinf ant s had beenveryi l l in ho s p ital. The motherswhowerenot vi site dduring th e first wee k by the Pubic Health Nu r s edescri be d the fir stwee kas diff i c ult . McK i m reported that 93% of the mo thersha d at least one sourceof lay support. Thepartne r wa s na med as th e prima r ysourc e of support by 75% of the mothe r s , (ollowedby the mothers' own mother (21\).
McH a f fi e (198 9 ) st udiedthe informal and ro e-ma r su p p ort sy stems of 21mothersof VLBWinfan ts. The mother s we r eintervi e wedonsi x oc c as i o ns;thr e e t.Inoc duringtheinfants'hospita lization , and one we ek, month, an dthr e e mo nth s followi n g the infants' di s cha r gefromho s p i ta l. Fo ll ow i n g the in f an t s ' dis cha rge16of the 16mot hers who had partnersfoun d the mthe mostsupp ortive . Thepar t nerswere e ap.ecda Lly hel p ful inthe ar e a s of shar i ng in decisionmaking, ho u seho ld chore s ,and decreasing anxietyduring tho fi r s t we e k. Initially ,when the i r par tnersexpressed fe arof ca ri ng fo r the infa n t s themot herssta t e dthat they app re ciated the help wi thothe r tas ks. Thisgave them mo r e ti me tospendwiththe inf ants. A few mot hers not e d tha t theypr e f erre d to ten d to the infant
34 ene e e erve s, Fo llo wingthe initial ad j us tm ent to being horsewiththe infants ,most ofthe mothe rs sa i d that they felt depresse dand tired. Theyapprec iated as s i stance Crollthei r partnerswith feedingthe inf a nt s ' and incari ng for the infants whe ntheir crying persi sted . Most of the mothersstated that the y didnothave asmuch time to spend withth e i r partners as they wouldhave liked. The y re p o rte d th a t the partne rs' supportprevented the de t e r i o r a t i on in the i r t-eLat.Lone hfpa , Tenof th e mothers found theirown mothers supporti v e fol l o wi ng delivery be c au s eth e y ex p ressedconcern for theirdaughters and notjust conce r n for the inCan t s. El eve nofth elItothe r s had some assistancefrom the irownmothe rs dur ingthe inf ant's first days at home. Relative s were suppo rtive in itia llyfallowingth einfa nt'sbirth and aga i n follo....ingthe disc harge of the infant. Supp ortfrom rel at i veswanedduringthemo nt hs that foUowed, when themother wastired, anx ious and depress edfrom conti nue d demands of the infa nt. Mc Ha f fie sta t e d that the relativesappearedtoha ve difficulty in knowing how to be auppo z-tLve , Mc Haffi e repo rte dth at five of the mot hersha d not be en vis ite d duringthe first week
35 by th e he alth visitorandtheyexpressedanger . Man y of the motherswho we revis ite d found the visitwas shor t . Thesemothers were not satisfiedwith the in forma t ionandsupport gi v e n bythe nurse. They indicated tha t the y wouldha ve likedmo r e supportfrom the nu r s e suchas l istening andthegivingof accurate inf o rma tio n.
In summary,the litera turesupportsthat fa c tor s su c has mother-infantinteraction,teachi ng and disc hargepla nning, and social supportcan impact on the moth e r's abilit yto car e for her infa n t andth e anx i e t ies sheexperienc espostdi scha r g e as she ilssumc s thero l e as caretakerfor a preterm LBW infant.
Pre t e rm delive ryand su bseque ntseparationof the mothe r and infa nt re sul t s in di f f eren t expe c t a t ions tha n themotheranticipatesand delays the attachment pr o c e s s . Thisdelays the taking on ofthe mother role , causingth emothe r tofee l ina d equateinhe r role.
Also , the pr e t e r m infa nt 'stempe ramenthasbe e nsho wn to af fec t mot her-infan t interaction ne ga ti v el y . Flexibl e and indi v i d uali z e d discharge teaching plans may help reduce th e mother's anxiet yupon the infa nt 's disch a rge fromhospital. Thetak ing onof themother
36 role when theinfa n t is home,canbe fa ci l ita t e d by sup port fr o m partne rs, family, andheal t h pr o f e s s i o nal s.
Concern sof Mothers of Pre term LOWIn fan ts
Adams (19 6 3 ) survey e dthe concernsof 20 first time mothersof preterm LBW infan tsand 20 first time mot hersof ful l -terminfants. Adamsdi dno t make re f e r en c e tothe meangestationa l age ofthe infants altho ug hshe did definepreterm infa nt as weig hing und e r 2500 grams. Theme a n hospita lstay for all infants wa s fo u r days. The ra ng e of hospita l stay was thre eto twenty-onedays. There f ore , one would assume th a t th e s eLBW infantswere a low-riskgroup . The mothers we r e interviewedpriortothe mothers' discharge, at one week, and fourwe e ks foll owing the infants ' discharge. Themo th e r s of LOW infantsin this studyhad a higherlevel of educatio nthanmot hersof full- terminfants. Ad ams wa s oneof the firs t researche rswho definedconcernsand she referredtoa concernas an areaof "special intere st orwo r ryto mothersas indicatedbyques ti onspertaining to particu larar easof care " (p. 72). Thesemothers
"
seeme dto have access tollIore informati o nand sought th e nu r s e s ' assi s ta nc e regard ing the ca reof their infantsat horne, nothgr oupsofmothers hadsinlil ar ki nd s of co nce r ns. Fe eding, bathi ng , an dcryin g wo r e the maj or concer n sdu r ing thefirst week. At theend offou r we eks , feedi n g andcryin g we r e aga in citod as the ma j o r conce r n s ,howe ve r. bathing was ofmi n o r concern. Other catego riesofcon cerns forbot hgroups of mothe rs incl u ded rashes , sle ep ing ,hic cu ps, weig ht, and ta k ing the infan t outof doors. Hi c c ups ca used the mo t her sof LBWinfants anxi e t ywhenthe inf an tswC!r e home for one we ek .
Goodman an d Sauv e (1985)reported thtl t 30 IItothcr s of high-r is k inf a nts had si milarconcer nsto 30 aot.nc r u offull-t erminfants, twoan dsix wee ks followin gthe infa n ts' dis cha rg efrom hospital. The high-r i s kinf.-ant referred toany newbo rn who requi redho s pi t alizat i on in the Neo natalIntensiveCare unit. TWen ty-sixorthe thi r tyhigh-ri sk inf a nts....er e pretiere infa nt s. A con cernwasdef i ne dbyGood manand Sauve (1985 ) "as <l
feelingof anx i e tyor appr ehens i on,aworr y, or so me th i ng seen as aprob lem" [p, 236). Th emo the r s ra t ed conce rn s rel atedto infant care and behavior , the
38 mother, he r spouse, and otherch ildre n . Bothgroups of mother s expressedconcer ns regardi ng feed ing , sl e eping , attach me nt,gas t r o- i nte stinalprobl e.m.s,rashes , hus band, andself. onl y the mo t h er s ofhig h - ris k in f ants cited theinfan t s 'appe a rance asa concern . Thediff e r enc e in thecon c e r ns of both grou ps was sta t ist ica ll y signlficant in fourar eas:feeding, sleepi ng , appearanc e ,and atta c hmen t. Feeding co ncerns of the high- r i sk motherscent ere dar o und the enc u nt of feedi ngand the infant s ' wei ght gain. More mot he rsof hLqh- r-Lak inf antsthan mo t he rs of full-term inf ants express e d conc e rn reg a rd ing the infan t s 'sleeping pat terns . Twoof themot-he rs wer e co ncer ned that their infan t swoul d cease tobrea t h while sl eepin g. Forty perc ent ofthe mot h e rs of high-ris kinfants felt that the i r infa nt s did no t know them 28 days after th e infants' discha rge fromhospital, as compa red to 17% of th emot hers of ful l-term infants . Go odman and Sauve repor ted that itusually wa s n' t unt il thehi gh- r i s k infan tcame home th a t the mot he r felt theinfant was really hers . The concernsof bothgr o ups ofmothers Je c r ea s cd at sixwe eks . However, mot h e rs ofhigh -ri sk infants te nded toexpr ess mor econcernsthanmot he rsof
"
full-teI'1ll infants at the six week interview.
Gennaro,Zukowsky, at a L, (1990)interviewed65 mothersof LBW infantsinhospital, one ....eek foll owi ng dischargefrom. hospital ,when the infant was 40 weeks gestational age, and again eachmonthuntilthein f a nt reachedsix monthsadjusted gestational age. Mot her s were asked at thetime ofeach interview"what are your concerns rightnow"?(p.460). Mo s t of the conce rn s
were raised the week followingbirth andone week following thein f a nt s' discharge. The infa n t s 'health remained the majorco n c ern for the duration af the study . Breathingpatternsandmedicationswerethe most frequently voicedconc e r ns related to theinf a nts' healthone week following discharg e . The noxtmost frequent category of concernsat oneweek post discharge was using apneamonitors,the n the weightof the infants, fe l lo....edbythe infants'development. Infant developmentwas the second most frequentconce rn when the infantswer e thr ee months arlj u s t ed age. A' this ti me the mothers were starting to expect their inf antsto achieve adevelopmentalmilestone of a fi ve tosix monthold full-terminfant. Concerns about maternalcareerand child care did not surface until
40 later in the study when the mother beganto worry about her plans for the future. Therewas not a significant difference in the numbe r of overall concernsvoicedby primiparas an dau Ltiparas or....he n concernswere grouped ac cordingtothe in fants' sex. When groupedaccording to the levelofeducation,motherswithmoretha n a highschool educationvoicedmore concernsthan thos e mothers withles s thanhighschool education.
Bu t ts et al. (1988) monitoredthenumber of tel ephone calls made tothe perinatal clini cal nurs e specia l Ls t.by 36parentsofVLBWin f a nt s followingthe in fa nts ' hospitaldi scharge, ove r an 18 monthti me span. Seve n t y-sev e npercent ofthe mothers were multipara s. Themajority of callswe remade by mothers during the firstthree months . only twofathers and one grandmotherinitiated telephonecalls. The reasons for the calls...ere ranked accord:.ngto frequency. The major co nce r n duri n gthe firs t four months wasinf ant healthproblemsfolloved bynoz-meI infa nt concerns.
Healthconcern sincluded respiratory problems, medications , skin rashes, infections, and feeding prob lems. Very few mothershadconc e r ns about thems elves. Butts et aL did no t co mpar e theda t a for
41 parity. They did suggest thatthe high numberof mot.her-eLnLt.Lat.ed call s dur ing the first mo nt hs following dischargemay be due to themothers ' readiness tole a rn. Also,the mothers ' interes t may have been stimulatedbythenurse-initi atedphone calls during the firs t two eont ne, Althou ghthe titleor th i s study was concerns of parent s ofLBW infant s, the samplestu d i ed weremothers ofVLBWinf a n ts (we i g ht 150 0 gra msorless ).
Kennerand Lott (1 9 9 0) con duct ed a qua li t ativ e descripti vestudy to determineparent s ' conc ern s re g ardingdischarg e of their in f ant s from the uc c nnte1 Intensive Care Un i t . Par entsof fou rpr-cticrm infan t s and 6 fu l l - t e rminfantswe r e in t erv i ewed intheirhomes at one and fou rweeks followingthe infa n ts ' dLechur-qe . The parentswere als orequestedto keep dia ries in whichtheywere askedtorec o r dcon ce r ns or p r ob l emn they had about themse l ves or the i r infant. Fi v e catego ries emerged: informat ion ne eds, anti cipator y grief, parent-child develo pme n t, stressandcoping, and social support . Kennerand Lott didnot cite the numberof parent respons es intheir st ud y . Paren t s expressed concerns regard ingthe infa nt s ' healthand
"
wou ldhave liked informa tionregardingth e in f an ts' be ha v i o r al andphys i calcharacterist ics. They still wo rri ed aboutthe infa n t dying , about the infant ' s breathingpatterns,and the possib i l ity of il l n ess. The paren t s ha dconc e rn s abo utfeedingtheir infa nt and wo rr i e d about we i g ht lo s s. A maj or findingwas the gap between whatparentspe r c ei ve d as concernsand what nur s e spe r c e i ved as parents' concer ns. Parents expressed concer n about the la ckof clari ty of their role inthe Neonata lIn t e nsiveCareUnit. Parentshad conc erns abouttheircompete n c y to carefo r their infantsand perceivedtha t theirinfants be l o nged to the nur s e s more thantothem. Intheirview, nurs e s in thehos p i t a l were not supportive to them as par e ntsand didno t involvethe m in decision mak i ng , which compo unde d thest r ess the y feltwhen the y tookthe i r infa n tshome. The yfelt thatifth e neon a tal sta ff ha d beenmore supportivetheywould ha v e cope d ina more positive manner with the i r role respons ibi l iti es. At onemo nththe pare nts exp r es s ed mo r econf ide nc e in theirabilityto recogni ze th e infan ts ' ne e ds. The researchersdidnot inc l udea des c r iption ofthe demog raphic va r i abl es of the sampl e. Th.ey ref erred to
43 parents but did not stat e whe t herthe motherand father ....ere int erviewed to g e t he r or se parately .
Su mmaryof r.jtera t ll reReview
Tr a d i t io na ll y the r e ar e twoapproaches us ed in viewing the taking on of the pa r e nt role. Thefi r s t ap proac h us e s the conceptof cr i s isin viewi ngthe tr an sit i onto pare nthood. The se co ndapproach, ho weve r, usesthede velopmentalper s p e c t i ve andsees the assumptionof the parentroleas a normal crisis.
Itha s been well documentedthat parenti ng a preterm infant is st r essful andpr e sen t s a potent ia l crisis eve nt fo rparents . Thest ressofapre t c r m birt h may be compound ed by prolongedseparationand
hospita l iza tionbecause of the infants'special care nee d s.
Mothe rs of pre terminf a nts have m<lny concerns rel a t ed to thedemandswithinth e i r role-setthroughout their infants' hosp ita l i z a tionandfo ll owin g their infan ts ' discharge fromho s p ita l. Mo s t of these conc ern s arerel atedto th e inf a nt s' health. feeding, sl ee p patterns ,andattachment.
Se v e r alres earchers have focus ed on factors tha t infl ue nce theta king on of theroleof mot herof a
."
pr e t erm LBWinfant. Factorswhichwererep orted to affect themo t he r s ' adjustment tothe mother role included: ma t e rn a l - i nf a n t int eraction,supportofthe mothers ,and the mot hers ' learning ne e ds .
I t isevident that mothersof pr e t e rm infa n ts ha v e concernsfol lowingthe infa nts ' di s cha r g e from hos p i t a l. Alt hou g h there are studies ....hic h had examinedthe concernsof mothersof preterm LBW infants, no studieshave conce n t ra tedsol elyon the concernsof mothers of pretermLBWinfants dur i ng the firstwee k followin g the infan ts ' discharge from ho s p i t a l. Also, theweekfoll o wi ng th e infan ts' dischargefrom hospitalha s beenidentified as difficultan draises the most concernformot hers. Mothers of preterm LBWinfan ts may encou nte r difficulti es in assuming the mo ther role wh i l ethe infant s are inhospital because of th e abru p t nessof the pr e termbir t h , becau s e of prolongedsepara tion fr om tno tr in fants,and becausethe appeara nceand behavior of the infan tsareno t congrue nt wi th their expectations ofan idea l infan t. Whenmothers take thei rprctermLBW in f ants home they mustnowta k e on the ro l e of mo t he r without the continuoussu pport and
pr ese nc e of hospita l staff . Mothe rsfeel inse cu r e. la ckconfidence, are depressedand anx i ou swhen the in fa ntsaredischarged rrom hospital. Factors found to be associa tedwith thedifficu l t fir stwe ekwere: the degree of prema turity. the infants ' health status . promptPubl i cHe alt h Nur s e visits. nnd whethe r the in f an t hadapnea in hosp ital.
The res e a r ch that has been carriedout on mothers of pretermLBWinfan tshasbeen do ne Lar-qely inth e Uni t edStateswhere the cul tu re and heal thcare set- up di ffe r frolll Canada. OnlyoneCanadia nstudy hacbee n loca ted whi c h deal swiththe above topic . Th e re f orc, lIore studiesareneeded .usi ng qua litat i v emet hods, to findout how mothers pe r c eive the firs t we e k atheme with their preeernLBWinfants.
The studiesreviewedhe re sh o ...th a t taking on the lllo t her role ofa preternin fa ntpresentsthe ro le Lncuece n t;wit h manydit U c ult i e s. suc h as.anxiety , un cert a inty, adaptatio nof lea rni ngnoeds, ancr different expe ctat i ons. Allthesecall for modificationof ex pec t a ti ons ,consist entsuppor t , and teachingby ot h e rs.
In co nc l us i on, furth erinves t i gat i o n is ne ed ed to
46 focuson the concerns of mothersof preterm LBWinf a n t s du r i ng the first week followingthe Lnrent.s' disc harg e fr o mhoa pI t.a L, Als o, more informationis needed onthe impac t onthe motherwhen she takes on the motherrole and fa c t o r s which influence the taking on the roleof mathe r during the fir s t week ofthe infants' discha rge fromho u pLt.aL,
CMPT~RIII Co nceptua l Framework
The birth of a firstchi ldforcesawoman tota k e on the mother role. In or d e r toenactthe role effect ively the ne w mother ne e d s to continua to le a r n al l abo u t th e roleandthe ski llsthatarene c e ss ary forroleperfo rm a nc e. The ski l lsarepe r f e cte d over time . Mothe r s ofhealt hy fUll - te rm infa ntstake on the dutiesand obligationsof the irro l e afterbirt h, thus ro l e learn i ngan d role pe rfor ma nc e occu r immediately followi ng birth.
Theliterature re vie w showsthatwhen a preterm LBW infant isbor n theinfa n t is u sua Lj.y in a poor stateof he alth and require s prolon gedperiodsof hosp i ta l izat io ninan int en s ive careunit. Withthe sep aratio nof mother and in fan t,themot her isunab l e- ta en actthe mother role , and rol e le arni ng isdelaye d.
Co nc epts from roletheory ar euse d topr o vid e the co n c e ptualfra me wor kof thisstudy. The conc e p ts us ed ar e roletaki ng , rol e-s e t , ro l eexp e .ct atiLous, role learn i ng,and role strai n. sarctnand 1I.llen (196B) def i n ed a roleas"a nor ga n ized set of behaviors that bel o n gs to an iden tifi a b l e po s i tion , and these
48
behav i ors areacti v a ted when the posi t ionisoccupied"
(p . 56).
When anincumb e ntof a posi t ionputs intoaction the rightsand obligations ofthe rol e, she enacts her ro l e. Sarbi nan dAl le n (1968) pointedout thatto ena b le the rol e inc umbe n t to ena cther role convi nci nglYshe need saptitu de, ap p r o p r i ate experience, andspec ific:::ki l ls . Mothers vary in th e i r expe r iencesofenac tingthe mothe r role. Somemothe rs mayha v e taken on th e rol emore thantwice , while for others it maybe the first timeth e yha v e ta k e n on the role.
Amotherma y have enac ted th e motherrole severa l timesand ma yha ve acquiredexpe rien ceand ski l ls, but mayhav ene ve r give n birthto a prete rm LBWin fant. Her pastex periencemay not be adequa tetointerpret the specif ic ne ed s ofapreterm LBWinfant and she would ne ed to adjust to an in fant whos e needs differ fro m he r otherchildren. Therefore, shema yne e d to lear n newspecific skillstohelphe rcar ry out the dutiesandobligations of hermotherrol e.
In the case ofa pr imipa r o uswoma n, ta ki ng onthe motherrole of a pretermLBWinfa ntmaybemore
"
pro b lematicthan he r counterpartbecauseof lack of expe rie nce, delay inrole learning , anddelay inro l e performance.
Every role is a way of relating to other roles in a situation. Thisrefers to role-set. A rolecanno t;
exist withoutone or more relevantotherstowardswhich it is orie nted (Merton, 1968). Thusa role of a v.t rc mak es no sense \<Iithout a husband, equally areteof n mothermakesnosense withouta child. In thecase of a preterm LBW infant the motherhas to relate to an infantwho is fragile and at bestma y ha ve health problems. Thus within the mother-infantrol e-setthe mot h er may experiencetensi on , anxiety,and concer ns overth e health of the infan t.
When a woman takeson a mother role, sh e plays not only the role of mother to her infantbut an array Of otherrolesas a mother. In her role as a mothershe relates to her partner,he r family, and health professionals. Me r t on stressedthat role-set dif f ers from that of multiple roles. Multiple roles refe r to various social posit ionssuch aswi f e, daughter, am i career woman. Each socialpositionhas itsown ro Le- set . The mothermay have concerns related to demands
within her role-setas a mother or her other mUltiple roles (Goodman&,Sauve, 1985: McHaffie, 1990).
Role expectations refers to the rights and obligations of the occupant of a position (Sarbin&
Allen, 1968). Role expectations define the range of acceptable behaviors. People may have different expectations about a particular role. Burr, Leigh,Day andCo ns t a n t i n e (1979) proposed that the clearer the ro l e expectat ions, the easieri t is to move into a new role. Sarbin and Allen (1968) stated that the degree of abruptness in the transition from one role to another will affectthe clarity of a person's role expectations. The birth of a preterm infant for both a primipara and mUltipara is an abrupt and unexpected occurrence. This may result in different expectations than the mother anticipated, and may delaythe readiness to take on the mother role (Jeffcoate et al., 1979: RUbin, 1984). When the infant arrives horne from the hospital, the mother may expect the partner to take on added responsibilities inth e home activitiesand care of the other children while she is adjustingto thecare of the infant. If the partner's expectations are contradictoryto what the mother expects,concerns
51 may resu l t.
Sarbi nan d Allen (1968) stat e d thatrolele arni n g arethe perf o rm anc es tha t make up a ro l e an darethe prod uc t s ofle a rn in g exper i e nces. The mother defines and le arns her mothe r role, in pa r t , thro ugh frequent int e ractio nwi t h he r infant . The moth er may hav e pr e v i o u s l y had a full-terminfa nt.Wh il e heeknowledge ofinf an t care can be conside r e d adequa te,she ho we v er, may not ha v e theknowledgeand skillsne c e s s a r y to look after a preterm infa nt. The refore, ro l e le a r ning is alsoes se nt ial inthissitua t i o nto da o r-na sn the mother'sconcer ns. Themotherof a pr etcrminfantmay ha v e concernsregarding herknowl e dge, infantca r e skil ls , an dres po nsibilitieswhenshebringsthe in f a nt ho me (Br oo te nat al.• 19 8 8). Thecha racteristicsof the preterm infan t , aswellas the pr ol o n g ed separat io n,may pre s e n t ba r ri e r s to th e mother'srole le a rn ing . It is not possib le to learn all there isto kno w abou t a give nrol e,thus a role inc umbentmay ne e d to refer to ot hers for clar ification and sometimes [o r support. Thu s, in mo s t Int ensiv e Car..,Unitsteaching pl an s are institute d for thebenefit of mothe rs. Pro fess iona l sup po rt is also availab le following the
52 infa nt ' s dis charge from hospital.
Rolest ra inis definedby Goo de (1 9 60) as "the fe lt difficultyin fulf i ll ing rol e obl i g a t i on s"
(p. 101). Goodesuggest e d that a perso ncanno t ful l y satisfy all th ede mands ofro l e obliga tiollS an d must make atte mptsto adjustrol e demands. SarbinandAllen (1968) pr op os e d thatwhena person is unab le tored uc e rol estrain , th e n theperson1s impededin carryingout theduties of the role , an d thequal ityofrole perfor mance is affected. Mothe rs ' co nc erns ma yresult inrole strain. Role strainma y be inf l uencedby mUltiple de man d s ofhe rroles, unc l e a r role
expectations (Burr et a L,, 1979), as ....el l as inade quate rolele a rn i ng expe riencesandan ina dequate social su pportsystem. Rolestrai n in tu rn infl uences the case wit h whi ch the mo the r enactshe r rol e (Bur r et al., 1979). If thero l e demandsareexcessive , the mo th e r maybe rcrcec to eliminateorde l e ga t e some of the duties of he' . role,or removehe r s el f fr o m the untena b lesituation.
In summary, the eventssur r oun di ng the fi rstwe e k foll o wing the pre te rmLBW infan t s ' dis cha rg efrom ho s pit a l wi ll be perceiveduni quelyby eachmother.
