Infants in Crisis: How Parents Cope with Newborn Intensive Care and Its Aftermath

163 Pages·1991·9.37 MB·English

by  Glenn Affleck

Disorders of Human Learning,
Behavior, and Communication
Ronald L. Taylor and Les Sternberg
Series Editors
Glenn Affleck Howard Tennen
Jonelle Rowe
Infants in Crisis
How Parents Cope
with Newborn Intensive Care
and Its Aftermath
With 17 Illustrations
Springer-Verlag
New York Berlin Heidelberg London
Paris Tokyo Hong Kong Barcelona
Glenn Affleck, Professor of Psychiatry, School of Medicine, The University of
cr
Connecticut Health Center, Farmington, 06032. USA
HowardTennen,DepartmentofPsychiatry,SchoolofMedicine,TheUniversityof
cr
Connecticut Health Center, Farmington, 06032, USA
Jonelle Rowe, Department of Pediatrics, School of Medicine. The University of
cr
Connecticut Health Center, Farmington, 06032, USA
~rits Editors: Ronald L. Taylor and Les Sternberg, Exceptional Student
Education, florida Atlantic University. Boca Raton. FA 33431-0991, USA
ISBN-13:978-1-4612-7775-0 e-ISBN-13:978-1-4612-3050-2
DOl:10.1007/978-1-4612-3050-2
LibraryofCoagreuCataklgi.Da:-in-PublicltionData
Affleck, Glenn.
InfantsinCrisis:howparentscopewilhnewborninlensivecareanditsarlermalhIGlenn
Affleck, Howard Tennen, Jonelle Rowe. p. cm-(Disordersof human learning,
behavior, andcommunication)
Includesbibliographical references.
Includesindexes.
(all.. paper). (all.. paper)
I. Neonatal inlensivecare-Psychological aspeets. 2. Parent and
child. 3. Adjuslment (Psychology) 4. Infants(Newborn)-Family
relationships. I. Tennen, Howard. II. Rowe,JonelleC.
III. Tille. IV. Series.
[DNLM: I. Adaptation, Psychological. 2. Infant, Newborn, Diseases.
3. Inlensive Care, Neonatal. 4. Ufe-Change EvenlS S. Parent-Child
Relations. WS420A2S7c)
RJ2S3.S.A3S 1991
155.9'1~
DNLMIDLC
forUbraryofConaress 90-10101
Printedonacid-freepaper.
(Cl1991 Springer-VerlagNewYork Inc.
SoftcoverreprintofthehardcoverIS(edition1991
Allrightsreserved.Thisworkmaynotbelranslatedorcopiedinwholeorinpartwithoutlhe
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Dedicated to our families, and theirs
Preface
More than 10years ago, with funding from the Connecticut State Depart
mentofEducation and the encouragement ofits consultant on earlychild
hood specialeducation, Virginia Volk, we began ourstudies offamilies of
infants who were hospitalized on the newborn intensive care unit of the
John Dempsey Hospital located at the University of Connecticut Health
Center. BettyJo McGrade, DeborahAllen,and MariaMcQueeneyplayed
pivotalrolesintheearlyyearsofthisresearch program. Additionalfunding
from the National March of Dimes Foundation, the University of Con
necticutResearchFoundation, andtheNationalInstituteofMentalHealth
prepared the ground for the study we describe in this book.
The study began in 1984 through a National Institute of Disability and
Rehabilitation Research center grant to the University of Connecticut
Pediatric Research and Training Center, directed by Robert Greenstein
and then byMaryBethBruder. LindaWalkercoordinatedthe projectand
conducted the interviews with families before hospital discharge. Pamela
Higginsconductedallfollow-up interviewsandassisted withdata manage
ment and analysis. Elizabeth Trueb Roscher provided support services to
a portion of the fanrilies who were studied. Deborah Begin transcribed
interviews and handled the administrative details ofthe project. Richard
Mendolawastheconsultantondataanalysisandtheselectionofcomputer
software and hardware.
To all these individualsweextendourdeepestgratitudefor theircontri
butions to this book. We are also deeply indebted to the medical and
nursing staff of John Dempsey Hospital's Newborn Intensive Care Unit
for their continued support ofour research on the psychosocial aspects of
newborn intensivecare. Butwe reserveourwarmestthankstothemothers
and fathers who so generously gave their time and energiesto make this
book a reality. In what was a difficult and demanding time, they opened
theirhomesandtheirheartsin the hopethattheycouldteachprofessionals
and inspire parents who found themselves in similar circumstances. We
hope that we have done them justice in our efforts to chronicle their
experiences.
Glenn Affleck
Howard Tennen
Jonelle Rowe
Contents
Preface vii
1 Introduction............................................. 1
ThePsychologicalChallengesofNewbornIntensiveCare ............ 1
PlanoftheBook ........................................... 9
2 BackgroundandDescriptionoftheStudy. .................... 11
TheMedicalSettingoftheNewbornIntensiveCareUnit 11
TheHealthandDevelopmentofNewbornIntensiveCareUnitGraduates 14
MethodsandProcedures. .................................... 18
3 TheSearchforMeaning 29
OrderandPurpose 30
BenefitsandGains. ......................................... 33
DownwardComparison. ..................................... 37
4 TheSearchforMastery .................................... 44
TheBenefitsofPersonalControl. .............................. 44
RetrospectiveControlAppraisals .............................. 45
ExpectanciesofControlOverChildrens'Outcome 50
ExpectanciesofControlOverFuturePregnancies. ................. 52
ComfortingAlternativestothePerceptionofPersonalControl ........ 54
5 TheSearchfor Causes ..................................... 60
CausalSearching '.' ................................ 60
ATaxonomyofCausalBeliefs. ................................ 61
TwoTypesofSelf-BlameforAversiveEvents. .................... 65
ConsequencesofSelf-Attributions " 66
BehavioralSelf-BlameandGuilt. .............................. 68
TheEmotionalCostsofBlamingOthers ......................... 70
ix
x Contents
6 CopingStrategiesintheHospital. ........................... 75
ADefinitionofCoping 76
CopingandAdjustmenttoStressfulEvents. ...................... 76
DescriptiveFindings .. ...................................... 78
CorrelatesofCopingStrategies ................................ 79
CopingPredictorsofMotherandChildOutcomes. ................. 81
7 TheSearchforSocialSupport 85
TheBenefitsofSocialSupport. ................................ 85
AppraisalsofSupportDuringtheHospitalization .................. 87
TheNeedforSupport ........................... 91
AppraisalsofSupportAfterDischarge 92
SocialNetworkCorrelatesofAdaptationat6Months. .............. 93
SocialNetworkPredictorsofI8-MonthOutcomes. ................. 96
CopingStrategiesandSupport. ................................ 96
8 Mothers' RemembrancesofNewbornIntensiveCare. .......... 99
MemoriesoftheHospitalization ..... 100
AreMemoriesPerceivedasHelpfulorHarmful? 105
TheEmotionalSignificanceoflnvoluntaryMemories 106
PredictingMothers'EmotionalResponsetoReminders 109
IntrusiveThoughtsandAvoidanceofReminders 111
9 Mothers,Fathers, andCouples. ............................. 116
DistressandWell-Being 116
AppraisalsofControl,Outcome,andMeaning .................... 118
CopingStrategies. .......................................... 119
AppraisalsofCopingDifferences 121
AppraisalsofSocialSupport .................................. 123
PerceivedImpactontheMaritalRelationship. ..................... 124
10 SummaryandDiscussion 126
IntegrativeAnalyses .......... 126
ReviewandDiscussion 129
MeetingParents'NeedforSupport ............................. 139
ImplicationsforHelping. ........................ ............ 140
References 144
1
Introduction
Before describing the plan ofthis book and the background and details of
ourstudy, we will allowourinformantstospeak to the reader in theirown
words. We begin this way because it was our in-depth interviews with
parents that taught us the most about the psychological threats and
challengesofthe unfoldingcrisisofnewborn intensivecare. Itwas through
these interviews that we began to understand the phenomenology of this
stressful event. A natural beginning to our analysis of parents' adaptation
tothebirth, hospitalization, andhomecomingofmedicallyfragile infantsis
to understand how these events threaten patents' well-beingandchallenge
their social and psychological resources.
The Psychological Challenges ofNewborn Intensive Care
The Birth and Delivery
The motherquoted belowofferedacharacteristicaccountofthe escalating
crisis of her baby's delivery, 3 months early:
My pregnancywas great. Ihad no morningsickness. Ifelt fine and had a lot of
energy. Inevermissedaday's work. Ihad been doingeverythingto makesure
thatthingswouldturnoutall right. Thenonenightwhileweweregettingready
to go out to dinner, I went into the bathroom, and all ofa sudden, blood was
pouring out ofme. My husband called the doctor, who said I should go to the
hospital right away, which we did. Then the doctor had me transferred to the
medical center where they hooked me up to IVs and monitors. They weren't
willingtowait,sotheydeliveredthebabybyCsection.Andonly4hoursearlier,
I had been thinkingabout goingoutto dinner. That'swhat wasso weird about
it...that it happened so suddenly, without any warning.
Like 70% ofthe mothers who participated in ourstudy, this woman had
nowarningofaprematureorhazardousdelivery. Herpregnancyhad been
proceeding uneventfully, and she had been doing all the "right" things to
make sure it would stay that way. Yet, her expectations were abrubtly
violated.
1
2 1. Introduction
This response to the birth of a premature or sick newborn-a sense of
dashed expectations and shattered assumptions-echoes the reaction of
people who encounter other upsetting and unexpected events: becoming
seriously ill, losing a loved one, being the victim of criminal assault, or
surviving a natural disaster. Contributors to the rapidly growing literature
on the psychology of victimization agree that one of the most powerful
threats to victims' well-being is that they challenge cherished beliefs, even
"illusions," aboutourselvesand theworld (Janoff-Bulman & Frieze, 1983;
Taylor, 1983; Taylor & Brown, 1988). Janoff-Bulman (1989) writes, "the
psychological disequilibrium and emotional upheaval experienced by
victimsislargelyareflectionofthis intense, seriouschallenge totheirbasic
assumptions...All of sudden victims are confronted with a world that is
malevolent and meaningless, and a view of themselves as having been
singled out for misfortune" (p.163).
Janoff-Bulman and Frieze (1983) remind us that we "from day to
day...operate on the basis of assumptions and personal theories that
allow [us]tosetgoals, planactivities,andorder[our] behavior" (p. 3). Our
"assumptive world" (Parkes, 1975), or what Thompson and Janigian
(1988) call our "life scheme" and what Bowlby (1969) calls our "world
models," includes the tendency to see ourselves as having control over
events, to view ourselves as relatively invulnerable, to regard the things
thathappen tous as beingorderly,predictable, and meaningful, andtosee
ourselves as worthy and others as benevolent or at least benign.
The centrality ofthese assumptions in our lives is revealed most starkly
when we face a personal catastrophe that challenges their validity.
Consider, for example, the common perception that "bad things happen,
but not to me." This illusion, which Perloff (1983) calls a sense ofunique
invulnerability, is comforting because it allows us to live from day to day
withoutfeelingoverwhelmedbythepossibilityofdangerand harm. Often,
a belief in pers(;mal invulnerability is buttressed by the conviction that we
can prevent bad things from happening. These twin assumptions are
u~ually so robust that they go unquestioned in the face of minor
disappointments and misfortunes. Only traumatic events bring them to
light.
Does the birth of a medically fragile newborn threaten the validity of
parents' valued assumptions? One set offindings that begin to answer this
question concerns mothers' expectations about the outcome of their
pregnancy and their efforts to prevent complications of pregnancy and
delivery. Approximately half the mothers who participated in our study
said that when they were pregnant they had imagined that there was no
possibility that their baby would need to be hospitalized on a newborn
intensive care unit (NICU). Only a small handful ofthe mothers, most of
whom had been through this before with other children, had thought that
there was a better than even chance that this would happen to them.
Virtually all of these mothers recounted things that they had done dur-
The Psychological Challenges of Newborn Intensive Care 3
ing their pregnancy to prevent such problems from occurring. The vast
majority said that they had made changes in their habits and lifestyle
avoiding alcohol, quitting smoking, following a more nutritious diet,
exercising more, and trying to reduce the stress in their lives. One in four
mothers quit their jobs and the same number quit taking all medications.
Most ofthe fathers we interviewed also identified ways in which they had
helped their wives to ensure an uneventful pregnancy. Nearly half these
men said that they took on greater responsibilities for housework and
childcare to make things easier for their wives, and about 20% said they
triedto providemore emotionalsupportthan usual toenhancetheirwives'
psychological well-being.
Many mothers andfathers volunteered how thisevent had violated their
expectations of control over the pregnancy:
I really thought everything was going to be fine. I couldn't imagine anything
wouldgowrong. Iwasverygoodwithmypregnancy. Iexercised. Ididn'tsmoke
or drink. I followed all ofthe advice in the books.
My wife was particularaboutwhatshe ate and took extragoodcareofherself.
So I can't understand why it happened. There was simply no reason for it.
Ican'tunderstandit. Idid everythingIwassupposedto. Ididn'tdrink, Ididn't
smoke, I quit work, I followed my doctor's advice. This was not supposed to
happen.
This is something I thought would never happen to me. I waited all my life to
haveababy. Iexpectedittobeajoyfulexperience. Idid everythingtoprepare
forahappytime. Therewasnoreasontothinkanythingwouldgowrong. Itjust
doesn't make any sense.
I kept asking why? We don't deserve this. We did everythingright...watched
every meal, did every exercise...just to make sure that everything would be
perfect. And, then, in a matter of hours, something like this happens to turn
your whole world upside down.
Some parents, instead of questioning their expectations of personal
control, questioned the control they had accorded to their obstetrician.
One parent's conclusion that the obstetrician was to blame for the child's
medicalproblemswasframed byassumptionsaboutthisphysician'sability,
but failure, to control the outcome ofthe pregnancy:
What happened to my child simply should not have happened. Ifhe was born
deformed, that's onething. Butmyson's problemissomethingthat couldhave
been prevented and should have been prevented. He missed something. He
knew better. I don't think I'll ever get overthis fact.
Finally, in addition to shattering expectations of invulnerability and
control, the crisis of newborn intensive care caused some parents to
question the meaningfulness, even fairness, of events:
Ofall the people in the world, why did this happen to me? Why not someone
else? Things don't make sense any more.