Psychosocial Functioning of Children Living with a Brain-Injured Parent By Rema Andrea Lillie BA ...

136 Pages·2013·0.63 MB·English

Psychosocial FunctioningofChildrenLivingwitha Brain-Injured Parent
By
Rema Andrea Lillie
B.A., WashingtonUniversityinSt.Louis, 1998
M.Sc., UniversityofVictoria, 2005
ADissertationSubmittedinPartialFulfillment
ofthe Requirements for the Degree of
DOCTOR OFPHILOSOPHY
inthe Department ofPsychology
Rema Andrea Lillie,2013
UniversityofVictoria
All rights reserved. Thisdissertationmay not be reproducedinwhole or inpart,by
photocopy or other means, withoutthe permissionofthe author.
ii
Supervisory Committee
Psychosocial FunctioningofChildrenLivingwitha Brain-Injured Parent
By
Rema Andrea Lillie
B.A., WashingtonUniversityinSt.Louis, 1998
M.Sc., UniversityofVictoria, 2005
SupervisoryCommittee
Dr. Catherine A.Mateer,Department ofPsychology
Supervisor
Dr. MauricioGarcia-Barrera, Department of Psychology
DepartmentalMember
Dr. James Tanaka, Department ofPsychology
DepartmentalMember
Dr. Susan Tasker,Department ofEducational PsychologyandLeadershipStudies
OutsideMember
iii
Abstract
SupervisoryCommittee
Dr. Catherine A.Mateer,Department ofPsychology
Supervisor
Dr. MauricioGarcia-Barrera, Department of Psychology
DepartmentalMember
Dr. James Tanaka, Department ofPsychology
DepartmentalMember
Dr. Susan Tasker,Department ofEducational PsychologyandLeadershipStudies
OutsideMember
Historically,there has been limited empirical studyofchildrenwhose parents
have suffered an acquiredbraininjury. This is despite the fact that bothclinical opinion
and qualitative studysuggest that these childrenmay represent a populationat risk for a
varietyofemotional andbehavioural problems. Thecurrent studyset out toevaluate the
overall psychosocial functioningofa small subset ofchildrenwhose parents had suffered
an acquiredbraininjury(TBI,stroke) and whowere inthe more chronicphase of
recovery(averagetime post-injury=3.3years). Factorsthathave beenproposedto
impact childpsychosocial functioninginthis populationwereassessedincludingthe
neurobehavioral profileofthe parentwithan injury,parentaldepression,and the child’s
report oftheparental relationship. Inall,ten children (average age = 13years) from
seven families withparental ABI were evaluatedbothona comprehensive measure of
childpsychosocial functioning(BASC-2) and a series ofqualitative measures. As
compared toa normative sample, results ofquantitative analyses suggesta groupof
children notexperiencinggeneral clinical distress. Infact,statistical analyses suggest
resiliency inthe currentsample as compared tonormative data. At the individual level,
two ofthe children inthe sample evidenced behaviour that warrants further clinical
evaluation,thoughthis findingmay be onpar withthe baserates ofclinical distressseen
inthe general population. Qualitative analysesprovide aricher understandingofthe
experiencesofthese children and their families andsuggest avenues for furtherempirical
evaluation. Results arepresented inthe contextofother studies todate.
Recommendations for clinicians and researchers based oncurrent findingsare provided.
iv
Table of Contents
SupervisoryCommittee..................................................................................................... ii
Abstract............................................................................................................................. iii
Table ofContents.............................................................................................................. iv
List ofTables.................................................................................................................... vi
Acknowledgments............................................................................................................ vii
Dedication....................................................................................................................... viii
Introduction.........................................................................................................................1
Background............................................................................................................ 4
Impact ofBrainInjuryonCaregiversand Families - TBI......................... 4
Impact ofBrainInjuryonCaregiversand Families - Stroke......................7
Impact ofParental BrainInjuryonChildren..............................................8
Impact ofParental Chronic Illness onChildren........................................32
Impact ofParental Mental Illness onChildren.........................................33
Summaryand Goals for the Current Project.........................................................34
Methods............................................................................................................................37
Participants............................................................................................................37
Prior HistoryofMentalIllness or Significant HealthConcerns............... 39
Measures...............................................................................................................41
ChildPsychosocial FunctioningandAdjustment....................................41
Injured Parent Behavioral Profile: Symptoms of the BrainInjury...........53
Other Contextual and EnvironmentalFactors...........................................59
Procedure..............................................................................................................64
Participation..............................................................................................65
Compensation...........................................................................................66
Results...............................................................................................................................67
ChildPsychosocial FunctioningandAdjustment.................................................67
BASC-2Results........................................................................................67
QualitativeMeasures................................................................................75
Injured Parent Behavioral Profile: Symptoms of the BrainInjury.......................84
v
NFI............................................................................................................84
HIBS.........................................................................................................85
M2PI.........................................................................................................86
Other Contextual and EnvironmentalFactors......................................................87
Employment..............................................................................................87
Perceived Financial Strain........................................................................88
Parental Depression..................................................................................88
Discussion.........................................................................................................................90
ChildPsychosocial FunctioningandAdjustment.................................................90
BASC-2SRPand PRS..............................................................................90
QualitativeMeasures................................................................................93
Injured Parent Behavioral Profile: Symptoms of the BrainInjury.....................101
Other Contextual and EnvironmentalFactors.....................................................103
Employment and Perceived Financial Strain..........................................103
Parental Depression................................................................................103
Overall SummaryofResults...............................................................................104
Challenges...........................................................................................................108
Future Directions................................................................................................110
References.......................................................................................................................112
AppendixA: General Descriptive Questions..................................................................125
AppendixB: StudyRecruitment Materials.....................................................................126
vi
List of Tables
Table 1. Demographic information.........................................................................38
Table 2. Injurycharacteristics.................................................................................39
Table 3. Mental health& generalhealthhistory.....................................................40
Table 4. Outcome measures....................................................................................45
Table 5. BASC-2SRPresults.................................................................................69
Table 6. Scale elevations and depressions onBASC-2SRP..................................71
Table 7. BASC-2PRSresults.................................................................................73
Table 8. Scale elevations and depressions onBASC-2PRS..................................74
Table 9. Incomplete Sentencesthemes...................................................................76
Table 10. Incomplete Sentencesthemes for fear,worry,andnotableresponses..... 78
Table 11. Copingstrategies asevidenced onIncomplete Sentencestask................79
Table 12. Employment status...................................................................................87
Table 13. Perceived financial strain.........................................................................88
vii
Acknowledgments
First and foremost,I wouldlike tothank the children and families who
participatedinthis project for allowing me toglimpse intotheirlives. I hope thatthe
informationthey have provided canhelpother families insimilar situations. I wouldalso
liketothankthose members ofthe braininjurycommunitywhoprovidedme with
support andencouragement alongthe way, includingthe Trymunity.comcommunityand
the Texas Chapter oftheBrainInjuryAssociationofAmerica. Aspecialthank youto
Mentis Neurorehabilitationfor supportingthe projectand assistinginsubject recruitment.
I wouldliketothank mysupervisor,Dr.KatyMateer,for herconstant support,
guidance, andencouragement. You have trulyserved as a mentor for me over these past
years asa supervisor,clinician,academic, and woman. Thankyoufor allofour talks,
bothacademic and otherwise.
Thankyoutoeach ofmycommittee members for their valuable input andinsight.
Andthank youtoDr.James Malec for agreeingtoserve as myexternal committee
member.
I wouldliketothanktheHoustonpsychologycommunityfor supportingthis
project andprovidingme withthe motivationandencouragement tokeep moving
forward. Special thanksgoout toDrs. Robert Collinsand Tracy Veramonti.
ThankyoutoDr.KeiraO’Dell for her assistancewiththe statistical analyses.
Ona more personal note,I wouldliketothank myfriends andfellowgraduate
students forsharinginall thetrials andtribulations alongtheway. And myfamily,
especiallymydad, for providingme withthe foundationandinspirationtopursue such
an undertaking.
viii
Dedication
To myhusband. Thankyoufor always believinginme, evenwhen I had trouble
believinginmyself.
To mydaughter,Audrey. Gettingtoknowyouover the pastcouple yearshas beenone
ofthe greatest experiences of mylife. Thankyoufor bringingnewpurpose and meaning
towhat I do.
Andtothe survivors ofbraininjuryand their families,youcontinuallyinspire me as a
clinician,researcher,andperson. Thank youfor lettingme share inyourjourney.
INTRODUCTION
“Braininjury is aneventthat leads toaprocess.”
~Anonymous, family member of apersonwithabraininjury
Acquired braininjury(ABI) is a life-alteringevent that oftenoccurs suddenly,
typicallywithout warning,and leadstolong-termramifications not onlyfor theinjured
individual but also for familyand loved ones. Startingaroundthe mid1990s there has
beenan explosionofresearch lookingat theimpact ofbraininjuryonthefamily
members and loved ones most involved inday-to-day care, primarilyspouses and
parents. Inan age whenhospitals andrehabilitationprograms are under increasing
pressure toset limits onthe nature, length,and coverage ofcare (Cavallo& Kay, 2005),
many affected individuals are discharged home followinghospitalization(Faul,Xu,
Wald,& Coronado, 2010; Jacobs,1988) where family members are oftenburdenedwith
findingandprovidingcare. The impact ofinjuryonthese crucialcaregivers is being
increasinglyacknowledged as an important component ofoutcome (Gan, Campbell,
Gemeinhardt,& McFadden, 2006). However,one groupthat continues tobe overlooked
inthis burgeoningfieldinvolves thechildren ofthe injured individual.
ABI is a generictermencompassingvarioustypes ofbraindamage causedby
events occurringafter birth. The most common forms ofABI include traumatic brain
injury(TBI)whereinaninjurytothebrainis causedbyan external force(e.g., motor
vehicle collision,falls,assaults),stroke involvingthe suddeninterruptioninthe blood
supplyofthe brain,andhypoxic injuries entailingthe deprivationofoxygen tothe brain
(e.g., drowning,heart failure). ABI isa worldwide phenomenonaffectinga vast number
ofindividuals and their families (e.g.,Faul et al.,2010; PublicHealthAgency ofCanada,
2
2009). Forexample, the BrainInjuryAssociationofCanada (2004) estimatesthat close
to4% ofCanadians are livingwithanacquired braininjury. Suchinjuries often leadto
long-termdisabilityandloss ofproductivity(e.g.,Finkelstein,Corso, &Miller,2006;
Public HealthAgencyof Canada, 2009). Thoughtothe bestof myknowledge there are
nolarge-scale statisticsdirectlyavailable,itis likelythat manyofthese individuals have
children either prior toorfollowingtheirinjuries. Instudieswhere itis reported,
anywhere from32% (Gan et al.,2006) to53%(Douglas &Spellacy,1996) offamilies
withbraininjuries include children. Thepresence ofchildrenis importantfor a varietyof
reasons,notthe least ofwhich include addedresponsibilityfor boththe caregiver (e.g.,
feelingpulledbetweencaringfor theinjured individual andcaringfor children)and the
injured individual(e.g.,parental demands). Parentalresponsibilities couldalso serveas
contributingfactors tostress, financial burden,anda demand onresources (e.g., time,
logistical demands) withinthe home. For instance, the occurrence ofTBI inparticularin
families withyoungchildren has beensuggestedtoleadtounique challenges (Moore,
Stambrook, & Peters, 1993) and increasedstress(Douglas &Spellacy,1996).
For decades,clinicians have warnedofthe potentialimpact of parental brain
injuryonchildren and have identifiedthese children as “at risk” for a varietyof
behavioral andemotional problems (e.g., Daisley& Webster,2008; Lezak,1988;
Urbach,1989). However,there are fewempirical studies lookingat howchildren are
impacted byparental braininjury. Are children negativelyimpacted byparental brain
injury? Ifso, how? Are there commonoutcomes for the groupas a whole? Arethere
factors ofthe braininjuryitselfthatimpact childoutcome? Factors oftheuninjured
parent? What are the potential positive outcomes ofparentalbraininjury? All ofthese