paediatric traumatic brain injury: a review of siblings’ outcome
TRANSCRIPT
Brain Injury, January 2008; 22(1): 7–17
REVIEW
Paediatric traumatic brain injury: A review of siblings’ outcome
MELISSA SAMBUCO1, NAOMI BROOKES2, & SUNCICA LAH1
1School of Psychology, University of Sydney, Sydney, Australia and 2Brain Injury Rehabilitation Program, Sydney
Children’s Hospital (Randwick), NSW, Australia
(Received 27 July 2007; accepted 21 November 2007)
AbstractPrimary objective: This review aimed to identify main findings and critically evaluate literature that considered siblingoutcomes following paediatric traumatic brain injury (TBI) sustained by a brother or sister.Methods: Qualitative and quantitative papers on the topic of TBI from PubMed and PsychINFO were reviewed. Identifiedliterature was manually cross-referenced and all papers that identified siblings as the main subject of research or assecondary to research aims were included. Exploration of results and evaluation of studies that centred on sibling emotional/behavioural response, sibling relationship changes, subjective lived experience post-injury and factors predictive of siblingoutcomes was the modus operandi for analysis of identified literature.Main results: This review suggests that siblings of children who sustained severe TBI and have residual behaviouraldifficulties are at an increased risk of adverse psychological outcome. Moreover, they may experience many qualitativechanges in their life. The generalization and interpretation of the findings, however, is limited by many methodologicalshortcomings, especially lack of prospective longitudinal design and measures of pre-morbid functioning.Conclusions: Theoretically driven, prospective, longitudinal research into sibling outcome following child TBI is a priority.
Keywords: Siblings, psychological outcome, traumatic brain injury, childhood
Introduction
Traumatic brain injury (TBI) is a common cause ofchild mortality and morbidity in Australia, with asmany as 12 000 individuals under age 20 sustaininga TBI each year [1]. Most children achieve fullrecovery; however, �15% of injured children willexperience temporary and/or permanent impair-ments [2]. Those who sustain moderate-to-severeTBI are at risk of significant ongoing physical,cognitive and emotional-behavioural difficulties[3–8] resulting in compromised adaptive functioning,a slower rate of learning and reduced academicachievement [9, 10]. In addition, novel personality[11], behavioural [12–15] and emotional difficulties[16] impact subsequent psychosocial developmentof the brain-injured child. A consistent dose–response relationship has been repeatedly identifiedfor injury severity and cognitive and physical outcome
[5, 7, 17, 18]. Family environment, psychosocial andpre-morbid factors, on the other hand, appear to havea stronger influence on behaviour and academicachievement post-accident [6, 7, 15, 19]. For injuredchildren and their families, managing temporary orpermanent neurobehavioural sequelae is an ongoingchallenge, particularly as evidence suggests that thegravity of behavioural difficulties may increase overtime [20]. With burden of care following child TBItending to eventually rest with the family [21, 22],impact of injury will not only affect individualmembers and force adjustments but will also affecthow a family works as a system [23].
Family response to traumatic brain injury
Critical reviews of the adult TBI literature [24–26]have concluded that severe brain injury sequelae
Correspondence: Suncica Lah, Suncica Sunny Lah, Mungo Mac Callum Building (A19), School of Psychology, University of Sydney, NSW 2006, Australia.Tel: 61-2-9351 2648. Fax: 61-2-9351 7328. E-mail: [email protected]
ISSN 0269–9052 print/ISSN 1362–301X online � 2008 Informa UK Ltd.DOI: 10.1080/02699050701822022
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have an undeniably negative impact on families, bothacutely and over the long-term, resulting in sig-nificant distress in family functioning [27]. Familystrain has been considered in terms of injury-relatedstress and burden, caregiver psychopathology andhealth, coping ability and general family functioning[24, 25, 27–30]. The literature suggests thatcaregiver psychological distress can increase overtime [25] and is best predicted by the injuredpersons’ novel personality, behavioural and emo-tional changes [24] as well as prior and post-injurypsychological adjustment of family members [25].In the adult TBI population, the majority ofcaregivers are partners and siblings have a peripheralinvolvement, as they are usually not living with aninjured person. However, in child TBI, siblingsare likely to reside in the same family home and thusthe impact of injury may affect all family membersincluding siblings themselves.
Interestingly, only a small number of studies havesystematically examined family outcomes post-TBIin children. These studies used a range of theoreticalframeworks, methodologies and variables of interest.Only three study cohorts had a prospective long-itudinal design and used standardized measures offamily environment. These series of studies wereconducted by Rivara et al. [19, 31–33], Andersonet al. [7, 34] and the Ohio group of researchers whoincluded a control group in their design and havepublished extensively from 1995 to the present.
Across these studies it appears that in the first yearfollowing child TBI, caregiver injury-related stressand burden is significantly increased in families withsevere compared to mild–moderate brain injury ororthopaedic injuries. In the Ohio study cohort [35]this was explained to be a result of the greater strainof cognitive and behavioural sequelae followingbrain injury compared to orthopaedic injury. Allthree study cohorts also found that severe TBI wasa significant source of caregiver morbidity, withdeteriorated psychological well-being noted at the1 year post-injury mark.
With respect to long-term family function out-come, Rivara et al. [33] found evidence of ongoingdifficulties, but Anderson et al. [7] and Wade et al.[36] did not. One of the reasons for the discrepancy infindings may be a difference in methodology used forevaluation of family functioning. For example, Rivaraet al. [31, 33] noted diminished family functioningand increased family relationship difficulties using asemi-structured interview at 36 months post-injury inthe severe compared to mild–moderate TBI groups.On the other hand, in the same study no significantbetween-group differences in family functioning wasfound on standardized instruments. Just like Rivara,Anderson [7] and Ohio [36] cohort studies found nobetween-group differences on standardized scales of
family environment. In addition, 2–4 year follow-upstudies consistently showed that other factors, such aspre-morbid child behaviour and adaptive functioning[7], pre-existing family functioning [33, 37, 38] andfamily resources [15] significantly influenced familyoutcomes; at times over and above the injurycharacteristic. Moreover, pioneering work of theOhio group [39] that followed families beyond4 years post-injury highlighted individual differencesin outcome. Although many families adapted favour-ably over time, some have continued to presentwith multiple difficulties. The families at risk of verylong-term difficulties were those with limitedresources and were caring for children who sustainedsevere TBI.
Sibling response to paediatric TBI
Siblings of children that sustained significant TBIare likely to be affected by changes that take place inthe family post-injury. Nevertheless, minimalresearch exists on sibling response and overall siblingoutcomes [40]. In a review of 20 papers focusing onfamily needs, Waaland and Kreutzer [41] pointedout that siblings’ needs and outcome have largelybeen overlooked. Furthermore, Perlesz et al. [30]commented that siblings tend to be isolated fromtheir injured brother or sister and cut off from accessto information during the acute hospitalizationperiod. The exclusion of siblings from acute settingsis likely to contribute to the limited understandingof sibling response to child TBI. Given that therelationship between siblings is unique; it is one ofthe longest familial relationships that one maysustain in a lifetime, understanding sibling subjectiveexperience of TBI and possible difficulties withadjustment are key areas requiring further researchin order to determine whether and what type ofsupport might be required.
As the first step in understanding how TBIimpacts siblings and their relationship with theirinjured brother or sister, the authors conducted aliterature search of two large databases; PubMed andPschInfo, on the topic of TBI. Identified literaturewas then manually cross-referenced to find papersthat included siblings’ outcome as the primary orsecondary research aim. Thirteen published papersthat were identified in this search are presented inTable I. Seven studies used qualitative, five quanti-tative and one combined methodology. Only fourhad a control group. All were cross-sectional, exceptfor one which examined a change in the siblings’relationship from 3–12 months. Interestingly, nostudies included toddlers or young pre-schoolchildren; instead the majority was conducted withteenage siblings. It is worth noting that seven out of
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13 papers aimed to examine family outcomes andonly six had siblings as the primary focus of thestudy. While some set out to determine whetherthere is an increased risk of psychopathology insiblings other examined ‘themes’ and ‘issues’ arisingfrom living with a sibling who sustained TBI.
This review indicated that knowledge of siblingresponse to TBI initially came from qualitativefamily studies that used clinical interviews andobservations. While valuable, findings about sib-lings’ outcome were often incidental. For example,in one of the early studies Harris et al. [42]interviewed parents of 50 children who sustainedmoderate-to-severe blunt trauma with a mean age of7.6 years at time of injury. The sample was likely toinclude, but was not restricted to, children whosustained a TBI. A non-standardized questionnairewas administered via telephone interview 1–4 yearspost-accident and explored family emotional andbehavioural responses to paediatric blunt trauma,rather than specifically examining siblings’ outcome.It was noted that 60% of injured persons hadresidual personality changes. Around 50% hadphysical, cognitive, social, affective and learningdifficulties, with 80% requiring special education.Overall, there appeared to be a significant level offunctional morbidity for the injured person. Inaddition, parents frequently reported significantchanges in family circumstances, such as worseningof marital relationships and increased financialhardship. Of particular interest, however, parentsreported that 46% of siblings had developed emo-tional disturbances, school problems and/or aggres-sive personality changes post-accident. Thisparticular study concluded that, for a portion ofsiblings, there is an unexpected morbidity followingchild TBI.
In a much smaller study, the most significantproblems post-TBI were elicited in a group discus-sion during a family retreat using a decision-makingtechnique; the Nominal Group Technique [43]. Thestudy involved gathering information from mothers,siblings and head-injured individuals (teenagers andyoung men) themselves. One of the five main post-injury problems identified by the mothers was theimpact of their son’s injury on siblings. They thoughtthat their uninjured children were asked to grow uptoo quickly and ‘to take on a great deal ofresponsibility for their brother’. This study was thefirst to involve siblings themselves as well as theinjured person. Interestingly, while the siblingsidentified many changes within the family andexpressed concerns about their injured brother,patients did not identify any sibling-specific issuesas one of the main post-injury problems.
The first study to specifically focus on siblingoutcome following severe TBI was conducted by
Orsillo et al. [44]. The authors measured generalpsychological well-being post-injury and recruitedsiblings via injured person consent at an outpatientrehabilitation facility. Data on sibling outcome wascollected directly from the siblings themselves viastandardized self-report measures, instead of indir-ectly, via parental interview as in the Harris et al. [42]study. The authors found that siblings had a high levelof psychological distress, nearly double the levelsreported by Harris et al. [42], with 83% meetingcriteria for clinically significant distress as defined bythe Brief Symptoms Inventory (BSI). This extremelyhigh incidence of psychological disturbances mightbe secondary to the methodology and samplingprocedure used. In this study data had been collecteddirectly from siblings rather than from the parentswho tend to be focused on the injured child post-accident. Therefore, they could have reduced aware-ness of psychological difficulties faced by the wellchild and under-report sibling difficulties in theHarris et al. [42] study. With respect to sampling, itis possible that some sampling bias had occurred,with those siblings who experienced significantdifficulties adjusting being more likely to participatein the Orsillo et al. [44] study. Moreover, this studyincluded only siblings of patients who sustainedsevere TBI. These children were more likely to haveongoing significant functional deficits, which in turncould have increased burden of care and siblings’distress. Furthermore, an unusually large proportion(80%) of the injured sample had a reported history ofpre-injury substance abuse as well as drugs andalcohol being associated with the incident in whichTBI was sustained. Such a high proportion ofsubstance abuse raises a possibility that these patientsand their siblings came from families exhibiting pre-existing psychological difficulties [25]. Finally, thetypes of symptoms endorsed by the siblings on theBSI (obsessive-compulsive thinking, interpersonalsensitivity, paranoid ideation and psychoticism)were not those usually associated with reaction totrauma [40]. Hence the very high incidence ofclinically significant distress amongst siblings maybe attributable to a combination of pre-existingdifficulties and limited family resources as well astheir reaction to TBI.
Three of the subsequent studies examiningsibling outcomes have used the same, standardized,but indirect measure of psychological adjustment;parental responses on the Child BehaviouralChecklist (CBCL; [45–47]). They all included acontrol group of children; siblings of childrenwho sustained orthopaedic injuries or randomlyselected classmates. Across studies, sibling resultson the CBCL were within the normal range(T scores <70). Moreover, emotional–behaviouraloutcome of siblings whose brother or sister sustained
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moderate-to-severe TBI was found to be comparableto controls in studies conducted by McMahon et al.[45] and Swift et al. [46]. On the other hand, in amost recent study that included siblings of childrenwho sustained TBI of lesser severity (mild-to-moderate rather than moderate-to-severe), Fay andBarker-Collo [47] found that these siblings exhibitedsignificantly more (internalizing but not externaliz-ing) behavioural difficulties than control siblings.The reasons for this discrepancy are not entirelyclear. Nevertheless, it may be in part due to(i) differences in pre-accident child, family andsibling functioning and (ii) behavioural outcomeof the injured child.
Swift et al. [46] included baseline standardizedevaluations of injured child and family functioningbefore the accident. In the majority of cases, theassessment was conducted within 3 weeks post-accident. On average the results indicated thatinjured children’s behaviour and family functioningwere within the normal range before the accident.Fay and Barker-Collo [47] asked parents to indicatewhether injured children had any pre-existingbehavioural difficulties but did not administer anyformal measures of pre-accident behavioural func-tioning. In addition, this question was asked 6–24months post-accident, which could have reduced thereliability of the parent report. Neither Fay andBarker-Collo [47] nor McMahon et al. [45] reportedany information about pre-morbid family function-ing. McMahon et al. [45] had no information aboutthe injured children’s pre-injury behavioural status.Finally, none of these papers contained informationon pre-accident sibling behaviour. Fay and Barker-Collo [47] argued that a high level of internalizingbehavioural difficulties found in their sample wassecondary to the significantly higher level of exter-nalizing behavioural problems reported by parents inthe TBI group. McMahon et al. [45] did not reporton the behavioural features of the TBI group. In thelarge, carefully designed study of Swift et al. [46],behavioural features of the TBI group were also notspecified in the paper on sibling outcomes. Thus, theexplanation offered by Fay and Barker-Collo [47] isalso plausible.
Overall, the small number of studies specificallyconsidering sibling outcomes gives a somewhatmixed picture. Whilst Orsillo et al. [44] found highlevels of psychological distress via a standardizedmeasure in their sample of 13 siblings, subsequentstudies that used a comparison group design did notunequivocally find increases in psychological diffi-culties, despite the consistent use of a psychome-trically sound measure: The CBCL. Possibleexplanations for the discrepant results are betweenstudy differences in pre-existing behavioural and
family functioning as well as injured child behaviourand level of family functioning post-accident.
The lived experience of siblings with
a brain-injured brother or sister
Much of what is known about the subjective siblingexperience of living with a brother or sister who hasa TBI comes from studies that used interviewswith the siblings themselves or individual writtenaccounts. Most of the studies have included only asmall number of child and adult siblings (n¼ 3–8)and are single event interviews without any long-itudinal perspective [43, 48–50].
O’Hara et al. [48] were one of the first to report onthe lived experience of siblings of a brain-injuredbrother or sister. The paper documented presenta-tions made by a panel of three siblings (as well aschildren of head injured parents) at the 1991 Annualmeeting of the Georgia Head Injury Association.According to the transcript, common themesincluded (i) no longer feeling carefree like theirother friends, (ii) worrying about the future of theinjured siblings and needing information, reassur-ance, direction and guidance that were often notavailable within the family and (iii) having a sense ofincreased responsibility and pressure (such as drivingthe injured person around to appointments) that wasbeyond their years and at times resulting in a sense ofrestricted time for pursuing their own lives. Siblings’expressed hope for their brother’s or sister’s inde-pendence and voiced the need for individual siblingcounselling or support.
Similar themes have been found in a qualitativeexploratory study carried out by Gill and Wells [50].They interviewed eight adolescent and adult siblings,all of whom were living with the injured familymember who sustained TBI of unspecified severityat 7–22 years of age. Some 2.5–14 years post-injurysiblings reported that their lives had changed andremained different from what they expected them tobe ever since the TBI. They described four support-ing themes. The first theme included change in
injured sibling, defined as the reason for the differencein the well siblings’ life, which included the directeffects of the neuropsychological sequelae from TBIand its effect on the sibling relationship. The secondtheme was the experience of mixed emotions, definedas the well siblings’ reaction to the injury, whichincluded numerous but often conflicting emotionalstates, such as survivor guilt. The third theme, adifferent life rhythm, was defined as changes in the waythe well sibling went about day-to-day life, whichtended to include many practical responsibilities forthe injured sibling as well as changes in the degreeof closeness or distance in the sibling relationship.
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The final theme was related to a change in self,defined as ways in which the well sibling becamea different person, that included a revaluing ofpriorities but often in the context of considering theneeds of their brain-injured sibling as well as whatwas important to them in their life generally. In sum,both O’Hara et al. [48] and Gill and Wells [50] workindicates that the overarching experience of siblingsis of a qualitative change and a sense that life was‘forever different’.
Wade et al. [51] hypothesized that findings ofadverse sibling adjustment may stem from changesin the quality and quantity of time parents spent withthem. The changes usually began during the acutehospitalization stage when parents tended to beheavily involved with their injured child. Indeed,subsequent studies that involved mothers of childrenwith acquired brain injury [52] and siblings them-selves [53] confirmed this hypothesis. Specifically,Good [52] noted that mothers acknowledged anintense focus on the injured child post-accident,which in their mind was only possible in the contextof emotional neglect of other siblings in the family.Furthermore, in a study that involved interviewinga large number of siblings about their perceptionsof implied or imputed loss of parental affection post-accident [53], siblings indicated that many aspects ofparental nurturing decreased, which was often seenas a direct result of parents attending to the brain-injured siblings’ needs. Emotions of anger, jealousy,depression, loneliness and a sense of rejection werefrequently reported by these two samples of siblings[53, 54]. Given the ongoing demands of caring fora severely injured child, changes in the nature,quality and quantity of time spent with siblings maybe a permanent feature of the new family system.
Three of the studies used a quantitative approachto examine sibling relationships. In one of the firstprospective longitudinal studies considering familyoutcome following paediatric TBI, Rivara et al. [31]noted a deterioration in injured child and siblingrelationship from baseline to 3 months, but only inthe severe TBI group. Thus, it appears that the acutephase of injury may be a vulnerable period for siblingrelationships, especially in the context of significantfunctional sequelae. The strain in relationships,however, might persist over time as Swift et al.[46] found more negative sibling relationships infamilies of children with a moderate–severe TBIcompared to orthopaedic control families at the 4-year post-injury mark, but only for mixed gendersibling pairings. In contrast, Fay and Barker-Collo[47] found no difference in group averages forsibling ratings of impact of injury on the siblingrelationship between the TBI and orthopaedic groupat 6–24 months post-injury. This study includedonly a small number of siblings (n¼ 10) of children
who sustained milder head injuries compared tochildren included in the Rivara et al. [31] and Swiftet al. [46] studies. These children are less likely topresent with residual functional deficits arising fromthe brain injury. Therefore, their relationship withtheir siblings is less likely to be changed.
Factors associated with sibling outcome
following paediatric TBI
Some studies found that siblings’ outcome wasaffected by injured child sequelae. For example,McMahon et al. [45] found that poor functionaloutcome in the injured child (measured by the Wee-FIM) significantly correlated with lower sibling self-concept and higher depression scores. They arguedthat siblings of children who continue to havesignificant functional deficits may be at a higher riskfor adjustment difficulties. Fay and Barker-Collo [47]found a significant correlation between injuredchild’s and sibling behavioural difficulties.Moreover, siblings’ psychological outcome may beaffected by the type of behavioural difficultiesdisplayed by the injured child. Fay and Barker-Collo [47] noted that brain-injured children hadmore externalizing and total problem behaviours (asmeasured by the CBCL) than the injured orthopaediccomparison group. By comparison, their siblings hadsignificantly higher scores on the internalizing factorcompared to the orthopaedic siblings. They surmisedthat the result of living with an injured brother orsister, who displayed externalizing behavioural pro-blems following TBI, is associated with a significantincrease in internalizing behaviours in uninjuredsiblings. The authors concluded that it is not theinjury per se that impacts sibling behaviour but thespecific behavioural sequelae of the injured child.
Some studies [27, 43, 55] examined siblingsperception of changes in family functioning follow-ing child brain injury. They all found that siblingsof the injured children rated their families as havingpoorer functioning than a normative sample oruninjured controls, but failed to include a measureof sibling adjustment. It has been proposed thatsibling adjustment may be influenced by bothchanges in family functioning and injured childresidual functional outcome. Swift et al. [46]conducted the only study that examined the impactof both these factors on siblings behaviour. Separateregression analyses indicated that each of thesefactors were significant predictors of siblings out-come. However, when both factors were included inthe same analyses only injured child’s behaviouralproblems remained a significant predictor of siblingbehavioural problems. Therefore, the authors sug-gest that injured child behavioural problems may
Paediatric traumatic brain injury: A review of siblings’ outcome 11
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Tab
leI.
Su
mm
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of
stu
die
sco
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and
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on
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per
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dou
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e
[42]
Type:
Qu
alit
ativ
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No
Tim
esi
nce
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ry:
1–4
year
s
Rec
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met
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adm
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bet
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wit
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aum
asc
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ths
post
-dis
char
geS
am
ple
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of
sib
lin
gsn
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rep
ort
edA
ges:
Not
rep
ort
edIn
jure
dper
son
chara
cter
istics
:A
geM¼
7.6
year
sIm
pair
men
t:34/5
0p
hys
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and
or
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on
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24/5
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tion
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emory
or
lear
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g,>
25%
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al,
80%
edu
cati
on
al
Foc
us:
Fam
ily
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on
alan
db
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fun
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nin
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ants
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aren
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on
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nd
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esti
on
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aire
adm
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tere
dvi
ate
lep
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terv
iew
Psy
cholo
gica
lou
tcom
e.
46%
of
sib
lin
gsd
evel
op
edso
me
emo-
tion
alre
acti
on
s,sc
hool
pro
ble
ms
or
aggr
essi
vep
erso
nal
ity
chan
ges
[43]
Type:
Qu
alit
ativ
eC
ontr
olgro
up:
No
Tim
esi
nce
inju
ry:
M¼
3ye
ars
(2m
on
ths–
18ye
ars)
Rec
ruitm
ent
criter
iaand
met
hod
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BI
mal
esin
jure
dat
14–2
5ye
ars
and>
18
mon
ths
post
-in
jury
and
livi
ng
wit
hp
aren
ts;
fam
ilie
sin
vite
dto
afa
mily
retr
eat
Sam
ple
:7
sib
lin
gsA
ges:
M¼
17
year
sIn
jure
dper
son
chara
cter
istics
:S
ever
eT
BI;
seve
rely
dis
able
d(a
uth
or
jud
gem
ent)
Sam
ple
:13
TB
Im
ales
Foc
us:
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ily
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ber
s–ty
pes
of
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-b
lem
sfa
ced
and
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ing
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tegi
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sed
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rmants
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iblin
gs,
moth
ers,
TB
Ich
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dre
nA
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pd
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ssio
n
Most
sign
ific
ant
pro
ble
ms
post
-TB
I.
Sib
lin
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enti
fied
incr
ease
inp
erso
nal
resp
on
sib
ilit
ies;
fam
ily
dis
tres
s;co
n-
cern
for
the
futu
reof
thei
rb
roth
ers
and
thei
rb
roth
er’s
auto
nom
y.
Moth
ers
iden
tifi
edim
pac
tof
son
’sin
jury
on
sib
lin
gsas
on
eof
five
most
sign
ific
ant
pro
ble
ms
post
-TB
I;th
atth
eyw
ere
aske
dto
grow
up
too
qu
ickl
yan
d‘t
ota
keon
agr
eat
dea
lof
resp
on
sib
ilit
yfo
rth
eir
bro
ther
’.
TB
Ich
ild
ren
did
not
iden
tify
any
sib
lin
g-re
late
dis
sues
[48]
Type:
Qu
alit
ativ
eC
ontr
olgro
up:
No
Tim
esi
nce
inju
ry:
1st
sub
ject
,5
year
s;2n
dsu
bje
ct,
8ye
ars;
3rd
sub
ject
,n
ot
rep
ort
ed
Rec
ruitm
ent
criter
iaand
met
hod
:A
pan
elof
five
sib
lin
gsan
dch
ild
ren
of
TB
Ip
atie
nts
pre
sen
ted
thei
rco
nce
rns
ata
con
fere
nce
Sam
ple
:3
sib
lin
gsA
ges:
not
rep
ort
edIn
jure
dper
son
chara
cter
istics
:S
up
port
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ng
arra
nge
-m
ents
,w
hee
lch
air
use
,at
ten
din
gco
lleg
ear
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on
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pas
sin
g
Foc
us:
Sib
lin
gis
sues
and
con
cern
sof
livi
ng
wit
ha
TB
Ip
erso
nIn
form
ants
:S
iblin
gsA
sses
smen
t:P
anel
inte
rvie
w
Th
emes
.N
egative:
more
resp
on
sib
ilit
y,n
ot
care
free
anym
ore
,fa
mily
wen
tin
dif
fere
nt
dir
ecti
on
s.
Pos
itiv
e:ea
chd
aya
new
exp
erie
nce
.N
eeded
:su
pp
ort
,in
form
atio
nab
ou
th
ead
inju
ry,
dir
ecti
on
,an
dco
mm
u-
nic
atio
n.
Cop
ing:
par
ents
and
oth
ers
shou
ldas
ksi
blin
gsh
ow
they
feel
abou
th
elp
ing
ou
t.
Futu
re:
ind
epen
den
cefo
rp
erso
nw
ith
TB
Ian
dgr
eate
rco
mm
un
ity
acce
p-
tan
ce
12 M. Sambuco et al.
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y M
ichi
gan
Uni
vers
ity o
n 11
/02/
14Fo
r pe
rson
al u
se o
nly.
[55]
Type:
Qu
anti
tati
veC
ontr
olgro
up:
Yes
;h
ealt
hy
com
-p
aris
on
Tim
esi
nce
inju
ry:�
2ye
ars
Rec
ruitm
ent
criter
iaand
met
hod
:2
par
ent
fam
ilie
sw
ith
TB
Im
ales
bet
wee
nag
esof
14–1
6ye
ars
recr
uit
edvi
aW
ash
ingt
on
Sta
teH
ead
Inju
ryF
ou
nd
atio
n&
oth
erh
ead
inju
ryorg
aniz
atio
ns;
Non
-in
jure
dsi
blin
gscl
ose
stin
age
recr
uit
edvi
aT
BI
fam
ily
nom
inat
ion
Sam
ple
:30
TB
Isi
blin
gs,
30
con
trol
sib
lin
gsA
ges:
M¼
15.2
7(1
1–2
2ye
ars)
16.4
0(1
1–2
2ye
ars)
,re
spec
tive
ly.
Inju
red
per
son
chara
cter
istics
:M
ild
–mod
erat
eT
BI;
WIS
C-R
full
scal
eIQ
(79–1
10)
Foc
us:
Fam
ily
mem
ber
s-p
erce
ived
fam
ily
fun
ctio
nin
gan
dp
roje
cted
fam
ily
auto
n-
om
yIn
form
ants
:S
iblin
gs,
par
ents
,T
BI
adole
s-ce
nts
and
con
trol
adole
scen
tsA
sses
smen
t:S
tan
dar
diz
edq
ues
tion
nai
res
Pro
ject
edau
ton
om
y.
Sib
lin
gsof
TB
Iad
ole
scen
tsre
port
edth
eir
par
ents
ash
and
lin
gsi
tuat
ion
sle
ssau
ton
om
ou
sly
than
con
trol
sib
-lin
gsan
din
com
par
ison
toth
eir
ow
nfa
mily
mem
ber
sF
amily
fun
ctio
nin
g.
Sib
lin
gsof
TB
Iad
ole
scen
tsre
port
edsi
gnif
ican
tly
poore
rp
erce
ived
fun
c-ti
on
ing
than
con
trol
sib
lin
gs,
on
6/7
sub
-sca
les
[31]
Type:
Lon
gitu
din
al,
pro
spec
tive
and
qu
anti
tati
veC
ontr
olgro
up:
No
Tim
esi
nce
inju
ry:
1-y
ear
Rec
ruitm
ent
criter
iaand
met
hod
:T
BI
per
son
sag
ed6–1
6ye
ars
con
secu
tive
lyen
rolled
from
two
regi
on
alm
edic
alce
ntr
esE
xcl
usi
oncr
iter
ia:
pre
-exi
stin
gp
sych
iatr
icilln
ess,
moto
rim
pai
rmen
t,h
ead
inju
ryan
dIQ
<75;
En
glis
hp
rim
ary
lan
guag
esp
oke
nat
hom
eIn
jure
dper
son
chara
cter
istics
:M
ild
–sev
ere
TB
I;S
amp
le:
50
mild
,25
mod
erat
e,19
seve
reT
BI
Age
s:70%<
12
year
s,30%>
12
year
s
Foc
us:
Fam
ily
and
TB
Ip
erso
nou
tcom
ean
dp
red
icto
rsof
fam
ily
ou
tcom
ep
ost
TB
IIn
form
ants
:P
aren
tsA
sses
smen
t:S
tan
dar
diz
edq
ues
tion
nai
res
and
fam
ily
inte
rvie
wra
tin
gsC
omple
ted:
3w
eeks
,3
mon
ths
and
12
mon
ths
post
inju
ry
Sib
lin
gre
lati
on
ship
.In
jure
dp
erso
ns
wit
hse
vere
TB
Ih
adth
ela
rges
tm
ean
chan
gein
thei
rsi
blin
gre
lati
on
ship
s(f
or
the
wors
e)p
re-i
nju
ryto
3m
on
ths
post
-acc
iden
t.
Fro
m3–1
2m
on
ths,
det
erio
rati
on
inth
esi
blin
gre
lati
on
ship
con
tin
ued
atal
lle
vels
of
seve
rity
bu
tth
isch
ange
was
not
sign
ific
ant
asa
fun
ctio
nof
inju
ryse
veri
ty[4
4]
Type:
Qu
anti
tati
veC
ontr
olgro
up:
No,
(uti
lise
da
norm
ativ
ere
fere
nce
grou
p)
Tim
esi
nce
inju
ry:
M¼
5ye
ars
2m
on
ths
(3m
on
ths–
12
year
s5
mon
ths)
Rec
ruitm
ent
criter
iaand
met
hod
:T
BI
per
son
seen
for
atle
ast
on
eou
tpat
ien
tre
hab
ilit
atio
nvi
sit;
qu
esti
on
nai
res
mai
led
to20
iden
tifi
edsi
blin
gsS
am
ple
:13
sib
lin
gsA
ges:
M¼
21.6
year
s,ra
nge
14–3
0ye
ars
Age
sat
inju
ry:
M¼
17,
ran
ge7–2
8ye
ars
Inju
red
per
son
chara
cter
istics
:S
ever
eT
BI;
11/1
3h
adp
hys
ical
,co
gnit
ive
and
psy
choso
cial
imp
airm
ents
;8/1
3d
rug
or
alco
hol
use
asso
ciat
edw
ith
the
acci
den
tin
wh
ich
TB
Iw
assu
stai
ned
(sib
lin
gre
port
)A
ges
at
ass
essm
ent:
17–2
6ye
ars
Age
sat
inju
ry:
13–2
1ye
ars
Foc
us:
Sib
lin
gp
sych
olo
gica
ld
istr
ess
and
cop
ing
Info
rmants
:S
iblin
gsA
sses
smen
t:S
tan
dar
diz
edq
ues
tion
nai
res
Psy
cholo
gica
ld
istr
ess
.S
iblin
gsex
per
ien
ced
sign
ific
antl
yhig
her
sym
pto
mse
veri
tyth
anth
en
orm
on
ob
sess
ive–
com
pu
lsiv
eth
ink-
ing,
inte
rper
son
alse
nsi
tivi
ty,p
aran
oid
idea
tion
and
psy
choti
cism
(bu
tn
ot
on
som
atiz
atio
n,
dep
ress
ion
,an
xiet
y,h
ost
ilit
yan
dp
hob
ican
xiet
y).
83%
of
sib
lin
gsm
etcr
iter
iafo
rca
se-
nes
Cop
ing
.S
iblin
gssc
ore
dsi
gnif
ican
tly
low
erth
anth
en
orm
on
beh
avio
urs
and
atti
tud
esas
soci
ated
wit
hef
fect
ive
pro
ble
m-s
ol-
vin
gS
iblin
gsu
tilise
dan
equ
alu
seof
emoti
on
alan
dp
rob
lem
focu
sed
stra
-te
gies
Dys
fun
ctio
nal
atti
tud
es.
Sib
lin
gssc
ore
dsi
gnif
ican
tly
hig
her
than
norm
ativ
e[5
3]
Type:
Qu
alit
ativ
eC
ontr
olgro
up:
No
Tim
esi
nce
inju
ry:
Not
rep
ort
ed
Rec
ruitm
entcr
iter
iaand
met
hod
:S
iblin
gsofch
ild
ren
wh
oh
ada
TB
Ian
dw
ho
had
or
wer
ecu
rren
tly
un
der
goin
gco
un
sellin
gfo
rsi
blin
gri
valr
y;P
aren
tsco
nta
cted
by
ph
on
eto
allo
wch
ild
top
arti
cip
ate
Sam
ple
:40
sib
lin
gsA
ges:
4–1
1ye
ars
Inju
red
per
son
chara
cter
istics
:N
ot
rep
ort
ed.
Stu
dy
def
ined
bra
inin
jury
asp
re-n
atal
asw
ell
asp
ost
-nat
al
Foc
us:
Sib
lin
gfe
elin
gsan
dco
gnit
ion
sof
imp
lied
loss
of
par
enta
laf
fect
ion
Info
rmants
:S
iblin
gsA
sses
smen
t:S
tru
ctu
red
inte
rvie
w
Sib
lin
gri
valr
y.
Sib
lin
gp
erce
ived
loss
of
par
enta
laf
fect
ion
and
incr
ease
dre
spon
sib
il-
itie
sge
ner
ated
feel
ings
of:
An
ger,
jeal
ou
sy,
reje
ctio
nan
dd
epre
ssio
n
(con
tinued
)
Paediatric traumatic brain injury: A review of siblings’ outcome 13
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y M
ichi
gan
Uni
vers
ity o
n 11
/02/
14Fo
r pe
rson
al u
se o
nly.
Tab
leI.
Con
tin
ued
.
Stu
dy
(in
chro
nolo
gica
lord
er)
Stu
dy
des
ign
Sam
plin
gM
eth
od
and
mea
sure
sF
ind
ings
on
sib
lin
gex
per
ien
cean
dou
tcom
e
[50]
Type:
Qu
alit
ativ
eC
ontr
olgro
up:
No
Tim
esi
nce
inju
ry:
2.5
mon
ths–
14
year
s
Rec
ruitm
ent
criter
iaand
met
hod
:N
ewsl
ette
rad
vert
ise-
men
t,le
tter
dis
trib
ute
db
yh
ead
inju
ryas
soci
atio
nan
dre
hab
ilit
atio
nce
ntr
est
aff
inm
etro
polita
nso
uth
ern
On
tari
o,
Can
ada;
livi
ng
wit
hp
aren
tsan
dsi
blin
gsS
am
ple
:8
sib
lin
gsA
ges:
14–3
0ye
ars
Inju
red
per
son
chara
cter
istics
:H
ealt
hy
bef
ore
the
inju
ry;n
olo
nge
rlife
thre
aten
ing;>
1ye
arp
ost
-in
jury
Foc
us:
Sib
lin
gsu
bje
ctiv
eex
per
ien
ceof
TB
IIn
form
ants
:S
iblin
gsA
sses
smen
t:L
on
gin
terv
iew
Mai
nth
eme
.S
iblin
gsfe
ltfo
reve
rd
iffe
ren
t;co
m-
par
edto
thei
rp
re-T
BI,
thei
rex
pec
ta-
tion
san
dlive
sof
thei
rp
eers
Su
pp
ort
ing
them
es.
Ch
ange
sin
them
selv
esp
ost
-TB
IM
ixed
emoti
on
s;ex
per
ien
cin
gm
any,
som
etim
esco
nfl
icti
ng
feel
ings
.D
iffe
ren
tlife
rhyt
hm
;d
oin
gw
hat
itta
kes
tom
ain
tain
wel
lnes
sof
those
arou
nd
them
.C
han
gein
close
nes
s(4
close
r,4
less
close
).
Ch
ange
inse
lf:
chan
gein
thei
rp
rio-
riti
esan
dfo
cus
[45]
Type:
Qu
anti
tati
veC
ontr
olgro
up:
Hea
lth
yco
mp
aris
on
Tim
esi
nce
inju
ry:
3–1
8m
on
ths
Rec
ruitm
ent
criter
iaand
met
hod
:C
auca
sian
TB
Ip
erso
ns
wit
ha
GC
S<
8;
sib
lin
gscl
ose
stin
age,
8–1
7ye
ars,
enro
lled
ina
regu
lar
clas
sroom
,re
sid
ing
inth
esa
me
hom
eas
inju
red
per
son
wit
hn
op
sych
iatr
icilln
ess;
con
trol
sib
lin
gsse
lect
edfr
om
TB
Isi
blin
gcl
assm
ates
Sam
ple
:12
TB
Isi
blin
gsan
d11
hea
lth
yco
mp
aris
on
sib
lin
gsA
ges:
M¼
13.1
year
sIn
jure
dper
son
chara
cter
istics
:S
ever
eT
BI
Foc
us:
Sib
lin
gb
ehav
iou
r,m
ood
and
self
–es
teem
Info
rmants
:S
iblin
gs,
par
ents
,te
ach
ers
Ass
essm
ent:
Sta
nd
ard
ized
qu
esti
on
nai
res
Beh
avio
ur,
self
-est
eem
and
mood
.N
osi
gnif
ican
tb
etw
een
-gro
up
dif
fer-
ence
son
self
,p
aren
tor
teac
her
rep
ort
sS
elf-
este
em.
Ass
oci
ated
wit
hsi
blin
gse
lf-e
stee
m;
poore
rfu
nct
ion
alou
tcom
ere
late
dto
poore
rse
lf-e
stee
mon
glob
alse
lf-
wort
h,
ph
ysic
alap
pea
ran
cean
db
eha-
viou
ral
con
du
ct[4
6]
Type:
Qu
anti
tati
veC
ontr
olgro
up:
Ort
hop
aed
icT
ime
since
inju
ry:
4ye
ars
Rec
ruitm
ent
criter
iaand
met
hod
:S
iblin
gsn
ot
inju
red
inth
eac
cid
ent;
sib
lin
gcl
ose
stin
age
toth
ein
jure
dch
ild
;>
6ye
ars
and
livi
ng
wit
hth
ein
jure
dch
ild
TB
IR
ecru
itm
ent
criter
ia:
Age
atin
jury
6–1
2ye
ars;
Acc
iden
tal
inju
ries
;F
ree
of
pre
-exi
stin
gn
euro
logi
cal
dif
ficu
ltie
s;E
ngl
ish
pri
mar
yla
ngu
age
spoke
nat
hom
eO
rthop
aed
icR
ecru
itm
ent
criter
ia:
Ab
on
efr
actu
rere
qu
ir-
ing
anove
rnig
ht
stay
;n
oev
iden
ceof
TB
IT
BI
Sam
ple
:64
sib
lin
gs(3
4se
vere
,30
mod
erat
eT
BI)
Age
s:13.1
and
14.7
year
s,re
spec
tive
lyO
rthop
aed
icsa
mple
:39
sib
lin
gsA
ges:
13.6
year
s
Foc
us:
Par
enta
lb
urd
enof
inju
ry,
sib
lin
gb
ehav
iou
ran
dre
lati
on
ship
wit
hin
jure
dp
erso
nIn
form
ants
:S
iblin
gs,
par
ents
Ass
essm
ent:
Sta
nd
ard
ized
qu
esti
on
nai
res
Beh
avio
ur
.N
osi
gnif
ican
td
iffe
ren
ces
bet
wee
nsi
blin
ggr
ou
ps
on
self
or
par
ent
rep
ort
s.
Sib
lin
gs’
beh
avio
ura
lp
rob
lem
sp
re-
dic
ted
by
beh
avio
ura
lp
rob
lem
sin
TB
Ich
ild
ren
Sib
lin
gre
lati
on
ship
s.
Both
TB
Igr
ou
ps
rep
ort
edm
ore
neg
ative
rela
tion
ship
chara
cter
istics
for
mix
ed-g
end
erd
yad
sco
mp
ared
toort
hop
aed
icgr
ou
p
14 M. Sambuco et al.
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y M
ichi
gan
Uni
vers
ity o
n 11
/02/
14Fo
r pe
rson
al u
se o
nly.
[52]
Type:
Qu
alit
ativ
eC
ontr
olgro
up:
No
Tim
esi
nce
inju
ry:
Not
rep
ort
ed
Rec
ruitm
ent
criter
iaand
met
hod
:p
aed
iatr
icT
BI;
con
-ta
cted
sup
port
grou
ps
for
fam
ilie
sw
ith
ach
ild
wh
osu
stai
ned
bra
inin
jury
Sam
ple
:3
moth
ers
Inju
red
per
son
chara
cter
istics
:S
ever
eT
BI
Age
sat
inju
ry:
6,
8an
d13
year
sC
urr
ent
age
:n
ot
rep
ort
edb
ut
all
TB
Ip
erso
ns
fin
ish
edsc
hool
and
two
atte
nd
ing
colleg
e
Foc
us:
Mat
ern
alex
per
ien
ces
of
cari
ng
for
aT
BI
child
Info
rmants
:P
aren
tsA
sses
smen
t:O
pen
end
edlo
ng
inte
rvie
w
Mat
ern
alp
erce
pti
on
of
sib
lin
gex
per
ien
cep
ost
-TB
I.
Inte
nse
mat
ern
alfo
cus
on
wel
l-b
ein
gof
inju
red
child
toem
oti
on
aln
egle
ctof
wel
lsi
blin
g
[47]
Type:
Qu
anti
tati
veC
ontr
olgro
up:
Ort
hop
aed
icT
ime
since
inju
ry:
6–2
4m
on
ths
Rec
ruitm
ent
criter
iaand
met
hod
:6–1
8ye
ars;
free
of
pre
-ex
isti
ng
neu
rolo
gica
ld
iffi
cult
ies;
En
glis
hp
rim
ary
lan
-gu
age
spoke
nat
hom
e;in
par
ent/
care
give
rca
rean
dh
osp
ital
ized
for
atle
ast
4n
igh
tsS
am
ple
:10
TB
Isi
blin
gsan
d10
ort
hop
aed
icA
ges:
9–1
7ye
ars
Inju
red
per
son
chara
cter
istics
:M
ild
–mod
erat
eT
BI
Foc
us:
Sib
lin
gb
ehav
iou
ran
dre
lati
on
ship
wit
hin
jure
dp
erso
nIn
form
ants
:S
iblin
gs,
par
ents
Ass
essm
ent:
Sta
nd
ard
ized
qu
esti
on
nai
res
Beh
avio
ur
.T
BI
sib
lin
gsex
hib
ited
sign
ific
antl
ym
ore
inte
rnal
izin
gb
ehav
iou
ral
sym
p-
tom
sth
anort
hop
aed
icco
ntr
ols
(par
ent
rep
ort
)S
iblin
gre
lati
on
ship
s.
Rel
atio
nsh
ipra
tin
gsd
idn
ot
dif
fer
bet
wee
nsi
blin
ggr
ou
ps
Imp
act
of
inju
ryra
tin
gs.
Imp
act
of
inju
ryra
tin
gsd
idn
ot
dif
fer
bet
wee
nsi
blin
ggr
ou
ps
[54]
Type:
Qu
alit
ativ
eC
ontr
olgro
up:
No
Tim
esi
nce
inju
ry:
6m
on
ths
Rec
ruitm
ent
criter
iaand
met
hod
:T
BI
child
2–1
5ye
ars
wh
oat
ten
ded
are
hab
ilit
atio
ncl
inic
;tw
op
aren
tfa
milie
sw
ith
atle
ast
on
esi
blin
gS
am
ple
:6
par
ents
Inju
red
per
son
chara
cter
istics
:M
od
erat
e–se
vere
TB
IA
ges:
4.5
–10
year
s
Foc
us:
Par
enta
lex
per
ien
ces
and
per
cep
-ti
on
sof
tran
siti
on
sp
erio
dfr
om
hosp
ital
toh
om
eIn
form
ants
:P
aren
tsA
sses
smen
t:S
emi-
stru
ctu
red
inte
rvie
w
Th
emes
.S
iblin
gsre
port
edto
hav
eb
een
trau
-m
atiz
edb
yth
eT
BI
.S
iblin
gd
istr
ess
com
pou
nd
edb
yse
par
atio
nfr
om
par
ents
du
rin
gh
osp
i-ta
liza
tion
per
iod
.D
elib
erat
ep
aren
tal
atte
mp
tsto
mai
n-
tain
par
ent–
sib
lin
gre
lati
on
ship
by
spen
din
gq
ual
ity
tim
en
eces
sary
Paediatric traumatic brain injury: A review of siblings’ outcome 15
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have been largely responsible for poor siblingoutcome and general family stress.
Conclusions
In sum, the reviewed studies indicate that siblingsof children who sustained severe TBI may be at anincreased risk of developing psychological difficultiescompared to normative data or siblings of childrenwith orthopaedic injuries. Studies suggest that thebest predictor of sibling outcome is the behaviouralfunctioning of the injured child. In addition, theremay be qualitative changes in different aspects ofsiblings’ lives as well as in relationships with theirparents and injured siblings.
There are, however, some significant limitationsto generalizations of these findings. First, none of thestudies used a prospective longitudinal design toexamine siblings psychological well-being, whichcould change over time. For example, family studiesindicated that parents’ psychological well-beingworsened over the first year post-injury, but subse-quently improved, except for the parents who hadlimited resources and were caring for children whosustained severe TBI. Secondly, the majority of thesibling studies lacked measures of pre-morbidfunctioning which could have contributed to thegravity of their difficulties post-injury. Thirdly, theyare mainly conducted with teenage siblings whoseunderstanding of the events and psychologicalreactions are likely to be very different from that ofyounger siblings.
Ideally, future sibling outcome studies will useprospective, longitudinal design and include siblingsof all ages. Moreover, they need to consider pre-injury sibling, injured child and family level offunctioning. Furthermore, a combination of quanti-tative and qualitative measures could assist inelucidating the scope, type and gravity of changes.Such an approach could facilitate development ofa model of sibling adjustment, which is currentlylacking in child TBI.
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Paediatric traumatic brain injury: A review of siblings’ outcome 17
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