paediatric traumatic brain injury: a review of siblings’ outcome

11
Brain Injury, January 2008; 22(1): 7–17 REVIEW Paediatric traumatic brain injury: A review of siblings’ outcome MELISSA SAMBUCO 1 , NAOMI BROOKES 2 , & SUNCICA LAH 1 1 School of Psychology, University of Sydney, Sydney, Australia and 2 Brain Injury Rehabilitation Program, Sydney Children’s Hospital (Randwick), NSW, Australia (Received 27 July 2007; accepted 21 November 2007) Abstract Primary objective: This review aimed to identify main findings and critically evaluate literature that considered sibling outcomes 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. Identified literature was manually cross-referenced and all papers that identified siblings as the main subject of research or as secondary 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 sibling outcomes 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 behavioural difficulties are at an increased risk of adverse psychological outcome. Moreover, they may experience many qualitative changes in their life. The generalization and interpretation of the findings, however, is limited by many methodological shortcomings, 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 of child mortality and morbidity in Australia, with as many as 12 000 individuals under age 20 sustaining a TBI each year [1]. Most children achieve full recovery; however, 15% of injured children will experience temporary and/or permanent impair- ments [2]. Those who sustain moderate-to-severe TBI 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 academic achievement [9, 10]. In addition, novel personality [11], behavioural [12–15] and emotional difficulties [16] impact subsequent psychosocial development of the brain-injured child. A consistent dose– response relationship has been repeatedly identified for injury severity and cognitive and physical outcome [5, 7, 17, 18]. Family environment, psychosocial and pre-morbid factors, on the other hand, appear to have a stronger influence on behaviour and academic achievement post-accident [6, 7, 15, 19]. For injured children and their families, managing temporary or permanent neurobehavioural sequelae is an ongoing challenge, particularly as evidence suggests that the gravity of behavioural difficulties may increase over time [20]. With burden of care following child TBI tending to eventually rest with the family [21, 22], impact of injury will not only affect individual members and force adjustments but will also affect how 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 ß 2008 Informa UK Ltd. DOI: 10.1080/02699050701822022 Brain Inj Downloaded from informahealthcare.com by Michigan University on 11/02/14 For personal use only.

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Page 1: Paediatric traumatic brain injury: A review of siblings’ outcome

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

Paediatric traumatic brain injury: A review of siblings’ outcome 9

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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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lem

sfa

ced

and

cop

ing

stra

tegi

esu

sed

Info

rmants

:S

iblin

gs,

moth

ers,

TB

Ich

il-

dre

nA

sses

smen

t:G

rou

pd

iscu

ssio

n

Most

sign

ific

ant

pro

ble

ms

post

-TB

I.

Sib

lin

gsid

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

edlivi

ng

arra

nge

-m

ents

,w

hee

lch

air

use

,at

ten

din

gco

lleg

ear

em

enti

on

edin

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.

Page 7: Paediatric traumatic brain injury: A review of siblings’ outcome

[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:

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:

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:

21.6

year

s,ra

nge

14–3

0ye

ars

Age

sat

inju

ry:

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.

Page 8: Paediatric traumatic brain injury: A review of siblings’ outcome

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:

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

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lin

gre

lati

on

ship

s.

Both

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ou

ps

rep

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ore

neg

ative

rela

tion

ship

chara

cter

istics

for

mix

ed-g

end

erd

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sco

mp

ared

toort

hop

aed

icgr

ou

p

14 M. Sambuco et al.

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Page 9: Paediatric traumatic brain injury: A review of siblings’ outcome

[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

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ort

edb

ut

all

TB

Ip

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ns

fin

ish

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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

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:6–1

8ye

ars;

free

of

pre

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rolo

gica

ld

iffi

cult

ies;

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glis

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ary

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age

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give

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ple

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son

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istics

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ild

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erat

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BI

Foc

us:

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lin

gb

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lati

on

ship

wit

hin

jure

dp

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nIn

form

ants

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par

ents

Ass

essm

ent:

Sta

nd

ard

ized

qu

esti

on

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Beh

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BI

sib

lin

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hib

ited

sign

ific

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rnal

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sym

p-

tom

sth

anort

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ols

(par

ent

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)S

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gre

lati

on

ship

s.

Rel

atio

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ggr

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Imp

act

of

inju

ryra

tin

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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

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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

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ital

toh

om

eIn

form

ants

:P

aren

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t:S

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inte

rvie

w

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emes

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iblin

gsre

port

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eb

een

trau

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istr

ess

com

pou

nd

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atio

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ents

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rin

gh

osp

i-ta

liza

tion

per

iod

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erat

ep

aren

tal

atte

mp

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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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Page 10: Paediatric traumatic brain injury: A review of siblings’ outcome

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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