family carers and the adult head-injured: a critical review of carers' needs
TRANSCRIPT
Subject reviewFamily carers and the adult head-injured: a
critical review of carers’ needs
INDRAN I SINN AKARUP PAN and
DE NISE M . W IL LIAM S
Department of Psychology, Douglas Grant Rehabilitation Centre, Ayrshire CentralHospital, Irvine, Ayrshire, Scotland
(Received 11 September 2000; accepted 18 November 2000 )
Primary objective: To appraise recent literature on the topic of perceived needs of family carers of head-injured adult relatives. MEDLINE (1966± 2000), EMBASE PSYCHIATRY (1987± 1999), CINAHL(1982± January 2000) and PSYCHLIT (1967± 1999) databases were searched.Main outcomes and results: A total of 13 papers were reviewed, of which six employed standardizedresearch methods. The remainder used researcher developed questionnaires. Needs described by carersas important were predominantly related to information. Most unmet needs were linked to theprovision of emotional support. There were significant differences in the perceived needs and theirfulfilment between parental and spousal carers. In addition, unfulfilled needs could be predicted bybehavioural problems in patients.Conclusions: The design and variation in methodology of most studies reviewed limits the general-ization of reported data. Further research is required to fully identify both common and individualneeds of family carers of the head-injured.
Introduction
Head-injury presents a major problem within the western world, with an estimated2.2 annual hospital admissions for traumatic head injury (TBI) for every 1000 peopleof the population [1]. In the UK, it is estimated that 5.2 out of every 10 000 peoplesuffer a serious head injury each year [2]. It has been suggested that the trueincidence of injury is even greater, as ¹ 20% of head-injured individuals die priorto admission to hospital [3].
In contrast to dementia or stroke, head-injury has been observed to be predo-minately a problem of younger age groups. This poses particular challenges forpatient rehabilitation and family coping and adaptation, as carers are frequentlyrequired to give a life time’s care and support for relatives who would otherwisebe independent [4]. The head-injury group in the US primarily includes individualsof 16± 35 years [5]. In a British study, Flanagan [4] stated that head injury occursmainly in young people in the age range 17± 25 years. In addition, there appears tobe an association between cause of injury and patient age. Two studies based onhead-injured patients from Astley Ainslie Hospital in Edinburgh noted that injuries
Brain Injury ISSN 0269± 9052 print/ISSN 1362± 301X online # 2001 Taylor & Francis Ltdhttp://www.tandf.co.uk/journals
DOI: 10.1080/02699050010025759
Correspondence to: Indrani Sinnakaruppan, Department of Psychology, Douglas GrantRehabilitation Centre, Ayrshire Central Hospital, Irvine, Ayrshire, Scotland KA12 8SS.
BRAIN INJURY, 2001, VOL. 15, NO. 8, 653 ± 672
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could equally be attributed to either Road Traffic Accidents (RTA) or falls [6, 7].Younger patients had typically sustained head-injury in an RTA, whilst olderpatients could attribute their injury to a fall. Tennant [8] reported that age, gender,social and economic aspects of an area can contribute to variations in regional figuresof head-injury incidence.
Family carers are defined as those people who are related to a head-injuredindividual and perform a major unpaid caregiving function. Within the head-injured population, the majority of caring activities are undertaken by family mem-bers [5]. As the victims of head-injury are predominantly young males, the keyresponsibility for their care falls mainly upon their mothers and wives. The needsexpressed by these carers are multiple, and a number of studies have examined these,their relative degree of associated importance, and whether these needs are fulfilled.
Needs of family carers of head-injured relatives
Mauss-Clum and Ryan [9] conducted a pilot evaluation of 30 US family carers’needs at the time of injury. Priority needs were identified as clear explanations oftheir relative’s condition and discussion of a realistic prognosis for that person. Thestudy succeeds in highlighting key areas for further research. As head injury is oftenlong term in effect, it is important to evaluate carers’ needs after the initial crisis ofinjury occurrence.
Campbell [10] assessed the needs of 14 US carers of the head-injured andidentified a number of key problems. Within the psychological category, all ofCampbell’s carers expressed a need to feel there is hope’, and 93% (n ˆ 13) to`know what the future held for their relatives’. The `most important’ social needlisted was to have time and activities for myself outside the house’, whilst the mostcommonly expressed educational needs were to learn the effects of head injury’, tolearn about community resources’ and to have questions answered honestly’. Alsoof importance within the educational category was the need to obtain informationabout financial assistance’ . Undoubtedly, Campbell demonstrated the multiplicity ofcarers’ needs, but the study is limited by a poor response rate (19%), small samplesize (n ˆ 14), insufficient demographic information, non-standardized methods,descriptive approach and biased sample population.
The approach of Grant and Bean [11] to a similar objective contrasts with thatdescribed by Campbell [10]. These authors also explored the needs of informalcarers of the head-injured in a US population. However, rather than employ thesame method, these authors elected to derive a questionnaire from the NeumanSystems Model proposed by Betty Neuman in 1989 [41]. Grant and Bean adoptedthe model as a basis to classify carers’ needs as intrapersonal, interpersonal or extra-personal stressors. They reduced the number of system variables to three and termedthem physiological, psychosociocultural and spiritual. The physiological variablewas interpreted as relating to bodily structure and function, whereas the psychoso-ciocultural variable referred to economics, mental processes, relationships and socialand cultural functions, and the spiritual variable represented belief systems. Withinthis study, the authors defined each category of stressor as follows: Intrapersonalstressors were those needs that are internal factors impacting upon physiological,psychosociocultural, or spiritual homeostasis’; interpersonal stressors were consid-ered to be needs that occured outside the caregiver’s environment at a proximalrange that impacted upon physiological, psychosociocultural or spiritual homeo-
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stasis’. The term proximal indicated relationships between the carer and patient orother family and friends. Extrapersonal stressors were `needs occuring outside theinformal caregiver’ s environment at a distal range’ that influenced the regulation ofthe three variables; the term distal referred to relationships between the carer andgroups, communities or material resources. The authors stated that experts in theuse of the Neuman Systems Model confirmed the validity of their questionnaire.
Using this approach, Grant and Bean [11] tested 84 informal carers and identified110 different needs. Within the intrapersonal group, the needs expressed mostfrequently by carers were time for self ’ (21%) and time for social activities’(8%). This is in agreement with Campbell [10] in which 78% of subjects felt theyneeded to have time and activities for themselves outside the house’ . There appearsto be a large discrepancy in the actual proportions of carers indicating these needs.This may have reflected differences in sampling or methodologies used. Althoughboth samples were recruited from head-injury foundations, Grant and Bean can-vassed for subjects by mail survey of membership lists, whereas Campbell attendedsupport group meetings for volunteers; Campbell also provided questionnaires forrelatives of group participants. Within Campbell’s 28-item Questionnaire, only 17questions related to carers’ needs. In contrast, Grant and Bean’s survey identified110 needs, but failed to reveal details of the questions posed.
Similarly, both studies highlighted carers’ concerns over the future welfare of thepatient. In the Grant and Bean study, this is described in terms of assurance ofpatient care’ in circumstances of the carer’s death or disability, whereas the ques-tionnaire utilised by Campell lists the need as to know what the future holds for myrelative’. This is representative of a further problem in comparing studies withsimilar aims but using different methods to obtain data, i.e. different wording inthe questionnaires may have influenced interpretation by carers, thereby influencingtheir answer. Again, discrepancies were found in the actual proportions of carersexpressing the need, 93% (13 people) of Campbell’s carers versus Grant and Bean’s7% (six people).
The most commonly occuring interpersonal stressors within the more recentstudy [11] were the need for support groups (26%) and friends to assist with house-keeping tasks (8%). It appears that the majority of needs expressed in Grant andBean’s sample group lay within the extrapersonal category. These were needs forrespite care (26%), financial support for physical care of the patient (19%), day careprogrammes for physical needs (15%), day care programmes for psychosocioculturalneeds (15%), transportation services (14%), information about head injury (13%),information about psychosociocultural care of the patient (11%), individuals to carefor patients (10%), and financial support for psychosociocultural care (10%). This isin agreement with Campbell [10] in terms of the commonly expressed concern foreducation regarding head injury and its care. Day care programmes and respite careas specifics were not addressed by Campbell’s questionnaire, but an indication oftheir need may be represented in the requirement by all carers to learn more aboutcommunity resources. Overall, the two studies present a broadly similar picture ofthe needs of family carers of the head-injured.
The Neuman Systems Model was also utilised in a study by Jones [12], in whichthe stressors of 23 primary carers of head-injured relatives were identified andcompared with their levels of stress. In this Canadian trial, the authors classifiedall items on the Appraisal Caregiving Scale (Oberst 1992, personal communication
Family carers and the adult head-injured 655
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to Jones) in terms of intra-, inter- or extrapersonal stressors using Neuman’s defini-tions. Jones then identified carers’ needs by applying the categorized scale.
Results showed that intrapersonal stressors were feeling the situation was stress-ful, feelings about oneself, personal growth, the effect on life-style, worry aboutdoing things, fear regarding own physical health and each day becoming moremeaningful’. The interpersonal stressors revealed were independence, relationshipswith friends and family, the closeness of relationships with family, friends and others,relationship with the person needing care, and worry about the ability to help theperson in the future’ . These were found to have the highest correlation with carerstress levels measured by the Burden Interview [13]. Extrapersonal stressors werethe discovery of previous unfamiliar resources and the fear of not having energy andendurance in the future’ . A direct comparison of Jones’ results cannot be made witheither Campbell’s [10] or Grant and Bean’s [11] study, as different methods havebeen used, however some common themes emerge.
Concerns regarding the patient’s future care were highlighted in all three studies,although Jones classified this need as an interpersonal stressor, Grant and Beandescribed it as an intrapersonal stressor. A second common concern was that regard-ing the identification or realization of new resources or supports. This is defined asseveral different needs, with Grant and Bean [11] including respite care, day careprogrammes and availability of specific information. Both Jones [12] and Campbell[10] investigated broader more generalized needs such as community resourceavailability [10] and the discovery of new resources [12]. Campbell and Jonesused 28 and 27 item questionnaires, respectively.
In 1993, Acorn [14] published the results of a study designed to investigate theneeds of carers of head-injured survivors and the effectiveness of family supportgroups in meeting these needs. The needs of 42 carers in the British Columbiaregion of Canada were assessed using a modified version of Campbell’ s question-naire. The questionnaire was divided into two sections, the first of which comprised22 items largely concerned with the elucidation of demographic information, situa-tional influences and causes for worry regarding the care of the patient. The secondpart of the questionnaire identified three broad categories of needs, i.e. educational,psychological and stress management. This mainly differs from Campbell’s originalpaper in classification of the needs. Acorn’s results proved similar to those reportedby other groups [10± 12]. As Acorn [14] and Campbell [10] used similar question-naires, their results can be more readily compared. Both studies demonstrated similarresults, as indicated in table 1.
From table 1, the proportions of carers indicating a particular need as importantappear very similar, with the exception of obtaining information about financialassistance and guidance of the family in communication skills. A higher percentageof Campbell’s group rated the need for the former; whether this bears any relationto the socio-economic status of the subjects is unclear, as this information was notreported. Interestingly, the majority of Acorn’s carers (45.2%) earned less than$20 000 per annum, although this is not necessarily an indication of the householdwealth prior to the head-injury. Despite a few minor variations, the two studies arefundamentally supportive in their findings.
Carers’ concern over patients’ future has also been demonstrated by Knight et al.[15] in a study of 52 New Zealand carers. Carers were assessed by a 30 item CareBurden Scale developed by Knight et al. [16]. The results showed that carers hadparticular worries over the future of their head-injured relative, 77% (n ˆ 40) felt
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worried about their patient, and 73% (n ˆ 38) were fearful of the future for theirrelative. Despite the high proportion of female patients in the sample populationstudied (42.9% female patients, n ˆ 21), the results support the findings of Campbell[10], Grant and Bean [11] and Acorn [14]. Knight et al. [15] attempted to comparethe relative burdens of spousal and parental carers with regard to these particularproblems. Results revealed significant differences in pessimism and concern for thefuture. Parental carers were more distressed by this issue and also by physical burdenthan spousal carers. No other differences were found and the two groups weresimilar in overall burden, total number of needs/problems and distress levels.
In 1984, Mathis [17] examined whether the needs of family carers of the head-injured differed from those of carers whose relatives were critically ill but without anacute head injury. Fifteen subjects had critically ill relatives without head injury,whilst 11 subjects had critically ill family members with head injury. The instru-ment, developed by Molter [18], comprised a structured interview of 45 needsstatements which were rated in degrees of importance, thus allowing ranking offamily needs (the Critical Care Needs Inventory). Mathis’ results demonstrated thatthe importance rating’ of family needs differed significantly between carers ofcritically ill relatives with and without head-injury. However, it is pertinent tonote that a comparison of the non-head-injury group with a similar group reportedin a previous study [18] also revealed significant differences. Mathis explains this interms of different personal family needs. She does, however, also consider thepossible influence of sample, instrument and methodology.
Very little demographic data was reported for family members or their injuredrelatives. The study is also limited by the standard small sample size and biasedsample. Despite these limitations and statistical differences, Mathis [17] reveals asimilar theme throughout each of the test groups. More than half of the membersin both Mathis’ groups (head-injured versus critically ill) and Molter’s [18] group(critically ill) reported the same eight needs as important. These were to havequestions answered honestly’, to feel that hospital personnel cared about the rela-tive’, to know exactly what was done for the relative’ , to feel that there was hope’,
Family carers and the adult head-injured 657
Table 1. Frequency of needs rated as important by family carers
Needs [10] [14]
EducationalTo have questions answered honestly 100% 93%To learn about community resources 100% 93%To learn effects of head injury 100% 91%To learn methods to adjust to memory loss 64% 74%To learn methods of adjusting to behavioural changes 71% 74%To obtain information about financial assistance 93% 67%
PsychologicalTo know what the future holds for my relative 93% 95%To talk about my feelings 78% 81%To have emotional support 86% 90%To feel there is hope 100% 93%
Stress managementTo have time and activities for myself outside the home 83% 78%To guide our family in communication skills 57% 74%
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to have specific facts concerning the relative’ s progress’, reassurance that the bestcare possible was being given to the relative’ , to know they would be called athome if there were any changes in their relative’ s condition’ , and to receiveinformation about the relative’s condition at least once a day’ .
Mathis study was repeated by Engli and Kirsivali-Farmer [19] using a populationrecruited from different intensive care units within a large Canadian teaching hos-pital. In this instance, the same questionnaire (Molter’s Critical Care Family NeedsInventory) was completed within the subjects’ own time and returned by mail.Twenty-three relatives of critically ill patients without head injury and 22 familymembers of critically ill patients with head injury were recruited to the study. Onlysix (26%) of the non-head injury and eight (36%) of the head injury questionnaireswere returned, thus reducing the sample size considerably. Results confirmedMathis’ finding that significant differences exist in the importance rating’ of per-ceived family needs of families of the critically ill with and without head-injury.Despite this, five needs were perceived as important or very important by both testgroups, although they were ranked somewhat differently. These were: to be calledat home about the patient’s condition’ , to feel that the hospital personnel careabout the patient’ , to know how the patient is being treated medically’ , to haveexplanations that are understandable’, and to know specific facts concerning thepatient’s progress’. An information trend appeared to be recurrent throughout theimportant needs of all subjects. Most needs were reported by both test groups as met(78.5%) and those responsible were mainly clinical staff (>80%).
Although Engli and Kirsivali-Farmer [19] reinforce the previous result of Mathis[17], there are some discrepancies between the studies. The authors attributed theseto dissimilar data collection methods and demographic differences. The small samplesize of both studies limits the generalization of the results, as does the scarcity ofdemographic data. Moreover, both studies assessed only family members of acutehospitalized patients. It might be anticipated that family needs would evolve andbecome increasingly dissimilar between the two groups post-hospital discharge.Indeed, subsequent to the return of the patient to the home environment, familiesof severely head-injured relatives continue to experience chronic stress and psycho-logical distress [20± 22].
This issue has been addressed by Stebbins and Leung [23] in a study of 29 familycarers of head-injured relatives. Subjects were recruited from a number of Australianorganizations including Adult Day Activity Support Services, Family SupportGroups and Community Access Services. Family needs were assessed by theFamily Needs Questionnaire [24] with two minor modifications; a `not applicable’category was added to create a four point scale, and the term patient’ was sub-stituted with `my relative’. Needs were categorized in five different scales: medicalinformation, emotional support, instrumental support, professional support andsupport network. Questionnaires were distributed by key workers in target orga-nizations and returned by carers via the mail system.
Carers were divided into two groups based on duration of time post-injury.Group 1 comprised eight carers of relatives with a head-injury sustained within thelast 2 years; group 2 contained 21 carers of relatives with longer-term injuries.Results indicated that the importance ratings’ of family needs differed significantlybetween the two groups. In addition, significantly more needs remained unmetwith increased time post injury. Stebbins and Leung [23] concluded that familyneeds expanded from predominantly medical and professional support during the 2
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year post-injury period to include those based around community support, care-giver support, family support, financial resource and health information at laterstages. Thus, as time post-injury progressed carers’ needs rated as importantincreased in number and type. Conversely, the number of met needs decreaseddramatically. This serves to emphasize the problems that family carers face withcontinued time post-injury. Despite the clear contribution of this study, severallimitations exist. These include the small and biased sample, sparse patient andcarer demographic data, and the inclusion of some patients who had suffered addi-tional secondary brain injury subsequent to the primary trauma. In addition, theresponse rate to distributed questionnaires appears to be abnormally high at 83%.
Kreutzer et al. [25] reported that many needs of family carers of the head-injuredremain unfulfilled throughout the care period, leaving carers feeling isolated, mis-understood and without support. One hundred and nineteen US family carers ofhead-injured relatives were assessed by the Family Needs Questionnaire [24].Results demonstrated that the majority of needs rated by carers as importantwere classed as related to information and reassurance. The top three needs ratedas important (each with a 99% endorsement) were to have complete informationon the patient’s problems in thinking’ , to have questions answered honestly’, andto be assured that the best possible medical care is being given to the patient’.Interestingly, needs rated as unimportant were linked to the provision of practicaland emotional help and support specifically for the carer.
Although injury characteristics were not associated with fulfilment of needs,there appeared to be a correlation between perceived needs and carer incomeand gender. Female carers rated significantly more needs as important than theirmale counterparts. Subjects were assigned to one of two income groups, carersearning less than $40 000 per annum listed significantly more unmet needs thanthose earning at least this sum. As with most carers of head-injured relatives, mostwere described as the patient’s mother (39%) or wife (28%). Subjects were recruitedvia referrals to a Neuropsychological Department in a University Medical Centre.Within the patient population, there was considerable heterogeneity with respect toinjury severity and duration. At the time of this study, the Family NeedsQuestionnaire used did not have proven validity or reliability. A further limitationof this study is the proportion of black or other ethnic subjects, 75% of carersassessed were white. Therefore, the sample can be described as biased.
A similar study by Moules and Chandler [26] evaluated carer needs with the aimof recommending possible service improvements. Thirty-one carers were randomlyrecruited from eligible candidates within Northumberland in England. However,only 22 carers agreed to participate and, thus, the sample comprised 11 parents(eight mothers) and 11 spouses (five wives). The patient population was hetero-geneous with regard to injury severity and chronicity. Various standardized scaleswere used to measure carers’ psychiatric health, marital relationship and quality oflife (see table 2). Family needs were assessed by the Family Needs Questionnaire[24]. Results were generally supportive of Kreutzer et al. [25] and demonstrated thatmost needs frequently rated as important were from the health information subscale.The top 10 important needs reported by carers are listed in table 2. The single mostfrequently cited important need was to have questions answered honestly’ .
In agreement with Kreutzer et al. [25], the authors note that carers’ priorityneeds are related to their injured relative rather than issues concerning their ownsupport. The majority of satisfied needs were also of a health information nature. In
Family carers and the adult head-injured 659
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660 I. Sinnakaruppan and D. M. WilliamsT
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Family carers and the adult head-injured 661[1
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ciocu
ltura
lnee
ds
(15%
)°
Pro
visio
nof
tran
sport
atio
nse
rvic
es(1
4%
)°
To
lear
nin
form
atio
nab
out
hea
din
jury
(13%
)°
To
lear
nin
form
atio
nab
out
psy
cho-
soci
ocu
ltura
lca
reof
pat
ient
(11%
)°
To
hav
ein
div
idual
sto
care
for
pat
ients
(10%
)°
To
hav
efinan
cial
support
for
psy
cho-
soci
ocu
ltura
lca
reof
pat
ient
(10%
)
[12]
23
Can
adia
nca
rers
.R
ecru
ited
Appra
isal
Car
egiv
ing
Sca
leIn
trap
erso
nal
stre
ssors
wer
e:B
iase
dsa
mple
.via
thre
eag
enci
espro
vidin
g(O
ber
st1992,
per
sonal
°Fee
ling
the
situ
atio
nw
asst
ress
ful
Sm
all
sam
ple
size
.se
rvic
esto
care
rsof
the
hea
d-
com
munic
atio
nto
Jones
)°
Fee
lings
about
ones
elf
Non-s
tandar
diz
edm
ethod.
inju
red.
modifie
dby
Jones
to°
Per
sonal
gro
wth
Spar
sepat
ient
and
care
rD
ura
tion
of
cari
ng
and
tim
ein
clude
cate
gori
esbas
ed°
The
effe
cton
life
styl
edem
ogra
phic
dat
a.since
inju
rynot
report
ed.
on
Neu
man
Syst
ems
Model
.°
Worr
yab
out
doin
gth
ings
No
contr
ol
gro
up.
°Fea
rre
gar
din
gphysica
lhea
lth
°E
ach
day
bec
om
ing
more
mea
nin
gful
Con
tinu
ed
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y T
ufts
Uni
vers
ity o
n 11
/12/
14Fo
r pe
rson
al u
se o
nly.
662 I. Sinnakaruppan and D. M. WilliamsT
able
2.
Con
tinu
ed
Ref
eren
ceSam
ple
Met
hod
Res
ults
Com
men
ts
Inte
rper
sonal
stre
ssors
wer
e:°
Indep
enden
ce°
Rel
atio
nsh
ips
with
frie
nds
and
fam
ily
°T
he
close
nes
sof
rela
tionsh
ips
with
fam
ily,
frie
nds
and
oth
ers
°R
elat
ionsh
ipw
ith
per
son
nee
din
gca
re°
Worr
yab
out
pat
ient’s
futu
re
Extr
aper
sonal
stre
ssors
wer
e:°
Disco
ver
yof
pre
vious
unfa
milia
rre
sourc
es°
Fea
rof
not
hav
ing
ener
gyan
den
dura
nce
inth
efu
ture
[14]
42
Can
adia
nca
rers
.Q
ues
tionnai
redev
ised
by
Eig
ht
most
com
monly
report
edB
iase
dsa
mple
.R
ecru
ited
via
mai
ling
list
Aco
rnbas
edon
Cam
pbel
l’s
import
ant
care
rs’
nee
ds:
Sm
all
sam
ple
size
.of
aH
ead
Inju
ryA
ssoci
atio
n.
[10]
ques
tionnai
re.
°T
oknow
what
the
futu
rehold
sN
on-s
tandar
diz
edm
ethod.
Ass
esse
d1±17
year
spost
-inju
ryfo
rin
jure
dre
lative
(95%
)N
oco
ntr
ol
gro
up.
(ave
rage
6ye
ars)
.°
To
hav
eques
tions
answ
ered
Maj
ori
tyof
pat
ients
(64.3
%)
hones
tly
(93%
)had
bee
nca
red
for
athom
e°
To
lear
nab
out
com
munity
for
<5
year
s.re
sourc
es(9
3%
)°
To
feel
ther
eis
hope
(93%
)°
To
lear
nef
fect
sof
hea
d-i
nju
ry(9
1%
)°
To
hav
eem
oti
onal
support
(90%
)°
To
hav
etim
ean
dac
tivi
ties
for
self
outs
ide
the
hom
e(8
3%
)°
To
talk
about
my
feel
ings
(81%
)
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y T
ufts
Uni
vers
ity o
n 11
/12/
14Fo
r pe
rson
al u
se o
nly.
Family carers and the adult head-injured 663[1
7]
26
US
care
rs.
Str
uct
ure
din
terv
iew
Sig
nific
ant
diffe
rence
sin
the
Sm
all
sam
ple
size
.15
rela
tive
sof
critic
ally
ill
in-
dev
eloped
by
Molter
[18],
import
ance
rating
of
per
ceiv
edP
atie
nt
and
subje
ctdem
o-
pat
ients
with
hea
din
jury
.C
riti
cal
Car
eN
eeds
Inven
tory
fam
ily
nee
ds
of
fam
ilie
sof
the
grap
hic
dat
anotre
port
ed.
11
rela
tive
sof
critic
ally
ill
in-
Ðim
port
ance
rati
ng
of
the
critic
ally
ill
with
and
without
Pat
ients
hosp
ital
ized
,no
pat
ients
witho
ut
hea
d-i
nju
ry.
fam
ily
nee
ds.
hea
d-i
nju
ry.
hom
eca
re.
40
rela
tive
sof
critic
ally
ill
in-
Sig
nific
ant
diffe
rence
sin
the
Tim
epost
-tra
um
a/in
jury
pat
ients
witho
ut
hea
d-i
nju
ryim
port
ance
rating
of
per
ceiv
eduncl
ear.
from
apre
vious
study
[18].
fam
ily
nee
ds
of
fam
ilie
sof
the
Tim
ing
of
asse
ssm
ent
critic
ally
ill
wit
hout
hea
d-i
nju
ryuncl
ear,
retr
osp
ective?
bet
wee
nM
athis’
and
Molter
’sP
atie
nt
hosp
ital
ized
,ac
ute
studie
s.phas
eonly
,no
consider
-at
ion
ofnee
dsaf
ter
pat
ie-
8nee
ds
report
edby
all
thre
ete
stnt’s
retu
rnto
hom
e.gr
oups
asim
port
ant:
°T
ohav
eques
tions
answ
ered
hones
tly
°T
ofe
elth
athosp
ital
per
sonnel
care
dab
out
the
rela
tive
°T
oknow
exac
tly
what
was
done
for
the
rela
tive
°T
ofe
elth
atth
ere
was
hope
°T
ohav
esp
ecific
fact
sco
nce
rnin
gth
ere
lative’
spro
gre
ss°
Rea
ssura
nce
that
the
bes
tca
reposs
ible
was
bei
ng
giv
ento
the
rela
tive
°T
oknow
they
would
be
called
athom
eif
ther
ew
ere
any
chan
ges
inth
eir
rela
tive
’sco
nditio
n°
To
rece
ive
info
rmat
ion
about
the
rela
tive
’sco
nditio
nat
leas
tonce
aday
An
info
rmat
ion
tren
dap
pea
red
tobe
recu
rren
tth
rough
out
the
import
ant
nee
ds
of
all
subje
cts.
Con
tinue
d
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y T
ufts
Uni
vers
ity o
n 11
/12/
14Fo
r pe
rson
al u
se o
nly.
664 I. Sinnakaruppan and D. M. WilliamsT
able
2.
Con
tinue
d
Ref
eren
ceSam
ple
Met
hod
Res
ults
Com
men
ts
[19]
14
US
care
rs.
Cri
tica
lC
are
Nee
ds
Sig
nific
ant
diffe
rence
sin
the
Sm
all
sam
ple
size
.8
rela
tives
of
critic
ally
ill
in-
Inven
tory
[18],Ð
import
ance
rating
of
per
ceiv
edP
atie
nt
and
subje
ctdem
o-
pat
ients
with
hea
din
jury
.im
port
ance
rating
of
fam
ily
nee
ds
of
fam
ilie
sof
the
gra
phic
dat
anotre
port
ed.
6re
latives
of
critic
ally
ill
in-
fam
ily
nee
ds.
critic
ally
ill
with
and
without
Tim
epost
-tra
um
a/in
jury
pat
ients
witho
uthea
d-i
nju
ry.
hea
d-i
nju
ry.
uncl
ear.
Tim
ing
of
asse
ssm
ent
un-
5nee
ds
wer
eper
ceiv
edas
import
ant
clea
r,re
trosp
ective?
or
ver
yim
port
ant
by
both
test
Pat
ient
hosp
ital
ized
,ac
ute
gro
ups:
phas
eonly
,no
consider
-at
ion
of
nee
ds
afte
rpat
-°
To
be
called
athom
eab
out
the
ient’
sre
turn
tohom
e.pat
ient’s
conditio
n°
To
feel
that
the
hosp
ital
per
sonnel
care
about
the
pat
ient
°T
oknow
how
the
pat
ient
isbei
ng
trea
ted
med
ical
ly°
To
hav
eex
pla
nat
ions
that
are
under
-st
andab
le°
To
know
spec
ific
fact
sco
nce
rnin
gth
epat
ient’s
pro
gres
s
An
info
rmat
ion
tren
dap
pea
red
tobe
recu
rren
tth
roughout
the
import
ant
nee
ds
of
all
subje
cts.
Most
nee
ds
report
edby
both
groups
asm
et(7
8.5
%).
Most
nee
ds
report
edby
both
groups
asm
etby
clin
ical
staf
f(>
80%
).
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y T
ufts
Uni
vers
ity o
n 11
/12/
14Fo
r pe
rson
al u
se o
nly.
Family carers and the adult head-injured 665[2
3]
Tota
l29
Aust
ralian
care
rs.
Fam
ily
Nee
ds
Ques
tionnai
reSig
nific
ant
diffe
rence
sin
import
ance
Sm
all
sam
ple
num
ber
.8
care
rsof
rela
tives
of
hea
d-i
nju
ry[2
4]
with
two
min
or
modifi-
ratings
of
fam
ily
nee
ds
bet
wee
nB
iase
dsa
mple
.µ
2yea
rs.
cations;
not
applica
ble
’w
asca
rers
of
rela
tive
sw
ith
inju
ryµ
2Spar
sepat
ient
and
care
r21
care
rsw
ith
rela
tives
of
hea
d-
added
toth
esc
ale,
and
the
yea
rsan
dth
ose
care
rsof
rela
tive
sdem
ogra
phic
dat
a.in
jury
>2
yea
rs.
term
pat
ient’
was
chan
ged
tow
ith
inju
ries
>2
year
s.In
clusi
on
of
som
epat
ients
Subje
cts
recr
uit
edfr
om
anum
ber
`my
rela
tive
’Ðfa
mily
nee
ds,
Sig
nific
antly
more
unm
etca
rer
nee
ds
who
had
suffer
edad
dit
i-of
org
aniz
atio
ns,
e.g.
Adult
Day
import
ance
and
fulfilm
ent.
with
incr
ease
dtim
epost
inju
ry.
onal
seco
ndar
ybra
inA
ctiv
ity
Support
Ser
vice
san
dFam
ily
nee
ds
expan
ded
from
med
ical
inju
ryaf
ter
initia
ltr
aum
a.Fam
ily
Support
Gro
ups.
and
pro
fess
ional
support
up
to2
Dura
tion
of
hom
eca
renot
Com
ple
ted
ques
tionnai
res
retu
rned
yea
rspost
-inju
ryto
incl
ude
report
ed.
by
mai
l.co
mm
unit
ysu
pport
,ca
regiv
erA
bnorm
ally
hig
hre
sponse
Ass
esse
d0.6
±27.9
year
spost
-inju
ry.
support
,fa
mily
support
,finan
cial
rate
.re
sourc
ean
dhea
lth
info
rmat
ion
No
contr
ol
gro
up.
at>
2yea
rs.
[25]
119
US
care
rs.
Fam
ily
Nee
ds
Ques
tionnai
re3
most
import
ant
nee
ds:
Bia
sed
sam
ple
.R
ecru
ited
from
refe
rral
sfo
r[2
4]Ð
fam
ily
nee
ds,
impor-
°T
ohav
eco
mple
tein
form
atio
nD
ura
tion
of
hom
eca
renot
neu
ropsy
cholo
gica
lev
aluat
ion
tance
and
fulfilm
ent.
on
pat
ient’s
pro
ble
ms
inth
inkin
gre
port
ed.
ata
univ
ersity
med
ical
centr
e.(9
9%
)H
eter
oge
neo
us
pat
ient
Ass
esse
d0.2
±95.7
month
spost
-°
To
hav
eques
tions
answ
ered
gro
up
with
regar
dto
inju
ry(a
vera
ge
15.9
month
s).
hones
tly
(99%
)in
jury
.°
To
be
assu
red
that
the
bes
tposs
ible
No
contr
ol
gro
up.
med
ical
care
isbei
ng
give
nto
the
pat
ient
(99%
)
3nee
ds
most
freq
uen
tly
rate
das
met
:°
To
be
assu
red
that
the
bes
tposs
ible
med
ical
care
isbei
ng
give
nto
the
pat
ient
(79%
)°
To
hav
eques
tions
answ
ered
hones
tly
(76%
)°
To
hav
ediffe
rent
staf
fm
ember
sag
ree
on
the
bes
tw
ayto
hel
pth
epat
ient
(76%
)
Con
tinu
ed
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y T
ufts
Uni
vers
ity o
n 11
/12/
14Fo
r pe
rson
al u
se o
nly.
666 I. Sinnakaruppan and D. M. WilliamsT
able
2.
Con
tinue
d
Ref
eren
ceSam
ple
Met
hod
Res
ults
Com
men
ts
3nee
ds
most
freq
uen
tly
rate
das
not
met
:°
To
discu
ssfe
elin
gsab
out
the
pat
ient
wit
hso
meo
ne
who
has
gone
thro
ugh
the
sam
eex
per
ience
(41%
)°
To
hav
ehel
pge
ttin
gover
doubts
and
fear
sab
out
the
futu
re(3
5%
)°
To
hav
ehel
ppre
par
ing
for
the
wors
t(3
4%
)
Corr
elat
ion
bet
wee
nnee
ds,
care
rgen
der
and
inco
me
but
not
with
inju
rych
arac
teri
stic
s
[26]
22
Bri
tish
care
rs.
Sch
edule
of
Eval
uat
ion
of
Most
nee
ds
freq
uen
tly
rate
das
Sm
all
sam
ple
size
.R
ecru
ited
random
lyfr
om
elig
ible
Indiv
idual
Qual
ity
of
LifeÐ
import
ant
wer
ere
late
dto
hea
lth
Dura
tion
of
hom
eca
renot
subje
cts
inN
ort
hum
ber
land.
Dir
ect
Wei
ghting
[29]Ð
info
rmat
ion.
report
ed.
Ass
esse
d20
month
s±17
yea
rspost
-qual
ity
of
life
.T
he
maj
ori
tyof
fulfille
dnee
ds
wer
eN
oco
ntr
ol
group.
inju
ry(a
vera
ge6
year
s).
Golo
mbok
[30]Ð
rela
tionsh
ipco
nce
rned
with
hea
lth
info
rmat
ion.
Het
eroge
neo
us
pat
ient
3pat
ients
lived
separ
atel
yfr
om
satisf
action.
The
maj
ori
tyof
unfu
lfille
dnee
ds
wer
egr
oup
with
regar
dto
care
rs(1
3.6
%).
Gen
eral
Hea
lth
Ques
tionnai
rere
late
dto
the
pro
visio
nof
support
.in
jury
seve
rity
and
dura
-28
[31]±
psy
chia
tric
morb
idit
y.46%
of
nee
ds
rate
das
import
ant
wer
etion.
Fam
ily
Nee
ds
Ques
tionnai
redes
crib
edas
bei
ng
met
.R
andom
ized
sam
ple
sele
ct-
[24]Ð
fam
ily
nee
ds,
import
-T
her
ew
asa
signific
ant
asso
ciat
ion
ion.
ance
and
fulfilm
ent.
bet
wee
na
low
inci
den
ceof
met
Auth
ors
concl
ude
anin
div
-nee
ds,
or
hig
hin
ciden
ceof
unm
etid
ual
appro
ach
tonee
ds,
and
hig
hsc
ore
son
the
asse
ssm
ent
of
care
rnee
ds
Gen
eral
Hea
lth
Ques
tionnai
re.
ispre
ferr
ed.
The
10
most
freq
uen
tly
report
edim
port
ant
nee
ds
wer
e:°
To
hav
eques
tions
answ
ered
hones
tly
(100%
)
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y T
ufts
Uni
vers
ity o
n 11
/12/
14Fo
r pe
rson
al u
se o
nly.
Family carers and the adult head-injured 667°
To
be
show
nth
atm
edic
al,
educa
tional
or
rehab
ilitat
ion
staf
fre
spec
tth
epat
ient’
snee
ds
or
wishes
(95%
)°
To
be
told
about
all
chan
ges
inth
epat
ient’s
med
ical
stat
us
(95%
)°
To
hav
eex
pla
nat
ions
from
pro
-fe
ssio
nal
sgi
ven
inunder
stan
dab
lete
rms
(95%
)°
To
hav
ea
pro
fess
ional
totu
rnto
for
advi
ceor
serv
ices
when
the
pat
ient
nee
ds
hel
p(9
5%
)°
To
hav
eco
mple
tein
form
atio
non
the
pat
ient’
spro
ble
ms
inth
inkin
g(9
5%
)°
To
hav
eco
mple
tein
form
atio
non
the
pat
ient’s
phys
ical
pro
ble
ms
(95%
)°
To
be
told
how
long
each
of
the
pat
ient’s
pro
ble
ms
isex
pec
ted
tola
st(9
5%
)°
To
be
assu
red
that
the
bes
tposs
ible
med
ical
care
isbei
ng
give
nto
the
pat
ient
(91%
)
[27]
180
US
care
rs.
Neu
robeh
avio
ura
lFunct
ion-
Nee
ds
outc
om
epre
dic
tors
diffe
rfo
rB
iase
dsa
mple
.R
ecru
ited
from
ale
vel
Itr
aum
ain
gIn
vento
ry[3
2]Ð
care
rpar
ents
and
spouse
s.D
ura
tion
of
hom
eca
rece
ntr
e.ra
ting
of
pat
ients
’neu
ro-
Car
ers’
ratings
of
the
pat
ients
’neu
ro-
not
report
ed.
Ass
esse
d6
month
s±1
yea
rpost
-beh
avio
ura
lst
atus.
beh
avio
ura
lst
atus
isa
good
No
contr
ol
group.
inju
ry(a
vera
ge
28
month
s).
Auditory
Ver
bal
Lea
rnin
gpre
dic
tor
of
fam
ily
nee
ds.
Com
pre
hen
sive
appro
ach.
Tes
t[3
3].
Neu
ropsy
cholo
gic
alte
sts
are
not
good
Blo
ckD
esig
n,
Wec
hsler
pre
dic
tors
of
fam
ily
nee
ds.
Adult
Inte
llige
nce
Sca
leT
ime
since
inju
ryan
ddura
tion
of
Rev
ised
[34].
com
aar
enot
stro
ng
pre
dic
tors
Com
ple
xFig
ure
Tes
t,co
py
of
fam
ily
nee
ds.
and
3m
inute
reca
ll[3
5].
Pat
ient,
fam
ily
and
inju
rych
arac
teri
stic
s
Con
tinue
d
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y T
ufts
Uni
vers
ity o
n 11
/12/
14Fo
r pe
rson
al u
se o
nly.
668 I. Sinnakaruppan and D. M. WilliamsT
able
2.
Con
tinu
ed
Ref
eren
ceSam
ple
Met
hod
Res
ults
Com
men
ts
Contr
olle
dO
ral
Word
are
not
suff
icie
nt
topre
dic
tA
ssoci
atio
n[3
6].
fam
ily
nee
ds.
Dig
itSpan
,fo
rwar
dan
dbac
k-
war
d,
Adult
Inte
llig
ence
Sca
leR
evis
ed[3
4].
Gro
oved
Peg
boar
d,
dom
inan
t[3
7].
Sim
ilar
itie
s,A
dult
Inte
llig
ence
Sca
leR
evised
[34].
Sym
bol
Dig
itM
odal
itie
sT
est,
wri
tten
and
ora
l[3
8].
Tra
ilM
akin
gT
est,
par
tsA
&B
[39].
Fam
ily
Nee
ds
Ques
tionnai
re[2
4]Ð
fam
ily
mem
ber
s’per
ceiv
ednee
ds.
[28]
65
Span
ish
care
rs.
Ques
tionnai
redev
ised
by
Per
ceiv
edch
anges
inbeh
avio
ur,
Sm
all
sam
ple
size
.R
ecru
ited
from
Hea
dIn
jury
Junque
etal
.[2
8]Ð
emotions
and
qual
ity
of
life
Non-s
tandar
diz
edm
ethod.
Ass
oci
atio
ns
and
vari
ous
chan
ges
inpat
ients
(as
inpat
ients
wer
est
rongly
ass-
Pat
ient
and
subje
ctdem
o-
Bar
celo
na
hosp
ital
s.per
ceiv
edby
care
rs)
and
oci
ated
with
care
rs’
nee
dfo
rgr
aphic
dat
asp
arse
.A
sses
sed
1±24
year
spost
-inju
ryca
rer
info
rmat
ion
nee
ds.
info
rmat
ion.
No
contr
ol
group.
(aver
age
6.2
year
s).
Dura
tion
of
hom
eca
reM
ail
surv
ey.
not
report
ed.
[15]
52
New
Zea
land
care
rs.
Car
eB
urd
enSca
lepre
vio
usly
77%
of
care
rsw
orr
ied
about
pat
ient.
Dura
tion
of
cari
ng
not
Rec
ruit
edfr
om
mem
ber
ship
sdev
eloped
by
Knig
ht
etal
.73%
of
care
rsw
ere
fear
ful
of
futu
re.
report
ed.
of
Hea
dIn
jury
Soci
etie
s.fo
rca
rers
of
peo
ple
with
Par
enta
lca
rers
wer
em
ore
distr
esse
dB
iase
dsa
mple
.A
sses
sed
on
aver
age
5.7
yea
rsm
ultip
lesc
lero
sis
[16]Ð
by
conce
rnfo
rfu
ture
and
phys
ical
Non-s
tandar
diz
edm
ethod.
(SD
ˆ4.5
5)
post
-inju
ry.
stra
inan
dpositi
veef
fect
sburd
enth
ansp
ousa
lca
rers
.of
cari
ng.
Bra
in I
nj D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y T
ufts
Uni
vers
ity o
n 11
/12/
14Fo
r pe
rson
al u
se o
nly.
contrast, unmet needs were predominantly related to the provision of support; 46%of needs rated as important were described as being met. Moules and Chandler [26]found a significant relationship between a low incidence of met needs, or highincidence of unmet needs and high scores on the General Health Questionnaire.Thus, carers with many unmet needs tended to report lower quality of life andgreater psychiatric morbidity.
Although the study is well designed and implemented, the small sample size is alimitation. The authors conclude that an individual approach to assessment of carerneeds is the preferred route. Both Moules and Chandler [26] and Kreutzer et al. [25]raise the issue of the validity of self assessed carer needs as carers appeared to rateissues concerning their own emotional and practical support and coping as relativelyunimportant. As Moules and Chandler emphasize, this area warrants furtherresearch.
Serio et al. [27] investigated the variables involved in predicting family needs andwhether these were satisfied in a sample of 180 family carers of the head-injuredrecruited through a US Level I trauma centre. The majority of carers were female,and the sample constituted similar proportions of spouses (43%) and parents (36%).The effects of head injury were assessed by applying a combination of 13 neuro-psychological tests to injured individuals, as well as the NeurobehaviouralFunctioning Inventory (NFI). The NFI allows family carers to select a range ofdifferent symptoms to describe the patient’ s neurobehavioural status. The needsperceived by family carers and whether these were satisfied were measured usingthe Family Needs Questionnaire [24]. On average, 55% of needs were met, withthe highest satisfaction levels indicated in the Medical Information Scale. Only 19%of needs were described as unmet, and the majority of these (30%) were related toemotional support.
Regressional procedures were used to ascertain which variables were significantin predicting carers’ needs and whether these were satisfied. The NFI was found tobe the best and most consistent predictor of family needs in contrast to neuro-psychological testing. A strong association was reported between behavioural prob-lems in the head-injured relative and unmet needs in their family carer. Perhapsrather surprisingly, injury characteristics, including time since injury and duration ofcoma, were reported to be poor predictors of family needs.
A further significant finding of this study was the existence of differential pre-diction equations for parental and spousal carers of head injured relatives. For ex-ample, parents perceived more `met needs’ when they described their head-injuredrelative as suffering predominantly physical symptoms. In contrast, in the samesituation, spousal carers reported fewer met needs.
Although the study was large and well constructed, a number of limitationsexist. First, during the calculation of predictor variables in family needs, no signifi-cant or meaningful results were revealed. The sample was then categorized as parentor spouse, and 41 subjects who did not meet these criteria, e.g. unmarried partners,were deleted from the analysis, thus biasing the sample. In addition, no controlsample was included in the analysis. Moreover, the authors recommend that pre-morbid family functioning should be considered and assessment of family needs beperformed serially to identify changes in perceived needs over the course of time.
The association between needs, their satisfaction and behavioural problems inthe head-injured relative has also been demonstrated by Junque et al. [28].Moreover, many groups have highlighted the key role of information in family
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needs. This study examined this area in relation to physical, cognitive, emotionaland quality of life changes perceived by 65 family carers in severely head-injuredrelatives. Carers were recruited through Head injury Associations and a number ofhospitals in Barcelona. Assessment was via a mail survey questionnaire devised byJunque et al. [28] with a 43% response rate. The questionnaire gauged a variety ofchanges in the patient as perceived by the family carer, as well as items pertaining tothe need for information.
Results showed that there was a correlation between patients’ emotional andbehavioural changes as well as changes in the patient’s quality of life and the needfor information on the consequences of head-injury. Junque et al. stressed theimportance of the provision of information specifically concerning emotional andbehavioural changes subsequent to head injury for family members. They arguedthat an increased comprehension of such changes would elicit greater adaptationwithin families. Limitations of the study relate to the small and biased sample,insufficient patient and carer demographic information and non-standardmethodology.
Conclusions
Although carers exhibit variation within their perceived needs and their relativepriorities, some common themes have emerged. The majority of subjects seem tohave emphasized the need for information regarding the head injury, its effects, andtechniques for adjusting to the subsequent changes in their injured relatives. Manycited a need for healthcare professionals to answer questions with honesty. A furthercommon major concern was for the future care of the head-injured person in theevent of carer disability or death. This worry does not appear to be specific to thehead-injured population and has been reported in other caregiver groups [40]. Themajority of carers also needed time for themselves outside the home, and manycarers also indicated a need for hope for the future.
Throughout the publications, the need for multiple facets of health informationis clearly demonstrated. In particular, information that specifically addresses beha-vioural, affective and quality of life changes within the head-injured person appearsto be especially important. Moreover, as Moules and Chandler [26] emphasized,further research is required to determine whether current methods of analyses revealan accurate representation of family needs. It may be pertinent to note that all 13studies reported needs perceived by carers themselves. In some studies, personalcarer support issues appear to be rated as relatively unimportant, rather the priority isfocused on the head-injured relative.
Although many important needs were identified, there were great variations inthe satisfaction of these needs. Significant differences in the fulfilment of needs werereported between parental and spousal carers. Overall, more unmet needs appearedto be associated with behavioural and affective change in the injured relative andincreased with the progress of time post-injury. It appears that, in some respects, thefamilies’ needs can be predicted, but not by neuropsychological testing or injurycharacteristics.
Perhaps, the overall common needs might be considered somewhat surprisinggiven that most of these studies used heterogeneous populations in terms of head-injured people and carers. Although significantly different needs were found infamily carers of the head-injured compared to carers of the critically ill without
670 I. Sinnakaruppan and D. M. Williams
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head-injury, similar differences were revealed within different groups of critically illpatients. The elucidation of trends within the needs of family carers of the adulthead-injured will allow service provision to address these as they change and expandthroughout the carers’ life post-injury. However, it is clear from a number ofdifferent studies that such an approach alone is insufficient and that carers’ needscan only be more fully accommodated by a combination of addressing commonthemes and the identification of individual family needs. Such information wouldallow improvements in services by local providers.
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