BRAIN INJURY, 1998, VOL. 12, NO. 12, 1045± 1059
Caregiver burden at 1 year following severe
traumatic brain injury
N I G E L V . M A R S H ² , D E N Y S E A . K E R S E L ² ,
J A C K H . H A V I L L ³ a n d JA M I E W . S L E I G H ³
² Department of Psychology, University of Waikato, Hamilton, New Zealand³ Intensive Care Unit, Waikato Hospital, Hamilton, New Zealand
(Received 2 June 1998; accepted 23 July 1998 )
Sixty-nine primary caregivers of adults with a severe traumatic brain injury (TBI) were assessed at 1-
year post-injury. Caregivers completed questionnaires on the physical, cognitive, emotional, beha-
vioural, and social functioning of the person with TBI. Caregiver objective burden, psychosocial
functioning, and subjective burden were also assessed. Clinically significant levels of anxiety and
depression were evident in over a third of the caregivers. Similarly, a quarter of the caregivers reported
poor social adjustment. There was no consistent relationship between the prevalence of various types
of objective burden and the level of subjective distress that resulted from these changes. The person
with TBI’s emotional difficulties, in particular their anger, apathy, and dependency, caused the greatest
distress for caregivers. With regard to the impact that caregiving had on their own lives, caregivers
were most distressed by the loss of personal free time. Results from a regression analysis indicated that
the person with TBI’s physical impairment, number of behavioural problems, and social isolation were
the strongest predictors of caregiver burden. The impact that caring for a person with severe TBI can
have on the extended family unit is discussed.
Introduction
Grad and Sainsbury [1] were among the first researchers to investigate the burden
that can be experienced by families caring for an ill relative. Although their research
focused on those caring for the psychiatrically ill, the concepts that they examined
were adopted by early researchers in the area of traumatic brain injury (TBI). This
resulted in an increased awareness of the problems facing the family members who
usually provide the long-term care for people with TBI [2, 3].
Findings from the subsequent two decades of research into caregiver burden
following TBI have been summarized by a number of authors [4± 8]. The overall
conclusions from these reviews indicate that caregivers usually experience adverse
effects as a result of caring for a person with TBI, and that these effects are still
present years after the TBI. Caring for a person who has suffered TBI can result in a
variety of difficulties for the caregiver. Consequences described in the literature
include stress, depression and anxiety, psychosomatic disorders, increased consump-
tion of prescription and non-prescription drugs, financial difficulties, role changes,
poor social adjustment and increasing social isolation. It is unclear whether or not
these effects are mediated by the nature of the caregiver’ s kinship relationship to the
person with TBI. Also, some aspects of the consequences of TBI appear to have a
0269 ± 9052/98 $12 ´00 Ñ 1998 Taylor & Francis Ltd.
Correspondence to: Nigel V. Marsh, PhD, Department of Psychology, University of Waikato,
Private Bag 3105, Hamilton, New Zealand
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greater affect on caregiver burden than others. Specifically, caregiver burden appears
to be relatively less affected by changes in the physical, intellectual, and commu-
nication ability of the person with TBI. The primary determinants of caregiver
burden appear to be the changes in behaviour and emotion, commonly referred
to as `personality changes’ , which can be a consequence of TBI.
More recent research has involved a change in methodology with the addition
of psychometrically sound questionnaires to the use of semistructured interviews
and checklists. In addition, some researchers have developed instruments designed
to assess specific aspects of caregiving [9]. However the distinction between objec-
tive and subjective burden has remained central to most research in this area [10].
Recent studies continue to document major consequences of TBI for the pri-
mary caregiver. Clinically significant levels of both anxiety and depression have
been reported in caregivers within the first year post-injury. In one study 45 primary
caregivers of people with severe TBI were assessed on three occasions within the
first year following injury [11]. The frequency of clinically significant anxiety ranged
from 16± 51% and depression from 8± 26% throughout this period. Mitchley et al.
[12] have reported the results from a study of 23 primary caregivers in the second
year following injury. Assessment of the caregivers of this predominantly severely
injured TBI sample indicated that 61% of the caregivers reported clinically signifi-
cant levels of psychological distress. In a brief report, Gillen et al. [13] noted that
47% of the 60 caregivers they studied met clinical criteria for major depressive
disorder. However, there was no relationship for their group between affective
status and either severity of injury or time since injury.
Attempts have been made to distinguish those aspects of caregiver burden that
are unique to caring for a person with TBI. A comparison of 15 wives of men with
severe TBI with 15 wives of men with spinal cord injury indicated that the carers of
the people with TBI experienced greater anxiety [14]. Overall 47% of wives of the
men with TBI were clinically depressed and 40% were clinically anxious. In a larger
study Allen et al. [15] reported the results for 131 primary caregivers of individuals
with TBI. Despite the heterogeneity of their sample in terms of time since injury
and severity of injury, a relatively consistent pattern of results was found. Caregiver
subjective burden was influenced by social aggression and cognitive disability, rather
than injury severity and physical disability. Further, social aggression had a stronger
relationship with burden than did cognitive disability. One of the few recent long-
itudinal studies of caregiver burden utilized telephone interviews to assess 51 care-
givers over a 2-year period following TBI of varying severity [16]. Caregiver reports
of the behaviour of the person with TBI indicated an increasing frequency of
aggressiveness and self-centredness during the follow-ups. Similarly, there was an
increase in the severity of reports concerning temper outbursts, self-centredness, and
anxiety. Caregivers also reported increases in their own medication and substance
use and a decrease in employment and financial status over the 2-year period.
Other researchers have examined the consequences of caring for a person with
TBI in terms of the effects on the whole family system. In the first of two studies
Kreutzer et al. [17] reported on the psychological status and family functioning of a
group of 62 adult caregivers assessed between 1.5 and 60 months post-injury. The
people with TBI had sustained injuries of varying levels of severity. Clinically
significant levels of distress were reported by 47% of the caregivers with 23± 32%
reporting significant depression and anxiety respectively. Impaired family function-
ing was reported by 56% of the sample. In the second study the number of beha-
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vioural problems reported for the person with TBI was a better predictor of care-
giver psychological functioning than either injury severity or neuropsychological
test scores [18]. These findings are similar to those reported by Douglas and Spellacy
[19]. They reported the results from a study of 30 families that included a person
with severe TBI, assessed at least 3.5 years post-injury. They found that severity of
injury, the person with TBI’ s level of neurobehavioural functioning, and caregiver’ s
perceived adequacy of social support were related to family functioning. It was the
presence of excessive responsibilities and demands that determined the role of
caregiver social support in effecting perceived family functioning.
Despite recent improvements in the assessment methods used, much of the
research into caregiver burden following TBI continues to utilize samples that are
too heterogeneous with regard to both injury severity and time since injury.
Research involving samples of varying levels of severity may contribute to one’s
understanding of the relationship between injury severity and caregiver burden.
However, to develop a better understanding of the process of family adaptation
following TBI a longitudinal series of studies within which caregivers are assessed at
approximately the same time post-injury is required. This study sought to describe
outcome for both people with severe TBI and their primary caregivers at 1-year
post-injury. The comparative degree of distress caused to caregivers from both
changes in the person with TBI and changes in their own life are outlined. The
impact of these changes on the caregiver’s psychosocial functioning is also evaluated.
Finally, the relationship between caregiver reports of the person with TBI’ s physical,
cognitive, emotional, behavioural, and social functioning and the degree of care-
giver objective burden, psychosocial impairment and subjective burden is examined.
Method
Participants
Participants were selected from those patients enrolled in the Waikato Traumatic
Brain Injury Study [20]. This study involved 123 patients selected from a consecu-
tive series of TBI admissions to the Intensive Care Unit at Waikato Hospital from
April 1993 to August 1996. Criteria for admission to the study were: (a) consent
obtained from next-of-kin to participate in the study; (b) severe TBI as indicated by
a Glasgow Coma Scale [21] score of < 9 obtained prior to intubation and within 24
hours of the injury; (c) the patient was required to be ventilated on clinical grounds
for > 24 hours, where the ventilation was, at least in part, required for the treatment
of the TBI; (d) English-speaking, (e) no previous psychiatric history, and (f ) no prior
significant TBI requiring hospitalization. Primary caregivers of the person with TBI
were defined as someone who knew the patient prior to their TBI, and who had
regular contact with them since their TBI.
One year follow-up data was obtained on 113 (92%) of the original sample. Of
these, 25 (22%) were deceased. Of the remaining 88 patients, 14 (16%) were less
than 16 years of age and two (2%) were more than 60 years of age at the time of
follow-up. Only three of the 72 adult patients were unable to nominate a suitable
caregiver at the 1-year follow-up. The remaining 69 adult patients and their primary
caregivers constitute the sample reported on here.
The 69 people with TBI and their primary caregivers were assessed, on average,
at 388 days (SD = 33, range = 345± 497 days) post-injury. The mean age of the
Caregiver burden following severe TBI 1047B
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patients with TBI was 28 years (SD = 11, range = 16± 57 years). Seventeen (25%)
of the patients with TBI were female, the remaining 52 (75%) were male. Overall
outcome at 1-year post-injury, for the patients with TBI, was assessed by means of
the Glasgow Outcome Scale [22]. Twenty-one (30%) patients had severe disability,
13 (19%) moderate disability, and the remaining 35 (51%) had made a good recov-
ery following their TBI. The cause of the TBI was a road traffic crash for 53 (77%)
patients, a fall for seven (10%) patients, an assault for five (7%) patients, and the
remaining four (6%) were from other causes including sporting injuries.
The mean age of the caregivers was 44 years (SD = 12, range = 19± 71 years).
Fifty-eight (84%) of the caregivers were female and 11 (16%) were male. Forty-
eight (70%) of the caregivers were living in the same household as the patient with
TBI, the remaining 21 (30%) caregivers lived separately. Forty-four (64%) of the
caregivers were the parent of the patient with TBI, 17 (25%) were the spouse/
partner, seven (10%) were other relatives (sibling, child), and one (1%) was an
unrelated friend. This demographic information is presented in table 1.
Measures
Caregivers completed five self-report questionnaires. Their responses on the short
form of the Beck Depression Inventory [23] were evaluated in terms of the age and
gender-specific norms for a New Zealand sample provided by Knight [24]. Age and
gender-specific norms were also used to interpret their responses to the Trait
Anxiety Inventory from Form Y of the State-Trait Anxiety Inventory [25]. Their
responses on the self-report version of the Social Adjustment Scale [26] were
evaluated in terms of the community sample, gender-specific norms provided by
Weissman et al. [27].
The relative/friend version of the Head Injury Behaviour Rating Scale [28] was
also administered. This 20-item questionnaire required caregivers to identify
changes in the person with TBI behaviour since the TBI, and indicate how
much distress these changes had caused for them. Degree of distress was rated on
a 4-point scale from 1 (no distress) to 4 (severe distress).
The Caregiver Questionnaire is a 22-item questionnaire designed specifically for
the study. Sixteen items required caregivers to indicate what areas of their life had
changed as a result of caring for the person with TBI, and four items required them
to indicate in what way the person had changed as a result of their TBI. The
caregiver also rated the degree of distress each of these changes caused for them
on a 5-point scale from 1 (no distress) to 5 (very great distress). Finally, two items
required caregivers to indicate on a 7-point scale from 1 (no distress) to 7 (very great
distress), how much the changes in their life, and the changes in the patient’s
functioning, distressed them.
Procedure
Ethical approval for this study was obtained from the Waikato Area Health Board’ s
Committee on Ethics. Consent to participate in the study was originally obtained by
medical staff shortly after the person with TBI was admitted to hospital. The people
with TBI and their primary caregivers were recontacted at both 6-months and 1-
year following the TBI and asked if they wished to participate in a follow-up study.
Those who agreed were seen by two psychologists who conducted separate assess-
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ments of both the people with TBI and their primary caregivers. Similar procedures
were used at both the 6-month and 1-year follow-ups. Only the information
obtained from the primary caregivers at the 1-year follow-up is reported on here.
Information obtained from those primary caregivers that completed the 6-month
follow-up has been reported elsewhere [29]. The self-report questionnaires were
administered in accordance with the standardized instructions available for each
measure.
Data analysis
All statistical analysis was undertaken using SPSS 6.1. An alpha level of 0.05 was
used to determine statistical significance. In those instances where p < 0.05, the
Caregiver burden following severe TBI 1049
Table 1. Demographic information for the patients with TBI and
their primary caregivers (n = 69)
Patients with TBI
Age (years)
Mean 28
SD 11
Range 16± 57
Gender
Female 17 (25%)
Male 52 (75%)
Cause of TBI
Road traffic crash 53 (77%)
Fall 7 (10%)
Assault 5 (7%)
Other 4 (6%)
Days since TBI
Mean 388
SD 33
Range 345± 497
Glasgow Outcome Scale
Severe disability 21 (30%)
Moderate disability 13 (19%)
Good recovery 35 (51%)
Caregivers
Age (years)
Mean 44
SD 12
Range 19± 71
Gender
Female 58 (84%)
Male 11 (16%)
Living with the patient with TBI
Yes 48 (70%)
No 21 (30%)
Relationship to the patient with TBI
Parent 44 (64%)
Spouse/partner 17 (25%)
Other relative 7 (10%)
Friend 1 (1%)
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exact alpha level is reported. In determining the clinical significance of scores the
following procedure was used. If the obtained score was equal to, or greater than,
one standard deviation from the mean of the normative sample the difference was
considered to indicate `mild’ impairment. Scores equal to, or greater than, two
standard deviations from the mean of the normative sample were considered to
indicate `moderate’ impairment. Finally, scores equal to, or greater than, three
standard deviations from the mean of the normative sample were considered to
indicate s̀evere’ impairment.
For the purpose of undertaking the regression analyses, the information collected
through the administration of these questionnaires was used to calculate 10 different
scores. Five scores each for both the person with TBI and their caregivers were
calculated. The five scores for the person with TBI were for changes in physical,
cognitive, emotional, and social functioning (all derived from the Caregiver
Questionnaire), and number of behaviour problems (derived from the Head
Injury Behaviour Rating Scale). Prior to conducting the multiple regression analyses
these five independent variables were screened for multicollinearity [30]. The five
caregiver scores were depression, anxiety, overall social adjustment, objective bur-
den (which was derived by summing the number of areas in their life that caregivers
reported had changed as a result of caring for the person with TBI), and subjective
burden (which was derived by summing the scores on the two items in the
Caregiver Questionnaire which required caregivers to indicate how much the
changes in their life, and the changes in the person with TBI’ s functioning, dis-
tressed them).
Results
Functioning of the people with TBI
Caregiver reports of the level of functioning for the people with TBI are presented
in table 2. In terms of overall functioning caregivers reported the highest prevalence
for changes in both physical abilities/health and cognitive abilities (87% each). It was
the presence of emotional difficulties in the person with TBI that caused caregivers
the greatest degree of distress. Despite the comparatively lower frequency of
changes in the person with TBI’s amount of social contact (75%), this change
was reported as causing a similar level of distress for caregivers as that caused by
more frequent difficulties.
Caregiver reports of the frequency and mean distress level for each of
the behavioural problems are also displayed in table 2. Impatience (74%) in
the person with TBI was the most frequently reported problem. Problems with
being overly sensitive, childish, and impulsive (61% each) were also frequently
reported. Overall, nine of the 20 behavioural problems were reported by more
than 50% of the caregivers. Irresponsibility (29%) and aggression (32%) were the
least frequently reported behavioural problems. Despite their comparatively high
frequency, childishness and impulsiveness were two of the three least distressing
behavioural problems. The three most distressing behavioural problems were
anger (55%), being overly dependent (38%), and lack of motivation (54%)
respectively.
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Caregiver psychosocial functioning
Sixty-five caregivers completed all three measures of psychosocial functioning.
Twenty-three (35%) caregivers reported clinically significant levels of anxiety.
Nineteen (29%) reported mild anxiety, two (3%) moderate anxiety, and the remain-
ing two (3%) reported severe levels of anxiety. Similarly, 21 (32%) caregivers
reported clinically significant levels of depression, nine (14%) reported symptoms
of mild depression, seven (11%) moderate depression, and five (8%) severe depres-
sion (table 3).
Caregiver burden following severe TBI 1051
Table 2. Caregivers’ frequency and distress ratings for changes in the patient with TBI at 1-year postinjury
Problem area Frequency Mean distress
Physical 59 (87%) 3.14
Cognitive 59 (87%) 3.14
Emotional 58 (85%) 3.41
Social isolation 51 (75%) 3.14
Behavioural*
Impatient 51 (74%) 2.61
Overly sensitive 42 (61%) 2.31
Childish 42 (61%) 2.26
Impulsive 42 (61%) 2.17
Argumentative 40 (58%) 2.33
Anger 38 (55%) 2.76
Lack of motivation 37 (54%) 2.68
Lack of interest 37 (54%) 2.65
Depressed 37 (54%) 2.60
Poor insight 34 (49%) 2.50
Anxious 34 (49%) 2.44
Irritable 33 (48%) 2.49
Poor decision making 33 (48%) 2.39
Mood changes 31 (45%) 2.65
Lack of initiative 29 (42%) 2.24
Complaining 27 (39%) 2.33
Dependent 26 (38%) 2.69
Social behaviour 26 (38%) 2.54
Aggression 22 (32%) 2.50
Irresponsible 20 (29%) 2.55
*Distress rating obtained on a 4-point scale.
Table 3. Degree of impairment in caregiver psychosocial functioning
Psychosocial area Mild Moderate Severe Total
Anxiety 19 (29%) 2 (3%) 2 (3%) 23 (35%)
Depression 9 (14%) 7 (11%) 5 (8%) 21 (32%)
Social Adjustment*
Work 9 (15%) 1 (2%) 1 (2%) 11 (18%)
Social and leisure 9 (14%) 3 (5%) 2 (3%) 14 (22%)
Extended family 9 (14%) 2 (3%) 4 (6%) 15 (23%)
Marital 9 (18%) 1 (2%) 0 10 (20%)
Parental 5 (12%) 1 (2%) 1 (2%) 7 (16%)
Family unit 12 (19%) 2 (3%) 2 (3%) 16 (25%)
Overall 10 (15%) 6 (9%) 0 16 (25%)
*n differs due to fact that not all role areas were applicable.
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Caregivers’ reports of their overall social adjustment indicated that 16 (25%) had
impaired levels of social adjustment. For 10 (15%) of the caregivers this impairment
was mild in degree, and for the remaining six (9%) it was moderate. No caregivers
reported severe impairment in their overall level of social adjustment (table 3).
Examination of the scores obtained for particular role areas indicates that there
was comparatively least disruption to the caregivers’ parental roles (16%). No care-
givers reported a severe level of disruption to their marital role. In contrast, it was
the caregiver’s relationship with their immediate family that experienced the highest
prevalence of disruption (25%). Similarly caregivers’ relationships with their
extended family was the role area for which there was the highest prevalence of
severe disruption (6%).
Caregiver objective burden
Caregiver reports of the nature and comparative level of distress caused by the
changes in their life which have resulted from caring for the person with TBI are
reported in table 4. Five of the 15 possible changes were reported as occurring by
more than 50% of the caregivers. The item l̀ess time to myself ’ was the most
frequently reported change (66%) and was also rated as causing the greatest degree
of distress. Other frequently reported changes included increased anxiety (60%),
changes in sleep patterns (54%), and less privacy (53%). The least frequently
reported change of an increase in medication (6%) was also the third most distressing
change reported by the caregivers. Other low frequency changes included physical
illness (12%) and increased use of alcohol, cigarettes and other drugs (18%).
Changes in employment (35%) also resulted in considerable distress for the
caregivers. Despite the frequent reports of a change in their relationships with family
and/or friends (53%), caregivers were comparatively less distressed by this. Changes
in their housing (28%) and appetite (23%) resulted in the least distress.
1052 N. V. Marsh et al.
Table 4. Caregivers’ frequency and distress ratings for changes in their life at 1-year post-injury
Problem area Frequency Mean distress
Time for myself 45 (66%) 3.09
Anxiety 41 (60%) 2.78
Sleep 37 (54%) 2.78
Privacy 36 (53%) 2.83
Relationships 36 (53%) 2.58
Depression 30 (44%) 2.93
Anger 30 (44%) 2.83
Financial 30 (44%) 2.73
Employment 24 (35%) 3.08
Energy 24 (35%) 2.88
Housing 19 (28%) 2.26
Appetite 16 (24%) 2.56
Substance (alcohol etc.) use 12 (18%) 2.75
Illness 8 (12%) 2.88
Medication use 4 (6%) 3.00
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Correlational analysis
The relationships between changes in the person with TBI and caregiver psycho-
social functioning and degrees of objective and subjective burden were initially
examined by correlational procedures. Caregiver reports of changes in the person
with TBI person’s physical, cognitive, emotional, behavioural, and social function-
ing were correlated with the caregiver self-reports of objective burden, anxiety,
depression, social adjustment, and subjective burden (table 5).
There was a significant relationship between caregiver reports of changes in the
patients’ physical abilities and caregiver levels of objective burden (r = 0.35,
p = 0.004), depression (r =- 0.25, p = 0.043), and subjective burden
(r = - 0.35, p = 0.004). Reports of changes in the person with TBI’s cognitive
abilities were related to caregiver levels of subjective burden (r =- 0.27,
p = 0.028). The presence of emotional difficulties in the person with TBI was
related to caregiver levels of objective burden (r = 0.38, p = 0.001), anxiety
(r = - 0.28, p = 0.027), depression (r = - 0.28, p = 0.023), social adjustment
(r = - 0.35, p = 0.005), and subjective burden (r =- 0.37, p = 0.002).
Similarly, the number of behavioural problems reported for the person with TBI
was significantly related to caregiver levels of objective burden (r = 0.38,p = 0.002), anxiety (r = - 0.29, p = 0.020), social adjustment (r =- 0.29,
p = 0.021), and subjective burden (r = - 0.44, p < 0.001). Finally, the presence
of a change in the person with TBI’ s amount of social contact was related to
caregiver levels of objective burden (r = 0.40, p = 0.001), depression (r =- 0.33,
p = 0.008), social adjustment (r = - 0.27, p = 0.031), and subjective burden
(r = - 0.45, p < 0.001).
Overall, caregiver reports of the presence of emotional difficulties in the
person with TBI were significantly related to all five aspects of caregiver function-
ing. The number of behavioural problems and the presence of a change in the
amount of social contact for the person with TBI were both related to four
aspects of caregiver functioning. The presence of changes in the person with
TBI’ s physical abilities/health was related to three of the five aspects of caregiver
functioning. Finally, reports of a change in the cognitive abilities of the person with
TBI were significantly related to only one aspect (subjective burden) of caregiver
functioning.
Caregiver burden following severe TBI 1053
Table 5. Correlations between the functioning of the patient with TBI and caregiver burden and psychosocial
adjustment
Caregiver functioning
TBI patient’s
functioning
Objective
burden Anxiety Depression
Social
adjustment
Subjective
burden
Physical 0.35* - 0.21 - 0.25* - 0.22 - 0.35*
Cognitive 0.22 - 0.07 - 0.12 - 0.17 - 0.27*
Emotional 0.38* - 0.28* - 0.28* - 0.35* - 0.37*
Behavioural 0.38* - 0.29* - 0.22 - 0.29* - 0.44*
Social 0.40* - 0.21 - 0.33* - 0.27* - 0.45*
*p < 0.05.
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Multiple regression analysis
To further investigate these relationships standard multiple regression analyses were
conducted. Changes in the person with TBI person’s physical, cognitive, emotional,
behavioural, and social functioning were entered simultaneously as independent
variables. Caregiver depression, anxiety, social adjustment, objective burden, and
subjective burden were the dependent variables (table 6).
The total variance explained by the regression equation for objective burden was
significant, F (5,61) = 5.74, p = 0.0002. In total the five independent variables
explained 32% (26% adjusted) of the variance in objective burden. The three indi-
vidual variables of physical changes ( p = 0.0377), number of behavioural problems
( p = 0.0379), and amount of social contact ( p = 0.0469) all made significant
unique contributions to the prediction of objective burden. The regression equation
1054 N. V. Marsh et al.
Table 6. Summary of simultaneous regression analysis for patient with TBI variables predicting caregiver
functioning
Caregiver TBI patient b t
Objective burden Physical 0.25 2.13*
Cognitive - 0.01 - 0.09
Emotional 0.10 0.75
Behavioural 0.26 2.12*
Social 0.24 2.03*
R2 =0.32 Adjusted R
2 =0.26 R =0.57*
Anxiety Physical - 0.18 - 1.32
Cognitive 0.12 0.82
Emotional - 0.15 - 0.92
Behavioural - 0.21 - 1.49
Social - 0.07 - 0.49
R2 =0.15 Adjusted R
2 = 0.07 R = 0.38
Depression Physical - 0.17 - 1.27
Cognitive 0.07 0.51
Emotional - 0.13 - 0.80
Behavioural - 0.11 - 0.80
Social - 0.21 - 1.61
R2 =0.17 Adjusted R
2 = 0.10 R = 0.41
Social Adjustment Physical - 0.13 - 0.98
Cognitive 0.03 - 0.20
Emotional - 0.19 - 1.20
Behavioural - 0.17 - 1.19
Social - 0.12 - 0.91
R2 =0.17 Adjusted R
2 =0.10 R =0.42*
Subjective burden Physical - 0.24 - 2.16*
Cognitive - 0.07 - 0.60
Emotional 0.004 0.30
Behavioural - 0.36 - 3.08*
Social - 0.27 - 2.46*
R2 =0.38 Adjusted R
2 =0.33 R =0.62*
* p < 0.05.
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for social adjustment was also significant, F (5,58) = 2.42, p = 0.0465. In total the
five independent variables explained 17% (10% adjusted) of the variance in social
adjustment. No individual variable reached significance, indicating that none of the
independent variables made a significant unique contribution to the variability in
social adjustment. Finally, the regression equation for subjective burden was also
significant, F (5,61) = 7.62, p < 0.0001. In total the five independent variables
explained 38% (33% adjusted) of the variance in subjective burden. Once again
the three individual variables of physical changes ( p = 0.0349) , number of beha-
vioural problems (p = 0.0031), and amount of social contact ( p = 0.0166) made a
significant unique contribution to the variance of the dependent variable, in this
case, subjective burden. The regression equations for caregiver anxiety and depres-
sion failed to reach significance.
D iscu ss ion
One of the primary objectives of this research programme is to obtain an under-
standing of the relative contribution of various factors in determining the subjective
experience of burden for those who care for people with severe TBI. The extent to
which findings from previous research contributes to knowledge in this area is
limited by the use of samples which include the whole spectrum of brain injury
severity, and the assessment of individuals at widely varying times since injury. This
report documents findings with an adult sample of people with severe TBI assessed
at 1-year post-injury.
This study specifically sought to describe the extent to which various changes in
the functioning of the people with TBI impacted on the lifestyle and psychosocial
functioning of their primary caregivers. Other objectives were to document the
nature of the changes in the functioning of the people with TBI, the changes in the
lifestyle of their caregivers, and the extent to which impairment occurred in the
caregivers’ psychosocial functioning.
Caregivers reported that severe TBI had resulted in pervasive changes in many
aspects of the individual’ s functioning. At a global level there was a high incidence
of physical disability, cognitive impairment, emotional difficulties, and increased
social isolation reported for the people with TBI. There was little, if any, difference
between the reported prevalence rates for the three most frequently reported prob-
lems. However, there was no clear relationship between the frequency of these
problems and the degree of distress that their occurrence caused for the caregivers. It
was the presence of emotional difficulties that caused the most stress for caregivers.
However, the mean distress ratings for all four of these areas were above 3 on a 5-
point scale indicating that overall all four problems caused similarly high levels of
distress. A high prevalence of difficulties in physical, cognitive, emotional, and social
functioning has been reported by other researchers at 1-year post-injury [12, 16].
Previous research has consistently reported a high prevalence of behavioural
problems following TBI [4± 8]. The results from the current study allow for a
detailed description of the nature and occurrence of these problems, and their
relative impact on the caregiver. At least nine of the 20 different behavioural prob-
lems listed were reported as occurring by at least half of the caregivers. Such a high
frequency of problems in the behaviour of TBI patients has been reported by
previous researchers [12, 16]. The most frequently reported behavioural problems
were predominately emotional in nature with the majority of them being beha-
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vioural problems of an externalizing type. Despite their high prevalence, the pres-
ence of childish and impulsive behaviour caused comparatively least distress for
caregivers. Instead it was the presence of anger, dependency, and apparent apathy
that caregivers found most difficult to deal with. Fortunately aggression was one of
the least frequently reported problems, although with a prevalence rate of 32% it
was still a problem for many caregivers. Similarly, irresponsibility was comparatively
less frequently reported although its prevalence (29%) was sufficient to indicate that
a substantial proportion of the caregivers felt that they had to constantly monitor the
person with TBI. The presence of such ongoing responsibilities and demands has
been found to be one of the main determinants of the caregivers’ perceived ade-
quacy of social support [19]. These findings that problems with emotional control,
dependency, and apathy are the most difficult problems facing caregivers’ have also
been reported by other researchers [4, 6, 16].
Psychosocial functioning was significantly impaired for a substantial proportion
of this group of 69 caregivers at 1-year post-injury. Clinically significant levels of
anxiety were evident in 35% of the caregivers. A similar level of clinically significant
depression (32%) was also reported by the caregivers. Overall social adjustment was
impaired for 25% of the caregivers in this sample. Allowing for the differences in
severity of injury and time since injury, these figures are within the range reported
by previous researchers [11± 14, 17]. Examination of the degree of impairment
across particular role areas provides some insight into the impact that caregiving
has on the caregiver’ s wider social functioning. It appears that it is the caregiver’s
relationships with their own partner and children that are most likely to suffer as a
result of the demands of caregiving. This comparatively high frequency of disrup-
tion to relationships within the immediate family unit is matched by the most severe
degree of disruption occurring to relationships with members of the extended
family. These findings provide support for the direction taken by those recent
studies that have focused on the functioning of the entire family unit following
TBI [17± 19].
Various types of objective burden were reported as being experienced by a large
number of caregivers. Over half the caregivers confirmed that at least five of the 15
changes had occurred in their life as a result of caring for the person with TBI. This
provides some further evidence for the validity of the Caregiver Questionnaire in
terms of its item content [29]. The high prevalence of reported disruption to
relationships with family and friends (53%) confirms the findings from the measure
of social adjustment that the caregiver’s family unit bears a considerable proportion
of the social cost associated with caring for a person with a severe TBI. The four
most frequently reported items of `have less time to myself’ , anxiety, change in sleep
pattern, and lack of privacy provide a clear picture of the personal consequences
associated with caring for a person with a severe TBI. The most frequently reported
item of `have less time to myself ’ was also the most distressing change reported by
caregivers. The high frequency of these particular types of objective burden is
consistent with both the caregivers’ reports of dependency as being one of the
most distressing behavioural changes to occur in the person with TBI, and the
high prevalence of clinically significant levels of affective distress within the care-
giver sample. Previous researchers have noted an increase in medication use and a
decrease in employment amongst those who care for people with TBI [5, 6, 16].
While both these changes were among the less frequently reported by the current
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sample, they were rated as two of the three most distressing consequences of
caregiving.
Correlational and multiple regression analyses were used in an attempt to under-
stand the relationship between impairments in the person with TBI and caregiver
functioning. The results from the correlational analysis demonstrated the major
impact that the presence of emotional difficulties in the person with TBI has on
all aspects of caregiver functioning. The presence of physical disabilities and
decreased social contact were not related to the caregiver’s level of anxiety.
Despite their high prevalence (87%), reports of cognitive difficulties in the person
with TBI were not significantly related to any of the three aspects of caregiver
psychosocial functioning. While all five aspects of the person with TBI’ s functioning
were significantly related to subjective burden, it was the number of behavioural
problems (r = 0.44) and the social isolation (r = 0.45) of the person with TBI that
had the strongest relationships with the level of caregiver subjective burden.
Unfortunately both of these problems have been shown to increase, rather than
decrease, as a function of time since injury [16, 31].
The results from the regression analysis indicated that the five variables describ-
ing the functioning of the person with TBI were, on their own, insufficient to
explain caregiver levels of anxiety and depression. It may be that these aspects of
caregiver psychosocial adjustment are more related to caregiver perceived levels of
social support [19]. Despite this the five TBI variables were significantly related to
the caregiver’ s overall level of objective burden, social adjustment, and subjective
burden. The three variables of physical changes, social isolation, and number of
behavioural problems each made significantly unique contributions in explaining
the caregiver’s level of both objective and subjective burden.
Although there is a consensus regarding the pivotal role of behavioural and
emotional problems in determining the experience of caregiver burden, previous
research has produced conflicting results on the role of physical disability and
cognitive impairment [15, 18, 19]. These inconsistent findings may be a conse-
quence of the varying levels of injury severity present in the previous samples of
people with TBI. In the current study all participants had experienced a severe TBI
and may therefore have had a greater overall level of physical disability than less
severely injured samples. This may explain the significant role that the presence of
physical disabilities played in determining the caregiver’s level of objective and
subjective burden. Conversely, there was little evidence to suggest that caregivers
experience burden as a result of the person with severe TBI person’s cognitive
problems. Despite the presence of many different types of emotional and behavioural
problems following severe TBI, it is the anger, apathy, and dependency of the person
with TBI that impacts most severely on their caregivers. These behaviours appear to
result in the caregivers being unable to take time to attend to their own personal
needs. The consequences of this situation are evident in the high levels of affective
distress and disrupted family relationships reported by the caregivers.
It may be that it is socially or economically desirable or necessary for the families
of people with severe TBI to provide the majority of their care [32]. However a
significant number of these 69 caregivers were experiencing adverse effects at 1-year
post-injury. These effects were not only evident at the individual level of function-
ing but also impacted on the functioning of the extended family unit. These find-
ings may assist rehabilitation professionals in determining the priorities of post-acute
rehabilitation programmes. Perhaps they may provide further evidence to assist
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those who negotiate with policy makers in an attempt to acquire a greater share of
resources for people with TBI and their families.
Acknowledgem ents
This research was supported by a grant from the New Zealand Neurological
Foundation Inc. The authors wish to thank Jason Clapham and Michelle
Lamond who assisted with the data collection.
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