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-

1046 N. V. Marsh et al.B

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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-

Caregiver burden following severe TBI 1055B

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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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