Caregiver burden at 1 year following severe traumatic brain injury

BRAIN INJURY,

1998,

VOL.

12,

NO .

12, 1045± 1059

Caregiver burden at 1 year following severe traumatic brain injury N IGEL V. M ARSH² , DEN YSE A. KERSE L² , JAC K H . H AV ILL³ an d JAM IE W . SLE IG H ³ ² Department of Psychology, University of Waikato, Hamilton, New Zealand ³ 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 1year post-injury. Caregivers completed questionnaires on the physical, cognitive, emotional, behavioural, 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.

Introd uctio n 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, psychosom atic disorders, increased consumption 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 Correspondence to: Nigel V. Marsh, PhD, Department of Psychology, University of Waikato, Private Bag 3105, Hamilton, New Zealand 0269± 9052/98 $12 ´ 00

Ñ

1998 Taylor & Francis Ltd.

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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 communication 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, som e researchers have developed instruments designed to assess specific aspects of caregiving [9]. However the distinction between objective and subjective burden has remained central to most research in this area [10]. Recent studies continue to document major consequences of TBI for the primary 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 significant 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 longitudinal studies of caregiver burden utilized telephone interviews to assess 51 caregivers 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 employm ent 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 functioning was reported by 56% of the sample. In the second study the number of beha-

Caregiver burden following severe TBI

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vioural problems reported for the person with TBI was a better predictor of caregiver 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 assessm ent 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 caregiver 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 consecutive 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

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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 recovery 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. Fortyeight (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 1year 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-

Caregiver burden following severe TBI Table 1.

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Demographic information for the patients with TBI and their primary caregivers (n = 69)

Patients with TBI Age (years) Mean SD Range Gender Female Male Cause of TBI Road traffic crash Fall Assault Other Days since TBI Mean SD Range Glasgow Outcome Scale Severe disability Moderate disability Good recovery Caregivers Age (years) Mean SD Range Gender Female Male Living with the patient with TBI Yes No Relationship to the patient with TBI Parent Spouse/partner Other relative Friend

28 11 16± 57 17 (25%) 52 (75%) 53 (77%) 7 (10%) 5 (7%) 4 (6%) 388 33 345± 497 21 (30%) 13 (19%) 35 (51%)

44 12 19± 71 58 (84%) 11 (16%) 48 (70%) 21 (30%) 44 (64%) 17 (25%) 7 (10%) 1 (1%)

ments of both the people with TBI and their primary caregivers. Sim ilar 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

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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’ impairm ent. 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 `severe’ 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 burden (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, distressed them).

Res ults 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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Caregivers’ frequency and distress ratings for changes in the patient with TBI at 1-year postinjury

Problem area

Frequency

Physical Cognitive Emotional Social isolation Behavioural* Impatient Overly sensitive Childish Impulsive Argumentative Anger Lack of motivation Lack of interest Depressed Poor insight Anxious Irritable Poor decision making Mood changes Lack of initiative Complaining Dependent Social behaviour Aggression Irresponsible

Mean distress

59 59 58 51

(87%) (87%) (85%) (75%)

3.14 3.14 3.41 3.14

51 42 42 42 40 38 37 37 37 34 34 33 33 31 29 27 26 26 22 20

(74%) (61%) (61%) (61%) (58%) (55%) (54%) (54%) (54%) (49%) (49%) (48%) (48%) (45%) (42%) (39%) (38%) (38%) (32%) (29%)

2.61 2.31 2.26 2.17 2.33 2.76 2.68 2.65 2.60 2.50 2.44 2.49 2.39 2.65 2.24 2.33 2.69 2.54 2.50 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 Depression Social Adjustment * Work Social and leisure Extended family Marital Parental Family unit Overall

19 (29%) 9 (14%)

2 (3%) 7 (11%)

2 (3%) 5 (8%)

23 (35%) 21 (32%)

9 9 9 9 5 12 10

1 3 2 1 1 2 6

1 2 4 0 1 2 0

11 14 15 10 7 16 16

(15%) (14%) (14%) (18%) (12%) (19%) (15%)

(2%) (5%) (3%) (2%) (2%) (3%) (9%)

(2%) (3%) (6%) (2%) (3%)

(18%) (22%) (23%) (20%) (16%) (25%) (25%)

*n differs due to fact that not all role areas were applicable.

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 remaining 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 depression (table 3).

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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). Exam ination of the scores obtained for particular role areas indicates that there was comparatively least disruption to the caregivers’ parental roles (16%). No caregivers 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%). Sim ilarly 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 `less 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.

Table 4.

Caregivers’ frequency and distress ratings for changes in their life at 1-year post-injury

Problem area Time for myself Anxiety Sleep Privacy Relationships Depression Anger Financial Employment Energy Housing Appetite Substance (alcohol etc.) use Illness Medication use

Frequency 45 41 37 36 36 30 30 30 24 24 19 16 12 8 4

(66%) (60%) (54%) (53%) (53%) (44%) (44%) (44%) (35%) (35%) (28%) (24%) (18%) (12%) (6%)

Mean distress 3.09 2.78 2.78 2.83 2.58 2.93 2.83 2.73 3.08 2.88 2.26 2.56 2.75 2.88 3.00


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Correlations between the functioning of the patient with TBI and caregiver burden and psychosocial adjustment Caregiver functioning

TBI patient’s functioning Physical Cognitive Emotional Behavioural Social *p

Objective burden

Anxiety

Depression

Social adjustment

Subjective burden

0 . 35* 0. 22 0 . 38* 0 . 38* 0 . 40*

- 0. 21 - 0. 07 - 0. 28 ** - 0. 29 - 0. 21

- 0. 25* - 0 . 12 - 0. 28* - 0 . 22 - 0. 33*

- 0 . 22 - 0 . 17 - 0. 35** - 0. 29* - 0. 27

- 0. 35 ** - 0. 27 * - 0. 37 * - 0. 44 * - 0. 45

< 0. 05.

Correlational analysis The relationships between changes in the person with TBI and caregiver psychosocial 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 functioning 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 functioning. 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.

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-

-

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-

,

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-

,

,

-

-

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1054 Table 6.

N. V. Marsh et al. Summary of simultaneous regression analysis for patient with TBI variables predicting caregiver functioning

Caregiver

b

TBI patient

Objective burden

2

Anxiety

- 0 . 01

- 0 . 18

Physical Cognitive Emotional Behavioural Social

Depression

- 0 . 17


Social Adjustment

2

Subjective burden

R = 0. 41

R = 0. 42*

2

Physical Cognitive Emotional Behavioural Social 2

- 0. 98 - 0. 20 - 1. 20 - 1. 19 - 0. 91

0. 03 - 0 . 19 - 0 . 17 - 0 . 12 Adjusted R = 0. 10

- 0 . 24 - 0 . 07

- 2. 16 * - 0. 60

- 0 . 36 - 0 . 27

- 3. 08 ** - 2. 46

0 . 004

2

R = 0 . 38

0 . 51

- 0. 80 - 0. 80 - 1. 61

- 0 . 13

Physical Cognitive Emotional Behavioural Social 2

- 1. 27

0. 07 - 0 . 13 - 0 . 11 - 0 . 21 Adjusted R = 0. 10

R = 0 . 17

0 . 82

- 0. 92 - 1. 49 - 0. 49 R = 0. 38

2

2

- 1. 32

0. 12 - 0 . 15 - 0 . 21 - 0 . 07 Adjusted R = 0. 07

R = 0. 17

0 . 75 2. 12* 2. 03*

R = 0. 57*

2

2

- 0. 09

0. 10 0. 26 0. 24

Adjusted R = 0. 26

R = 0. 15

2. 13 *

0. 25


R = 0 . 32

t

Adjusted R = 0. 33

0. 30

R = 0. 62*

* p < 0. 05.

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 individual 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

,

,


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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 behavioural 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 depression failed to reach significance.

,

D is cu s s io n One of the primary objectives of this research programme is to obtain an understanding 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 problems. 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 5point 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 problems 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 presence 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 adequacy 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 disruption 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 caregiver sam ple. 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 understand 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 describing 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 consequence 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 functioning but also impacted on the functioning of the extended family unit. These findings 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. A cknowled g em en ts 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. Referenc es 1. GRAD , J. and S A INSBURY, P.: Mental illness and the family. Lancet, 1: 544± 547, 1963. 2. P ANTING, A. and M ERRY, P. H.: The long-term rehabilitation of severe head injuries with particular reference to the need for social and medical support for the patient’s family. Rehabilitation, 38: 33± 37, 1972. 3. W ALKER, A. E. : Long term evaluation of the social and family adjustment to head injuries. Scandinavian Journal of Rehabilitation Medicine, 4: 5± 8, 1972. 4. B ROOKS, D. N. : The head-injured family. Journal of Clinical and Experimental Neuropsychology, 13: 155± 188, 1991. 5. FLORIA N, V. and K A TZ, S.: the other victims of traumatic brain injury: Consequences for family members. Neuropsychology, 5: 267± 279, 1991. 6. K REUTZER, J. S., M A RW ITZ, J. H. and K EPLER, K. : Traumatic brain injury: Family response and outcome. Archives of Physical Medicine and Rehabilitation, 73: 771± 778, 1992. 7. L EZAK , M. D. : Brain damage is a family affair. Journal of Clinical and Experimental Neuropsychology, 10: 111± 123, 1988. 8. L IVINGSTON, M. G. and B ROOKS , D. N. : The burden on families of the brain injured: A review. Journal of Head Trauma Rehabilitation, 3: 6± 15, 1988. 9. K REUTZER, J. S. S ERIO, C. D. and B ERGQUIST, S. : Family needs after brain injury: A quantitative analysis. Journal of Head Trauma Rehabilitation, 9: 104± 115, 1994. 10. K AUSAR, R. and POW ELL , G. E.: Subjective burden on carers of patients with neurological problems as a consequence of precise objective symptoms (objective burden). Clinical Rehabilitation, 10: 159± 165, 1996. 11. N OVA CK , T. A., B ERGQUIST, T. F., B ENNETT, G. et al.: Primary caregiver distress following severe head injury. Journal of Head Trauma Rehabilitation, 6: 69± 77, 1991. 12. M ITCHLEY , N., GRA Y , J. M. and PENTLAND , B.: Burden and coping among the relatives and carers of brain-injured survivors. Clinical Rehabilitation, 10: 3± 8, 1996. 13. GILLEN, R. W., TENNEN, H. A. and S TEINPRESS, R.: Depression in family members of traumatically brain injured adults [Abstract]. Archives of Clinical Neuropsychology, 9: 130± 131, 1994. 14. W HALLEY, HAMMELL , K. R. : Psychosocial outcome following severe closed head injury. International Journal of Rehabilitation Research, 17: 319± 332, 1994. 15. A LLEN , K., L INN , R. T., GUTIERREZ, H. et al.: Family burden following traumatic brain injury. Rehabilitation Psychology, 39: 29± 48, 1994. 16. HA LL , K. M., K A RZMARK , P., S TEVENS, M. et al.: Family stressors in traumatic brain injury: A two-year follow-up. Archives of Physical Medicine and Rehabilitation, 75: 876± 884, 1994. 17. K REUTZER, J. S., GERVASIO, A. H. and CA MPLA IR, P. S.: Primary caregivers’ psychological status and family functioning after traumatic brain injury. Brain Injury, 8: 197± 210, 1994. 18. K REUTZER, J. S., GERVASIO, A. H. and CAMPLAIR, P. S. : Patient correlates of caregivers’ distress and family functioning after traumatic brain injury. Brain Injury, 8: 211± 230, 1994. 19. D OUGLAS, J. M. and S PELLACY , F. J.: Indicators of long-term family functioning following severe traumatic brain injury in adults. Brain Injury, 10: 819± 839, 1996. 20. HA VILL , J. H., S LEIGH , J. W., K ERSEL, D. A. et al.: Profile and cost of head injury patients admitted to the Waikato Hospital Intensive Care Unit. New Zealand Medical Journal, 111: 161± 163, 1998. 21. T EASDALE, G. and J ENNETT, B.: Assessment of coma and impaired consciousness: A practical scale. Lancet, 2: 81± 84, 1974. 22. J ENNETT, B. and B OND , M. : Assessment of outcome after severe brain damage: A practical scale. Lancet,1: 480± 484, 1975.


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