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Preinjury emotional and family functioning in caregivers of persons with traumatic brain injury
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Preinjury Emotional and Family Functioning in Caregivers of Persons With Traumatic Brain Injury Angelle M. Sander, PhD, Mark Sherer, PhD, James F. Malec, PhD, Walter M. High Jr, PhD, Risa Nakase Thompson, PhD, Anne M. Moessner, MSN, RN, Jennifer Josey, BA ABSTRACT. Sander AM, Sherer M, Malec JF, High WM Jr, Thompson RN, Moessner AM, Josey J. Preinjury emotional and family functioning in caregivers of persons with traumatic brain injury. Arch Phys Med Rehabil 2003;84:197-203. Objective: To characterize the preinjury family functioning, emotional distress, and social support of caregivers of persons with traumatic brain injury (TBI). Design: Inception cohort. Setting: Three Traumatic Brain Injury Model Systems centers’ inpatient rehabilitation facilities. Participants: One hundred ninety-one caregivers, primarily white and female, of persons with TBI. Interventions: Not applicable. Main Outcome Measures: The Brief Symptom Inventory, Family Assessment Device, Multidimensional Scale of Perceived Social Support, and history of medical and psychiatric illness. Results: Thirty-seven percent of caregivers indicated symptoms of emotional distress consistent with psychiatric diagnoses for the month before injury, whereas 27% reported a history of psychiatric or psychologic treatment at some point in the past. Between 25% and 33% of caregivers reported unhealthy family functioning in 1 or more areas for the month before injury. Persons with an annual income less than $10,000 reported less healthy preinjury family functioning. Caregivers reported good satisfaction with preinjury social support, and very few caregivers reported a history of substance abuse. Conclusion: A substantial proportion of caregivers reported emotional distress and/or unhealthy family functioning before injury. Such difficulties may make them more vulnerable to the stress associated with injury and result in greater coping difficulties. Key Words: Brain injuries; Caregivers; Family; Rehabilitation. © 2003 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation
From the Department of Physical Medicine and Rehabilitation, Baylor College of Medicine, Houston, TX (Sander, High, Josey); TIRR, Houston, TX (Sander, High); Methodist Rehabilitation Center, Jackson, MS (Sherer, Thompson); Departments of Neurology and Psychiatry, University of Mississippi Medical Center, Jackson, MS (Sherer, Thompson); and Departments of Psychiatry and Psychology (Malec) and of Physical Medicine and Rehabilitation (Moessner), Mayo Medical Center and Medical School, Rochester, MN. Supported in part by the National Institute on Disability and Rehabilitation Research, US Department of Education (grant nos. H133A980058-01, H133A70015, H133A980035, H133A980036). No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated. Reprint requests to Angelle M. Sander, PhD, Brain Injury Research Center, 2455 S Braeswood, Houston, TX 77030, e-mail: [email protected]. 0003-9993/03/8402-7430$35.00/0 doi:10.1053/apmr.2003.50105
HERE HAS BEEN A PLETHORA of research studies T documenting the difficulties experienced by family members after traumatic brain injury (TBI). In a series of studies 1
conducted in Glasgow, investigators showed that caregivers reported substantial perceived stress or injury-related burden at 3 months postinjury and that this stress increased at 6 months and 1 year. Follow-up studies5,6 revealed that perceived burden persisted in the majority of family members at 5 years and 7 years after injury. The occurrence of significant injury-related stress or burden has been confirmed by other investigators.7-9 The earliest studies mentioned previously reported on the stress that caregivers perceived in direct relation to the injury and its impact on their lives. Another method of documenting the impact of injury is to assess caregivers’ emotional functioning, family functioning, and functional activities. By using the General Health Questionnaire in a sample of persons caring for individuals with severe injury, Livingston et al3,4 showed that over one third of caregivers reported symptoms of emotional distress that would be consistent with a psychiatric diagnosis at 3 and 6 months postinjury. Approximately one fourth of caregivers met these criteria at 1 year after injury.4 Kreutzer et al10 used the Brief Symptom Inventory (BSI) to assess emotional distress in caregivers of persons with mild, moderate, and severe injury. Their data revealed that 47% of caregivers reported symptoms of distress that would be consistent with a psychiatric diagnosis.10 There has also been evidence that caregivers report an increased need for mental health services after the injury.11 Researchers have also documented the presence of disrupted family and marital functioning after TBI. Using the Family Assessment Device (FAD), Kreutzer10 showed that over one half of caregivers reported general family interactions that were in the unhealthy range. The most frequently reported area of family disruption was communication, with over 75% of the sample reporting unhealthy functioning in this area. In addition, over one third of the sample reported unhealthy functioning in the areas of roles, rules for behavior among family members, and sharing of affection and warmth among family members.10 Other researchers12 have documented decreased marital satisfaction and marital longevity in caregivers after TBI. The social functioning of caregivers apart from their role within the family has also been shown to be disrupted after TBI. Family members who become the sole source of support for the person with injury may become increasingly isolated over time.13,14 Researchers have reported impairments in global social adjustment and decreased rates of employment for caregivers.4,11 Further evidence of caregiver distress after injury has been provided by researchers documenting the use of alcohol and other substances after injury. In an early study, Panting and Merry15 found an increased use of tranquilizers among family members of persons with severe TBI. Hall et al11 showed an increased rate of alcohol dependence and use of psychotropic medications at 2 years postinjury among caregivers of persons who had attended inpatient rehabilitation. 2-4
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The research to date has clearly documented that caregivers experience substantial emotional distress and disruption to their lives after TBI. Researchers have generally assumed that this distress and disruption is a consequence of the injury and its impact on caregivers’ lives. However, empirical evidence directly supporting this assumption has not been unequivocal. Researchers have attempted to predict family members’ adjustment on the basis of injury-related variables, such as injury severity and level of impairment in the person with injury. Although injury severity has been shown to be related to caregivers’ distress at 3 months after injury, little association has been noted at longer follow-up periods.2-4,16,17 Researchers16-19 investigating the contribution of level of impairment in the person with injury to family members’ distress have found that emotional and behavioral changes are most related to relatives’ perceived stress and emotional difficulties. A moderate relationship has been found between cognitive difficulties in the person with injury and caregiver distress.2,16,17 In contrast, little relation has been found between relatives’ emotional status and the physical functioning of persons with injury.2,12,16,17 Other researchers20,21 have shown that caregivers’ coping style and perceptions of social support are more predictive of their emotional distress than the injury severity or disability level of the person for whom they care. Although research has indicated that a substantial number of caregivers experience significant distress after injury, not all family members experience clinically significant levels of distress. Clinically, it is not unusual to observe 2 family members who are caring for persons with similar injury severity and similar impairments and disability, yet have different degrees of emotional adjustment. Evidence indicates the possibility that some caregivers may have experienced family stress and emotional distress before injury and that the injury could exacerbate these preexisting problems. A large percentage of persons with TBI are from relatively lower socioeconomic backgrounds.22 The financial difficulties associated with low socioeconomic status can be a source of significant family distress. Also, the rate of preinjury alcohol and substance abuse in persons with TBI is higher than in the noninjured population.23,24 Substance abuse can contribute to family distress, independent of injury. A few preliminary studies have indicated that preinjury caregiver functioning is predictive of postinjury adjustment. Livingston25 found that caregivers’ preinjury general health and psychiatric functioning was the best predictor of distress at 1 year postinjury. In a sample of 61 caregivers assessed at 11⁄2 years postinjury, Gillen et al19 found that 41% had experienced an episode of depression before injury. The majority of caregivers who met the criteria for major depression after injury had also been depressed before injury. Although this study provides preliminary data for the importance of preinjury functioning in predicting caregivers’ adjustment to injury, the study was limited by the fact that data collection was not prospective. Participants were family members who had responded to invitations to participate in a study and thus may have represented a biased sample. The purpose of our study was to characterize the preinjury family environment of persons with TBI as a first step toward predicting postinjury adjustment. The ability to predict which family members will have particular difficulty adjusting to the injury would allow rehabilitation professionals to identify caregivers who are at risk early in the rehabilitation process, and to target interventions to reduce future difficulties. Characterization of the preinjury family environment can also be important in predicting long-term outcome in the person with injury. Preinjury family environment has been shown to be uniquely predictive of global adaptive functioning, social competence, Arch Phys Med Rehabil Vol 84, February 2003
Table 1: Demographic Characteristics of Caregivers Age (median, 25th, 75th percentiles) Education (median, 25th, 75th percentiles) Sex (% female) Relation to person with injury (%) Parent Spouse/significant other Other Race (%) White African American Hispanic Other Marital status (%) Married/cohabitating Not married Annual income (%) ⬍$10,000 $10,001–$20,000 $20,001–$50,000 ⬎$50,000
44 (37, 52) 12 (12, 14) 79 52 39 9 75 13 11 1 78 22 11 12 44 33
behavior problems, academic performance, and cognitive functioning after TBI in children.26,27 Characterization of the preinjury family environment in adults with TBI could lead to similar prediction studies. To allow for comparisons with studies investigating postinjury caregiver adjustment, we used a multidimensional approach to characterizing the preinjury family environment. The measures used assessed caregivers’ emotional distress and family systems functioning in the month before injury, as well as history of medical illness, psychiatric or psychologic treatment, and substance abuse. Because research has indicated that persons from minority backgrounds and persons of low socioeconomic status are more vulnerable to the effects of accumulated stressors on mental health,28 the effect of race and income on preinjury distress and family functioning were also investigated. METHODS Participants Participants were 197 caregivers of persons with TBI who were consecutively admitted to 1 of 3 participating comprehensive inpatient rehabilitation facilities between February 1999 and July 2001. The facilities were funded by the National Institute on Disability and Rehabilitation Research as Traumatic Brain Injury Model Systems. Criteria for enrollment in the Model Systems study included medically documented TBI; treatment at the emergency center of a level I trauma center within 24 hours of injury; receipt of inpatient rehabilitation within the Model Systems; age of at least 16 at the time of injury; and provision of informed consent by the person with injury or a legal proxy. Caregivers of the person with injury were recruited for the current study if they were at least 18 years of age and able to provide informed consent and if they identified themselves as the primary person responsible for the care of the person with injury. Demographic characteristics for the caregivers are shown in table 1. The majority of caregivers were white women, above the age of 40, with a high school education. Regarding the relationship to the person with injury, the majority were parents, with slightly over one third being spouses. Over half of the caregivers were employed at the time of injury, and approximately
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one third had a yearly household income exceeding $50,000. The majority of caregivers were caring for young persons (median age, 30y; 25th percentile⫽20y; 75th percentile⫽43y). Injury severity was characterized by the Glasgow Coma Scale (GCS) score at the time of admission to the emergency department. Consistent with the criteria for injury severity set forth by Teasdale and Jennett,29 persons with GCS scores of 8 or lower were classified as having experienced severe TBI. Persons with GCS scores of 9 or greater were classified as having experienced mild to moderate injury. All persons with mild injury in our study were those who experienced neurologic complications severe enough to necessitate inpatient rehabilitation. Over 67% were caring for persons with severe injury based on the GCS29 score on admission to the emergency department. The remainder cared for persons with moderate or complicated mild injury. Seventy-two percent of caregivers reported living with the person for whom they cared before injury. Measures The following self-report questionnaires were administered to caregivers. Brief Symptom Inventory. The BSI30 is a 53-item questionnaire that asks individuals to rate the extent to which they have experienced symptoms during the past month. Items are rated on a scale ranging from 0 (not at all) to 4 (extremely). The BSI yields 3 global distress indices and 9 clinical subscales that reflect different categories of emotional distress: depression, anxiety, somatization, hostility, obsessive-compulsive, interpersonal sensitivity, phobic anxiety, paranoid ideation, and psychoticism. Raw scores on each scale are converted to T scores that are corrected for gender. Based on normative data, cutoff scores are provided for classifying a person’s pattern of responses as indicative of caseness (ie, likely to receive a clinical psychiatric diagnosis). Responses are considered to represent caseness if the person obtains a T score ⱖ63 on the Global Severity Index or if they obtain a T score ⱖ63 on 2 or more individual subscales. Adequate internal reliability and good convergent and construct validity have been shown.30 Normative data and cutoff scores for abnormal functioning are available. The BSI has shown sensitivity to the types of difficulties experienced by family members after TBI.10,17 Assessment Device. The FAD31,32 is a 60-item self-report questionnaire that assesses multiple aspects of family functioning, including roles, communication, and quality of relationships. Factor analysis has confirmed the presence of 6 scales: problem solving, roles, communication, affective responsiveness, affective involvement, and behavior control. Additionally, a General Functioning Scale (GFS) score is obtained, representing all dimensions of family functioning. Scores on each scale range from 1 to 4, with higher scores representing more unhealthy functioning. The researchers have provided normative data and cutoff scores to classify unhealthy functioning. The cutoff scores range from 1.9 to 2.2, depending on the scale. Previous research10 has shown the validity of the FAD for use with family members of persons with TBI. For our study, preinjury family functioning was classified as either healthy or unhealthy based on whether caregivers’ scores exceeded the cutoff scores provided in the FAD manual.17,33 Multidimensional Scale of Perceived Social Support. The Multidimensional Scale of Perceived Social Support34 (MSPSS) was designed to assess persons’ satisfaction with perceived social support systems. The scale consists of 12 items assessing satisfaction with support from family members, friends, and a spouse or significant other. Respondents rate each item on a scale of 1 (very strongly disagree) to 7 (very
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strongly agree). The results of factor-analytic procedures have shown 3 distinct factors corresponding to perceived support from friends, family, and a significant other. Good internal consistency has been shown by the Cronbach ␣ coefficients, ranging from .85 to .94 for the total and scale scores. Concurrent validity has been shown by significant correlations between the MSPSS and the Social Support Behaviors Scale, another scale of perceived social support.35 For our study, average scale scores of 1 to 3 were classified as dissatisfied, whereas average scores of 5 to 7 were classified as satisfied. In addition to the self-report questionnaires, caregivers were administered a structured interview regarding functioning before injury. The following measures were obtained during this interview. History of medical illness. Caregivers were asked if they had ever experienced a serious medical illness. History of psychologic difficulties and psychiatric illness. Caregivers were asked if they had ever experienced a psychologic difficulty requiring treatment. Treatment was categorized as either inpatient psychiatric care; outpatient treatment by a psychiatrist, psychologist, or counselor; or having been prescribed psychotropic medications by a general physician. History of alcohol and drug abuse. Caregivers were asked about their use of alcohol and drugs, and the examiner assessed whether alcohol and/or drug use met Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) criteria for substance abuse. Impact of race and income. The race of caregivers was coded as a dichotomous variable: white and nonwhite. Annual income was coded into 4 categories: ⬍$10,000, $10,001 to $20,000, $20,001 to $50,000, and ⬎$50,000. In addition to the caregiver measures, information on the age, gender, and injury severity of the person with injury was obtained from the medical records. Procedure The study procedures, including informed consent, were approved by the institutional review boards at each of the 3 participating centers. Caregivers were recruited for the study within 2 weeks of their family member’s admission to 1 of the 3 participating inpatient rehabilitation units. Once informed consent was obtained, a trained examiner administered the structured interview and the self-report questionnaires. The examiners were research assistants with bachelor’s degrees in psychology or a related field. Interviews at all centers were conducted according to a research syllabus that was prepared by the principal investigator. The principal investigator also conducted training sessions for the research staff at all 3 centers. For the BSI, FAD, and MSPSS, caregivers were instructed to complete the questionnaires regarding their functioning in the month before injury. The examiner remained with them during completion of the questionnaires and reminded them when beginning each one that they should respond to questions based on functioning during the month before injury. As a further assurance that caregivers would be able to recall functioning in the month before injury, responses were excluded from the current analyses if the time between injury and completion of the questionnaires was greater than 3 months. Six persons were excluded from analysis for this reason, yielding the final sample size of 191. The average number of days ⫾ standard deviation between injury and completion of the questionnaires was 36⫾18 days, with a median of 33 (25th percentile⫽21d, 75th percentile⫽47d). Because caregivers were asked to provide retrospective estimates of their functioning before injury, the possibility existed that their perceptions would be biased by the injury or that Arch Phys Med Rehabil Vol 84, February 2003
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they would find it difficult to distinguish between their preinjury and postinjury functioning. One way to test for this possibility is to assess whether their estimates differed by injury severity. If estimates of preinjury functioning were biased by the injury, then it could be anticipated that caregivers of persons with more severe injury would experience greater postinjury distress. Their postinjury distress could bias their ratings of preinjury functioning, possibly leading them to over- or underestimate their preinjury distress. This method of assessing for bias in caregivers’ estimates of preinjury functioning has been used in research after pediatric TBI.27 In our study, data on injury severity, as assessed by GCS scores on admission to the emergency department, were available for 88% of the sample. Chi-square analyses were conducted to determine differences between caregivers of persons with severe injury (GCS score ⱕ8) and moderate and complicated mild injury with regard to the percentage classified as caseness on the BSI and the percentage classified as having unhealthy family functioning on the FAD GFS. There was no difference between the injury severity groups for either the BSI or the FAD. Thus, it was concluded that caregivers’ estimates of emotional distress and family functioning in the month before injury were unlikely to be biased by the injury itself. Based on interview data, caregivers were coded as having a history of medical illness, psychiatric illness, or substance abuse if they had ever experienced such problems in the past. The rationale here was that any history of serious medical or psychiatric difficulties could render caregivers more vulnerable to difficulties after injury. RESULTS Findings Preinjury emotional distress. Thirty-seven percent of caregivers indicated symptoms of emotional distress on the BSI that would be consistent with a probable psychiatric diagnosis. Preinjury family functioning. The percentages of caregivers reporting unhealthy family functioning on each of the FAD subscales and the GFS are shown in figure 1. Between 25% and 33% of caregivers reported unhealthy functioning on 1 or more of the FAD scales. Preinjury satisfaction with social support. The majority of caregivers (92%) reported overall satisfaction with the social support they received in the month prior to injury, with only 2% reporting dissatisfaction. Satisfaction rates were equivalent for support from significant others (93%), family (89%), and friends (87%).
Fig 1. Family functioning in the month before injury.
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Table 2: Most Frequently Reported Preinjury Medical and Psychologic Difficulties % of Family Members Reporting (n)
Medical Illness (n⫽189) Hypertension Cancer Diabetes Migraines Psychiatric illness and psychologic difficulties (n⫽188) Prescribed antidepressant medication Prescribed antianxiety medication Outpatient counseling for family and relationship issues Prescribed medication for sleep disturbance Depression (treated as inpatient or outpatient)
32 (58) 24 (14)* 14 (8) 12 (7) 7 (4) 27 (52) 29 (15) 17 (9) 13 (7) 11 (6) 10 (5)
* Percentages that are not in bold are based on dividing by the total number of persons who endorsed preinjury medical or psychiatric illness.
History of medical illness. Thirty-two percent of family members reported that they had experienced a serious medical illness in the past. Table 2 shows the most frequent types of medical illness experienced. History of psychologic difficulties and psychiatric illness. Twenty-seven percent of the sample reported a history of psychologic or psychiatric problems. Of this 27%, 2% had received inpatient treatment, 8% had received outpatient treatment, and 17% had been treated by a prescription from their general physician for psychotropic medication. Table 2 shows the most common types of treatment obtained by persons who reported preinjury psychologic difficulties. The majority had received psychotropic medication as the primary treatment. History of substance abuse. The rate of preinjury substance abuse in caregivers was extremely low. Two persons met DSM-IV criteria for substance abuse but had not received treatment. One person had undergone treatment for alcoholism. Impact of race and income. Chi-square analyses were conducted to determine differences in the percentage of persons classified as caseness on the BSI by race and income. When differences were significant, the Cramer V statistic was used to assess the strength of association. Similar analyses were conducted for the FAD GFS. A greater percentage of nonwhite caregivers reported unhealthy family functioning in the month before injury (21⫽5.32, P⫽.02; Cramer V⫽.17). There was a trend for a higher percentage of nonwhite caregivers to meet the criteria for caseness on the BSI for the month before injury (21⫽3.32, P⫽.07). However, chi-square analysis investigating differences in income group as a function of race revealed a higher percentage of persons in the lower 2 income categories for nonwhites as compared with whites (23⫽12.33, P⫽.006; Cramer V⫽.25). To assess the impact of race independent of income, logistic regression was performed with race and income regressed onto FAD GFS classifications (healthy, unhealthy) and onto BSI caseness classifications (case, noncase). After controlling for income, race did not contribute significantly to the variance in caregivers’ family functioning or emotional distress. Thus, it was concluded that racial differences in preinjury family functioning and emotional distress were a function of lower income in nonwhites.
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Fig 2. Preinjury emotional distress and family functioning by annual income.
The results for the BSI and FAD as a function of income are shown in figure 2. A greater percentage of persons earning less than $10,000 per year reported unhealthy family functioning, whereas most persons earning more than $50,000 per year reported healthy family functioning (23⫽11.83, P⫽.008; Cramer V⫽.25). A trend was noted for a greater percentage of persons in the lowest income category to report symptoms consistent with caseness on the BSI (23⫽6.78, P⫽.08). DISCUSSION Our results indicate that many caregivers experienced emotional distress and disruptions in family functioning during the month before injury. Over one third of the caregivers in our study reported experiencing symptoms consistent with those of psychiatric disorders in the month before injury, whereas 25% to 33% reported unhealthy family functioning in 1 or more areas. In addition, slightly over 25% of caregivers reported that they had received treatment for a psychologic or psychiatric problem in the past, and 33% had experienced a significant medical problem. Our findings are consistent with the findings of Gillen et al19 that a substantial proportion of caregivers report experiencing depression before injury. Gillen found that 41% of caregivers had experienced an episode of depression before injury. The fact that this percentage is higher than the percentage of caregivers reporting preinjury psychologic difficulties in our study is likely because of the fact that the Gillen sample was made up of persons who responded to an invitation, which may have led to a bias. In contrast, our study was conducted with a consecutive sample. Additionally, the means used to determine a preinjury episode of depression was not clearly defined in the Gillen study. Although they used DSM-IV criteria to diagnose postinjury depression, their method of assessing preinjury depression was not clear. Studies investigating the impact of TBI on caregivers’ functioning have indicated that between 25% and 50% of caregivers report substantial levels of emotional distress after injury.3,4,10 Furthermore, a substantial proportion of caregivers report disruptions in family systems functioning, increased social isolation, and use of alcohol and other substances.4,10,11 The percentages of persons reporting preinjury emotional distress and difficulties with family functioning are only slightly lower than the percentages of persons found to be experiencing postinjury difficulties in previous studies. It is noteworthy that in our sample caregivers reported good satisfaction with their social support before injury and very few caregivers reported a history consistent with substance abuse. The relatively greater reports of social isolation and substance use among caregivers
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in postinjury studies likely reflect the additional stress created by caring for a person with injury. The results should not be interpreted as indicating that the injury has no additional impact and that caregivers would be equally distressed whether they had to care for an injured person or not. It is clear that caregivers often experience increased stress after TBI that can result in a greater incidence or intensity of emotional distress. Personality change in the person with injury is a major cause of increased stress.18,36 Family members are particularly concerned about behavioral problems such as aggressive acting out.6 A potential cause of caregiver emotional distress that deserves additional investigation is impaired self-awareness. A number of studies have shown that persons with TBI rate themselves as having fewer and less severe impairments than do family members and significant others early in recovery and at late follow-up.37,38 Clinical observations indicate that these differences in perception contribute to interpersonal conflict between persons with injury and their caregivers. The poorer employment outcomes experienced by persons with impaired self-awareness38 may also contribute to caregiver burden by causing financial hardship. Unemployed persons are likely to spend more time in the company of caregivers, increasing the opportunity for interpersonal conflict. Although these injury-related changes can result in additional stress, it is likely that caregivers who have had medical or psychologic difficulties in the past will be more vulnerable to the impact of injury and will have greater difficulty coping. Indeed, environmental stressors have been shown to have a cumulative effect on mental health.28 The utility of preinjury functioning for predicting caregivers’ postinjury adjustment is a topic that should be investigated in future studies. We are currently collecting 1-year follow-up data for persons who have provided information on preinjury functioning, and we will be testing prediction models in the future. According to the recent US Surgeon General’s report on mental health,28 the prevalence of mental disorder at any one time in the United States is approximately 20%. The prevalence of depression in the adult population has been estimated at 10% to 20%.39 The rate of preinjury psychologic distress reported by caregivers in our study was slightly above these estimates. Although the use of self-report questionnaires, such as the BSI, to diagnose psychologic difficulties can be inaccurate, it is noteworthy that our results using BSI cutoff scores are only slightly higher than the results based on receipt of psychologic treatment. The slightly higher percentage of psychologic difficulties in our sample of caregivers compared with the US population-based statistics may be due to the fact that there is a bias in the type of person who experiences TBI. Persons with TBI are more likely to be from low socioeconomic backgrounds,22 have a greater history of alcohol and substance abuse,23 and have a higher incidence of preinjury arrests.40 These characteristics are likely to be associated with stress to family members. Indeed, lower income was associated with greater unhealthy family functioning in our study and showed a trend to be associated with emotional distress. Our study is among the first to document preinjury family functioning in a prospective cohort of caregivers. However, limitations should be taken into consideration when interpreting results. First, our results are generalizable only to caregivers of persons who participated in inpatient rehabilitation. Owing to the use of an inpatient rehabilitation sample, the majority of caregivers were white, well educated, and had an annual income above $20,000. The results may not be generalizable to caregivers of persons seen at county hospitals, who often do not have the insurance coverage necessary to receive Arch Phys Med Rehabil Vol 84, February 2003
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inpatient rehabilitation. This includes many persons with TBI who are less educated, from a lower socioeconomic status, and from a minority background. Given that these factors have been documented as risk factors for depression in the general population, higher rates of preinjury distress and/or unhealthy family functioning may be found if the study were conducted with a different population. A second limitation corresponds to the criteria for diagnosing psychologic distress in our study. A self-report measure and questions regarding past treatment were used as indications of previous psychologic and psychiatric problems. The use of self-report questionnaires is always subject to response bias. Although use of treatment data may be more likely to rule out false-positives, it may result in falsenegatives because many people experiencing psychiatric symptoms do not seek treatment.28 Future studies could benefit from using structured diagnostic interviews, such as the Structured Clinical Interview for DSM-IV Axis I Disorders. A further limitation relates to the retrospective estimates of preinjury functioning provided by family members. Although precautions were taken to ensure that family members were reporting on family functioning and emotional distress before injury, it is not possible to know with certainty whether this goal was achieved. The fact that the report of preinjury functioning was not related to injury severity would seem to indicate that the reports were not biased by the injury. The results of our study indicate that a substantial percentage of caregivers have backgrounds that may decrease their ability to cope with injury-related stress. These results emphasize the need for targeted interventions. Conducting structured interviews with caregivers early in the rehabilitation process can help to identify those who may be relatively more vulnerable to stress. Such caregivers could be assigned to more intensive follow-along or case management to help prevent the exacerbation of stress. The development of cognitive-behavioral educational interventions to teach stress management and coping techniques may also be beneficial in lessening the impact of injury on emotional health and well-being. We are currently developing such an intervention and plan to evaluate its effectiveness empirically. CONCLUSION Our findings have implications for the recovery of persons with TBI. Family members, particularly primary caregivers, play an important role in recovery. Family members’ roles in the recovery process range from providing transportation for medical and rehabilitation appointments to helping generalize compensatory cognitive strategies to the home and community settings. Persons with TBI who have family environments characterized by distress and unhealthy interactions are likely to have less support and assistance with their recovery. Family members experiencing distress may also be less effective partners in the rehabilitation process. The utility of preinjury family functioning for predicting the outcome of persons with injury is a topic for future research. References 1. Sander AM, Kreutzer J. A holistic approach to family assessment after brain injury. In: Rosenthal M, Griffith ER, Kreutzer J, Pentland B, editors. Rehabilitation of the adult and child with traumatic brain injury. 3rd ed. Philadelphia: FA Davis; 1999. p 199-215. 2. McKinlay WW, Brooks DN, Bond MR, Martinage DP, Marshall MM. The short-term outcome of severe blunt head injury as reported by relatives of the injured persons. J Neurol Neurosurg Psychiatry 1981;44:527-33. Arch Phys Med Rehabil Vol 84, February 2003
3. Livingston MG, Brooks DN, Bond MR. Three months after severe head injury: psychiatric and social impact on relatives. J Neurol Neurosurg Psychiatry 1985;48:870-5. 4. Livingston MG, Brooks DN, Bond MR. Patient outcome in the year following severe head injury and relatives’ psychiatric and social functioning. J Neurol Neurosurg Psychiatry 1985;48:87681. 5. Brooks DN, Campsie L, Symington C, Beattie A, McKinlay W. The five year outcome of severe blunt head injury: a relative’s view. J Neurol Neurosurg Psychiatry 1986;49:764-70. 6. Brooks DN, Campsie L, Symington C, Beattie A, McKinlay W. The effects of severe head injury on patient and relative within seven years of injury. J Head Trauma Rehabil 1987;2(2):1-13. 7. Kay T, Cavallo MM, Ezrachi O, Avagiakis P. The Head Injury Family Interview: a clinical and research tool. J Head Trauma Rehabil 1995;10(2):12-31. 8. Marsh NV, Kersel DA, Havill JH, Sleigh JW. Caregiver burden at 6 months following severe traumatic brain injury. Brain Inj 1998; 12:225-38. 9. Marsh NV, Kersel DA, Havill JH, Sleigh JW. Caregiver burden at 1 year following severe traumatic brain injury. Brain Inj 1998;12: 1045-59. 10. Kreutzer JS, Gervasio AH, Camplair PS. Primary caregivers’ psychological status and family functioning after traumatic brain injury. Brain Inj 1994;8:197-210. 11. Hall KM, Karzmark P, Stevens M, Englander J, O’Hare P, Wright J. Family stressors in traumatic brain injury: a two-year follow-up. Arch Phys Med Rehabil 1994;75:876-84. 12. Peters LC, Stambrook M, Moore AD, Esses L. Psychosocial sequelae of closed head injury: effects on the marital relationship. Brain Inj 1990;4:39-47. 13. Kozloff R. Networks of social support and the outcome from severe head injury. J Head Trauma Rehabil 1987;2(3):14-23. 14. Jacobs HE. The Los Angeles Head Injury Survey: procedures and initial findings. Arch Phys Med Rehabil 1988;69:425-31. 15. Panting A, Merry PH. 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 1972; 82:33-7. 16. Allen K, Linn RT, Guiterrez H, Willer BS. Family burden following traumatic brain injury. Rehabil Psychol 1994;39:29-48. 17. Kreutzer JS, Gervasio AH, Camplair PS. Patient correlates of caregivers’ distress and family functioning after traumatic brain injury. Brain Inj 1994;8:211-30. 18. Brooks DN, McKinlay W. Personality and behavioural change after severe blunt head injury—a relative’s view. J Neurol Neurosurg Psychiatry 1983;46:336-44. 19. Gillen R, Tennen H, Afflek G, Steinpreis R. Distress, depressive symptoms, and depressive disorder among caregivers of patients with brain injury. J Head Trauma Rehabil 1998;13(3):31-43. 20. Douglas JM, Spellacy FJ. Indicators of long-term family functioning following severe traumatic brain injury in adults. Brain Inj 1996;10:819-39. 21. Sander AM, High WM Jr, Hannay HJ, Sherer M. Predictors of psychological health in caregivers of patients with closed head injury. Brain Inj 1997;11:235-49. 22. Kraus JF, Fife D, Ramstein K, Conroy C, Cox P. The relationship of family income to the incidence, external causes, and outcomes of serious brain injury, San Diego County, California. Am J Public Health 1986;76:1345-7. 23. Kreutzer JS, Doherty KR, Harris JA, Zasler N. Alcohol use among persons with traumatic brain injury. J Head Trauma Rehabil 1990;5(3):9-20. 24. Dikmen SS, Machamer JE, Donovan DM, Winn HR, Temkin NR. Alcohol use before and after traumatic brain injury. Ann Emerg Med 1995;26:167-76. 25. Livingston MG. Head injury: the relatives’ response. Brain Inj 2001;1:33-9. 26. Rivara JB, Jaffe KM, Fay GC, et al. Family functioning and injury severity as predictors of child functioning one year following traumatic brain injury. Arch Phys Med Rehabil 1993;74:1047-55.
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27. Yeates KO, Taylor HG, Drotar D, et al. Preinjury family environment as a determinant of recovery from traumatic brain injuries in school-age children. J Int Neuropsychol Soc 1997;3:617-30. 28. US Department of Health and Human Services. Mental health: a report of the Surgeon General. Rockville (MD): Dept of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health; 2001. 29. Teasdale G, Jennett B. Assessment of coma and impaired consciousness. A practical scale. Lancet 1974;2(7872):81-4. 30. Derogatis LR, Spencer PM. The Brief Symptom Inventory. Baltimore: Clinical Psychometric Research; 1982. 31. Epstein NB, Baldwin LM, Bishop DS. The McMaster Family Assessment Device. J Marital Fam Ther 1983;9:171-80. 32. Miller IW, Epstein NB, Bishop DS. The McMaster Family Assessment Device: reliability and validity. J Marital Fam Ther 1985;11:345-56. 33. Zarski JJ, DePompei R, Zook A. Traumatic head injury: dimensions of family responsivity. J Head Trauma Rehabil 1988;3(4): 31-41.
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34. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The Multidimensional Scale of Perceived Social Support. J Pers Assess 1988;52: 30-41. 35. Kazarian SS, McCabe SB. Dimensions of social support in the MSPSS: factorial structure, reliability, and theoretical implications. J Community Psychol 1991;19:150-60. 36. Lezak M. Living with the characterologically altered brain injured patient. J Clin Psychol 1978;39:592-8. 37. Sherer M, Hart T, Nick TG, Whyte J, Thompson RN, Yablon SA. Early impaired self-awareness after traumatic brain injury. Arch Phys Med Rehabil 2003;84:168-76. 38. Sherer M, Bergloff P, Levin E, High WM Jr, Oden KE, Nick TG. Impaired awareness and employment outcome after traumatic brain injury. J Head Trauma Rehabil 1998;13(5):52-61. 39. Simon GE, VonKorff M, Ustun TB, Gater R, Gureje O, Sartorius N. Is the lifetime risk of depression actually increasing? J Clin Epidemiol 1995;48:1109-18. 40. Kreutzer JS, Marwitz JH, Witol AD. Interrelationships between crime, substance abuse, and aggressive behaviours among persons with traumatic brain injury. Brain Inj 1995;9:757-68.
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Preinjury Emotional and Family Functioning in Caregivers of Persons With Traumatic Brain Injury Angelle M. Sander, PhD, Mark Sherer, PhD, James F. Malec, PhD, Walter M. High Jr, PhD, Risa Nakase Thompson, PhD, Anne M. Moessner, MSN, RN, Jennifer Josey, BA ABSTRACT. Sander AM, Sherer M, Malec JF, High WM Jr, Thompson RN, Moessner AM, Josey J. Preinjury emotional and family functioning in caregivers of persons with traumatic brain injury. Arch Phys Med Rehabil 2003;84:197-203. Objective: To characterize the preinjury family functioning, emotional distress, and social support of caregivers of persons with traumatic brain injury (TBI). Design: Inception cohort. Setting: Three Traumatic Brain Injury Model Systems centers’ inpatient rehabilitation facilities. Participants: One hundred ninety-one caregivers, primarily white and female, of persons with TBI. Interventions: Not applicable. Main Outcome Measures: The Brief Symptom Inventory, Family Assessment Device, Multidimensional Scale of Perceived Social Support, and history of medical and psychiatric illness. Results: Thirty-seven percent of caregivers indicated symptoms of emotional distress consistent with psychiatric diagnoses for the month before injury, whereas 27% reported a history of psychiatric or psychologic treatment at some point in the past. Between 25% and 33% of caregivers reported unhealthy family functioning in 1 or more areas for the month before injury. Persons with an annual income less than $10,000 reported less healthy preinjury family functioning. Caregivers reported good satisfaction with preinjury social support, and very few caregivers reported a history of substance abuse. Conclusion: A substantial proportion of caregivers reported emotional distress and/or unhealthy family functioning before injury. Such difficulties may make them more vulnerable to the stress associated with injury and result in greater coping difficulties. Key Words: Brain injuries; Caregivers; Family; Rehabilitation. © 2003 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation
From the Department of Physical Medicine and Rehabilitation, Baylor College of Medicine, Houston, TX (Sander, High, Josey); TIRR, Houston, TX (Sander, High); Methodist Rehabilitation Center, Jackson, MS (Sherer, Thompson); Departments of Neurology and Psychiatry, University of Mississippi Medical Center, Jackson, MS (Sherer, Thompson); and Departments of Psychiatry and Psychology (Malec) and of Physical Medicine and Rehabilitation (Moessner), Mayo Medical Center and Medical School, Rochester, MN. Supported in part by the National Institute on Disability and Rehabilitation Research, US Department of Education (grant nos. H133A980058-01, H133A70015, H133A980035, H133A980036). No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated. Reprint requests to Angelle M. Sander, PhD, Brain Injury Research Center, 2455 S Braeswood, Houston, TX 77030, e-mail: [email protected]. 0003-9993/03/8402-7430$35.00/0 doi:10.1053/apmr.2003.50105
HERE HAS BEEN A PLETHORA of research studies T documenting the difficulties experienced by family members after traumatic brain injury (TBI). In a series of studies 1
conducted in Glasgow, investigators showed that caregivers reported substantial perceived stress or injury-related burden at 3 months postinjury and that this stress increased at 6 months and 1 year. Follow-up studies5,6 revealed that perceived burden persisted in the majority of family members at 5 years and 7 years after injury. The occurrence of significant injury-related stress or burden has been confirmed by other investigators.7-9 The earliest studies mentioned previously reported on the stress that caregivers perceived in direct relation to the injury and its impact on their lives. Another method of documenting the impact of injury is to assess caregivers’ emotional functioning, family functioning, and functional activities. By using the General Health Questionnaire in a sample of persons caring for individuals with severe injury, Livingston et al3,4 showed that over one third of caregivers reported symptoms of emotional distress that would be consistent with a psychiatric diagnosis at 3 and 6 months postinjury. Approximately one fourth of caregivers met these criteria at 1 year after injury.4 Kreutzer et al10 used the Brief Symptom Inventory (BSI) to assess emotional distress in caregivers of persons with mild, moderate, and severe injury. Their data revealed that 47% of caregivers reported symptoms of distress that would be consistent with a psychiatric diagnosis.10 There has also been evidence that caregivers report an increased need for mental health services after the injury.11 Researchers have also documented the presence of disrupted family and marital functioning after TBI. Using the Family Assessment Device (FAD), Kreutzer10 showed that over one half of caregivers reported general family interactions that were in the unhealthy range. The most frequently reported area of family disruption was communication, with over 75% of the sample reporting unhealthy functioning in this area. In addition, over one third of the sample reported unhealthy functioning in the areas of roles, rules for behavior among family members, and sharing of affection and warmth among family members.10 Other researchers12 have documented decreased marital satisfaction and marital longevity in caregivers after TBI. The social functioning of caregivers apart from their role within the family has also been shown to be disrupted after TBI. Family members who become the sole source of support for the person with injury may become increasingly isolated over time.13,14 Researchers have reported impairments in global social adjustment and decreased rates of employment for caregivers.4,11 Further evidence of caregiver distress after injury has been provided by researchers documenting the use of alcohol and other substances after injury. In an early study, Panting and Merry15 found an increased use of tranquilizers among family members of persons with severe TBI. Hall et al11 showed an increased rate of alcohol dependence and use of psychotropic medications at 2 years postinjury among caregivers of persons who had attended inpatient rehabilitation. 2-4
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The research to date has clearly documented that caregivers experience substantial emotional distress and disruption to their lives after TBI. Researchers have generally assumed that this distress and disruption is a consequence of the injury and its impact on caregivers’ lives. However, empirical evidence directly supporting this assumption has not been unequivocal. Researchers have attempted to predict family members’ adjustment on the basis of injury-related variables, such as injury severity and level of impairment in the person with injury. Although injury severity has been shown to be related to caregivers’ distress at 3 months after injury, little association has been noted at longer follow-up periods.2-4,16,17 Researchers16-19 investigating the contribution of level of impairment in the person with injury to family members’ distress have found that emotional and behavioral changes are most related to relatives’ perceived stress and emotional difficulties. A moderate relationship has been found between cognitive difficulties in the person with injury and caregiver distress.2,16,17 In contrast, little relation has been found between relatives’ emotional status and the physical functioning of persons with injury.2,12,16,17 Other researchers20,21 have shown that caregivers’ coping style and perceptions of social support are more predictive of their emotional distress than the injury severity or disability level of the person for whom they care. Although research has indicated that a substantial number of caregivers experience significant distress after injury, not all family members experience clinically significant levels of distress. Clinically, it is not unusual to observe 2 family members who are caring for persons with similar injury severity and similar impairments and disability, yet have different degrees of emotional adjustment. Evidence indicates the possibility that some caregivers may have experienced family stress and emotional distress before injury and that the injury could exacerbate these preexisting problems. A large percentage of persons with TBI are from relatively lower socioeconomic backgrounds.22 The financial difficulties associated with low socioeconomic status can be a source of significant family distress. Also, the rate of preinjury alcohol and substance abuse in persons with TBI is higher than in the noninjured population.23,24 Substance abuse can contribute to family distress, independent of injury. A few preliminary studies have indicated that preinjury caregiver functioning is predictive of postinjury adjustment. Livingston25 found that caregivers’ preinjury general health and psychiatric functioning was the best predictor of distress at 1 year postinjury. In a sample of 61 caregivers assessed at 11⁄2 years postinjury, Gillen et al19 found that 41% had experienced an episode of depression before injury. The majority of caregivers who met the criteria for major depression after injury had also been depressed before injury. Although this study provides preliminary data for the importance of preinjury functioning in predicting caregivers’ adjustment to injury, the study was limited by the fact that data collection was not prospective. Participants were family members who had responded to invitations to participate in a study and thus may have represented a biased sample. The purpose of our study was to characterize the preinjury family environment of persons with TBI as a first step toward predicting postinjury adjustment. The ability to predict which family members will have particular difficulty adjusting to the injury would allow rehabilitation professionals to identify caregivers who are at risk early in the rehabilitation process, and to target interventions to reduce future difficulties. Characterization of the preinjury family environment can also be important in predicting long-term outcome in the person with injury. Preinjury family environment has been shown to be uniquely predictive of global adaptive functioning, social competence, Arch Phys Med Rehabil Vol 84, February 2003
Table 1: Demographic Characteristics of Caregivers Age (median, 25th, 75th percentiles) Education (median, 25th, 75th percentiles) Sex (% female) Relation to person with injury (%) Parent Spouse/significant other Other Race (%) White African American Hispanic Other Marital status (%) Married/cohabitating Not married Annual income (%) ⬍$10,000 $10,001–$20,000 $20,001–$50,000 ⬎$50,000
44 (37, 52) 12 (12, 14) 79 52 39 9 75 13 11 1 78 22 11 12 44 33
behavior problems, academic performance, and cognitive functioning after TBI in children.26,27 Characterization of the preinjury family environment in adults with TBI could lead to similar prediction studies. To allow for comparisons with studies investigating postinjury caregiver adjustment, we used a multidimensional approach to characterizing the preinjury family environment. The measures used assessed caregivers’ emotional distress and family systems functioning in the month before injury, as well as history of medical illness, psychiatric or psychologic treatment, and substance abuse. Because research has indicated that persons from minority backgrounds and persons of low socioeconomic status are more vulnerable to the effects of accumulated stressors on mental health,28 the effect of race and income on preinjury distress and family functioning were also investigated. METHODS Participants Participants were 197 caregivers of persons with TBI who were consecutively admitted to 1 of 3 participating comprehensive inpatient rehabilitation facilities between February 1999 and July 2001. The facilities were funded by the National Institute on Disability and Rehabilitation Research as Traumatic Brain Injury Model Systems. Criteria for enrollment in the Model Systems study included medically documented TBI; treatment at the emergency center of a level I trauma center within 24 hours of injury; receipt of inpatient rehabilitation within the Model Systems; age of at least 16 at the time of injury; and provision of informed consent by the person with injury or a legal proxy. Caregivers of the person with injury were recruited for the current study if they were at least 18 years of age and able to provide informed consent and if they identified themselves as the primary person responsible for the care of the person with injury. Demographic characteristics for the caregivers are shown in table 1. The majority of caregivers were white women, above the age of 40, with a high school education. Regarding the relationship to the person with injury, the majority were parents, with slightly over one third being spouses. Over half of the caregivers were employed at the time of injury, and approximately
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one third had a yearly household income exceeding $50,000. The majority of caregivers were caring for young persons (median age, 30y; 25th percentile⫽20y; 75th percentile⫽43y). Injury severity was characterized by the Glasgow Coma Scale (GCS) score at the time of admission to the emergency department. Consistent with the criteria for injury severity set forth by Teasdale and Jennett,29 persons with GCS scores of 8 or lower were classified as having experienced severe TBI. Persons with GCS scores of 9 or greater were classified as having experienced mild to moderate injury. All persons with mild injury in our study were those who experienced neurologic complications severe enough to necessitate inpatient rehabilitation. Over 67% were caring for persons with severe injury based on the GCS29 score on admission to the emergency department. The remainder cared for persons with moderate or complicated mild injury. Seventy-two percent of caregivers reported living with the person for whom they cared before injury. Measures The following self-report questionnaires were administered to caregivers. Brief Symptom Inventory. The BSI30 is a 53-item questionnaire that asks individuals to rate the extent to which they have experienced symptoms during the past month. Items are rated on a scale ranging from 0 (not at all) to 4 (extremely). The BSI yields 3 global distress indices and 9 clinical subscales that reflect different categories of emotional distress: depression, anxiety, somatization, hostility, obsessive-compulsive, interpersonal sensitivity, phobic anxiety, paranoid ideation, and psychoticism. Raw scores on each scale are converted to T scores that are corrected for gender. Based on normative data, cutoff scores are provided for classifying a person’s pattern of responses as indicative of caseness (ie, likely to receive a clinical psychiatric diagnosis). Responses are considered to represent caseness if the person obtains a T score ⱖ63 on the Global Severity Index or if they obtain a T score ⱖ63 on 2 or more individual subscales. Adequate internal reliability and good convergent and construct validity have been shown.30 Normative data and cutoff scores for abnormal functioning are available. The BSI has shown sensitivity to the types of difficulties experienced by family members after TBI.10,17 Assessment Device. The FAD31,32 is a 60-item self-report questionnaire that assesses multiple aspects of family functioning, including roles, communication, and quality of relationships. Factor analysis has confirmed the presence of 6 scales: problem solving, roles, communication, affective responsiveness, affective involvement, and behavior control. Additionally, a General Functioning Scale (GFS) score is obtained, representing all dimensions of family functioning. Scores on each scale range from 1 to 4, with higher scores representing more unhealthy functioning. The researchers have provided normative data and cutoff scores to classify unhealthy functioning. The cutoff scores range from 1.9 to 2.2, depending on the scale. Previous research10 has shown the validity of the FAD for use with family members of persons with TBI. For our study, preinjury family functioning was classified as either healthy or unhealthy based on whether caregivers’ scores exceeded the cutoff scores provided in the FAD manual.17,33 Multidimensional Scale of Perceived Social Support. The Multidimensional Scale of Perceived Social Support34 (MSPSS) was designed to assess persons’ satisfaction with perceived social support systems. The scale consists of 12 items assessing satisfaction with support from family members, friends, and a spouse or significant other. Respondents rate each item on a scale of 1 (very strongly disagree) to 7 (very
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strongly agree). The results of factor-analytic procedures have shown 3 distinct factors corresponding to perceived support from friends, family, and a significant other. Good internal consistency has been shown by the Cronbach ␣ coefficients, ranging from .85 to .94 for the total and scale scores. Concurrent validity has been shown by significant correlations between the MSPSS and the Social Support Behaviors Scale, another scale of perceived social support.35 For our study, average scale scores of 1 to 3 were classified as dissatisfied, whereas average scores of 5 to 7 were classified as satisfied. In addition to the self-report questionnaires, caregivers were administered a structured interview regarding functioning before injury. The following measures were obtained during this interview. History of medical illness. Caregivers were asked if they had ever experienced a serious medical illness. History of psychologic difficulties and psychiatric illness. Caregivers were asked if they had ever experienced a psychologic difficulty requiring treatment. Treatment was categorized as either inpatient psychiatric care; outpatient treatment by a psychiatrist, psychologist, or counselor; or having been prescribed psychotropic medications by a general physician. History of alcohol and drug abuse. Caregivers were asked about their use of alcohol and drugs, and the examiner assessed whether alcohol and/or drug use met Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) criteria for substance abuse. Impact of race and income. The race of caregivers was coded as a dichotomous variable: white and nonwhite. Annual income was coded into 4 categories: ⬍$10,000, $10,001 to $20,000, $20,001 to $50,000, and ⬎$50,000. In addition to the caregiver measures, information on the age, gender, and injury severity of the person with injury was obtained from the medical records. Procedure The study procedures, including informed consent, were approved by the institutional review boards at each of the 3 participating centers. Caregivers were recruited for the study within 2 weeks of their family member’s admission to 1 of the 3 participating inpatient rehabilitation units. Once informed consent was obtained, a trained examiner administered the structured interview and the self-report questionnaires. The examiners were research assistants with bachelor’s degrees in psychology or a related field. Interviews at all centers were conducted according to a research syllabus that was prepared by the principal investigator. The principal investigator also conducted training sessions for the research staff at all 3 centers. For the BSI, FAD, and MSPSS, caregivers were instructed to complete the questionnaires regarding their functioning in the month before injury. The examiner remained with them during completion of the questionnaires and reminded them when beginning each one that they should respond to questions based on functioning during the month before injury. As a further assurance that caregivers would be able to recall functioning in the month before injury, responses were excluded from the current analyses if the time between injury and completion of the questionnaires was greater than 3 months. Six persons were excluded from analysis for this reason, yielding the final sample size of 191. The average number of days ⫾ standard deviation between injury and completion of the questionnaires was 36⫾18 days, with a median of 33 (25th percentile⫽21d, 75th percentile⫽47d). Because caregivers were asked to provide retrospective estimates of their functioning before injury, the possibility existed that their perceptions would be biased by the injury or that Arch Phys Med Rehabil Vol 84, February 2003
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they would find it difficult to distinguish between their preinjury and postinjury functioning. One way to test for this possibility is to assess whether their estimates differed by injury severity. If estimates of preinjury functioning were biased by the injury, then it could be anticipated that caregivers of persons with more severe injury would experience greater postinjury distress. Their postinjury distress could bias their ratings of preinjury functioning, possibly leading them to over- or underestimate their preinjury distress. This method of assessing for bias in caregivers’ estimates of preinjury functioning has been used in research after pediatric TBI.27 In our study, data on injury severity, as assessed by GCS scores on admission to the emergency department, were available for 88% of the sample. Chi-square analyses were conducted to determine differences between caregivers of persons with severe injury (GCS score ⱕ8) and moderate and complicated mild injury with regard to the percentage classified as caseness on the BSI and the percentage classified as having unhealthy family functioning on the FAD GFS. There was no difference between the injury severity groups for either the BSI or the FAD. Thus, it was concluded that caregivers’ estimates of emotional distress and family functioning in the month before injury were unlikely to be biased by the injury itself. Based on interview data, caregivers were coded as having a history of medical illness, psychiatric illness, or substance abuse if they had ever experienced such problems in the past. The rationale here was that any history of serious medical or psychiatric difficulties could render caregivers more vulnerable to difficulties after injury. RESULTS Findings Preinjury emotional distress. Thirty-seven percent of caregivers indicated symptoms of emotional distress on the BSI that would be consistent with a probable psychiatric diagnosis. Preinjury family functioning. The percentages of caregivers reporting unhealthy family functioning on each of the FAD subscales and the GFS are shown in figure 1. Between 25% and 33% of caregivers reported unhealthy functioning on 1 or more of the FAD scales. Preinjury satisfaction with social support. The majority of caregivers (92%) reported overall satisfaction with the social support they received in the month prior to injury, with only 2% reporting dissatisfaction. Satisfaction rates were equivalent for support from significant others (93%), family (89%), and friends (87%).
Fig 1. Family functioning in the month before injury.
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Table 2: Most Frequently Reported Preinjury Medical and Psychologic Difficulties % of Family Members Reporting (n)
Medical Illness (n⫽189) Hypertension Cancer Diabetes Migraines Psychiatric illness and psychologic difficulties (n⫽188) Prescribed antidepressant medication Prescribed antianxiety medication Outpatient counseling for family and relationship issues Prescribed medication for sleep disturbance Depression (treated as inpatient or outpatient)
32 (58) 24 (14)* 14 (8) 12 (7) 7 (4) 27 (52) 29 (15) 17 (9) 13 (7) 11 (6) 10 (5)
* Percentages that are not in bold are based on dividing by the total number of persons who endorsed preinjury medical or psychiatric illness.
History of medical illness. Thirty-two percent of family members reported that they had experienced a serious medical illness in the past. Table 2 shows the most frequent types of medical illness experienced. History of psychologic difficulties and psychiatric illness. Twenty-seven percent of the sample reported a history of psychologic or psychiatric problems. Of this 27%, 2% had received inpatient treatment, 8% had received outpatient treatment, and 17% had been treated by a prescription from their general physician for psychotropic medication. Table 2 shows the most common types of treatment obtained by persons who reported preinjury psychologic difficulties. The majority had received psychotropic medication as the primary treatment. History of substance abuse. The rate of preinjury substance abuse in caregivers was extremely low. Two persons met DSM-IV criteria for substance abuse but had not received treatment. One person had undergone treatment for alcoholism. Impact of race and income. Chi-square analyses were conducted to determine differences in the percentage of persons classified as caseness on the BSI by race and income. When differences were significant, the Cramer V statistic was used to assess the strength of association. Similar analyses were conducted for the FAD GFS. A greater percentage of nonwhite caregivers reported unhealthy family functioning in the month before injury (21⫽5.32, P⫽.02; Cramer V⫽.17). There was a trend for a higher percentage of nonwhite caregivers to meet the criteria for caseness on the BSI for the month before injury (21⫽3.32, P⫽.07). However, chi-square analysis investigating differences in income group as a function of race revealed a higher percentage of persons in the lower 2 income categories for nonwhites as compared with whites (23⫽12.33, P⫽.006; Cramer V⫽.25). To assess the impact of race independent of income, logistic regression was performed with race and income regressed onto FAD GFS classifications (healthy, unhealthy) and onto BSI caseness classifications (case, noncase). After controlling for income, race did not contribute significantly to the variance in caregivers’ family functioning or emotional distress. Thus, it was concluded that racial differences in preinjury family functioning and emotional distress were a function of lower income in nonwhites.
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Fig 2. Preinjury emotional distress and family functioning by annual income.
The results for the BSI and FAD as a function of income are shown in figure 2. A greater percentage of persons earning less than $10,000 per year reported unhealthy family functioning, whereas most persons earning more than $50,000 per year reported healthy family functioning (23⫽11.83, P⫽.008; Cramer V⫽.25). A trend was noted for a greater percentage of persons in the lowest income category to report symptoms consistent with caseness on the BSI (23⫽6.78, P⫽.08). DISCUSSION Our results indicate that many caregivers experienced emotional distress and disruptions in family functioning during the month before injury. Over one third of the caregivers in our study reported experiencing symptoms consistent with those of psychiatric disorders in the month before injury, whereas 25% to 33% reported unhealthy family functioning in 1 or more areas. In addition, slightly over 25% of caregivers reported that they had received treatment for a psychologic or psychiatric problem in the past, and 33% had experienced a significant medical problem. Our findings are consistent with the findings of Gillen et al19 that a substantial proportion of caregivers report experiencing depression before injury. Gillen found that 41% of caregivers had experienced an episode of depression before injury. The fact that this percentage is higher than the percentage of caregivers reporting preinjury psychologic difficulties in our study is likely because of the fact that the Gillen sample was made up of persons who responded to an invitation, which may have led to a bias. In contrast, our study was conducted with a consecutive sample. Additionally, the means used to determine a preinjury episode of depression was not clearly defined in the Gillen study. Although they used DSM-IV criteria to diagnose postinjury depression, their method of assessing preinjury depression was not clear. Studies investigating the impact of TBI on caregivers’ functioning have indicated that between 25% and 50% of caregivers report substantial levels of emotional distress after injury.3,4,10 Furthermore, a substantial proportion of caregivers report disruptions in family systems functioning, increased social isolation, and use of alcohol and other substances.4,10,11 The percentages of persons reporting preinjury emotional distress and difficulties with family functioning are only slightly lower than the percentages of persons found to be experiencing postinjury difficulties in previous studies. It is noteworthy that in our sample caregivers reported good satisfaction with their social support before injury and very few caregivers reported a history consistent with substance abuse. The relatively greater reports of social isolation and substance use among caregivers
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in postinjury studies likely reflect the additional stress created by caring for a person with injury. The results should not be interpreted as indicating that the injury has no additional impact and that caregivers would be equally distressed whether they had to care for an injured person or not. It is clear that caregivers often experience increased stress after TBI that can result in a greater incidence or intensity of emotional distress. Personality change in the person with injury is a major cause of increased stress.18,36 Family members are particularly concerned about behavioral problems such as aggressive acting out.6 A potential cause of caregiver emotional distress that deserves additional investigation is impaired self-awareness. A number of studies have shown that persons with TBI rate themselves as having fewer and less severe impairments than do family members and significant others early in recovery and at late follow-up.37,38 Clinical observations indicate that these differences in perception contribute to interpersonal conflict between persons with injury and their caregivers. The poorer employment outcomes experienced by persons with impaired self-awareness38 may also contribute to caregiver burden by causing financial hardship. Unemployed persons are likely to spend more time in the company of caregivers, increasing the opportunity for interpersonal conflict. Although these injury-related changes can result in additional stress, it is likely that caregivers who have had medical or psychologic difficulties in the past will be more vulnerable to the impact of injury and will have greater difficulty coping. Indeed, environmental stressors have been shown to have a cumulative effect on mental health.28 The utility of preinjury functioning for predicting caregivers’ postinjury adjustment is a topic that should be investigated in future studies. We are currently collecting 1-year follow-up data for persons who have provided information on preinjury functioning, and we will be testing prediction models in the future. According to the recent US Surgeon General’s report on mental health,28 the prevalence of mental disorder at any one time in the United States is approximately 20%. The prevalence of depression in the adult population has been estimated at 10% to 20%.39 The rate of preinjury psychologic distress reported by caregivers in our study was slightly above these estimates. Although the use of self-report questionnaires, such as the BSI, to diagnose psychologic difficulties can be inaccurate, it is noteworthy that our results using BSI cutoff scores are only slightly higher than the results based on receipt of psychologic treatment. The slightly higher percentage of psychologic difficulties in our sample of caregivers compared with the US population-based statistics may be due to the fact that there is a bias in the type of person who experiences TBI. Persons with TBI are more likely to be from low socioeconomic backgrounds,22 have a greater history of alcohol and substance abuse,23 and have a higher incidence of preinjury arrests.40 These characteristics are likely to be associated with stress to family members. Indeed, lower income was associated with greater unhealthy family functioning in our study and showed a trend to be associated with emotional distress. Our study is among the first to document preinjury family functioning in a prospective cohort of caregivers. However, limitations should be taken into consideration when interpreting results. First, our results are generalizable only to caregivers of persons who participated in inpatient rehabilitation. Owing to the use of an inpatient rehabilitation sample, the majority of caregivers were white, well educated, and had an annual income above $20,000. The results may not be generalizable to caregivers of persons seen at county hospitals, who often do not have the insurance coverage necessary to receive Arch Phys Med Rehabil Vol 84, February 2003
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inpatient rehabilitation. This includes many persons with TBI who are less educated, from a lower socioeconomic status, and from a minority background. Given that these factors have been documented as risk factors for depression in the general population, higher rates of preinjury distress and/or unhealthy family functioning may be found if the study were conducted with a different population. A second limitation corresponds to the criteria for diagnosing psychologic distress in our study. A self-report measure and questions regarding past treatment were used as indications of previous psychologic and psychiatric problems. The use of self-report questionnaires is always subject to response bias. Although use of treatment data may be more likely to rule out false-positives, it may result in falsenegatives because many people experiencing psychiatric symptoms do not seek treatment.28 Future studies could benefit from using structured diagnostic interviews, such as the Structured Clinical Interview for DSM-IV Axis I Disorders. A further limitation relates to the retrospective estimates of preinjury functioning provided by family members. Although precautions were taken to ensure that family members were reporting on family functioning and emotional distress before injury, it is not possible to know with certainty whether this goal was achieved. The fact that the report of preinjury functioning was not related to injury severity would seem to indicate that the reports were not biased by the injury. The results of our study indicate that a substantial percentage of caregivers have backgrounds that may decrease their ability to cope with injury-related stress. These results emphasize the need for targeted interventions. Conducting structured interviews with caregivers early in the rehabilitation process can help to identify those who may be relatively more vulnerable to stress. Such caregivers could be assigned to more intensive follow-along or case management to help prevent the exacerbation of stress. The development of cognitive-behavioral educational interventions to teach stress management and coping techniques may also be beneficial in lessening the impact of injury on emotional health and well-being. We are currently developing such an intervention and plan to evaluate its effectiveness empirically. CONCLUSION Our findings have implications for the recovery of persons with TBI. Family members, particularly primary caregivers, play an important role in recovery. Family members’ roles in the recovery process range from providing transportation for medical and rehabilitation appointments to helping generalize compensatory cognitive strategies to the home and community settings. Persons with TBI who have family environments characterized by distress and unhealthy interactions are likely to have less support and assistance with their recovery. Family members experiencing distress may also be less effective partners in the rehabilitation process. The utility of preinjury family functioning for predicting the outcome of persons with injury is a topic for future research. References 1. Sander AM, Kreutzer J. A holistic approach to family assessment after brain injury. In: Rosenthal M, Griffith ER, Kreutzer J, Pentland B, editors. Rehabilitation of the adult and child with traumatic brain injury. 3rd ed. Philadelphia: FA Davis; 1999. p 199-215. 2. McKinlay WW, Brooks DN, Bond MR, Martinage DP, Marshall MM. The short-term outcome of severe blunt head injury as reported by relatives of the injured persons. J Neurol Neurosurg Psychiatry 1981;44:527-33. Arch Phys Med Rehabil Vol 84, February 2003
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