INTRODUCTION Emotional distress and sense of burden are experienced by many caregivers of persons with traumatic brain

1. Physical Medicine and Rehabilitation Model 1: Predictors of Caregiver Burden • INTRODUCTION • Emotional distress and sense of burden are • experienced by many caregivers of persons • with traumatic brain injury (TBI).1-8 • Predicting which caregivers will experience • distress is critical for developing empirically- • based interventions. • Researchers have examined injury-related • variables and caregiver demographics to • predict caregivers’ adjustment following TBI. • Injury severity appears to be related to caregiver • distress at 3 to 6 months post-injury, but not at • longer follow-up intervals.4, 9-12 • Changes in emotional and social functioning in • injured persons are strongly related to • caregivers’ perceived stress and emotional • functioning.4, 8-10, 13-17 • Caregiver demographics: relationship to the • injured person has been studied most • frequently. Findings have been mixed. • Coping styles18-19 and social support17, 20, 21 • appear to moderate the impact of injury on • caregiver perceived burden and distress. • Many caregivers have pre-existing difficulties • that may predispose them to greater distress • following injury, including emotional distress • and significant medical illnesses.4, 22 These • variables have the potential to help identify • caregivers at risk for developing greater • distress after injury. • PURPOSE • The contribution of pre-injury • medical and psychiatric histories to caregiver • outcome, above and beyond what can be • predicted by other variables, has remained • unexplored. • Our goal was to examine the relationship of pre- • injury caregiver medical and psychiatric • histories to perceived burden and emotional • distress among caregivers of persons with TBI. • METHOD • Participants • Sample consisted of 114 caregivers of persons • with medically documented complicated • mild/moderate (35%) or severe (65%) injury, • admitted to 1 of 3 participating centers. • Of 217 caregivers with baseline data, 114 had • follow-up data at 1 year post-injury. • Caregivers lost to follow-up did not differ from • those with follow-up data with regard to • demographics, medical or psychiatric history, • or severity of the person with injury. • Measures • Brief Symptom Inventory (BSI)24: 53 items • yield 3 global distress indices. Global • Severity Index scores were used as an • outcome measure of caregiver distress. • Modified Caregiver Appraisal Scale (MCAS)25,26: • used for caregivers of persons with TBI. • Perceived Burden Scale scores were used as • an outcome measure of perceived burden. • Ways of Coping Questionnaire (WOCQ)27: used • to identify frequently used coping strategies. • Escape-Avoidance and Positive Reappraisal • subscales were used as predictor variables. • Multidimensional Scale of Perceived Social • Support (MSPSS)28: assesses satisfaction with • perceived social support. The total score was • used as a predictor variable. • Disability Rating Scale (DRS)29: rates level of • functional ability in 8 areas. The total score • was used as a predictor variable. • Procedure • Caregivers’ demographics, medical history, • and psychiatric history were obtained • through structured interview. • Caregivers completed the BSI, MCAS, WOCQ, • and MSPSS at approximately 1 year post- • injury. A trained examiner rated the injured • person on the DRS at the same time interval. • Two multiple linear regression models were • constructed, one to predict caregiver • perceived burden and one to predict • caregiver distress. The models were identical • except for the outcome variables. • DISCUSSION • Perceived Burden • Poorer functional status of persons with injury was • associated with greater sense of burden among caregivers. • Increased perceived social support was related to • decreased sense of burden. • Increased use of Escape-Avoidance was associated with • elevated caregiver burden. • Global Distress • Caregivers with reported histories of significant illness(es) • reported higher levels of distress. • Similarly, caregivers with histories of treatment for • psychological problems reported higher levels of distress. • Increased use of Escape-Avoidance was associated with • elevated distress. • CONCLUSIONS • After accounting for the functioning of the person with • injury and caregiver demographics, pre-injury medical and • psychiatric history contributed significantly to overall level • of caregiver distress. • This suggests that caregiver distress after TBI is not only • associated with injury-related variables, but also appears • related to pre-existing characteristics of caregivers. • Since medical and psychiatric data are readily identifiable • at the time of injury, early intervention is possible for • caregivers at risk for elevated emotional distress. • This relationship was not obtained with respect to • caregiver burden. This is likely a function of the inherent • differences between the two outcome measures. The BSI • Global Severity Index is a general measure of distress that • may not necessarily be related to the role of caring for • the injured person. In contrast, the Perceived Burden Scale • of the MCAS assesses caregivers’ perceptions of stress • directly associated with the caregiving role. • The relationship between emotion-focused coping • (Escape-Avoidance) and caregiver distress and burden is • consistent with previous research. • Primary limitations: accuracy issues with respect to self- • reported medical and psychiatric history data; only single • measures of caregiver burden and overall emotional • distress were used. Medical and Psychosocial Predictors of Caregiver Functioning After Traumatic Brain InjuryLynne C. Davis, Ph.D., Angelle M. Sander, Ph.D.,Margaret A. Struchen, Ph.D.,Mark Sherer,Ph.D., Risa Nakase-Richardson, Ph.D.,& James F. Malec, Ph.D. RESULTS Model 1: Predictors of Perceived Burden Model 2: Predictors of Global Distress *References available on handout