Caregivers' well-being after traumatic brain injury: a multicenter prospective investigation.

OBJECTIVE

To describe frequency and magnitude of caregivers' emotional distress and life satisfaction using standardized assessment procedures; compare distress levels among spouses, parents, and other caregivers; and identify risk factors.

DESIGN

Prospective collaborative cohort study.

SETTING

Six Traumatic Brain Injury Model System Centers providing neurotrauma care, rehabilitation, and outpatient follow-up.

PARTICIPANTS

Caregivers (N=273) of patients who were 1, 2, or 5 years postinjury.

INTERVENTIONS

Acute neurotrauma care, inpatient interdisciplinary brain injury rehabilitation, and postacute services.

MAIN OUTCOME MEASURE

Brief Symptom Inventory-18 Depression, Anxiety, and Somatic dimensions.

RESULTS

Levels of Depression, Anxiety, and Somatic symptoms were equally prevalent, with 1 in 5 caregivers scoring above the cutoff in each area. The proportion of participants with 1, 2, and 3 elevations was 17.9%, 5.5%, and 10.6%, respectively. Conversely, approximately two thirds (65.9%) had no scores exceeding cutoffs. Distress levels among spouses, parents, and other caregivers were comparable. Higher caregiver distress was associated with caring for survivors who had worse functional status, received more supervision, were less satisfied with life, and used alcohol excessively.

CONCLUSIONS

Depression, Anxiety, and Somatic symptoms are common among caregivers. Findings substantiate the importance of clinical care systems addressing the needs of caregivers in the long term as well as survivors.