Caregiver Resilience Through the First 2 Years After Traumatic Brain Injury: A Traumatic Brain Injury Model Systems Study.

Abstract

Objective: To examine: (1) the trajectory of caregiver resilience over 2 years after onset of a care-recipient's moderate-to-severe traumatic brain injury (TBI), (2) caregiver-related outcomes associated with resilience, and (3) changes in associations between caregiver resilience, other caregiver characteristics, and care-recipient variables across time.

Design: Prospective cohort.

Setting: TBI Model System (TBIMS) centers.

Participants: TBIMS participants (care-recipients) were approached to enroll in this study and identify a caregiver. Two hundred fifty-eight (N=258) care-recipient and caregiver dyads were enrolled.

Interventions: Not applicable.

Main outcome measures: Caregiver data included demographics, health history, Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7, Zarit Burden Interview (ZBI), Family Needs Questionnaire-Revised, and Connor-Davidson Resilience Scale 10 (CD-RISC-10). All caregiver data were self-reported via phone interview or mailed surveys at 6, 12, and 24 months after injury. At all 3 timepoints, care-recipients with TBI also completed their own CD-RISC-10, PHQ-9, Generalized Anxiety Disorder-7, and Disability Rating Scale.

Results: Linear mixed-effects models indicated that the trajectory of resilience was stable within caregivers over 2 years after injury. There were significant, positive associations for all caregiver Family Needs Questionnaire-Revised subscales (all P<.001) with care-recipient and caregiver CD-RISC-10 scores (P=.001), indicating that more caregiving needs endorsed as "met" corresponded with higher resilience. Caregiver PHQ-9 and ZBI scores were found to be negatively associated with resilience (both P<.001). When all covariates were included in the multivariable model, met emotional needs was positively associated with caregiver resilience (P<.0001). Negative associations with caregiver resilience included higher caregiver PHQ-9 scores (P=.001) and perceptions of caregiving burden (P=.003).

Conclusions: Caregiver levels of resilience were generally stable over 2 years post-TBI. Caregivers' resilience was positively associated with perceptions of their needs being met and negatively associated with caregiving burden and emotional distress. Further research is needed to develop and evaluate the utility and feasibility of interventions to enhance resilience, meet family needs, and improve long-term outcomes after brain injury.