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Characteristics and Concerns of Caregivers of Adults With Traumatic Brain Injury

Powell, Janet M. PhD, OT; Wise, Elizabeth K. MOT; Brockway, Jo Ann PhD; Fraser, Robert PhD; Temkin, Nancy PhD; Bell, Kathleen R. MD

The Journal of Head Trauma Rehabilitation: January/February 2017 - Volume 32 - Issue 1 - p E33–E41
doi: 10.1097/HTR.0000000000000219
Focus on Clinical Research and Practice

Objective: To describe the characteristics of caregivers of adults with traumatic brain injury (TBI) and their concerns in the first months after community discharge of the TBI survivor.

Design: Secondary analysis of data collected during a parallel-group randomized controlled trial.

Setting: Community.

Participants: A total of 153 consecutively enrolled caregivers of adults with moderate to severe TBI discharged to the community following acute and/or rehabilitation care at a Level I trauma center with 71 caregivers in the treatment group identifying concerns as part of the intervention procedures.

Main Measures: Caregiver demographics, caregiver-survivor relationship characteristics, caregiver activity changes, and concerns targeted by caregivers for education and problem-solving via biweekly phone calls.

Results: Thirty-nine percent of caregivers were spouses and 35% parents. Sixty-five percent lived in the same house as the survivor preinjury with 86% in touch daily to several times per week. Concerns targeted by more than one-third of caregivers related to managing their emotional adjustment, strategies for getting things done, managing survivor emotions and behaviors, and engaging in healthful habits.

Conclusions: Caregivers of TBI survivors targeted personal concerns relating to their own emotional adjustment and participation as well as concerns relating to symptoms and recovery of the TBI survivor to address through education and problem-solving.

Department of Rehabilitation Medicine, Division of Occupational Therapy (Dr Powell), Department of Rehabilitation Medicine (Dr Brockway), Departments of Rehabilitation Medicine, Neurology, and Neurological Surgery (Dr Fraser), and Departments of Neurological Surgery and Biostatistics, (Dr Temkin), University of Washington, Seattle; Bonner General Health, Sandpoint, ID (Ms Wise); and Department of Physical Medicine and Rehabilitation, University of Texas Southwestern, Dallas (Dr Bell).

Corresponding Author: Janet M. Powell, PhD, OTR/L, FAOTA, Department of Rehabilitation Medicine, Division of Occupational Therapy, University of Washington, Box 356490, Seattle, WA 98195 (

We thank Kimberly Glorieux, study coordinator; Heather Porter, MSW, study interventionist; and Hye Kyong Jeong, caregiver consultant, for their contributions to the planning and implementation of this study.

This study was funded by the Department of Education, National Institute on Disability and Rehabilitation Research, TBI Model Systems: University of Washington Traumatic Brain Injury Model System H133A070032.

Clinical trial registration number: NCT00692575

The authors declare no conflicts of interest.

Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.