Person looking away from someone speaking to them

What is the study about?

The purpose of this study was to describe the characteristics and concerns of caregivers of adults with traumatic brain injury (TBI) over the first few months after discharge of the TBI survivor into the community.

What did the study find?

This study found that caregivers of TBI survivors had many concerns, which fell into 6 general categories: (1) participation; (2) medical, rehabilitation, health, and physical; (3) emotional and behavioral; (4) cognitive and communication; (5) relationships; and (6) other. Respondents identified their concerns about managing the survivor’s emotional and behavioral issues. However, many caregivers (more than 30%) also reported issues related to their own needs, including concerns about their own emotional adjustment, ability to get things done, and participation in healthful habits such as exercise. These results suggest that caregivers are concerned with balancing their own needs with the new, and often challenging, responsibility of caring for someone with TBI.

Who participated in the study?

This study consisted of 153 caregivers of survivors of moderate to severe TBI. Participants were recruited in the acute neurosurgery floors and inpatient rehabilitation unit of a Level 1 trauma center.

How was the study conducted?

This study used secondary data collected from a randomized controlled trial investigating a telephone-based individualized intervention for caregivers of adults with TBI. The present study examined the demographic characteristics of caregivers, the characteristics of caregiver-survivor relationships, caregiver resource use, and caregiver activity changes. Of the 153 caregiver-survivor pairs, 77 were randomly placed in the intervention group while 76 were placed in the usual care group. Of the 77 participants in the intervention group, 71 caregivers participated in at least one call in which one of their expressed concerns was targeted and addressed. Eighty percent were followed up at 6 months.

How can people use the results?

Clinicians can use the results of this study to better understand and address the concerns of caregivers of adults with TBI. Caregivers of adults with TBI, especially new caregivers, can use the results to learn about common concerns associated with caring for someone with TBI.


Powell, Janet M. PhD, OT; Wise, Elizabeth K. MOT; Brockway, Jo Ann PhD; Fraser, Robert PhD; Temkin, Nancy PhD; Bell, Kathleen R. MD (2017). Characteristics and Concerns of Caregivers of Adults With Traumatic Brain Injury. Journal of Head Trauma Rehabilitation, 32(1), 33-41. Retrieved from

The contents of this quick review were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DP0082). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this quick review do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.