Citation

Carlozzi NE, Kratz AL, Sander A, Chiaravalloti ND, Brickell TA, Lange R, Hahn EA, Austin A, Miner JA, Tulsky DS. Arch. Phys. Med. Rehabil. 2014; 96(1): 105-113.

Affiliation

Rusk Institute/Department of Rehabilitation Medicine, Department of Orthopedic Surgery, Department of General Medicine, New York University, New York, New York; Spinal Cord Injury Laboratory, Neuropsychology and Neuroscience Laboratory, Kessler Foundation, New Jersey.

Copyright

(Copyright © 2014, Elsevier Publishing)

DOI

10.1016/j.apmr.2014.08.021

PMID

25239281

Abstract

OBJECTIVE: To identify aspects of health-related quality of life (HRQOL) that are relevant to caregivers of individuals with traumatic brain injury (TBI) and propose an integrated conceptual framework based on this information.

DESIGN: Nine focus groups with caregivers of individuals with moderate-to-severe TBI were qualitatively analyzed to ascertain the effect that caring for an individual with a TBI has on caregiver HRQOL. SETTING: Focus groups were conducted at three rehabilitation centers across the United States (Michigan, New Jersey, and Texas). PARTICIPANTS: 55 caregivers of individuals with moderate-to-severe TBI INTERVENTIONS: Not Applicable. MAIN OUTCOME MEASURES: Not Applicable.

RESULTS: Qualitative analysis indicated that caregivers were most concerned about their social health (42% of comments); other important issues were emotional health (34%), physical health (11%), cognitive health (3%), and feelings of loss (9%; feelings of loss related to changes in the future/potential of the care recipient or related to the caregiver). Areas of concern that were discussed that were specific to the caregiver and not fully evaluated by existing patient-reported outcomes (PROs) included feelings of loss, anxiety related to the caregiver role (reinjury concerns, worry about leaving the person alone, etc.), and caregiver strain (burden, stress, feeling overwhelmed, etc.).

CONCLUSION: Although existing PROs capture relevant aspects of HRQOL for caregivers, there are HRQOL domains that are not addressed. A validated and sensitive HRQOL tool for caregivers of individuals with TBI will facilitate initiatives to improve outcomes in this underserved group.

Language: en