Abstract
Objectives
To identify aspects of health-related quality of life (HRQOL) that are relevant to
caregivers of individuals with traumatic brain injury (TBI) and to 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
University hospitals and rehabilitation treatment centers.
Participants
Caregivers (N=55) 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).
Conclusions
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.
Keywords
List of abbreviations:
HRQOL (health-related quality of life), PRO (patient-reported outcome), PROMIS (Patient Reported Outcomes Measurement Information System), TBI (traumatic brain injury)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: September 17, 2014
Footnotes
Supported by the National Institutes of Health (grant no. 05R01NR013658).
The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, the official policy of the Department of Defense, the official views of the Department of Veterans' Affairs, or the official views of the U.S. Government.
Disclosures: none.
Identification
Copyright
© 2015 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
