Article

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.
CI - Copyright (c) 2015 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS