Health-Related Quality of Life in Caregivers of Individuals with Traumatic Brain Injury: Development of a Conceptual Model

Arch Phys Med Rehabil, 2015 · DOI: 10.1016/j.apmr.2014.08.021 · Published: January 1, 2015

Participation Social Support Brain Injury

Simple Explanation

This study explores the impact of caring for individuals with traumatic brain injury (TBI) on the health-related quality of life (HRQOL) of their caregivers. Focus groups were conducted with caregivers to identify key areas of concern and develop a conceptual framework for understanding their HRQOL. The research aims to lay the groundwork for a new measurement system (TBI-CareQOL) that can appropriately assess the HRQOL of caregivers of individuals with TBI.

Study Duration

Not specified

Participants

55 caregivers of individuals with moderate-to-severe TBI

Evidence Level

Qualitative study

Key Findings

1
Caregivers' social health was the most frequently identified area of concern, encompassing community life, role changes, and finances.
2
Emotional health was another major area, with caregivers expressing concerns about anxiety, depression, and feelings of being trapped.
3
Feelings of loss, both related to the person with TBI and the caregivers' own lives, emerged as a unique concern not fully captured by existing measures.

Research Summary

This study aimed to identify aspects of HRQOL relevant to caregivers of individuals with TBI and propose an integrated conceptual framework. Nine focus groups with caregivers of individuals with moderate-to-severe TBI were qualitatively analyzed to ascertain the effect of caregiving on HRQOL. The study concludes that while existing PROs capture relevant aspects of HRQOL, some domains are not addressed, highlighting the need for a validated tool for this population.

Practical Implications

Development of TBI-CareQOL

The conceptual model developed in this study will guide item development for the TBI-CareQOL, a caregiver-specific PRO instrument.

Improved Clinical Care

Caregiver-specific measures can be used to help improve clinical care and ultimately HRQOL for this underserved population, and should also improve the HRQOL for the individual with the TBI.

Targeted Interventions

A better understanding of caregiver HRQOL provides valuable insight in developing and evaluating clinical interventions aimed at improving the HRQOL of caregivers of individuals with moderate-to-severe TBI.

Study Limitations

1
The study did not control for interviewer bias.
2
The majority of caregivers had been in their role for an average of 6 years, potentially not capturing the complexity of the initial transitional phase.
3
The sample was primarily female and Caucasian, limiting extrapolation to other demographics.

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