Original research
The Impact of Stigma on Community Reintegration of Veterans With Traumatic Brain Injury and the Well-Being of Their Caregivers

https://doi.org/10.1016/j.apmr.2018.04.007Get rights and content

Abstract

Objective

To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration.

Design

A cross-sectional survey study of 564 informal caregivers of U.S. military service veterans of wars in Iraq and Afghanistan who experienced traumatic brain injuries or polytrauma (TBI/PT).

Setting

Care settings of community-dwelling former inpatients of U.S. Department of Veterans Affairs Polytrauma Rehabilitation Centers.

Participants

Caregivers of former inpatients (N=564), identified through next-of-kin records and subsequent nominations.

Interventions

Not applicable.

Main Outcome Measures

Caregiver strain, depression, anxiety, loneliness, and self-esteem; as well as care recipient community reintegration, a key aspect of TBI/PT rehabilitation.

Results

Family stigma was associated with strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. Caregiver stigma-by-association was associated with strain, depression, anxiety, loneliness, and lower self-esteem. Care recipient stigma was associated with caregiver strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration.

Conclusions

Perceived stigma may be a substantial source of stress for caregivers of U.S. military veterans with TBI/PT, and may contribute to poor outcomes for the health of caregivers and for the community reintegration of the veterans for whom they provide care.

Section snippets

Participants

We conducted the study at 4 of the 5 VA Polytrauma Rehabilitation Centers: the Minneapolis VA Medical Center, Minneapolis, Minnesota; the James A. Haley VA Medical Center, Tampa, Florida; the VA Palo Alto Health Care System, Palo Alto, California; and the McGuire VA Medical Center, Richmond, Virginia. (A fifth PRC site, in the South Texas Veterans Health Care System, San Antonio, Texas, opened in 2011, but we did not use it for this study.) We used data from the VA’s 2009 Family and Caregiver

Methods

The study was approved by institutional review boards of the PRCs and their affiliated universities. We conducted the study for 6 months in 2009. We mailed the initial survey to the care recipient’s next-of-kin, who could suggest somebody else to take the survey who might better fit the definition of primary caregiver. Detailed survey procedures were previously published.2

We contacted potential participants (N=1045) via multiple mailings of the study survey and by telephone calls. Of those the

Results

Table 1 provides a breakdown of sample characteristics and characteristics of care recipients. The sample was mostly female (79%), white (81%), married or living with a partner (77%), and a parent of the care recipient (62%), and nearly a third of participants were providing care for their spouse. Half of the sample was between the ages of 45 and 59, and nearly half had some college or trade school education.

Table 2 provides descriptive statistics for key stigma variables. The mean scores for

Discussion

Among informal caregivers of individuals with TBI/PT, a large proportion of caregivers in this sample experienced caregiver stigma-by-association, care recipient stigma, and family stigma. These experiences were significantly associated with increased caregiver strain and worse emotional well-being, factors shown to contribute to excess mortality in caregivers.32 Care recipient stigma and family stigma were significantly associated with less care recipient community reintegration.

Informal

Conclusions

This study suggests that stigma is an important stressor for a large proportion of caregivers of individuals with TBI/PT, and may contribute to poor outcomes for both individuals with TBI/PT and their caregivers. Research to better understand ways to support caregivers and eliminate stigma or improve the coping ability of caregivers may lead to improvements in caregiver emotional well-being and care recipient community integration.

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    Supported by the U.S. Department of Veterans Affairs, Veterans Health Administration, Office of Research and Development, and a grant from the Health Services Research and Development Service (U.S. Department of Veteran Affairs) (grant no. SDR-07-044). The findings and conclusions presented in this manuscript are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs or the Health Services Research and Development Service. The sponsor was not involved in any aspect of the study’s design and conduct; data collection, management, analysis, or interpretation of data; or preparation, review, or approval of the manuscript.

    All study procedures were approved by the Institutional Review Board of the respective Veterans Affairs Polytrauma Rehabilitation Centers and their affiliated universities.

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