Advertisement
Original research| Volume 99, ISSUE 11, P2222-2229, November 2018

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

      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.

      Keywords

      List of abbreviations:

      ADLs (activities of daily living), IADLs (instrumental activities of daily living), PRC (Polytrauma Rehabilitation Center), PT (polytrauma), TBI (traumatic brain injuries), VA (Veterans Affairs)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Archives of Physical Medicine and Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Tanielian T.
        • Jaycox L.
        Invisible wounds of war.
        RAND Corporation, 2008
        • Griffin J.M.
        • Friedemann-Sanchez G.
        • Jensen A.C.
        • et al.
        The invisible side of war: families caring for U.S. service members with traumatic brain injuries and polytrauma.
        J Head Trauma Rehabil. 2012; 27: 3-13
        • Van Houtven C.H.
        • Friedemann-Sánchez G.
        • Clothier B.
        • et al.
        Is policy well-targeted to remedy financial strain among caregivers of severely injured U.S. service members?.
        Inquiry. 2012; 49: 339-351
        • Griffin J.M.
        • Lee M.K.
        • Bangerter L.R.
        • et al.
        Burden and mental health among caregivers of veterans with traumatic brain injury/polytrauma.
        Am J Orthopsychiatry. 2017; 87: 139-148
        • Phelan S.M.
        • Griffin J.M.
        • Hellerstedt W.L.
        • et al.
        Perceived stigma, strain, and mental health among caregivers of veterans with traumatic brain injury.
        Disabil Health J. 2011; 4: 177-184
        • Phelan S.M.
        • Griffin J.M.
        • Jensen A.
        • et al.
        Does the severity of the neurobehavioral effects of traumatic brain injury affect caregiver perceptions of discrimination?.
        Disabil Health J. 2010; 3: e5
        • McLellan T.
        • Bishop A.
        • McKinlay A.
        Community attitudes toward individuals with traumatic brain injury.
        J Int Neuropsychol Soc. 2010; 16: 705-710
        • Neuberg S.
        • Smith D.
        • Hoffman J.
        • Russell F.
        When we observe stigmatized and “normal” individuals interacting: stigma by association.
        Pers Soc Psychol Bull. 1994; 20: 196-209
        • Pryor J.B.
        • Reeder G.D.
        • Monroe A.E.
        The infection of bad company: stigma by association.
        J Pers Soc Psychol. 2012; 102: 224-241
        • Corrigan P.W.
        • Miller F.E.
        Shame, blame, and contamination: a review of the impact of mental illness stigma on family members.
        J Ment Health. 2004; 13: 537-548
        • Corrigan P.W.
        • Watson A.C.
        • Miller F.E.
        Blame, shame, and contamination: the impact of mental illness and drug dependence stigma on family members.
        J Fam Psychol. 2006; 20: 239-246
        • Larson J.E.
        • Corrigan P.
        The stigma of families with mental illness.
        Acad Psychiatry. 2008; 32: 87-91
        • Phelan J.C.
        • Bromet E.J.
        • Link B.G.
        Psychiatric Illness and family stigma.
        Schizophr Bull. 1998; 24: 115-126
        • Skaff M.M.
        • Pearlin L.I.
        Caregiving: role engulfment and the loss of self.
        Gerontologist. 1992; 32: 656-664
        • Trudel T.M.
        • Nidiffer F.D.
        • Barth J.T.
        Community-integrated brain injury rehabilitation: treatment models and challenges for civilian, military, and veteran populations.
        J Rehabil Res Dev. 2007; 44: 1007-1016
        • Doyle M.
        • Peterson K.
        Re-entry and reintegration: returning home after combat.
        Psychiatr Q. 2005; 76: 361-370
        • Zarit S.H.
        • Reever K.E.
        • Bach-Peterson J.
        Relatives of the impaired elderly: correlates of feelings of burden.
        Gerontologist. 1980; 20: 649-655
        • Bedard M.
        • Molloy D.W.
        • Squire L.
        • Dubois S.
        • Lever J.A.
        • O’Donnell M.
        The Zarit Burden Interview: a new short version and screening version.
        Gerontologist. 2001; 41: 652-657
        • Siegert R.J.
        • Jackson D.M.
        • Tennant A.
        • Turner-Stokes L.
        Factor analysis and Rasch analysis of the Zarit Burden Interview for acquired brain injury career research.
        J Rehabil Med. 2010; 42: 302-309
        • Cella D.
        • Riley W.
        • Stone A.
        • et al.
        The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008.
        J Clin Epidemiol. 2010; 63: 1179-1194
        • Pilkonis P.A.
        • Choi S.W.
        • Reise S.P.
        • et al.
        Item banks for measuring emotional distress from the patient-reported outcomes measurement information system (PROMIS): depression, anxiety, and anger.
        ASMNT. 2011; 18: 263-283
        • Russell D.W.
        UCLA loneliness scale (version 3): reliability, validity, and factor structure.
        J Pers Assess. 1996; 66: 20-40
        • Rosenberg M.
        Conceiving the self.
        Basic Books, New York1979
        • Bogner J.
        • Bellon K.
        • Kolakowsky-Hayner S.A.
        • Whiteneck G.
        Participation assessment with recombined tools-objective (PART-O).
        J Head Trauma Rehabil. 2013; 28: 337-339
        • Bogner J.A.
        • Whiteneck G.G.
        • Corrigan J.D.
        • Lai J.S.
        • Dijkers M.P.
        • Heinemann A.W.
        Comparison of scoring methods for the participation assessment with recombined tools-objective.
        Arch Phys Med Rehabil. 2011; 92: 552-563
        • Whiteneck G.G.
        • Bogner J.A.
        • Heinemann A.W.
        Advancing the measurement of participation.
        Arch Phys Med Rehabil. 2011; 92: 540-541
        • Williams D.R.
        • Neighbors H.W.
        • Jackson J.S.
        Racial/ethnic discrimination and health: findings from community studies.
        Am J Public Health. 2008; 98: S29-S37
        • Struening E.L.
        • Perlick D.A.
        • Link B.G.
        • Hellman F.
        • Herman D.
        • Sirey J.A.
        Stigma as a barrier to recovery: the extent to which caregivers believe most people devalue consumers and their families.
        Psychiatr Serv. 2001; 52: 1633-1638
        • Szmukler G.I.
        • Burgess P.
        • Herrman H.
        • Benson A.
        • Colusa S.
        • Bloch S.
        Caring for relatives with serious mental illness: the development of the experience of caregiving inventory.
        Soc Psychiatry Psychiatr Epidemiol. 1996; 31: 137-148
        • Katz S.
        • Ford A.B.
        • Moskowitz R.W.
        • Jackson B.A.
        • Jaffe M.W.
        Studies of illness in the aged. The index of ADL: a standardized measure of biological and psychosocial function.
        JAMA. 1963; 185: 914-919
        • Lawton M.
        • Brody E.
        Assessment of older people: self-maintaining and instrumental activities of daily living.
        Gerontologist. 1969; 9: 179-186
        • Perkins M.
        • Howard V.J.
        • Wadley V.G.
        • et al.
        Caregiving strain and all-cause mortality: evidence from the REGARDS study.
        J Gerontol B Psychol Sci Soc Sci. 2013; 68: 504-512
        • Green S.E.
        “We're tired, not sad”: benefits and burdens of mothering a child with a disability.
        Soc Sci Med. 2007; 64: 150-163
        • Baronet A.M.
        Factors associated with caregiver burden in mental illness: a critical review of the research literature.
        Clin Psychol Rev. 1999; 19: 819-841
        • Jacoby A.
        Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission.
        Soc Sci Med. 1994; 38: 269-274
        • Gray D.
        ‘Everybody just freezes. Everybody is just embarrassed’: felt and enacted stigma among parents of children with high functioning autism.
        Sociol Health Illn. 2002; 24: 734-739
        • Kittikorn N.
        • Street A.F.
        • Blackford J.
        Managing shame and stigma: case studies of female carers of people with AIDS in southern Thailand.
        Qual Health Res. 2006; 16: 1286-1301
        • Sayer N.A.
        • Noorbaloochi S.
        • Frazier P.
        • Carlson K.
        • Gravely A.
        • Murdoch M.
        Reintegration problems and treatment interests among Iraq and Afghanistan combat veterans receiving VA medical care.
        Psychiatr Serv. 2010; 61: 589-597
        • Sayer N.A.
        • Frazier P.
        • Orazem R.J.
        • et al.
        Military to civilian questionnaire: a measure of postdeployment community reintegration difficulty among veterans using Department of Veterans Affairs medical care.
        J Trauma Stress. 2011; 24: 660-670
        • Brenner L.A.
        • Betthauser L.M.
        • Bahraini N.
        • et al.
        Soldiers returning from deployment: a qualitative study regarding exposure, coping, and reintegration.
        Rehabil Psychol. 2015; 60: 277-285
        • Karlovits T.
        • McColl M.A.
        Coping with community reintegration after severe brain injury: a description of stresses and coping strategies.
        Brain Inj. 1999; 13: 845-861
      1. American Red Cross: military and veteran caregiver network.
        (Available at)
        https://milvetcaregivernetwork.org/
        Date accessed: October 20, 2017
      2. VA caregiver support.
        (Available at)
        https://www.caregiver.va.gov/index.asp
        Date accessed: October 20, 2017
        • Link B.G.
        • Struening E.
        • Rahav M.
        • Phelan J.C.
        • Nuttbroack L.
        On stigma and its consequences: evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse.
        Journal of Health and Social Behavior. 1997; 38: 177-190
        • Markowitz F.E.
        The effects of stigma on the psychological well-being and life satisfaction of persons with mental illness.
        J Health Soc Behav. 1998; 39: 335-347
        • Blum N.
        The management of stigma by Alzheimer family caregivers.
        J Contemp Ethnogr. 1991; 20: 263-284