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SDR 07-044 – HSR&D Study

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SDR 07-044
Understanding and Meeting the Needs of Informal Caregivers to Improve Outcomes for Traumatic Brain Injury Patients with Polytrauma
Joan M. Griffin PhD
Minneapolis VA Health Care System, Minneapolis, MN
Minneapolis, MN
Funding Period: April 2008 - March 2011

BACKGROUND/RATIONALE:
Many OEF/OIF/OND service members who suffer from polytraumatic injuries (PT), including traumatic brain injuries (TBI) will require life-long care and support, often provided by family and friends. Little is known about who provides this care, the type and amount of care required, or how caregiving for this population affects both caregiver and care recipient health after discharge from inpatient acute rehabilitation.

OBJECTIVE(S):
This study's objective was to describe both PT/TBI patients and their caregivers; assess physical, emotional and financial burdens of caregiving; and determine the resources available to caregivers. We proposed to test how the burden of caregiving is associated with caregiver and care recipient outcomes and what resources buffer this relationship.

METHODS:
This was a mixed-method, cross-sectional, observational study that included a mailed survey and in-depth qualitative interviews. From June to December 2009, next-of-kin (NOK) of all patients who were discharged between 2001 and 2009 from inpatient VA Polytrauma Rehabilitation Centers were surveyed. Of 1,045 patients meeting inclusion criteria, 20% of the NOK could not be reached (208) by mail or phone. Of the 837 NOK reached who self-identified as the primary caregiver (or nominated an alternate), 564 responded (67%), 47 refused (6%), and 226 (27%) did not respond to the survey. Qualitative interviews were then conducted with a sample of parent and spouse caregivers (n=19) who completed the survey.

FINDINGS/RESULTS:
Caregivers were primarily women (79%), and typically a parent (62%) or spouse (32%). A median 4 years after injury, 22% of patients still required assistance with activities of daily living (ADLs) and independent activities of daily living (IADLS). An additional 48% required assistance with only IADLs. Nearly 25% of caregivers reported providing more than 40 hours/week of care and another 20% provided 5-40 hours/week. Of caregivers providing assistance with ADLs, 49% provided care >80 hours/week. Nearly 60% of caregivers were solely responsible for the caregiving. Most caregivers reported also providing other kinds of care, including managing emotions and navigating health and legal systems. Caregivers faced competing life demands; over half were employed or attended school and over 30% cared for children or other dependent adults. Those caring for lower functioning care recipients reported more depression, anxiety and burden. Likewise, spouses and younger caregivers reported more burden, depression and anxiety than parents and older caregivers. Financial strain was common among all caregivers: 62% depleted assets and/or accumulated debt and 41% of workers left the labor force after the injury. Yet, 40% of respondents felt supported "most or all of the time," while only 10% reported having support "little or none of the time."

IMPACT:
During the course of this study, the Caregivers and Veterans Omnibus Health Services Act of 2010 was passed. This law is intended to provide benefits to caregivers in order to curb the strain associated with caregiving (stipends, training, telephone support, etc). Our data provide a baseline assessment of what caregiving demands were prior to this law's enactment and identifies potential areas for future intervention to reduce caregiver burden and improve care recipient community integration.

PUBLICATIONS:

Journal Articles

  1. Phelan SM, Bangerter LR, Friedemann-Sanchez G, Lackore KA, Morris MA, Van Houtven CH, Carlson KF, van Ryn M, Harden KJ, Griffin JM. The Impact of Stigma on Community Reintegration of Veterans With Traumatic Brain Injury and the Well-Being of Their Caregivers. Archives of physical medicine and rehabilitation. 2018 Nov 1; 99(11):2222-2229.
  2. Stevens LF, Pickett TC, Wilder Schaaf KP, Taylor BC, Gravely A, Van Houtven CH, Friedemann-Sánchez G, Griffin JM. The Relationship between Training and Mental Health among Caregivers of Individuals with Polytrauma. Behavioural Neurology. 2015 Dec 7; 2015:185941.
  3. Carlson KF, Meis LA, Jensen AC, Simon AB, Gravely AA, Taylor BC, Bangerter A, Schaaf KW, Griffin JM. Caregiver reports of subsequent injuries among veterans with traumatic brain injury after discharge from inpatient polytrauma rehabilitation programs. The Journal of head trauma rehabilitation. 2012 Jan 1; 27(1):14-25.
  4. Griffin JM, Friedemann-Sánchez G, Jensen AC, Taylor BC, Gravely A, Clothier B, Simon AB, Bangerter A, Pickett T, Thors C, Ceperich S, Poole J, van Ryn M. The invisible side of war: families caring for US service members with traumatic brain injuries and polytrauma. The Journal of head trauma rehabilitation. 2012 Jan 1; 27(1):3-13.
  5. Van Houtven CH, Friedemann-Sánchez G, Clothier B, Levison D, Taylor BC, Jensen AC, Phelan SM, Griffin JM. Is policy well-targeted to remedy financial strain among caregivers of severely injured U.S. service members? Inquiry : A Journal of Medical Care Organization, Provision and Financing. 2012 Jan 1; 49(4):339-51.
  6. Phelan SM, Griffin JM, Hellerstedt WL, Sayer NA, Jensen AC, Burgess DJ, van Ryn M. Perceived stigma, strain, and mental health among caregivers of veterans with traumatic brain injury. Disability and health journal. 2011 Jul 1; 4(3):177-84.
  7. Griffin JM, Friedemann-Sánchez G, Hall C, Phelan S, van Ryn M. Families of patients with polytrauma: Understanding the evidence and charting a new research agenda. Journal of rehabilitation research and development. 2009 Jan 1; 46(6):879-92.
Journal Other

  1. Carlson KF, Jensen AC, Simon AB, Gravely AA, Taylor BC, Bangerter AK, Meis LA, Schaaf KW, Griffin JM. Polytrauma and Blast Related Injuries: Risk of Re-injury after Discharge from VA Inpatient Rehabilitation. [Abstract]. The Journal of head trauma rehabilitation. 2010 Sep 30; 25(5):399.
  2. Griffin JM, Friedemann-Sanchez G, Jensen AC, Taylor BC, Gravely AA, Clothier BA, Phelan SM, Carlson KF, van Houtven C, Ceperich S, Pickett T, Thors C, Van Ryn M. Polytrauma and Blast Related Injuries: Challenges for Families after VA Inpatient Rehabilitation. [Abstract]. The Journal of head trauma rehabilitation. 2010 Sep 30; 25(5):398.
Book Chapters

  1. Griffin JM, Friedemann-Sánchez G, Carlson KF, Jensen AC, Gravely A, Taylor BC, Phelan SM, Wilder-Schaaf K, Dyche Ceperich S, Harold Van Houtven C. Resources and Coping Strategies Among Caregivers of Operation Iraqi Freedom (OIF) and Operation Enduring Freedom (OEF) Veterans with Polytrauma and Traumatic Brain Injury. In: Wadsworth SM, Riggs DS, editors. Military Deployment and its Consequences for Families. 2014 ed. New York, NY: Springer New York; 2013. Chapter 14. 259-280 p.
Conference Presentations

  1. Griffin JM, Friedemann-Sanchez G, Jensen AC, Taylor BC, Gravely AA, Bangerter AK, Van Ryn M. Caring for OEF/OIF Veterans with Polytrauma: Health Effects on Caregivers. Poster session presented at: VA HSR&D / QUERI National Meeting; 2012 Jul 16; National Harbor, MD.
  2. Jensen AC, Carlson KF, Van Houtven CH, Taylor BC, Gravely AA, Griffin JM. Ready for Prime Time: Evidence-Based Research Programs and Tools Ready for Clinical Use. Paper presented at: VA Office of Patient Care Services National Caregiver Support Conference; 2011 Aug 3; Washington, DC.
  3. Van Houtven C, Friedemann-Sanchez G, Clothier BA, Levison T, Taylor BC, Jensen AC, Phelan S, Griffin JM. Informal Care and Work: Financial Strain Among Family Caregivers of OEF/OIF Service Members with Traumatic Brain Injury and Polytrauma. Paper presented at: International Health Economics Association Biennial World Congress on Health Economics; 2011 Jul 12; Toronto, Canada.
  4. Van Houtven CH. Factors associated with financial strain among family caregivers of OEF/OIF polytrauma veterans. Presented at: International Health Economics Association Biennial World Congress on Health Economics; 2011 Jul 10; Toronto, Canada.
  5. Griffin JM, Friedemann-Sanchez G, Jensen AC, van Ryn M, Carlson KF, Van Houtven C, Taylor BC, Phelan SM, Gravely AA, Clothier BA, Levison D, Meis LA, Wilder Schaaf K, Pickett T, Ceperich S, Poole J, Thors C. Caring for Veterans with war-related injuries: The burden for caregivers. Poster session presented at: Minnesota Age and Disabilities Odyssey Conference; 2011 Jun 21; Rochester, MN.
  6. Phelan SM, Griffin JM, Jensen AC, van Ryn M. How Does Stigma Affect the Mental Health of Caregivers of Veterans with Polytraumatic Injuries? Poster session presented at: Minnesota Age and Disabilities Odyssey Conference; 2011 Jun 21; Rochester, MN.
  7. Friedemann-Sanchez G, Van Houtven CH, Jensen AC, Levison D, Phelan S, Griffin JM. Why are Caregivers of OEF/OIF Veterans with Traumatic Brain Injury and Polytrauma Financially Strained? Poster session presented at: VA HSR&D National Meeting; 2011 Feb 17; National Harbor, MD.
  8. Griffin JM, Friedemann-Sanchez G, Jensen AC, Taylor BC, Gravely AA, Clothier BA, Simon AB, Van Houtven CH, Bangerter AK, Pickett T, Thors C, Ceperich S, Poole J, van Ryn M. Caring for OEF/OIF Veterans with Polytrauma: The Objective Burden of Caregivers. Poster session presented at: VA HSR&D National Meeting; 2011 Feb 17; National Harbor, MD.
  9. Jensen AC, Bangerter AK, Gravely AA, Simon AB, Taylor BC, Clothier BA, Griffin JM. Challenges of Recruiting Operation Enduring Freedom and Operation Iraqi Freedom Caregivers in Research. Poster session presented at: VA HSR&D National Meeting; 2011 Feb 17; National Harbor, MD.
  10. Van Houtven CH, Friedemann-Sanchez G, Clothier BA, Levison D, Taylor BC, Jensen AC, Phelan S, Griffin JM. Financial Strain Among Family Caregivers of OEF/OIF Service Members with Traumatic Brain Injury and Polytrauma. Poster session presented at: VA HSR&D National Meeting; 2011 Feb 17; National Harbor, MD.
  11. Griffin JM. Reintegration Challenges Among OIF/OEF and Their Family Members: Implication for Service Delivery. Paper presented at: Trauma Spectrum Disorders Annual Conference; 2010 Dec 8; Bethesda, MD.
  12. Carlson KF, Jensen AC, Simon AB, Gravely AA, Taylor BC, Bangerter AK, Meis LA, Schaaf KW, Griffin JM. Polytrauma and Blast Related Injuries: Risk of Reinjury after Discharge from VA Inpatient Rehabilitation. Paper presented at: American Public Health Association Annual Meeting and Exposition; 2010 Nov 10; Denver, CO.
  13. Carlson KF, Jensen AC, Simon AB, Gravely AA, Taylor BC, Bangerter AK, Meis LA, Wilder Schaaf K, Griffin JM. Polytrauma and Blast Related Injuries: Risk of Reinjury after Discharge from VA Inpatient Rehabilitation. Paper presented at: National Association of State Head Injury Administrators / North American Brain Injury Society Joint Meeting; 2010 Oct 7; Minneapolis, MN.
  14. Griffin JM, Friedemann-Sanchez G, Jensen AC, Taylor BC, Gravely AA, Clothier B, Phelan S, Carlson KF, Van Houtven C, Ceperich S, Pickett T, Thors C, van Ryn M. Polytrauma and Blast Related Injuries: Challenges for Families after VA Inpatient Rehabilitation. Paper presented at: National Association of State Head Injury Administrators / North American Brain Injury Society Joint Meeting; 2010 Oct 7; Minneapolis, MN.
  15. Griffin JM, Friedemann-Sanchez G, Jensen AC, van Ryn M, Carlson KF, van Houtven C, Taylor BC, Phelan SM, Gravely AA, Clothier BA, Levison D, Meis LA, Wilder Schaaf K, Pickett T, Ceperich S, Poole J, Thors C. Polytrauma and Blast Related Injuries: Challenges for Families after VA Inpatient Rehabilitation. Poster session presented at: VA Supporting Veterans At Home Conference; 2010 Jul 14; Arlington, VA.
  16. Van Houtven CH, Griffin JM. A white paper on the current status of findings from informal caregiving research and recommendations for the VA. Paper presented at: VA Supporting Veterans At Home Conference; 2010 Jul 12; Arlington, VA.
  17. Griffin JM, Friedemann-Sanchez G, Jensen AC, Van Ryn M, Carlson KF, Phelan SM, Gravely AA, Levison D, Van Houtven CH, Meis LA, Taylor BC, Pickett T, Ceperich S, Poole J, Thors C. Polytrauma and Blast Related Injuries: Systems of Care and Challenges for Families. Paper presented at: AcademyHealth Annual Research Meeting; 2010 Jun 28; Boston, MA.
  18. Sayer NA, Griffin JM, Kerns RD, Seal KH. Operation Enduring Freedom/Operation Iraqi Freedom Returning Veterans Issues. Paper presented at: AcademyHealth Annual Research Meeting; 2010 Jun 28; Boston, MA.
  19. Griffin JM. Family and Caregiver Experiences with Polytrauma: Preliminary Findings. Paper presented at: Trauma Spectrum Disorders Annual Conference; 2009 Dec 10; Bethesda, MD.
  20. Phelan S, Griffin JM, Jensen A, Hellerstedt W, Sayer NA, Burgess DJ, van Ryn M. How does stigma affect the mental health of family caregivers of Veterans with traumatic brain injury? Poster session presented at: American Public Health Association Annual Meeting and Exposition; 2009 Nov 11; Philadelphia, PA.
  21. Phelan S, Griffin JM, Jensen AC, Sayer NA, Burgess DJ, Hellerstedt W, van Ryn M. Does severity of neurobehavioral effects of traumatic brain injury affect caregiver perceptions of discrimination? Paper presented at: American Public Health Association Annual Meeting and Exposition; 2009 Nov 10; Philadelphia, PA.
  22. Griffin JM. VA Caregiving Research: Developing an agenda for assessing and addressing needs for caregivers of polytrauma patients. Paper presented at: Trauma Spectrum Disorders Annual Conference; 2008 Oct 2; Bethesda, MD.
  23. Griffin JM, Friedemann-Sanchez G, Carlson K, Ronco J, Hall C, Phelan S, van Ryn M. Opportunities and challenges to assessing long-term needs for caregivers of polytrauma patients. Paper presented at: VA HSR&D National Meeting; 2008 Feb 14; Baltimore, MD.


DRA: Military and Environmental Exposures, Mental, Cognitive and Behavioral Disorders, Health Systems, Acute and Combat-Related Injury, Brain and Spinal Cord Injuries and Disorders
DRE: Treatment - Observational, Prevention
Keywords: Caregivers – not professionals, Outcomes - Patient, PTSD, Reintegration Post-Deployment, TBI, Traumatic Brain Injury
MeSH Terms: Caregivers, Combat Disorders, Health Behavior, Rehabilitation, Women's Health