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Clinical Trials/NCT00771277
NCT00771277
Completed
Not Applicable

Team Based Initiative Support

US Department of Veterans Affairs1 site in 1 country6 target enrollmentSeptember 2008

Overview

Phase
Not Applicable
Intervention
Not specified
Conditions
Traumatic Brain Injury
Sponsor
US Department of Veterans Affairs
Enrollment
6
Locations
1
Primary Endpoint
Number of Participants Who Reported 5 Themes
Status
Completed
Last Updated
11 years ago

Overview

Brief Summary

Traumatic brain injury (TBI) has been called the signature injury of the Iraq War. This pilot study investigated family needs of 6 rural families caring for a Veteran with TBI. Two Veterans had moderate TBI and all had comorbid post traumatic stress disorder diagnoses. The veterans were 1 to 5 years post-injury. Families were reluctant to include others in helping the family because of privacy concerns, desire for independence, and negative employment repercussions if the extent of the TBI deficit became known in the community. Most were still employed, despite TBI deficits. Despite having previously received information, families still had substantial needs for information about the condition and its prognosis and sequelae (e.g., why things happen, unsafe/frightening behaviors, work, finances, communication changes) and the availability and types of services (e.g., who to contact, benefits, help needed)

Detailed Description

Background/Rationale: Traumatic brain injury (TBI) has been called the signature injury of the Iraq War. This pilot study was an investigation of the feasibility of volunteer support teams for families providing care to a returning Operation Enduring Freedom/Operation Iraqi Freedom (OEF/OIF) veteran with TBI. Volunteer support teams coordinate tasks and effort for family and volunteers. This support model is particularly relevant for families in rural areas that are likely to be under-funded in home and community services. Objectives: The original study objective was to determine feasibility of, and barriers to, implementing volunteer support teams with rural families of OEF/OIF veterans with recently diagnosed moderate-severe TBI. A secondary objective was to provide information on TBI to families and volunteers. Methodology: The project coach met the family in the home to identify unmet needs and to determine availability of family and friends who could help meet needs. The coach provided training about TBI and a Resource Book with information on TBI diagnosis, prognosis, and symptoms. There were baseline, monthly, and study end qualitative interviews with the family focusing on concerns. Findings/Result: Fifteen families were referred; TBI levels were mainly mild. Six families were enrolled. Two Veterans had moderate TBI and all had comorbid post traumatic stress disorder diagnoses. All lived in rural communities. The veterans were 1 to 5 years post-injury and support systems were already in place, although these systems were small. Families did not want to implement caregiving teams because of privacy concerns, desire for independence, and negative employment repercussions if the extent of the TBI deficit became known in the community. Most were still employed, despite TBI deficits. However, the project identified that families had substantial needs for information about the condition and its prognosis and sequelae (e.g., why things happen, unsafe/frightening behaviors, work, finances, communication changes) and the availability and types of services (e.g., who to contact, benefits, help needed). Families often reported feeling lost in negotiating the DoD and VA systems. Impact: Issues and concerns for rural, mild TBI veterans and their families were identified. Families and the Veteran may not be ready to accept the diagnosis when it first occurs. Families and the veteran identified a need for just-in-time information on TBI, its consequences, and services available. The delicate balance between return to full functioning as a community member and the deficits of TBI is threatened by family independence, privacy needs, and fear of loss of employment. The study identified opportunities for community education and for coordination between the military and VHA.

Registry
clinicaltrials.gov
Start Date
September 2008
End Date
March 2009
Last Updated
11 years ago
Study Type
Interventional
Study Design
Single Group
Sex
All

Investigators

Responsible Party
Sponsor

Eligibility Criteria

Inclusion Criteria

  • The primary family member caregiver of the Traumatic Brain Injury (TBI) veteran
  • Veteran receiving care at the Memphis Veterans Affairs Medical Center
  • Perceived need of help and support
  • Willing to participate in the study after discussion with OEF/OIF Program
  • Manager or team member

Exclusion Criteria

  • Not provided

Outcomes

Primary Outcomes

Number of Participants Who Reported 5 Themes

Time Frame: collected over 3 interviews of approximately 1 hour each

Six caregivers of TBI patients were interviewed; responses were transcribed and coded; inter-rater agreement was calculated. Themes were lack of understanding about TBI and its long-term effects and the differences between TBI and PTSD, privacy concerns, independence, fear of negative employment/financial repercussions, and difficulty in interactions with the Department of Defense (DoD) and the Department of Veterans Affairs (VA)

Secondary Outcomes

  • PHQ-9(baseline)
  • Zarit Burden Inventory(baseline)

Study Sites (1)

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