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Action Ethnography of Community Reintegration for Veterans with TBI
Karen Besterman-Dahan, PhD MA BS
James A. Haley Veterans' Hospital, Tampa, FL
Funding Period: July 2014 - June 2019
Numerous studies of community reintegration (CR) in traumatic brain injury (TBI) have been conducted in the civilian population, but not in Veteran populations. Little is known about how knowledge from civilian studies translates into Veterans' experiences and needs. The VA recognizes the distinctive healthcare needs of OEF/OIF Veterans, particularly with TBI, including the need to bridge health and rehabilitation-related services from acute care and inpatient settings to Veterans' homes and communities to facilitate CR. Research is needed to identify barriers and facilitators to CR for Veterans to inform the design of supportive community-based services. Sanders, a well-known CR researcher, identified three main needs for researchers and rehabilitation professionals: (1) a comprehensive meaning of CR, which includes the perspectives of persons with TBI; (2) cultural competence in measurement and intervention; and (3) incorporation of a thorough understanding of environmental factors that affect CR into research and treatment.
The goal of the proposed study is to better understand the experiences of Veterans with moderate to severe TBI, of families, and of CR workers as Veterans transition to and sustain living in communities. Of interest is both Veterans' experiences and the context in which they occur, including local, state, regional and VA environments that both facilitate and impede the ability of Veterans and families to negotiate services to achieve salutary levels of CR. The objectives and research questions of this 4-year longitudinal ethnography of Veterans with complicated mild, moderate or severe TBI, using a Community-Based Participatory Research approach, are to: 1) Describe the community reintegration experiences as perceived by Veterans; 2) Compare and contrast barriers and facilitators to community reintegration from multiple perspectives (Veterans, families, and CR workers, e.g. Case Mangers, Care Coordinators, VA/DOD/community contacts, etc.); 3) Describe how personal social networks change over time and influence CR; and 4) In partnership with Veterans, families and CR specialists, identify strategies to improve CR experiences.
This four-year longitudinal ethnography uses mixed methods (interviews, questionnaires, participant observation) from a Community-Based Participatory Research perspective. The inductive, participant-perceived and holistic approach of ethnography is ideal for studying CR in Veterans and military service members (VMSM) with TBI, because little is known regarding their definitions and perceptions of CR. This approach provides a thorough understanding of environmental and cultural factors that influence CR. The primary sample includes 30 VMSM with complicated mild, moderate or severe TBI. The secondary sample includes primary family caregivers and CR specialists. The tertiary sample includes key stakeholders. The quaternary sample consists of 82 community events for VMSM.
Based on interview data, VMSM defined CR as engaging in productive activities such as school and work, living independently, and in appropriate and responsible social relationships. Veterans marked success in CR by how well they "fit in" with their social networks, communities and the world.
Analysis of interview data identified CR barriers in five domains: (1) cognition-impaired memory, concentration, comprehension, speech, self-awareness; (2) physical functioning-pain, impaired mobility, seizures; (3) behavior-anger, impulsivity, irritability, mood swings; (4) psychosocial-dependency on others for assistance, economic stress, grief from multiple losses, isolation, loneliness, relationship difficulties, stigma; and (5) context-difficulty in accessing services, lack of clinical or rehabilitation services after inpatient rehabilitation, limited opportunities for engaging in productive activities, requirements for complex care coordination. Numerous opportunities were identified to overcome barriers for successful CR including family support services, peer support and social network strengthening programs, psychosocial and clinical interventions, and long-term care coordination that is holistic and integrates VA and non-VA services.
Observations of community events yielded a typology based on purposes related to CR. Forty-three were bridging events focused on promoting understanding among service members, Veterans and civilians; 27 were outreach events for linking Veterans and families to services or to increase their knowledge about services; 23 were connecting events for linking Veterans to Veterans; and 12 were therapeutic events for Veterans focused on skills building to facilitate CR. Barriers for Veteran participation in events included stigma associated with TBI, lack of accommodation for invisible disabilities (e.g., cognitive), limited TBI-focused events, and difficulty in identifying events. Opportunities for overcoming barriers were tailoring events to target audiences, providing one-to-one social support during events, better accommodation of invisible disabilities during events, and improved marketing of events.
From observational data at community events, review of best practices, and input from our Veteran Engagement Council, we developed a tip sheet that provides community organizations with helpful information for creating environments that help Veterans with TBI and multiple comorbidities to feel accepted and respected. Dissemination to 54 community organizations in the study, and widespread dissemination are in progress.
Delivered seven podium presentations and two poster presentations at national conferences, and four local poster presentations. A symposium is scheduled for
the 2018 ACRM meeting.
Veteran Engagement Council has met five times since March 2017 to help us overcome recruitment challenges, interpret results and review dissemination materials.
Conducted briefings to VA PM&R Service.
External Links for this Project
NIH ReporterGrant Number: I01HX001089-01
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DRA: Brain and Spinal Cord Injuries and Disorders
Keywords: Family, Outcomes - Patient, Reintegration Post-Deployment, TBI
MeSH Terms: none