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Family and Patient Support: New Approaches to Fostering Dialogue and Hope (THI Part 3 of 3)

This webinar, presented on 11/17/2010, features Laura S. Lorenz. It is part 3 of 3 in a series about traumatic head injury in torture survivors.

This webinar is part of the National Capacity Building (NCB) webinar series. NCB is a project of the Center for Victims of Torture.

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Date: 
Wednesday, 17 November 2010

In the 1950's Dr. Ettinger and later in the 1980s Goldfeld and Mollica identified Traumatic Head Injury (THI)/leading to Traumatic Brain Injury (TBI) as a common and severe sequelae of trauma and other forms of external violence. THI/TBI is now likely recognized as the signature injury in American combat troops returning from the wars in the Middle East. Yet THI/TBI related to medical and psychiatric problems are difficult to diagnose and treat even in specialized clinics for survivors of torture and combat veterans.

Don't miss the other two parts of this webinar series!

History and Evidence of Traumatic Head Injury (THI): Basic Concepts and Principles in the Care of Torture Survivors with THI (THI Part 1 of 3)

Screening for Traumatic Head Injury in a Basic Clinic Setting (THI Part 2 of 3)

Objectives for this webinar

1. Identify when THI/TBI affected torture survivors need referral to mainstream specialized rehabilitation centers.

2. Learn about patient and family lived experience with TBI/THI, with the goal of fostering dialogue and hope and promoting patient- and family-centered care.

3. Connect with patient and family supports in the community.

4. Learn what patient and family support can be administered in a torture treatment center.

Presenter

Laura S. Lorenz, PhD, MEd, CBIS, is a researcher and educator with international experience communicating health research results and policy impacts for global audiences. She holds a joint appointment at the Heller School for Social Policy and Management, Brandeis University: as senior research associate in the Institute for Behavioral Health, and program manager for Executive Education, a continuing education program that provides leadership training in health policy and management for clinical leaders including surgeons, physicians and nurses. She is a certified brain injury specialist and the author of Brain Injury Survivors: Narratives of Rehabilitation and Healing (Lynne Rienner Publishers).

Resources

Brain Injury Association of America (BIAA) at http://www.biausa.org/
The Brain Injury Association of America (BIAA) is the voice of brain injury. We are dedicated to increasing access to quality health care and raising awareness and understanding of brain injury through advocacy, education and research. With a nationwide network of more than 40 chartered state affiliates and hundreds of local chapters and support groups, we provide help, hope and healing for individuals who live with brain injury, their families and the professionals who serve them.

BIAA National Directory of Brain Injury Services at https://secure.biausa.org/OnlineDirectory/Directory/Default.aspx
A comprehensive, accessible and informative directory of brain injury providers spanning the complete continuum of care from injury through community services. Provides links to facilities and community-based services, brain injury specialists, state brain injury associations, and support groups. Also provides pdf guides to selecting legal representation, and selecting rehabilitation services.

The Essential Brain Injury Guide, Edition 4.0, from the Brain Injury Association of America (BIAA). Order from BIAA at https://secure.biausa.org/detail.aspx?ID=466
The main resource for BIAA’s brain injury specialist certification program, this booklet provides a wealth of information on brain injury, rehabilitation, understanding and treating functional impacts, family issues, and legal and ethical issues. A handy book to have on your shelf.

Brain injury survivors: Narratives of rehabilitation and healing. This book by Laura S. Lorenz and published in 2010 by Lynne Rienner Publishers provides information on brain injury and touching case studies of three brain injury survivors who took photographs of their lives to communicate their experience with TBI. This book may be a useful reference on your shelf or in your center library. https://www.rienner.com/title/Brain_Injury_Survivors_Narratives_of_Rehabilitation_and_Healing 

Brainline, www.brainline.org
Developed by WETA, a public television station in northern Virginia, with funding support from the Defense and Veterans Brain Injury Center, this website provides information about TBI basics, as well as information specifically for people with TBI, family and friends, and professionals. You will find the photovoice project “Brain Injury X-Posed” at http://www.brainline.org/multimedia/photovoice.html.

Caregiver resource guide, prepared by the Brain Injury Association of Massachusetts (BIA-MA) at www.biama.org. Full of resources to support people caring for someone with TBI.
 
Guide to State Government Brain Injury Policies, Funding and Services. (2005, 2nd Edition). Prepared by Anne King and Susan L. Vaughn for the National Association of State Head Injury Administrators (NASHIA), this book provides information on an array of publicly funded service and supports from a variety of State Agencies. The section entitled “Services and Supports” is particularly relevant. Download the guide at https://tbitac.norc.org/download/fullnashiaguide.pdf
 
HRSA Federal TBI Program Publications and Resources at  https://tbitac.norc.org/download/screeninginstruments.pdf
HRSA Publications, webcasts & external sources, including Federal TBI Program Publications, MCHB Archived Web Casts, and External Publications from a range of sources. Access a range of information and training/learning opportunities through this site.

National Family Caregivers Association at www.nfcacares.org or 1-800-896-3650
The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being. Check out their caregiving resources: http://www.caregiveraction.org/resources/

Lash & Associates Publishing / Training Inc. http://www.lapublishing.com/
Lash publishes books, manuals, tip cards and tool kits that describe the symptoms, treatment, cognitive rehabilitation and recovery of individuals with brain injuries in user-friendly materials without jargon. They are written for clinicians, therapists, educators, advocates, caregivers and families for use in hospitals, rehabilitation programs, schools, private practice, community agencies and home settings. Check out their family resources at http://www.lapublishing.com/head-injury-family-issues/ .

Principles of neuropsychological rehabilitation. A classic book by neuropsychologist George P. Prigatano and published in 1999 by Oxford University Press. You may find it useful to have this book as a reference on your shelf or in your center library.

“TBI Screening Instruments” at https://tbitac.norc.org/download/screeninginstruments.pdf a review of TBI screening instruments used by various states, with a table listing different instruments used. Unfortunately the live links in the document go to the now defunct NASHIA site, so you may need to search for the instruments on the web or on the HRSA site instead.

“TBI State Trust Funds” https://tbitac.norc.org/download/trustfundpacket.pdf A listing of TBI Trust Funds by state and their primary characteristics, and a good review of each state’s fund, including eligibility criteria, program operation and restrictions, and program evaluation, for example. Knowledge of these funds could be useful for knowing the types of publicly funded services that might be available in your state.

Video Series: “You Look Great!: Inside a TBI” by John Byler, TBI Survivor. A series of 6 short videos on TBI created by a former training professional. An excellent introduction to the complicated topics of injury, challenges, and healing. Access them at http://www.youtube.com/view_play_list?p=432C94EB3256C634
 
Webinar “Unidentified TBI: The Importance of Screening to Find Those Who are “Lost” at http://webcast.hrsa.gov/Postevents/archivedWebcastDetail.asp?aeid=453 A webinar by Dr. Wayne Gordon of Mt Sinai Hospital and past president of the American Congress of Rehabilitation Medicine on the issue of unidentified TBI in the general US population, and the need for TBI screening. This is a very good overview to the issue of unidentified TBI. 

Living with brain injury: A guide for families (2nd edition), http://www.richardsenelick.com/books-dvds/books/living-with-brain-injury-a-guide-for-families-second-edition, by R. Senelick and K. Dougherty and published in 2001 by HealthSouth. A practical and useful book, highly recommended by the Brain Injury Association of Massachusetts. Has a chapter on mild Traumatic Brain Injury.

TBI and Photovoice Resources - A Sampling of Papers

Lorenz, Laura S. 2010. Visual metaphors of living with brain injury: Exploring and communicating lived experience with an invisible injury. Visual Studies, 25(3), 210-223 (December)

Lorenz, Laura S. 2010. Discovering a new identity after brain injury. Sociology of Health & Illness 32 (6), 862-879.

Lorenz, Laura S, and Bettina Kolb. 2009. Involving the public through participatory visual methods. Health Expectations 12 (6), 262-274.

Prigatano, George P. (1989). Work, love, and play after brain injury. Bulletin of the Menninger Clinic, 53, 414-431.

Wang, Caroline C., & Mary Ann Burris. 1997. Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369-387.

Wang, Caroline, Mary Ann Burris, and Xiang Yue Ping. 1996. Chinese village women as visual anthropologists: A participatory approach to reaching policymakers. Social Science & Medicine 42 (10), 1391-1400.

TBI and Photovoice Resources - An Online Sampling

Aphasia Photovoice Project: http://www.aphasiatalk.com

A video paper describing the use of photovoice to improve clinical care: Lorenz, L. S., & Chilingerian, J. A. (2010). Using visual and narrative methods to achieve fair process in clinical care. Journal of Visualized Experiments. http://www.jove.com/index/Details.stp?ID=2342 doi: 10.3791/2342

Doing your own photovoice project: a simple guide for support groups. Access a simple facilitator’s guide to doing your own photovoice project at: http://www.brainline.org/multimedia/presentations/photovoice/Photovoice_Facilitators_Guide.pdf . See the photovoice project “Brain Injury X-Posed: The Survivor’s View” on the Brainline.org website at: http://www.brainline.org/multimedia/photovoice.html.

A practical guide to photovoice: Sharing pictures, telling stories and changing communities. By Beverly Palibroda with Brigette Krieg, Lisa Murdock and Joanne Havelock, March 2009. Developed by the Prairie Women’s Health Centre of Excellence in Winnipeg, Manitoba, Canada, this 84-page booklet provides good guidelines for doing photovoice as participatory action research. Available as a pdf download at: http://www.pwhce.ca/photovoice/pdf/Photovoice_Manual.pdf

Photographs and Captions from Acquired Brain Injury Survivors: http://issuu.com/bia-ma/docs/brain_injury_x-posed_photovoice_project . See the photovoice project “Brain Injury X-Posed: The Survivor’s View” of the Framingham Brain Injury Survivor Support Group.

Search for photovoice videos on YouTube: http://www.youtube.com/results?search_query=photovoice

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