American Brain Tumor Association (ABTA) Funds Caregiver Research and Education

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To assist caregivers and ultimately patients, ABTA recently funded three projects directed to helping caregivers.

These items, along with new research, will help pave the way for improved caregiver communication and resources

Caring for a person living with a brain tumor can be frustrating and overwhelming, often because of a lack of direction, information and support.

"Caregivers are often the forgotten piece of the brain tumor patient's care and recovery process," said ABTA Executive Director Naomi Berkowitz.

To assist caregivers and ultimately patients, ABTA recently funded three projects directed to helping caregivers:

1) The gathering of pilot data about the psychological and physical effects of caring for a person with a brain tumor. The data helped researchers at the University of Pittsburgh receive a $2 million grant from the National Institutes of Health (NIH) to study the mental and physical health of caregivers.

"This is groundbreaking research; it will definitely document the tremendous difficulties facing caregivers," said Berkowitz.

2) The replication and distribution of the "The Caregivers," a new documentary produced by the University of California San Francisco (UCSF) Department of Neurological Surgery and their Osher Center for Integrative Medicine. It was sent to 750 clinicians who treat brain tumor patients. The documentary highlights the unique, day-to-day challenges of brain tumor patients, family caregivers and their professional caregivers, through four personal and poignant stories. The DVD was accompanied by a Facilitator's Guide. Together, they provide a training tool to be used for the next generation of physicians.

"Caregivers and physicians ultimately share the same goal: to optimally treat and care for the person living with a brain tumor," said Berkowitz. "'The Caregivers' honestly and compassionately explores this complicated partnership, and heightens awareness for improved communication and coordinated care."

3) The distribution of Orientation to Caregiving: A Handbook for Family Caregivers of Patients with Brain Tumors to clinicians. In addition, the handbook is now available to caregivers on the ABTA's Web site: http://www.abta.org. The book, by the same group at UCSF who produced the DVD, is meant to assist caregivers in their arduous task of giving care. All aspects of caregiving are covered.

"These items, along with new research, will help pave the way for improved caregiver communication and resources," said Berkowitz.

The ABTA offers numerous caregiver resources at http://www.abta.org or by calling 800-886-2282. The ABTA offers "Caring for Your Parents" fact sheets; "Tips for Living and Coping" a monthly e-bulletin for patients and caregivers; "The Caring Column," a monthly online column with caregiver tips and advice; and "Support Resources" fact sheets. Social workers are available Monday through Friday, from 8:30 a.m. to 5 p.m. Central Standard Time (CST), to answer questions and provide resource assistance, counseling and support.

Founded in 1973, the American Brain Tumor Association (ABTA) strives to eliminate brain tumors through research while meeting the needs of brain tumor patients and their families. The ABTA provides 40+ publications, resource information, and monthly e-mail communications to help patients and families better understand a brain tumor diagnosis, assist in making educated informed treatment choices, and to ready them for survivorship. More information is available at http://www.abta.org. To contact ABTA, email info@abta.org or call 800-886-2282.

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PEGGY KASPRZAK
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