American Brain Tumor Association Unveils New Online Caregiver Resource Center and Resources for Newly Diagnosed

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Comprehensive information and support for patients and caregivers at http://www.abta.org

Most important things to have known at the point of a brain tumor diagnosis

It was critical that we create these resources so that patients, families and caregivers have one trusted resource where they can turn to educate themselves, find support and feel empowered to make informed decisions.

The American Brain Tumor Association (ABTA) announced today the availability of two new online resources at http://www.abta.org developed specifically to help the newly diagnosed and those caring for them navigate the early days of a brain tumor diagnosis.

“We understand it is overwhelming trying to process the diagnosis, understand a new and challenging vocabulary, and weigh life-altering decisions about your course of treatment in just a matter of days,” said Elizabeth M. Wilson, president and CEO, American Brain Tumor Association. “It was critical that we create these resources so that patients, families and caregivers have one trusted resource where they can turn to educate themselves, find support and feel empowered to make informed decisions.”

The ABTA’s newly diagnosed section, What Now? First Steps After Receiving a Brain Tumor Diagnosis, houses extensive information that patients and caregivers reported they needed in a recent ABTA poll. Forty-two percent of those polled stated that the most important thing they wish they would have known at the time of diagnosis is what questions to ask their healthcare team.

Patients and caregivers now can download these questions from the ABTA’s web pages dedicated to the newly diagnosed and find additional resources about how to seek a second opinion, issues to consider before surgery, working with your insurance company, finding a treatment center, and additional supportive and educational materials.

The ABTA also went live with its new online Caregiver Resource Center created specifically for brain tumor caregivers by brain tumor caregivers. The online center provides comprehensive resources to help caregivers cope with the unique needs of caring for someone with a brain tumor throughout the trajectory of the disease.

Studies have shown that due to the neurological symptoms that can accompany a brain tumor diagnosis, brain tumor caregivers often need more support than caregivers for other types of cancer. In many situations, caregiving is a full time job where the caregiver assumes additional roles, such as: medical researcher, financial manager, patient advocate, and communicator.

“The ABTA Caregiver Resource Center combines caregiver advice with extensive information from clinical experts to provide them with tools and resources to navigate the caregiving continuum,” added Wilson.

Caregivers can watch video messages from brain tumor caregivers who already have been through the experience, and can learn more about:

  •     Understanding your role as caregiver
  •     Impact on the family
  •     Communicating with children
  •     Getting the help you need
  •     Physical and psychological symptoms
  •     Safety at home
  •     Tips for family and friends
  •     Navigating the health care system

The Caregiver Resource Center can be found at http://www.abta.org/brain-tumor-treatment/caregivers/ and What Now? First Steps After Receiving a Brain Tumor Diagnosis is available at http://www.abta.org/brain-tumor-treatment/newly-diagnosed/.

ABOUT THE AMERICAN BRAIN TUMOR ASSOCIATION
Founded in 1973, the American Brain Tumor Association was first and is now the only national organization committed to funding brain tumor research and providing information and education on all tumor types for all ages. For more information, visit http://www.abta.org or call 800-886-ABTA (2282).

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Julie Landmesser
ABTA
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