New Report Commissioned on Cancer Caregiving in the United States

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National Alliance for Caregiving, the National Cancer Institute and the Cancer Support Community to Partner on New White Paper on Cancer Caregivers

More than three million Americans are currently caring for someone with cancer, and many play a key role in managing cancer, including helping their loved one adhere to treatment, make informed decisions, and even address end-of-life concerns.

Last May, the National Cancer Institute and National Institute of Nursing Research convened stakeholders to discuss the science of cancer caregiving. Patients, caregivers, health care providers, researchers, and thought-leaders met to identify the unique challenges facing family caregivers and gaps that remain in the science.

Now some of those stakeholders are continuing to work to further understand those challenges through a new paper on family caregivers for people living with cancer.

“Although we know many people are affected when a loved one has cancer, much more research is needed on the specific challenges that cancer caregivers face and the most effective interventions to support cancer patients and their families.” explained Dr. Erin Kent of the National Cancer Institute. “The growing number of adults living long-term after a cancer diagnosis is a success story, but it is also expanding both the length and burden of care on families.”

The paper will compile cancer-specific data from a 2015 report, Caregiving in the U.S., a joint project from the National Alliance for Caregiving and AARP Public Policy Institute. The Caregiving report surveyed more than 1,200 family caregivers and identified common challenges facing the caregiving community, including difficulty conducting medical and nursing tasks, challenges with balancing career and caregiving responsibilities, and financial strain.

In addition to the Caregiving data, the white paper will suggest additional analyses and resources that can help researchers continue to address gaps in family caregiving support and science for individuals with cancer.

“Much of the national discussion on family caregiving has focused on aging and long-term disability,” noted Gail Gibson Hunt, President and CEO of the National Alliance for Caregiving. “Many people aren’t aware that after dementia, cancer is the second most prevalent condition that requires the assistance of a family caregiver. It’s time to dig deeper into the needs of these caregivers and better understand that they may benefit from more tailored supports than what the traditional caregiving community has offered.”

Dr. Margaret Longacre of the Cancer Support Community agrees. “The Cancer Support Community has a long history of serving the relatives and friends of those diagnosed with cancer. We deeply value the need to understand the caregiver experience in the cancer context, and believe it necessary to develop effective programs and policies to enhance the lives of caregivers and those receiving care. Our online Cancer Experience Registry is one way we are gaining information about the social, emotional and financial experiences of those caring for someone with cancer.

The forthcoming white paper will be jointly authored by the National Alliance for Caregiving, the National Cancer Institute, and the Cancer Support Community, with data analysis from Greenwald & Associates. It is made possible through a contract with the National Cancer Institute and generous sponsorship from the Cancer Support Community.

About the National Alliance for Caregiving
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance supports a network of more than 80 state and local caregiving coalitions and serves as Secretariat for the International Alliance of Carer Organizations (IACO). Learn more at http://www.caregiving.org.

About Cancer Support Community
As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC) is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. CSC achieves its mission through three areas: direct service delivery, research and advocacy. The organization includes an international network of Affiliates that offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C. and across the nation. For more information, please call the toll-free Cancer Support Helpline at 888-793-9355, or visit http://www.CancerSupportCommunity.org.

About Greenwald & Associates
Greenwald & Associates is a leading full-service research firm with industry expertise in healthcare, financial services, & employee benefits. Conducting customized research for over 30 years, Greenwald & Associates has earned a reputation for extensive research knowledge, industry expertise, and commitment to serving the needs of our clients. For more information, please visit http://www.greenwaldresearch.com.

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C. Grace Whiting
@NA4Caregiving
since: 10/2011
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