FCRP Policy Statement

Due to technological advances and a better understanding of the illness, cancer is no longer identified as an acute disease resulting in death. Instead, cancer is a chronic disease where long-term treatment implemented in outpatient settings and where continued care provided by a family caregiver in the home increase length of survival.

Unlike other chronic illnesses, "cancer" can actually be a variety of different diseases, some of which are quite common, but some of which are quite rare. Depending on the type and stage of cancer, an individual might require specialized care which involves complex medical treatments. A cancer patient's physical health may change drastically during the course of the disease. Health status may not necessarily progress from good to fair to bad, but may fluctuate a great deal in a variety of ways.

Thousands of family members provide care to a chronically ill family member in the home. These families may face complex and various changes in family structure, in financial status, and in the patient's mental, emotional, or physical health. Family members may be required to provide care for long periods of time, often years, on a daily basis, sometimes for many hours a day. Due to the complex nature of the disease, patients and families require an extensive knowledge base and an information retrieval support system.

The information age in which we live offers a variety of linkages to community, state, and federal support for cancer patients and their family caregivers. Listed below are a selection of the many, many resources available by telephone or the Internet.

Telephone-Based Support Cancer

Care, Inc. maintains a toll-free counseling line (1-800-813-HOPE) for cancer patients and their families. Counseling is available in English, Spanish, and Yiddish. Cancer Care, Inc. offers special programs designed to meet the needs of children, adolescents, the elderly, African-Americans, Hispanics, AIDS patients, cancer survivors, and the homebound.

The National Cancer Institute maintains a toll-free Cancer Information Service (1-800-4-CANCER). The CIS provides accurate, up-to-date information in English and Spanish on almost all aspects of cancer to patients, families, and physicians.

Internet and World Wide Web-Based Support

Questions can be e-mailed to the Cancer Information Service at: cis@icic.nci.nih.gov.

The University of Pennsylvania Cancer Center Resource (Oncolink) is available via the World Wide Web at http://www.oncolink.upenn.edu/. Journals available on-line through Oncolink include: CA: A Cancer Journal for Clinicians, Cancer Control, and the Cancer Journal. Also available on-line at Oncolink is current cancer related news, research findings, and information. Financial issues patients and families may face are discussed, a user may browse through or share personal experiences (essays, poems, etc.), and research on specific types of cancer can be done on-line.

LARG* Health's site offers a great deal of general and specific cancer-related information, a list of toll-free support and information telephone numbers, and a list of links to other on-line organizations and information and is available at http://johns.largnet.uwo.ca/largh/patients/cancer.html#general.

CancerNet (maintained by the National Cancer Institute at http://www.cancer.gov/cancer_information/) offers on-line information to patients and the public. "PDQ's" or "Patient Data Queries" are retrievable at the site. PDQ's offer information on specific types of cancer, detection and prevention, new treatments, and the role of genetics in certain types of cancer. Also available are pamphlets to print or download, including: "Taking Time," "Helping Yourself During Chemotherapy," and "Get Relief from Cancer Pain."

Policy Implications:

• Alternative methods of extending support and information to cancer patients and their family members (such as toll-free hotlines and web sites) should be supported by state and federal funds.
• Making available a variety of resources and support will decrease reliance on the formal care system, enhance understanding and feelings of competency for patients and caregivers, and allow for better informed health care consumers.

Sources: Bull, M., Maruplema, G., & Luo, D. (1995). Testing of a model for post hospital transitions of family caregivers for elderly persons. Nursing Research, 44(3), 132-138. Stommel, M., Given, B., Given, C. W., & Collins, C. (1995). The impact of the frequency of care activities on the division of labor between primary caregivers and other care providers. Research on Aging, 17(4), 412-433. Research supported by Family Home Care for Cancer -- A Community-Based Model, grant #RO1 NR01915, funded by the National Center for Nursing Research. The American Cancer Society home page (http://www.cancer.org).