Caregiver Organizations
National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Its web site offers publications and other resources on caregiving.
National Family Caregivers Association is an organization for family caregivers that provides caregiving information, connections to other caregivers, and advocacy. NFCA holds workshops for caregivers on effective communications.
Well Spouse Association is a national membership for husbands, wives, and partners of chronically ill patients. They produce a quarterly newsletter (Mainstay), host local support groups and workshops, facilitate one-to-one mentoring, and offer active online forums. They also facilitate respite weekends for their paying members.
Caremanager.org, the web site for the National Association of Professional Geriatric Care Managers, provides a search service for referrals to professionals in specific areas.
General Cancer Organizations
American Cancer Society is a national, community-based organization that focuses on research and education, but also provides some patient services.
American Institute for Cancer Research is a national organization focusing on the relationship between nutrition and cancer. They fund research and offer brochures and other educational materials for the public.
- 800-843-8114
- www.aicr.org
CancerCare is a national organization that helps cancer patients and caregivers find support and information. They offer free one-to-one counseling, online support groups, and group educational sessions over a toll-free line.
Government Agencies
National Cancer Institute (NCI) is the U.S. government agency responsible for supporting and conducting research on cancer. Its many services include:
- Cancer Information Service (CIS) telephone information hotline in English or Spanish, 800-4-CANCER (TTY: 800-332-8615)
- www.cancer.gov
- LiveHelp confidential online chat with a cancer information specialist on cancer or smoking cessation (Monday–Friday, 9 AM–11:00 PM Eastern time)
- Physicians Data Query (PDQ) database contains the latest information about cancer treatment, screening, prevention, genetics, supportive care, and clinical trials
National Institutes of Health (NIH) web site offers health information, including information on federal research and clinical trials.
National Center for Complementary and Alternative Medicine (NCCAM) is the U.S. government agency that supports research and provides information on the use of complementary and alternative approaches to illness.
- 888-644-6226
- 866-464-3615 (TTY)
- nccam.nih.gov
- LiveHelp confidential online chat with an information specialist
- (Monday–Friday, 8:30 AM–5:00 PM Eastern time)
PubMed provides access to millions of research citations and abstracts from peer-reviewed medical journals. The PubMed database can be searched using:
- http://www.ncbi.nlm.nih.gov/sites/entrez
Food and Drug Administration (FDA) is the Federal agency responsible for ensuring that food, drugs, cosmetics and medical devices are safe and effective. The FDA's Cancer Liaison Program works directly with cancer patients and their advocates to answer questions about the drug approval process, cancer clinical trials and patient access to investigational therapies.
Centers for Medicare and Medicaid Services (CMS) provides insurance, including prescription drug coverage, through the Medicaid and Medicare insurance programs and policies. CMS also regulates laboratory testing, certifies health care facilities (including hospitals), and develops policies to improve the quality of health care.
- CMS Headquarters: 877-267-2323
- Medicare Service Center: 800-MEDICARE (English or Spanish)
- www.cms.hhs.gov
- E-Health feature: Allows doctors to e-prescribe medications directly to the pharmacy, get access to secure electronic records, and allow patients to update their personal health records through the web
HealthFinder is a consumer-oriented web site covering a wide range of health-related topics. It is sponsored by the U.S. Department of Health and Human Services.
Social Security Administration (SSA) is the Federal agency that administers retirement and disability benefits, Supplemental Security Income, and Medicare.
Books for Caregivers
There are many, many books that are useful for cancer caregivers. Here are just a few to get you started.
A Caregivers Survival Guide: How to Stay Healthy When Your Loved One is Sick, by Kay Marshall Strom (Intervarsity Press, 2000).
Caregivers Handbook, edited by Deni Brown (Visiting Nurses Association, 1998).
Caregiving, by Peter S. Houts, PhD and Julia A. Bucher, RN, PhD (American Cancer Society, 2000).
Handbook for Mortals: Guidance for People Facing Serious Illness, by Joanne Lynn, MD and Joan Harrold, MD (Oxford University Press, 1999).
Home Care Guide for Cancer: For Family and Friends Giving Care at Home, edited by Peter S. Houts, PhD (American College of Physicians, 1994).
Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, by Cappy Capossela and Sheila Warnock (Simon & Schuster, 1995).
Who Cares, A Loving Guide for Caregivers, by Dee Marrella (DC Press, 2000).