Offering free professional support and education to both patients and caregivers

By Christine Contillo, RN, BSN
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For most people, the diagnosis of cancer is frightening. But information is power, and since 1944 CancerCare has tried to soften the blow by offering educational programs and free professional support for the individual patient, family, friends and caregivers. Unique to this national nonprofit agency is the fact that it is staffed by 45 trained oncology social workers that understand that having cancer means something different to each person. They attempt to answer individual questions and conduct in-depth counseling in a number of innovative ways. During the initial period, the patient is often overwhelmed by new medical terminology and treatment options. He may be simultaneously struggling with physical demands, or financial setbacks and insurance problems. CancerCare tries to toss an emotional lifeline to 90,000 clients annually.

Education and information has always been at the heart of CancerCare's service. Years ago shame kept many patients from discussing their cancer diagnosis, thereby preventing them from sharing valuable information that could make a difference in decisions about their own care. In addition to telephone counseling and their in-house group sessions and counseling, CancerCare operates telephone education workshops that use physicians, oncology nurses and social workers to discuss topics like side-effect management and cancer survivorship.

Technology Widens the Support Network
Most recently, use of the Internet brought an explosion of educational possibilities, and Beth Friedman, senior program coordinator of online services, and clinical social worker at CancerCare, was visionary in opting to use online services as an adjunct to the existing in-person and telephone counseling groups. Not all patients are physically or emotionally able to attend group sessions and, in 1996, Friedman realized that online use meant that CancerCare could facilitate support groups anywhere throughout the country. With the use of Internet services, time zones would no longer stand in the way of communication between members.

Initially, postings on three open bulletin boards offered a forum for patients needing general cancer information, post-treatment support and bereavement assistance. Those early groups mushroomed within a few years into 28 more focused groups that are member-only, using passwords that now address specific cancers, caregiver issues and bereavement. Even young people have a group of their own to deal with cancer issues on their own developmental level. Group membership is rolling, with the members screened and group size limited to 30 during a six-month period. A social worker is assigned to moderate to ensure that the group's needs are met and to drive the topics forward. They act as a resource to any patient in crisis and can reach out when they sense a problem. In addition, social workers are assigned to each member enrolled in order to evaluate and facilitate any other services appropriate, such as application for financial aid. Although the Internet allows some social workers to work from home, all have had previous experience with CancerCare's services.

The online group has a number of things to recommend it: Members can read and post when they are available, even in the middle of the night, and they aren't limited to a timetable that is convenient for everyone else. Because each group may have members spread across the nation, treatments at different facilities can be compared. Members get to know each other well through the postings and support each other during post-treatment. CancerCare offers suggestions for the time-limited groups called “netiquette.” Rules include not typing in caps, which may be construed as shouting, and posting your thoughts often in order to keep the group cohesive. Members are urged to be considerate of others when using humor or sarcasm because it doesn't easily come through in print.

Checking in with the Forums
In addition to the 28 member-only groups, CancerCare continues to have open forums that anyone can access. Using these, registered users may pose questions or offer suggestions to each other and will be emailed when there is a response. At the most recent count there were 4,286 active participants. The data demonstrates that these users are usually well-educated and middle age or older, which coincidentally reflects the age at which most people receive a cancer diagnosis. Although there are more women than men, there seems to be a fairly even split between those who are caregivers and those who are patients. There are groups for young adults with cancer, for parents of children with cancer, and even for parents who have lost children to the disease. The focus of new groups often develops from requests or suggestions from former participants, and sometimes from postings in the general forum, which are always screened by the social workers. During the six-month period, groups are asked for feedback about topics so that CancerCare may keep up with what their clients need.

According to Friedman, at the end of the six-month period members are offered an opportunity to share personal information, including their email address, so that they can stay in touch. A member of one group made a patchwork book filled with memorable quotes from the other group members that they all treasured, and Friedman knows that the members of at least one group who lived within a few hundred miles were able to meet in person.

Although CancerCare has offices on the East Coast in New York, New Jersey and Connecticut, Friedman says that even without advertising they receive calls for help from California and Texas, places where oncology social workers at the larger hospitals and cancer centers are already familiar with their services. The nature of the organization means that they are able to help anywhere, and are happy to reach out. Their motto is “The Comfort of Help, the Power of Hope.” Nurses can certainly feel comfortable referring both cancer patients and their families to the agency, and CancerCare hopes that the support they will receive will more than meet their needs. Nurses needing additional information may call (800) 813-HOPE (4673) or visit their web address,, which includes a page on making professional referrals.

Christine Contillo, RN, BSN, has worked as a nurse since 1979. Christine has written extensively for various nursing publications, as well as
The New York Times.

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