Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Kathy Steligo
That’s how callers describe the support and information they received from our confidential, toll-free telephone Helpline during its first year of operation.
A collaboration between FORCE and the Abramson Cancer Center of the University of Pennsylvania, the volunteer-staffed program was launched in December 2003. It is the first and only helpline devoted to providing support, resources and referrals for anyone concerned with hereditary breast and ovarian cancers.
A recent survey showed 95% of individuals who called the Helpline were satisfied with their overall experience, while 89% were “highly” satisfied.
The Helpline’s success reflects the commitment and abilities of the volunteer staff, as well as their comprehensive training. All twenty-five volunteers are primed to actively listen, understand the feelings callers express, and gently probe to discover how they can best serve and support those who call.
Most callers are women concerned with the risk of breast and ovarian cancers because of their family history. Many are unaware of genetic counseling or confused about genetic testing. Others are anxious or fearful about their potential cancer risk because they’ve just discovered they carry a BRCA gene mutation, or want to know about options for increased surveillance.
“Many people call because they don’t have a cancer center nearby and don’t have access to the Internet,” explains Pamela Shapiro, Ph.D., who manages the Penn research effort.
Callers are often matched to a volunteer with similar history. The power of this peer counseling is the core of the Helpline experience. “All of our volunteers have been through genetic counseling. Because they’ve lived through the fear and uncertainty of increased risk, they impart a sense of trust that comes from shared experience,” says Shapiro.
For some, Helpline contact evolves into a personal discovery process. Conversations that begin as a quest for information often lead to an outpouring of emotional issues as women respond to the understanding voice on the other end of the line. Frequently individuals who have no other outlet to express their fears actually acknowledge their concerns for the first time.
“Often people don’t know where to turn. They tell us they feel so alone with the issue of risk. I listen to each one’s concerns and assess how I can best help that individual,” says Nancy Faidley, a volunteer since the Helpline began. “I’m a 411 information service for people who are curious or fearful about hereditary cancers. But in equal measure, I provide kindness and understanding, an emotional warm blanket.”
Beyond a sympathetic ear, callers receive practical information as well. While volunteers stop short of offering medical advice, they share experiences and answer general questions about genetic counseling and testing. They also refer women to health professionals who can help them make informed decisions about their own health care.
The caller satisfaction expressed in the survey is shared by the volunteers. “At the end of the day, I’m drained from the calls, but I’m also fulfilled,” says Faidley. “It’s an amazing feeling to know you’ve helped someone else.”
How to Reach the FORCE Helpline
Callers may leave contact information during out-of-hours.
How to Become a Helpline Volunteer
Contact Sue Friedman
The University of Pennsylvania and FORCE presented a poster at the Society of Behavioral Medicine’s annual conference in April 2005. The poster reported responses from a survey conducted on callers to the helpline. The majority of callers (89%) reported complete satisfaction with the outcome of their call, 93% reported that they would recommend the Helpline to others, and 30% reported contacting a healthcare specialist related to risk management following their Helpline call.