Survivor Volunteer Program Provides Support for Newly Diagnosed Patients

August 1, 2001

BALTIMORE-Women undergoing breast cancer treatment at the Johns Hopkins Breast Center receive extensive emotional support from breast cancer survivor volunteers, thanks to an ongoing program there. Lillie Shockney, RN, MAS, director of education and outreach, described the development and implementation of the program at a poster session at the Oncology Nursing Society’s 26th Annual Congress.

BALTIMORE—Women undergoing breast cancer treatment at the Johns Hopkins Breast Center receive extensive emotional support from breast cancer survivor volunteers, thanks to an ongoing program there. Lillie Shockney, RN, MAS, director of education and outreach, described the development and implementation of the program at a poster session at the Oncology Nursing Society’s 26th Annual Congress.

The program began in 1998 after a group of breast cancer survivors expressed interest in volunteering and assisting other patients. Today, the program has a network of more than 70 members who perform a wide range of patient support activities and community outreach.

The initiative that patients find most beneficial, Ms. Schockney said, is called Survivors Helping Survivors. Newly diagnosed breast cancer patients are matched with a survivor volunteer who provides emotional support throughout the treatment process—and well beyond if the patient desires. Patients with a specific treatment plan are matched with a survivor who has undergone the same treatment.

Volunteers also may participate in other special projects designed to make the treatment experience less traumatic. In one project, volunteers prepare gift bags and baskets filled with feminine products, such as bubble bath, body lotions, aroma therapy, poetry books, mastectomy supplies, and gift certificates for flowers, makeovers, and cosmetics. Patients receive their baskets in the recovery room immediately after surgery.

Other activities that volunteers may choose to participate in include community breast health and breast cancer awareness programs, activist/lobbyist efforts, fundraising, and staffing the survivor hotline.

Ms. Shockney’s presentation outlined the necessary ingredients for establishing a similar program. A successful launch of a survivor volunteer program, she said, requires an institutional blessing, input from nurses and social workers on patients’ needs, a survey of patients concerning their perceived needs, and the selection of a nurse/survivor leader to oversee the program.

Some Selection Criteria for Volunteers in a Breast Cancer Survivor Program

All ages, races, religions, and ethnicities

All stages of disease

Completed treatment at least 1 month earlier, and deemed physically and mentally well by physicians involved in their care

Good communication skills

Recommendation by at least one member of the health care team

Commitment to participate in one or more programs/activities within the program

The nurse-survivor leader is responsible for determining the responsibilities of volunteers and for making assignments. Volunteers, in turn, agree to adhere to established policies and procedures, attend quarterly volunteer dinner meetings, track and record monthly volunteer hours accrued, maintain strict patient confidentiality, offer no medical advice (refer patient back to health care team), and perform specific tasks and functions within the designated time frame (such as contacting patients within 24 hours of referral and committing to stay in touch at regular intervals).

Volunteers receive training in their areas. Training might include role playing and on-site observation for Survivors Helping Survivors; instruction at a local crisis center for volunteers working on the survivor hotline; or attending the National Breast Cancer Coalition’s Project Lead course for those participating in advocacy/lobbying efforts.

The survivor volunteer leader is responsible for nurturing volunteers and recognizing their efforts, overseeing a quarterly newsletter (which updates volunteers on all activities and invites them to sign up for new activities), educating volunteers about new treatment advances, addressing training needs, tracking all program activities, and reporting results.

Ms. Shockney discussed the added benefits of the survivor volunteer program: Physicians trust the volunteers they have recommended; the program leader is able to provide more detailed information about a patient’s condition, family support, and special needs than can be provided through the traditional Reach-to-Recovery program; survivor volunteers know and understand the health care team well; survivor volunteers recruit new volunteers; and volunteers are an excellent marketing tool for the institution.