Coaches’ aid breast cancer patients

Not a one-size-fits-all’ apprach

Education for breast cancer patients is not a "one-size fits-all" package, but must be tailored to meet the needs of each woman. Women diagnosed with breast cancer have had different life experiences, have varying social support systems, and differing psychological responses to a crisis.

In addition, information must be readily available when the patient needs an answer or is ready to learn. To address those issues, Judy C. Kneece, RN, OCN, created a program to train nurses to serve as case managers and coordinate the clinical, educational, and support needs of breast cancer patients.

The 40-hour training program certifies registered nurses as breast health specialists, prepared to meet the diverse needs of women diagnosed with breast cancer. "Women haven’t had Breast Cancer 101,’ so we are the prepared coach explaining what is done first, what will happen second, and what decisions the patients need to make now. We help her decipher all the complicated information that has been thrust upon her," explains Kneece, president of Educare, based in Columbia, SC.

The goal of the program is to anticipate the needs of the patient before she has to ask by providing continual education and support throughout the continuum of care. Breast health specialists are trained to help women maneuver the complicated maze of medical decisions and care, as well as manage their own recovery.

For example, the specialist provides tips for patients about how to keep hair from being all over the house and how to keep their head warm while undergoing chemotherapy. She also connects patients with beneficial programs throughout the community such as the Atlanta-based American Cancer Society’s Reach to Recovery program.

During training nurses are given the basic information about the physical, psychological,
and social care of the patient, and then provided instruction on how to coordinate a program at their hospital using their facility’s experts, such as the nutritionist and physical therapist as well as community resources. The program is designed to look at the whole patient. "We have been addressing the physical issues for a long time, but not the whole care of the patient, which includes psychological and social issues. That’s what this program does," says Kneece.

Training techniques include slides, demonstrations, student teacher interaction, and videotapes. Nurses watch professionally made films of the latest surgical procedures and other treatment options so that they can explain it to their patients. Curriculum includes:

• The anatomy and physiology of the breast.

• Benign breast diseases.

• Breast pain.

• Breast discharge.

• MammaCare clinical breast exam.

• High-risk assessment and counseling.

• Breast cancer pathology and clinical management.

• Male breast cancer.

• Sexuality issues after breast cancer.

• Pregnancy and breast cancer.

• Support groups and program development.

• Spiritual needs of patients.

• The terminal patient.

• Community outreach programs.

• Developing specialty clinics.

• Multidisciplinary conference organization.

Each health care facility determines what will work best with their patients. For example, one breast center opened a boutique where women could have their head shaved and are fitted with a wig so they don’t have to go through the process of having their hair fall out. Other facilities embrace the multidisciplinary care conferences where all disciplines involved review the case before treatment to offer suggestions.

Suggestions for care might include involvement in a clinical trial for which the patient is eligible or the team might identify a social support need. For example, a patient who lives alone could require aggressive chemotherapy and therefore need the help of a nurse aid to assist with such chores as housework.

Kneece became aware of the need for a program that offered comprehensive education and support when her sister-in-law was diagnosed with Stage 4 breast cancer. She founded Educare in 1994, which offers on-site training at individual facilities or open training at regularly scheduled classes.

Several books and educational materials based on data collected from focus groups also are available. "Our books are written to give guidance," says Kneece. (For information on written materials available through Educare, see list, below.)