A Community-Based Workbook for Helping Rural Cancer Patients
Sierra Nevada Memorial Hospital Cancer Center
Final Report (1999)
When women are newly diagnosed with breast cancer, they are faced with extremely difficult decisions about their treatment while trying to cope with the fact that they have a life-threatening illness. They deserve to have as much support and information readily available to help them cope with having breast cancer as possible.
To help respond to this need, La Lobe, a grass roots breast cancer support group in Nevada County, teamed up with researchers from the Stanford University School of Medicine to form the Sierra-Stanford Partnership. This partnership’s main goal has been to create and evaluate the impact on rural women recently diagnosed with breast cancer of receiving a user-friendly workbook-journal that provides facts, figures and personal experiences of other women who have been diagnosed with breast cancer. The hope of the Sierra-Stanford Partnership is to help to reduce the human and economic costs of breast cancer by reaching rural women who do not have access to current forms of education or support, and help them to make the best possible breast cancer treatment choices.
The Sierra-Stanford Partnership has succeeded in meeting the three aims of our pilot study. First, we recruited and assessed the needs of 100 rural women recently diagnosed with primary breast cancer so that we would become better informed about their needs in order to refine the workbook–journal. Second, we developed the journal, entitled One in Eight,” which addresses such topics as how to relate to doctors and medical technicians, how to talk to family and friends, and how to cope with hair loss, energy loss, and other side-effects of chemotherapy.
The journal includes poignant stories and provides space for personal reflection, as well as information about local and regional resources to help direct women in their search for education about breast cancer and its treatment.
Third, we evaluated the effects of this workbook-journal on distress and coping among women with breast cancer. We found that women who were randomly selected to receive the journal compared with women who did not receive it, showed a significantly greater reduction in their traumatic stress symptoms related to having cancer. They also experienced significantly greater increases in fighting spirit toward having breast cancer as well as greater decreases in feeling fatalistic regarding their breast cancer. We want to refine the workbook-journal to better address the concerns of rural women as well as other potentially socially isolated women living with breast cancer, including those who are physically disabled, of ethnic minority background, of lesbian sexual orientation, and/or who are aged (over 65 years old). We hope to evaluate its impact using a Health Maintenance Organization (HMO) setting for distributing the intervention to these women.