A Community-based Workbook for Helping Rural Cancer Patients

Institution: Stanford University
Investigator(s): Cheryl Koopman, Ph.D. - Mary Anne Kreshka, M.A. -
Award Cycle: 1997 (Cycle III) Grant #: 3AB-1301 Award: $58,512
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

This is a collaboration with: 3AB-1300 -

Initial Award Abstract (1997)
Women diagnosed with breast cancer deserve immediate and continuing education and emotional support. When a woman is newly diagnosed with breast cancer, she is faced with extremely difficult decisions about her treatment. Often she must make these decisions quickly, without knowing much about the long-term effects of these choices, and while trying to cope with the fact that she has a life-threatening illness. When a woman is nearing the end of her treatment for breast cancer, she must face the prospect of living day-to-day with the uncertainty of whether her cancer will return.

In many communities, support groups have been developed by breast cancer survivors or cancer treatment centers to address these needs. In rural counties, however, many women who would like to participate in support groups live too far away or do not have reliable transportation. To respond to this need La Loba, a grass roots breast cancer support group in Nevada County, plans to create a user-friendly workbook/journal that provides facts, figures and personal experiences by other women who have been diagnosed with breast cancer. This workbook/journal, entitled "One in Eight", will include such topics as how to relate to doctors and medical technicians, how to talk to family and friends, how to cope with hair loss, energy loss, and other side-effects of chemotherapy. It will include humor and space for personal reflection. Information about local and regional resources, such as books, organizations and public agencies, will help direct women in their search for education about breast cancer and its treatment. The theme of the book will be to encourage and support women taking charge of their lives, being informed of their choices, and participating actively in their treatment.

Women from this local support group have teamed up with researchers from the Stanford University School of Medicine to form the Sierra-Stanford Partnership. This partnership, between rural breast cancer survivors, rural care providers and researchers specializing in supportive interventions for cancer patients, plans to develop and test the helpfulness of "One in Eight" by offering it to breast cancer patients in Nevada, Sierra, Amador, Placer, and Eldorado Counties in the Sierra Foothills. The rural community partners will write the workbook and will interview patients to receive feedback about the workbook. The research team will determine whether "One in Eight" helps women to better cope with and adjust emotionally to their cancer, and to make better breast cancer treatment choices.

The hope of the Sierra-Stanford Partnership is 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 make the best possible breast cancer treatment choices.


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.

Psychosocial intervention for rural women with breast cancer: The Sierra-Stanford Partnership.
Periodical:Journal of General Internal Medicine
Index Medicus: J Gen Intern Med
Authors: Angell KL, Kreshka MA, et al, and, Koopman C
Yr: 2003 Vol: 18 Nbr: 7 Abs: Pg:499-507