Sociocultural, Behavioral and Psychological Issues Relevant to Breast Cancer: The Human Side
While most research on breast cancer is focused on the biology of the disease, we cannot forget the social and cultural contex in which women who are faced with breast cancer live and make decisions. These aspects of human life influence health-related behavior, quality of life, and the biological response to breast cancer. It is the goal of this Priority Issue to explore these social-cultural factors to allow us to impact the human and economic cost of breast cancer.
Conclusions
Shoshana Levenberg, B.S.N., of the Charlotte Maxwell Complementary Clinic, and Ellen Levine, Ph.D., M.P.H., of the California Pacific Medical Center Research Institute, received one of the first Community-Initiated Research Collaboration Pilot Awards. This investigation explored the benefits of a retreat for low-income women with breast cancer. The aims of the project were to identify the needs of low-income women with breast cancer that are not being met by the community at large (e.g., medical care, social support services, transportation, food, child care), and to determine the acceptability and impact of a retreat designed for low-income women with breast cancer on mood, helplessness/hopelessness, feelings of self-efficacy, and self-determination. The first phase of the project was to delineate the problems end challenges faced by low-income women with breast cancer. This was accomplished through a working group of low-income women with cancer, who defined the problems that they faced. After these problems were defined, a three-day retreat was designed by this group of women. The second phase of the project included the retreat itself. Forty-six women participated in a three-day retreat designed by low-income women with breast cancer. The retreat included workshops and experiences with alternative therapies. At the end of the retreat, women felt that they were more able to cope with problems related to their cancer. The women felt less psychologically distressed (e.g., less anxious, depressed, confused, fatigued), at the end of the retreat than they had at the beginning of the retreat. These differences were statistically significant. The women were contacted two months after the retreat, and asked about their ability to cope with the problems defined initially, and about their mood state. Two months after the retreat, the women felt that their problems were less than before the retreat, and the increased positive mood continued.
Research in Progress
One well-known study of supportive/expressive group therapy showed an extended survival of about 18 months in metastatic breast cancer patients, doubling the survival time of a matched (control) group of patients not receiving this therapy. Janine E. Giese-Davis, Ph.D., at Stanford University, set out to try to understand the possible therapeutic and physiological mechanisms underlying this surprising finding. She wanted to determine if change in emotional expression, amount of talk-time, or emotional control are therapeutic mechanisms related to survival, immune and endocrine function, and well-being in metastatic breast cancer patients who participate in a year of this group therapy.
Dr. Giese-Davis developed an extensive system of coding the study patients' emotional responses, and measured a hormone (cortisol) to judge levels of stress. Preliminary results indicated that long moments of indirect or constrained anger expressed during the first few months of group therapy strongly predicted an earlier death—the mean survival time was doubled for women who do not constrain anger (3.7 years compared with 1.8). This was the first behavioral study in a relatively naturalistic setting which linked bottling up anger with shorter survival.
Preliminary results also suggested that women who have a healthy, responsive, stress-hormone level when they enter the study appear to live longer if they increase the duration of moments of genuine positive emotional expression over time; or increase the duration of moments of expressing fear, direct anger, and sadness. Furthermore, women who have a flat or unresponsive stress hormone (cortisol) level do not increase their survival through emotional expression in the group. They appear rigid in their emotional coping style in a way not modified by the group. These results indicate that these women may benefit from an additional or quite different kind of therapy and that future research should select those with poor stress-hormone responsivity and test whether such women's survival time could improve using an intervention suited to their rigid coping style.
Women with breast cancer require immediate and continuing education and emotional support as part of their comprehensive treatment. A woman newly diagnosed with breast cancer is faced with difficult decisions about her treatment. Often she must make these decisions quickly and with a lack of information about the long-term effects of these choices, and at the same time cope with the awareness of a life-threatening illness. As a woman nears the end of her treatment for breast cancer, she faces the prospect of living day-to-day with the uncertainty of whether her cancer will return. To address such concerns, support groups have been created with breast cancer survivors or cancer treatment centers in many California communities. In rural counties, however, many women who would like to participate in support groups often live too far away or do not have reliable transportation. In response, La Loba, a grass roots breast cancer support group in Nevada County, initiated with Sierra Nevada Memorial Hospital Cancer Center (Mary Anne Kreshka, M.A.) a study funded by a CIRC Pilot Award in partnership with researchers from the Stanford University School of Medicine (Cheryl Koopman, Ph.D.).
The Sierra-Stanford Partnership responded to the needs of rural women with breast cancer by developing and piloting an innovative community-based intervention which is inexpensive, accessible to rurally isolated women, and effective in reducing psychosocial distress and improving coping skills. This user-friendly work-book journal created by community members includes personal experiences of rural women diagnosed with breast cancer, together with sections on exploring and making sense of feelings, strengthening family and social supports, developing partnerships with doctors, and taking charge of treatment decisions. Information about local, state and national resources, such as books, organizations and public agencies helps direct women in their search for education about breast cancer and its treatment. To date, 87 women have been recruited into the project and interviewed at baseline and 60 3-month follow-up interviews have been conducted. Participation rate and follow-up compliance has been high with none of those initially interviewed refusing to complete follow-up assessment. Results from initial findings reveal the success of the work-book journal in reaching women in rural areas and suggest that it may have an impact on reducing traumatic stress by increasing fighting spirit and reducing negative social support and disengagement in coping with breast cancer.
Recently Initiated Research
In 1998, CBCRP awarded 4 grants to study aspects of breast cancer that affect women personally. A team of scientists (Joan R. Bloom, Ph.D., Marion Lee, Ph.D., and Susan L. Stewart, Ph.D., from the University of California, Berkeley and San Francisco campuses, and the Northern California Cancer Center respectively) will test a telephone counseling strategy for women who are at higher than average risk for breast cancer. In the first phase of the project, a telephone counseling protocol will be field tested with 400 women. The women involved are sisters of a population-based group of women diagnosed with breast cancer at age 50 or younger, of whom approximately 30% are Asian, Latina, or African American. In the second phase of the project, the telephone risk counseling protocol will be implemented in the Cancer Information Service (CIS) of Northern California and Nevada with 400 women calling about breast cancer who are not diagnosed patients.
Rose C. Maly, M.D., M.S.P.H., in the Department of Family Medicine, University of California, Los Angeles will look at older women's illness experience of breast cancer, exploring how it differs from younger women's in the way they are evaluated and treated by the health care system, and in their personal reactions to and needs resulting from the diagnosis. The study is designed to assess older breast cancer patients' illness experience, specifically in terms of psychosocial, informational, and health needs arising from the diagnosis, how and whether these needs are met by health care practitioners, and how health, functioning, and quality of life are associated with the degree to which these needs are met. On the basis of these findings, the study will continue with development and feasibility testing of potential interventions to improve emotional, social, and informational support given to newly diagnosed older breast cancer patients by physicians and their staff.
Nangel M. Lindberg, Ph.D., in the Department of Psychiatry at the University of California, Los Angeles School of Medicine will look at some of the difficult issues facing women at familial risk for breast cancer. For these women, early detection and adherence to medical recommendations are particularly critical; however, studies have shown that family history of breast cancer is associated with emotional reactions that may interfere with desirable health practices, including non-participation in prevention and screening programs. The proposed study seeks to:
- examine the factors associated with attendance to multidisciplinary preventive programs such as the UCLA High Risk Clinic;
- examine the factors that may affect adherence to medical recommendations and beneficial health behaviors; and
- assess compliance and Clinic attendance for different groups of at-risk women.
The ultimate goal of the proposed study is to aid in the development and modification of programs that would facilitate and improve access to services for women at familial risk for breast cancer, fostering the development of beneficial health behaviors, including preventive measures and early detection screenings.
Finally, a team of agencies that provide psychosocial support services to women with breast cancer (Mitch Golant, Ph.D., of The Wellness Community, Carol Kronenwetter, Ph.D., of the Cancer Support Community and David Spiegel, M.D., of Stanford University) will study three different models of support groups in an attempt to understand how the various elements of these services help women and to understand their physiological effects. The study is designed to evaluate the strengths and weaknesses of two different community-based support group interventions for breast cancer patients. The interventions will be compared with a model developed in the university setting. The team will study which aspects are most effective, and who benefits the most. This proposal is based on a year-long collaborative effort with The Wellness and Cancer Support Communities, two major cancer support programs providing group interventions.
Careful methods will be applied to understanding the effectiveness of two well-established support group programs in Northern California. This will allow the team to refine and improve group interventions, and better match specific ones to those who will most benefit.
There is a growing body of evidence that participating in support groups improves the quality of life of breast cancer patients. The existence of community support programs provides a means of offering such effective support rapidly and inexpensively, making it available to diverse populations of breast cancer patients. The combination of this community-based effort and university research program provides the potential for improving all of these programs and providing evidence to support health policy changes. This could lead to programs of group support throughout the state of California, offering comfort, guidance, and support to all women coping with breast cancer.
