Socio–cultural, Psychological & Issues: the Human Side

The research funded in this cycle addresses the fact that the trauma of breast cancer impacts not only the life of the individual patient but her family and other loved ones as well. And furthermore, its impact is often felt even in the absence of the disease: in the anxieties and fears that surround screening and clinical follow-up of 'abnormalities'; and, in the uncertainties and fears of mothers wondering whether they have a predisposition for the disease, or have passed such a predisposition onto their daughters.

Since its inception, the BCRP has been particularly concerned that research into the socio-cultural, behavioral and psychological aspects of breast cancer receive an equitable share of support. This was the second year that targeted funding in the form of RFAs (Requests for Applications) was available for such research, and five RFA studies were funded. The BCRP funded 75% of the applications in this priority issue/award type. We hope that this funding success will encourage researchers in California to look to the BCRP as an important funding source to help increase their efforts to discover how best to help women improve the quality of their lives in the face of breast cancer and its threat, while their colleagues in the basic sciences strive to find how to prevent and cure the disease.

Seven studies look at various dimension of social support. The first three address social support related to issues of education and screening in special populations: African immigrants, Hmong Women (and Men), and survivor's of Hodgkin's disease. Yewoubdar Beyene will conduct an anthropological study to explore differences in perceived risk of breast cancer and related cultural factors in a sample of African immigrant women in order to make recommendations about what would and what would not be appropriate mechanisms to employ when interacting with African immigrant women about breast cancer risks, and early detection. Marjorie Kagawa-Singer, Mary Anne Foo and Sora Park Tanjasiri (co-PIs) will investigate whether, and what elements of, a culturally-tailored health promotion would best motivate the hard-to-reach Hmong population to be more aware of breast cancer screening issues and obtain mammograms. Steven Hancock will examine: the emotional impact of being notified of an increased risk of cancer due to prior treatment for Hodgkin's disease; whether risk notification leads more women to screening behaviors; and whether mammograms contribute meaningfully to identifying early, curable tumors in younger Hodgkin's survivors (who have a higher-than-average risk for breast cancer).

Nilsa Gallardo will look at the manner in which Latinas, who have been diagnosed with a breast abnormality suspicious for cancer, define and use social support during the period in which they are undergoing treatment and awaiting a final diagnosis. By developing an assessment tailored to Latina women, she hopes to measure the impact of social support on psychological well-being, and provide clinicians with information useful in identifying women at risk for emotional distress and potentially negative health-seeking behaviors.

Diane Estrin and Rani Eversley (co-PIs) will look at social support issues in the workplace. At present, little is known about: the relationship between the responsiveness of the workplace to women's needs after undergoing surgery and women's ability to return to work; possible ethnic differences in this factor (African American women appear to encounter more difficulties in their ability to return to work, as measured by the rate of return, three-months post surgery); or, about the relationship between return to work and quality of life among women who have undergone breast cancer surgery, or how this differs among ethnic groups.

Matthew Cordova and Morton Lieberman will look at organized support groups. Dr Cordova is interested in which specific aspects of the therapeutic group support process are the most important, especially among a group of women who have had some prior psychological trauma; Dr. Lieberman will explore the feasibility and effectiveness of the online support groups for women with breast cancer which are becoming more popular.

Three other studies, those of Jay Azarow, Beth Meyerowitz and colleagues, and Cheryl Koopman and Mary Anne Kreshka (co-PIs), will look at the personal and familial dimensions of support. Dr. Azarow will examine how it is that many women with breast cancer are able to elicit a commitment to the creative re-examination and pursuit of what is subjectively most important in their lives, and whether the ability to find positive meaning in illness is, in fact, a key predictor of psychological well-being and improved quality of life. Dr. Meyerowitz and colleagues will investigate how partners' reactions during the immediate post-treatment period relate to patients' quality of life, relationship adjustment, personal growth, and coping. With support from federally-supported research, they also intend to develop and evaluate a brief videotape intervention to prepare women for the transition from treatment to survivorship and to help partners understand the difficulties facing patients at the completion of treatment, so that their partners will be more likely to be able to provide helpful support. Koopman and Kreshka will also explore efficacy in self-support, specifically the extent and effectiveness of a workbook journal developed in a previous BCRP study. Women who may be psychologically, socially, or physically isolated will be targeted-an extension of the geographic isolation studied in the previous study.

Finally, Debra MacDonald and Joy Melnikow will examine how best to support women in personal decision-making, specifically with respect to cancer-risk assessment and risk-reduction. Dr. MacDonald will endeavor to learn more about women of diverse socio-economic status who are seeking genetic counseling. She will compare among women appropriate for counseling, those who choose to undergo counseling and and those who don't, measure impact of counseling, with aim of helping clinicians in referral decisions. Dr. Melnikow intends to develop a deeper understanding of how women eligible to take tamoxifen prophylaxis weigh risks versus benefits in their decisions.

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Community Research Collaborations – Pilot Awards


Returning to Work and Quality of Life After Breast Cancer

Diane R. Estrin, B.A.1 and Rani Eversley, Ph.D.2
1Women's Cancer Resource Center and 2University of California, San Francisco

Ethnic differences in the rates at which women have returned to work after undergoing breast cancer surgery have been observed in previous studies. African-American women return to work at a slower and decreased rate as compared with Caucasians. These differences have been attributed to ethnic differences in women's occupations, with African-American women being employed in more physically demanding work. Little is known, though, about the relationship between the responsiveness of the workplace to women's needs after undergoing surgery and women's ability to return to work. Secondly, little is known about the relationship between return to work and quality of life among women who have undergone breast cancer surgery, or how this differs among ethnic groups.

We will conduct a survey of 180 women to examine racial and other demographic differences in return to work and quality of life after breast cancer surgery. Equal numbers of African-American, Latina, and Caucasian women will be assessed. Women will be recruited from the Women's Cancer Resource Center's telephone hotline and other support services, as well as from other community locations.

Data will be entered and analyzed at the researcher partners' office at UCSF with consultation from UCSF statistical staff. Results from this research will be used to plan intervention research for this population as well as counseling, case management and advocacy.

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Community Research Collaborations- Full Research Awards


Breast Health Education Project for Hmong Women and Men

Marjorie Kagawa-Singer, Ph.D., M.N., R.N.1; Mary Anne Foo, M.P.H. 2; and Sora Park Tanjasiri, Dr.P.H. 2
1University of California, Los Angeles School of Public Health
2Orange County Asian and Pacific Islander Community Alliance

Breast cancer is the leading cause of cancer death in Asian American and Pacific Islander (AAPI) women, yet AAPI women have the lowest screening rates, in aggregate, of all ethnic populations (only 45% of AAPI women reporting that they have ever had a mammogram). Very little information exists on the breast screening and early detection practices of AAPIs. Although over 57 groups comprise the AAPI category, and they constitute 10.7% of the US population, only seven published manuscripts exist on four groups of AAPI women: Chinese, Vietnamese, Native Hawaiian and Cambodian women. No studies have been published on Hmong breast screening practices, and these women probably have the lowest screening rates of all AAPI women (25.6% ever having had a mammogram). This is the first intervention project that we know of to focus on Hmong women and breast cancer. Our goal is to test a more culturally competent and effective breast health program through two research questions: 1) Will the use of a culturally identified mode of health promotion, the enlistment of husbands and male community leaders, increase the use of breast screening and early detection practices by Hmong women? and 2) What elements of the tailoring process of breast cancer education outreach are required to motivate Hmong women to obtain mammograms compared to other hard to reach populations?

We will use two innovative strategies in this three-year project to reduce inequities in breast cancer outcomes and disseminate needed information to the community: 1) enlist the support of Hmong men in the community, thereby capitalizing on the cultural strengths of social support and decision making styles and the community's capacities to ensure their well-being, and 2) analyze the successful strategies of other programs in hard-to-reach ethnic minority populations and cross-cultural theoretical constructs in order to identify those culturally specific elements of an educational program that require tailoring for cultural congruence to increase effectiveness, and those universal strategies that could be implemented without change to develop more cost effective health promotion programs in the future. No published studies exist on breast cancer early detection practices among the Hmong. Our pilot data indicates that although Hmong women have among the lowest screening rates of any ethnic population in the US, they expressed a desire for more information, a desire to have the men included in education, and a willingness to go for screenings. We know of no published studies in any ethnic group that have used the strategy of enlisting the men or male leaders of sociocentric or familial cultural groups to promote the use of breast screening services for the early detection of breast cancer.

We will implement the study in three communities: two intervention communities and one comparison community. In year one, the team will design a culturally based intervention for women and men, develop the educational materials based on our previous BCRP-funded pilot study findings, and conduct baseline assessments of current community practices, screening rates, and breast health resources. In year two, we will implement the intervention in two communities. And in year three, we will conduct process and impact evaluations, and implement the intervention in the comparison community.

We hypothesize that there will be significant improvement in mammography, utilization of breast self-exam, and clinical breast exam due to our intervention, and the impact would be that subsequent programs in AAPI populations and other underserved populations could be designed with greater effectiveness and in a more cost effective manner.

Alternative Support for Rural and Isolated Women in an HMO

Mary Anne Kreshka, M.A.1 and Cheryl Koopman, Ph.D.2
1Sierra College and 2Stanford University

Women diagnosed with breast cancer require immediate and continuing education and psychosocial support. Support groups, the most common forum for providing these services, are unavailable to women in rural communities and are difficult to access for women in certain isolating circumstances. The Sierra-Stanford Partnership has developed and pilot-tested an alternative form of education and psychosocial support: a Workbook-Journal. This intervention: 1) is accessible to all women with breast cancer, particularly underserved, isolated and minority women; 2) is inexpensive, for women with limited resources; 3) provides a guide to breast cancer information and support sources; 4) offers a variety of active coping strategies for women isolated by geography, age, disability, or minority status; and 5) communicates emotional support to women newly diagnosed with primary breast cancer. Based on the findings from a BCRP-funded pilot study, in this three-year study we aim to: 1) evaluate the short and long-term effectiveness of the Workbook-Journal for improving psychosocial adjustment, increasing active coping, and improving emotional support in women newly diagnosed with primary breast cancer and receiving their treatment in an HMO; 2) improve breast cancer knowledge in women newly diagnosed with primary breast cancer in an HMO; 3) explore possible predictors of rural and isolated women who would benefit most from the Workbook-Journal; and 4) assess the effects of this intervention on the number of medical care phone calls and office visits.

We will recruit 200 women from the Breast Health Center in Kaiser, Sacramento, to participate in a randomized clinical intervention trial. Particular efforts will be made to recruit underserved, isolated, and minority women. Women will be randomly assigned to one of two conditions after a baseline assessment: Education (EDUC) or Workbook-Journal + EDUC (WKBK). Women will receive follow-ups at 3-, 6-, and 12-months. Use of psychosocial services will be tracked and frequency of medical phone calls and medical visits will be determined by chart review.

We hypothesize that women in the WKBK condition will show better psychological adjustment (lower post-traumatic stress disorder symptoms, less depression), more active coping (higher fighting spirit, less fatalism), and higher emotional support than women in the EDUC condition. We hypothesize that women in the WKBK condition will have more knowledge about breast cancer and treatment than women in the EDUC condition. We also hypothesize that women who have higher levels of post-traumatic stress disorder, depression and life stress and lower levels of social support at baseline, will show more improvement after receiving the Workbook-Journal than women with lower baseline levels of post-traumatic stress disorder, depression and life stress, and higher levels of social support. And, finally, we hypothesize that women in the WKBK condition will make fewer phone calls to their oncology providers and have fewer medical office visits than women in the EDUC condition.

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Socio-cultural- Request for Applications (RFA) Awards


Belief and Risks of Breast Cancer Among African Immigrants

Yewoubdar Beyene, Ph.D.
University of California, San Francisco

Although there are increasing concerns about addressing the cancer detection needs of ethnic minority groups in California, there are still significant gaps in our knowledge, especially about underserved ethnic populations. This is particularly true of African immigrant women. There are an estimated 603,705 African immigrants in the U.S., of which 244, 204 are females, the majority of whom live in the state of California. The major concern of health professionals is the disparity in breast cancer survival rates among women from minority and low-income populations. The changing demographics across the United States will continue to challenge health care providers to offer relevant and sensitive health care services to members of a variety of diverse groups. Failure to recognize and respond to these differences in beliefs and cultural meanings may create service gaps for significant segments of the population.

Studies show that women diagnosed with breast cancer in African countries seem to be a decade younger than their counterparts in the West, and the disease is most often advanced to stage III or IV at the time of diagnosis. These groups of immigrant women are the most challenging in that they come from societies where a routine checkup is unknown and medical care is the option of last resort. Failure to address what may be unique and a high risk predisposition to advanced breast cancer at diagnosis for this community is a serious oversight in breast cancer early detection in California. Clearly, then, these women are under-served and an urgent need exists to document African immigrants' health beliefs and understanding of breast cancer, and to devise culturally appropriate early detection, and treatment plans.

This anthropological study will explore differences in perceived risk of breast cancer and related cultural factors in a sample of African immigrant women. The overall aims of this anthropological research are to examine: 1) the cultural understanding of risk and the etiology of breast cancer among African immigrant women; 2) knowledge of breast cancer symptoms and screening guidelines; 3) cultural beliefs and attitudes of African immigrant women of body parts such as the breasts and their views on loss of body parts; and 4) using cultural consensus analysis, explore how strongly African immigrants agree or disagree among themselves as well as with other immigrants and underserved groups in California, in their beliefs about breast cancer risk, etiology, knowledge of symptom presentation, and screening guidelines.

The study design will involve focus group interviews with 20 key informants and an in-depth interview with 100 African immigrant women. The major analysis will be qualitative. In so doing, we will identify those culturally specific factors that influence understanding of breast cancer symptom presentation, and barriers to early detection in order to develop a model that will be generalizable to the larger population of African immigrant women in California. From such a model we can make specific recommendations about what would and what would not be an appropriate mechanism to employ when interacting with African immigrant women about breast cancer risks, and early detection. This will be vital for primary care providers serving these communities, as well as any project development for early detection and treatment services. Finally, the findings from this research will provide vital information specific to the group, and empower these immigrant women to develop culturally appropriate guidelines for community education.

Breast Cancer Screening in Women Surviving Hodgkin's Disease

Steven L. Hancock, M.D.
Stanford University Medical Center

Individuals who have developed Hodgkin's disease have an 85 per cent to 90 per cent chance of being cured of their cancer. However, survivors of Hodgkin's disease have developed second cancers and heart disease earlier than expected. Breast cancer has been found to be the most frequent type of cancer among these women with a rate more than 4 times that observed in the general population. The group of survivors most likely to get breast cancer are those women who were treated with radiation to their chests before 35 years of age and who are more than five years from treatment. Little is known about the screening practices of these women who are now at high risk for breast cancer. Neither has the best screening practices for them been defined. Although mammography has been found to reduce death rates for women over 50, it is not clearly established to be of benefit at younger ages, when breast cancers have most often arisen after Hodgkin's disease treatment. Among women with gene mutations that are associated with increased risks for breast cancer, mammography is being recommended for women who are as young as 25 years of age.

Therefore, we have designed a study with three major aspects. It will: 1) examine the emotional impact of being notified of an increased risk of cancer; 2) examine whether risk notification leads more women to protective screening behaviors, and 3) assess whether mammograms contribute meaningfully to identifying early, curable tumors in younger women who have a risk for breast cancer that is above average.

Methodologically, the study has two components or phases. In the first phase, we will send questionnaires to female survivors of Hodgkin's disease to learn about their general well-being, about their knowledge of breast cancer, and about their breast cancer screening practices. Women who are not participating in breast cancer screening will be eligible for the study. Women who agree to participate in this study will be assigned by chance to either the intervention group or to a delayed intervention. Those assigned to the intervention group will receive telephone counseling by trained counselors and be encouraged to seek a breast check-up. Those assigned to the delayed intervention will receive telephone counseling six months later after collection of a second questionnaire including information regarding their breast cancer screening behavior.

The second phase of the study will include a study of the potential usefulness of mammography in these younger women. Participants will be offered a free baseline mammogram. Studies will be performed either at Stanford or in the local communities. The mammograms will be reviewed twice by two different radiologists who will not know whether the mammogram was considered normal or abnormal. The reviewers will look at the mammogram to determine whether the breast tissue is normal, and whether factors such as breast density impair valid interpretation of the study. If participating women have mammograms that are unlikely to be useful for screening, they will be advised that annual mammography will not be necessary. All mammography findings will be related to any abnormal findings on breast examination or biopsy. The participants will be contacted 12 months after their mammogram to determine whether breast cancer has been diagnosed after their mammogram. The efficacy of the mammography will then be determined. The sample for the proposed study will consist of 522 women who received radiation therapy to treat their Hodgkin's disease before the age of 35, are five years or more from treatment, and have had sufficiently recent contact with Stanford (within five years) to expect potential recruitment and participation. We anticipate that at least 400 women will agree to participate, i.e., 200 for each group in the study measuring the effects of counseling intervention.

Communication, Content & Impact of Genetics in Breast Cancer

Deborah J. MacDonald, R.N., M.S.
City of Hope National Medical Center

Recent genetic discoveries have enabled the ability to identify women at high risk for breast cancer. Identifying women at high risk and instituting measures to lower the likelihood of cancer, is the ultimate goal of cancer risk assessment. Use of this potentially life-saving discovery has, however, revealed multiple risk management and societal concerns. Responsible use of this new technology, therefore, requires healthcare providers to be prepared to address the medical, psychological, social, ethical, and legal challenges facing women at high risk for breast cancer. More information is urgently needed about women who seek genetic counseling and genetic testing for inherited breast cancer risk, the impact of the risk assessment process, and the choices women make to lower the odds of cancer developing.

The aims of this project therefore are to: 1) describe the characteristics, motivations, and concerns of women seeking genetic counseling/genetic testing for breast cancer predisposition; 2) measure the impact of this counseling and testing on the women's perception of cancer risk, concerns about cancer, risk management practices, general mood and distress, and communication of risk; and 3) compare among women appropriate for genetic testing, those who undergo testing and those who do not. Participants in the study will be derived from one of the largest groups of women seeking genetic breast cancer risk assessment in California. Study participation consists of completing 1 to 4 mailed questionnaires at various time-points prior to and following risk assessment. A sub-set of women will also participate in a one-time focus group to further explore the issues these women face. Funds are available to cover the costs of genetic counseling and genetic testing for women who are indigent.

The City of Hope National Medical Center services a diverse ethnic and socio-economic community, and is a disproportionate care provider with 30% of patients being recipients of Medi-Cal (California's Medi-care program). The investigative team represents the disciplines of oncology, genetics, nursing, psychology, social work, ethics and law. The team has expertise in clinical cancer genetics, breast cancer risk management, quality of life measures, and includes a liaison to community-based support services. Team members have personal and professional experience in breast cancer risk assessment and/or related psychological, legal, and ethical issues.

The study results will allow us to tailor our counseling approach/content to provide more sensitive and responsive care for women who seek cancer risk services. The findings will also enable us to educate clinicians about the complex issues and values involved in cancer risk assessment, and could result in more appropriate referral of women for risk assessment, ultimately culminating in the prevention or earlier detection of breast cancer.

Tamoxifen Prevention of Breast Cancer: Is it Acceptable to Women at Risk?

Joy Melnikow, M.D., M.P.H.
University of California, Davis

Recent research has indicated that the drug tamoxifen, used for many years as part of treatment for breast cancer, may reduce the incidence of breast cancer among women at higher risk for breast cancer. The FDA approved this use of tamoxifen in 1998. Women are considered to be at high risk if they are 60 years or older, or if they are younger and have a family history of breast cancer or history of breast biopsies. Based on National Cancer Institute estimates, approximately 25 million women in the US are potentially eligible to take tamoxifen. The drug must be taken daily for five years, and carries the possibility of both serious and annoying side effects, including hot flashes, vaginal discharge, an increased risk of cataracts, uterine cancer, and blood clots in the legs or lungs.

How women will decide whether or not to take tamoxifen for breast cancer risk reduction and what information would be most helpful to women making this decision has not been studied. Which factors have the greatest influence on women's decision-making in this area is not known. The primary objective of this project is to develop a deeper understanding of how women eligible to take tamoxifen prophylaxis weigh risks versus benefits in their decisions. This project will interview 450 women, including many low income and minority women, to learn more about their preferences for or against tamoxifen prophylaxis, and how they make their choices. Based on information from initial focus groups and the interviews, the project will lay the groundwork for an educational tool to assist eligible women in making an informed choice about tamoxifen prophylaxis.

For the large number of women (and their practitioners) facing the complex decision of whether to use tamoxifen prophylaxis, results of this project will provide timely assistance. Results of the formal preferences assessment can be applied to subsequent cost-effectiveness analyses, to allow adjustment for quality of life. These findings will be helpful to health policy makers in considering funding allocation and coverage decisions for tamoxifen prophylaxis.

Breast Cancer Survivorship: Partner's Role in Recovery

Beth E. Meyerowitz, Ph.D.
University of Southern California- Department of Psychology

The transition from being a patient on active treatment to long-term follow-up and survivorship can be upsetting and disruptive for women with breast cancer. Women are frequently unprepared for the lengthy recovery period that can be required. Uncertainty about what to expect post-treatment, what kind of follow-up is typical, and which symptoms are important to monitor leaves many women feeling both relief at having completed treatment and heightened anxiety about the future. Unfortunately, support from intimate partners can often be lacking at this stressful time because partners often expect that their loved one will quickly return to "normal" both physically and emotionally. Thus, they may be neither prepared for, nor understanding of, the ongoing stresses to the patients or to themselves, potentially leading to distress and maladaptive coping for both patient and partner.

In this project, we will investigate how partners' reactions during this transition period relate to patients' quality of life, relationship adjustment, personal growth, and coping. We propose to examine these issues by mailing surveys to approximately 370 partners of breast cancer patients who have recently completed their primary and adjuvant treatment for early stage breast cancer. We will ask partners to complete the surveys twice, once approximately 4 months after the patient finishes treatment and again 4 months later. Questionnaire packets will include standardized measures of multiple quality of life domains (emotional, cognitive, physical), relationship and sexual adjustment, coping and support, and breast cancer-related perceptions. Partners will be recruited through patients who are participating in a large, multi-site study of the period of transition to survivorship that has recently received funding from the National Cancer Institute.

The proposed project is designed to take advantage of the resources for patient recruitment and data collection available through that grant, requiring additional funds only to collect and analyze data from partners (for which the NCI grant provides no funding). We will coordinate data collected from the 2 projects to allow us to provide a comprehensive assessment of couples' adjustment and coping. In the NCI study, we also will develop and evaluate a brief videotape intervention designed to prepare women for the transition from treatment to survivorship, allowing us to examine the impact of the videotape on partners, as well. We believe that the videotape will help partners to understand the difficulties facing patients at the completion of treatment, making them more likely to be able to provide helpful support. These findings will provide direct information on reducing the human costs of cancer for both the patient and her partner.

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Innovative, Developmental and Exploratory Awards-Type II


Effectiveness of Electronic Support Groups for Breast Cancer

Morton Lieberman, Ph.D.
University of California, San Francisco; Langley Porter Psychiatric Institute

The study explores the feasibility and effectiveness of online support groups for women with breast cancer. Although there has been an explosive growth in Internet-based health interventions, such growth is not matched by empirical research. Our goal is to answer: 1) what conditions or structure of online support groups enhance their productive functioning? 2) How effective are online support groups? 3) What "therapeutic" processes are characteristic of online support groups?

An ongoing study comparing group therapy for breast cancer patients to community support groups (The Wellness Community and The Cancer Support Community) provides the context enabling our exploratory study. The Stanford study compares the treatments on the effectiveness in reducing depression, pain, increased survival, access to resources for treating and coping with breast cancer, and lengthening time to recurrence. As a national organization that provides a no-cost service from 17 centers, the adoption of online support groups is high. It is a free program of psychological and emotional support for cancer patients serving about 4500 persons weekly. The online support groups will utilize a closed, professionally moderated and synchronized (chat room) format that as closely as possible mirrors The Wellness Community face-to-face groups.

We test a salient and practical question, the answer to which could increase support availability, especially in rural areas or towns, small cities, and for those who are homebound. online support groups are a cost effective mode for providing help for a variety of health problems. Their rapid spread has not met even the rudimentary test of evidence-based medicine. The proposed study is a beginning in that direction.

Five 12-14 member Breast Cancer groups in online support groups will be studied. The length of time for groups is 1 year (maximum). We will be experimenting with several variations of group formats:

1. Anonymous group, first names
2. Personal group pictures and brief biographical sketches on the web
3. Same as group 2 plus weekly shared diaries
4&5. Groups 4 and 5 will be structured based on preliminary information developed in the previous trials. All groups will have e mail access to one another and the Leaders, as well as Internet sites for cancer information.

Our measures of effectiveness assessed at 0, 4 and 8 months are: 1. Self-Efficacy 2. Cancer Behavior Inventory 3.Cancer-Related Trauma Symptoms 4. Social Support 5. The Profile of Mood States 6. Pain-Rating, retention and amount and frequency or participation and frequency of outside group contact via E mail.

The mediating variables include: 1. Emotional Control 2. Cancer-Related Coping 3. Other help getting activities.

Our process measures are: 1. Group Ratings of Feelings of Support Group Ratings 2. Group Meetings Questionnaire 3. Group Experience Inventory 4. Cancer Support Group Topic Coding 5. Group Norms.

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Postdoctoral Fellowship Awards


Generativity and Meaning-making as Resilience Factors in Breast Cancer

Jay Azarow, Ph.D.
Stanford University

The goal of this study is to see if recently-diagnosed breast cancer patients benefit psychologically from finding some positive meaning in their illness, particularly through reevaluating their life goals and priorities and by parenting and helping others. This premise flows from an apparent paradox: many patients with more advanced cancer seem medically quite ill, but psychologically quite healthy and resilient. Distress is common when breast cancer is first diagnosed, but good adjustment to advancing cancer often seems to involve real psychological growth. A major component of such growth--according to many patients, their loved ones, and their physicians, is finding positive meaning in the illness, in part through redefining personal values and life goals.

An important contributor to life meaning for many adults is "generativity"-Erik Erikson's term for the concern for the next generation's well-being and for one's psychological legacy. Generativity often takes the form of parenting, teaching, mentoring, and community service. Recent research outside of oncology has found that: (1) finding genuine positive meaning after loss or trauma seems to contribute to health and well-being; and (2) persons who involve themselves in generative pursuits like parenting and helping others, are less depressed and anxious and more satisfied with themselves and with their lives. These results are consistent with previous research at Stanford which found that a form of group therapy- emphasizing discussion of the personal meaning of illness and the reassessment of life goals, and featuring participants mentoring each other-led to less distress, better quality of life, and longer survival. However, not enough is understood about the process of meaning-making in breast cancer, and there is no published research on generativity with cancer or other medical patients.

This study has three broad aims. The first is to closely look at how breast cancer patients find meaning in their illness, and to determine if finding positive meaning leads, over time, to better quality of life and less distress. The second is to ask participants specifically about their generative concerns (such as parenting and community service), and determine if, over time, those who are more generative experience better quality of life and less distress. To meet these aims, we will recruit an ethnically diverse group of 80 women with recently-diagnosed breast cancer, ask them to complete a set of questionnaires at two points in time one year apart, and invite one-quarter of them for in-depth personal interviews. This information will help us meet our third aim: to design and pilot-test a professionally-led support group program to help breast cancer patients enhance their well-being and quality of life. Discussion in the group will focus on the reevaluation of life goals and finding energy for important generative priorities like parenting and helping others.

The results of this innovative project have the potential to lead to better psychological treatment for newly-diagnosed patients: treatment that better enhances quality of life and that, ultimately, may even contribute to longer life. It will also contribute to the new body of research that emphasizes resilience and personal growth in coping with chronic illness, trauma, and disability.

Do Community Cancer Groups Enhance Well-Being?

Matthew J. Cordova, Ph.D.
Stanford University- School of Medicine

This study is designed to evaluate whether breast cancer patients who have had past traumatic experiences have more difficulty adjusting to breast cancer than women who have not had such experiences, and whether cancer support groups improve their quality of life by allowing them to discuss their thoughts and feelings with others who are supportive. It is embedded within a larger BCRP-funded study designed to assess the strengths and weaknesses of two different community-based support group interventions for breast cancer patients which will be compared to a model developed in the university setting to study which aspects are most effective and who benefits the most. This proposal will benefit from the collaborative relationship between Stanford, The Wellness Community, and Cancer Support Community, two major cancer support programs providing group interventions for women with breast cancer in Northern California.

Because women with breast cancer who have a history of trauma are thought to have greater social, emotional, and physical stress, it is important for us to learn how community cancer support groups can improve quality of life for these women and to identify which groups work best. There is growing evidence that group programs may both improve the quality and extend the quantity of life for breast cancer patients. This study will enable us to refine and improve group interventions, and better match specific ones to those who will most benefit.

Ninety-six women with recently diagnosed breast cancer at the Cancer Support Community in San Francisco and The Wellness Community-East Bay in Walnut Creek will be asked to participate in the study. They will be randomly assigned at each site to the community group program or the Supportive-Expressive group therapy and asked to fill out questionnaires about their trauma history, emotional distress, social and family support, background, and evaluation of their group experience every four months for a year. They will also be asked to write about their thoughts and feelings about breast cancer and to provide saliva samples to measure their physiological response to stress. This information will be used to determine how well these groups work and for whom they work best.

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 evidence to support health policy changes. This could lead to improved programs of group support throughout the state of California, offering comfort, guidance, and support to all women coping with breast cancer.

Social Support and Breast Cancer Control Among Latinas

Nilsa Gallardo, Ph.D.
University of California, Los Angeles

While early detection and treatment are essential in decreasing the rates of cancer-related deaths among minority populations, many cancers continue to be diagnosed at more advanced stages. If the medical community seeks to change this, it must take steps to understand the factors that contribute to individual health-seeking behaviors. Studies suggest that having strong social supports in place can help an individual's psychological adjustment to a stressful medical situation and that psychological well-being directly influences health-seeking behaviors.

The project will address the socio-cultural, behavioral and psychological issues relevant to breast cancer in a minority population of women. It will look at the way in which Latinas, who have been diagnosed with a breast abnormality suspicious for cancer, define and use social support during the period in which they are undergoing treatment and awaiting a final diagnosis. The project will focus on Hispanic women (Hispanics currently represent the largest ethnic minority group in California). In addition to developing a better understanding of the Latina's experience, a second aim of the project is to develop a culturally and language appropriate instrument to measure social support and psychological well-being in this population of women. This is important because previous efforts, using existing instruments, to assess quality of life aspects such as social support in Hispanic populations have proven extremely difficult.

Information on the women's experiences will be obtained through the use of face-to-face interviews. The interviews will focus primarily on the women's understanding, need for, and use of social support, how social support impacts their psychological well-being, and how the two factors affect their health seeking behaviors. The data collected will be organized in terms of common themes that arise from the groups and interviews. Those themes will be used to develop an instrument to measure social support in this population of women. The instrument will then be tested on another sample of women from the same ethnic backgrounds with the same medical conditions.

The immediate benefits of the project include: 1) a better understanding of the effects of social support and psychological well-being on positive health-seeking behaviors in Hispanic women with a potential breast cancer diagnosis; and 2) the availability of a culturally appropriate instrument to measure social support and psychological well-being in this population of women. The long-term benefits include the development of interventions aimed at facilitating the use of underutilized social support networks. The ability to maximize the use of available resources can positively influence psychological well-being and health-seeking behaviors. These will hopefully translate into earlier detection and treatment of a potentially deadly disease.

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