Sandra Millon Underwood

Minorities, women, and clinical cancer research: the charge, promise, and challenge.

Significant progress has been made since the war against cancer was launched. Discoveries in molecular medicine, genetics, and epidemiology have led to the recognition that certain cancers are potentially preventable and that elements of lifestyle, along with genetic, hormonal, and metabolic factors can be altered to reduce cancer risk. Advances in medical technology have led to the development of new imaging methods and computer technologies that can aid in efforts to detect, diagnosis, and treat cancer. Since the offensive against cancer was initiated, cancer treatments have become more powerful, more precise, less drastic, and safer. As a result, cancer incidence and mortality have begun to decline. Yet, while the nation boasts of the progress being achieved relative to cancer incidence and mortality, and federal research agencies retort that research applies to all populations, it is apparent that the declines do not translate to all populations in the United States. Clinical research is essential to cancer prevention and control. Within the oncology community, clinical cancer research trials are viewed as an efficient and economical way for patients to secure state-of-the-science medical care. Recognizing the need to improve access to state-of-the-science cancer treatment and control programs, minority and female participation in clinical cancer research trials has been encouraged. This recommendation is based on the belief that increased participation in well-designed clinical cancer research trials adhering to strict protocols and quality controls will, not only help validate the application of research findings to minority and female populations, but also result in better patient outcomes. Born out of a commitment to social equity, justice, beneficence, and the desire to ensure that data relevant to cancer prevention and control are both valid and generalizable to populations across the United States, several programs of research aimed toward increasing the representation of women and minorities in clinical cancer research have been pursued by the National Cancer Institute. This issue of the Annals of Epidemiology Minorities, Women, and Clinical Cancer Research presents issues and challenges that face the research community and descriptions of effective models, strategies, and practices that may be used to increase the participation of minorities and women in clinical cancer research trials and facilitate the conduct of research directed toward reducing the cancer burden within the United States.

Children in research: Fathers in cancer research - Meanings and reasons for participation

Fathers of chronically ill children are not well represented in the literature, and we know even less about fathers whose children are involved in clinical research. This study explores the meanings of research and reasons for participation among 12 fathers whose children were engaged in clinical cancer research. Findings revealed two general meanings of the research: the contribution of data and the effect of the intervention on the body of the child. These meanings reflected the research design of survey and experimental or randomized controlled clinical trials, respectively. The possibility of improvement was the reason given for participating in experimental studies, whereas altruism was the reason more likely given unequivocally for survey research. The findings point to two issues inherent to the practice of medical research: the tension between the welfare of the individual and the welfare of the group and the constantly shifting boundaries between acceptable therapy and research.

Reducing Prostate Cancer Morbidity and Mortality in African American Men: Issues and Challenges

Prostate cancer is the most commonly diagnosed cancer in men in the United States. It disproportionately affects African American men when compared to other ethnic groups. African American men are two to three times more likely to die of prostate cancer than white men. The reasons for the disparity remain unclear, but several factors may be involved, such as age, race, nationality, nutrition, exercise, and family history of cancer. Detection of prostate cancer in high-risk African Americans is important but continues to be controversial. This article reviews the current issues and challenges regarding prostate cancer in African American men. Nurses play a vital role in the health care and education of patients; therefore, they must be aware of the issues.

Black African immigrant community leaders' views on participation in genomics research and DNA biobanking

BACKGROUND The emergence of DNA biobanks and the power they lend to genomics research promise substantial advances in disease prevention and treatment. Greater participation of racial/ethnic minority populations is necessary to assure a future of personalized medicine for all. PURPOSE The purpose of this study was to explore perspectives on genomics research and DNA biobanking among black African immigrants, an often overlooked US subpopulation. METHODS As part of a larger staged study using community-based participatory research (CBPR) methods, we conducted four focus groups with 27 leaders in the black African immigrant community, exploring perceptions about genomics, barriers, and facilitators to participation in DNA biobanks and ethical ways to engage communities. FINDINGS/DISCUSSION Prominent in their views on genomics research was the legacy of colonial mistreatment and exploitation by Western researchers in their home countries in sub-Saharan Africa. The central dilemma for participants was balancing responsibilities to protect their people from harm and to find solutions for African generations to come. They insisted that nothing short of a transformation of research practice would elicit the full and sustained participation of African immigrants in the genomics enterprise. CONCLUSION To better align practice and policy in the field of genomics research and DNA biobanking with values expressed by African immigrant leaders, it is recommended that the field adopt a CBPR model for research and a benefit-sharing model for policy.

The Attitudes, Communication, Treatment, and Support Intervention to Reduce Breast Cancer Treatment Disparity

PURPOSE/OBJECTIVES to test the effect of a supportive, one-time psychoeducational intervention on treatment adherence among African American women receiving first adjuvant therapy for breast cancer. DESIGN a pilot, randomized, controlled clinical trial, two-group design, with one-time intervention and four data collection points. SETTING two University of Pittsburgh Cancer Institute clinics. SAMPLE 24 African American women. METHODS the Attitudes, Communication, Treatment, and Support (ACTS) intervention is a 45-minute one-on-one session with an African American woman recommended to have chemotherapy for breast cancer. The interventionist is an African American breast cancer survivor. The intervention consists of a discussion about chemotherapy and the importance of communicating knowledge needs and distress, an explanation of the specific treatment plan according to pathology, and support through the survivor testimonial and video clips from the African American community. MAIN RESEARCH VARIABLES dose of chemotherapy received and dose of chemotherapy prescribed. FINDINGS Twenty patients completed chemotherapy, and four chose not to begin or discontinued recommended chemotherapy. The groups were equal in key sociodemographic variables. Compared to usual care, the ACTS intervention participants demonstrated trends toward initiation of chemotherapy (100% versus 82%), overall adherence to chemotherapy (92% versus 73%), and percentage of total dose of chemotherapy received or prescribed (94% versus 74%). Compared to usual care, the ACTS intervention participants demonstrated more rapid initiation of chemotherapy and better overall adherence to chemotherapy. CONCLUSIONS the pilot ACTS intervention shows promise as a psychoeducational intervention to assist with chemotherapy decision making among African American women. IMPLICATIONS FOR NURSING African American women are at high risk of not receiving the full dose of prescribed chemotherapy for breast cancer for multiple reasons. Nurses must be sensitive to the unique fears and concerns of this population regarding chemotherapy decisions. An intervention addressing these fears and concerns may help to increase adherence.

Randomized trial of therapeutic group by teleconference

The effects of a therapeutic group by teleconference for African American women with breast cancer have not been documented, although the benefits of therapeutic groups for European women are well established. African American women with breast cancer may experience social disconnection, a sense of being cut off from partners, family, and friends because of side effects of treatment and fatalistic beliefs about cancer. A therapeutic group by teleconference may counteract these problems and improve social connection.

Enhancing the Participation of African Americans in Health-Related Genetic Research: Findings of a Collaborative Academic and Community-Based Research Study

The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans (n = 212) from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research (P < .05). The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they “had never been asked.” Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research.

Antecedents and mediators of community connection in African American women with breast cancer.

Objective: To describe the theory of community connection defined as close relationships with women and men who are members of a neighborhood, a church, a work group, or an organization. Antecedent and mediator variables related to community connection are identified. Design/methods: A cross-sectional design was used to assess for relationships among theorized antecedents and mediators of community connection in a sample of 144 African American women aged 21 years and older (mean = 54.9) who had been diagnosed with invasive/infiltrating ductal carcinoma. Measurement and Analyses: Community connection was measured with the relational health indices-community subscale. Mediator analysis was conducted to assess significance of the indirect effects of the mediator variables, which were fear, breast cancer knowledge, and isolation. Results: Community connection was found to be associated with three of the four antecedents, cancer stigma, stress, and spirituality, but not associated with fatalism. Effects were mediated primarily through fear and isolation with isolation as was more dominant of the two mediators. Surprisingly, breast cancer knowledge showed no significant mediator role. Conclusions: The importance of isolation and fear as mediators of community connection is highlighted by this research. The study could serve as a model for other researchers seeking to understand connection in ethnic groups and communities.

Research institute for nurse scientists responds to the challenge to expand and strengthen research focused on breast cancer in African American women

In an era where scientifically derived ‘evidence’ is used as a basis for nursing practice, it is imperative that nurses have a breadth of knowledge relative to the fundamentals of nursing science; knowledge of the current standards of nursing and medical practice; and knowledge of the characteristics, needs, concerns, and challenges of diverse consumer and patient population groups. Yet, while a significant body of ‘evidence’ that describes the experiences and needs of African American women across the breast care continuum has been generated, research suggests that there is a need to expand and strengthen this body of science. This report presents an overview of a decade of research focused on breast cancer among African American women and describes an initiative funded by the Susan G. Komen Breast Cancer Foundation to expand and strengthen nursing science that aims to reduce and/or eliminate excess breast cancer morbidity and mortality among African American women. Cancer 2007.

Enhancing the Collection, Discussion and Use of Family Health History by Consumers, Nurses and Other Health Care Providers: Because Family Health History Matters

The family health history (FHH) has long been used by nurses and other health care providers in clinical practice to determine if an individual, their family members, or their future generations are at an increased risk of heritable disease development. Information gleaned from the FHH can be used to better integrate preventive strategies into the plan of care. This report presents a summary of an exploratory pilot study that focused on the collection and use of FHH among a targeted group of Midwestern men and women. Findings suggest a need for efforts to further enhance the publics awareness of the importance of FHH.