Deborah O. Erwin

Narrative communication in cancer prevention and control: a framework to guide research and application.

Narrative forms of communication—including entertainment education, journalism, literature, testimonials, and storytelling—are emerging as important tools for cancer prevention and control. To stimulate critical thinking about the role of narrative in cancer communication and promote a more focused and systematic program of research to understand its effects, we propose a typology of narrative application in cancer control. We assert that narrative has four distinctive capabilities: overcoming resistance, facilitating information processing, providing surrogate social connections, and addressing emotional and existential issues. We further assert that different capabilities are applicable to different outcomes across the cancer control continuum (e.g., prevention, detection, diagnosis, treatment, survivorship). This article describes the empirical evidence and theoretical rationale supporting propositions in the typology, identifies variables likely to moderate narrative effects, raises ethical issues to be addressed when using narrative communication in cancer prevention and control efforts, and discusses potential limitations of using narrative in this way. Future research needs based on these propositions are outlined and encouraged.

What makes cancer survivor stories work? An empirical study among African American women

IntroductionCancer survivors play a vital role in cancer control as messengers of hope and information, and advocates for prevention and screening. Understanding what makes survivor stories effective can enhance survivor-delivered programs and interventions.MethodsBy random assignment and using a cross-classified design, 200 African American women viewed videotaped stories (n = 300) from 36 African American breast cancer survivors. Analyses examined effects of story attributes (narrative quality, health message strength), participant characteristics (ways of knowing, experience with breast cancer) and identification with the survivor on women’s: (1) level of engagement in the story; (2) positive thoughts about the story; and, (3) remembering key messages about breast cancer and mammography in the story.ResultsParticipant characteristics were significant predictors of all three study outcomes, accounting for 27.8, 2.6 and 22.2% of their total variance, respectively. In comparison, the variability in these outcomes that could be attributed to differences in the stories was small (0.6, 1.1 and 2%, respectively). The effects of participant characteristics on level of engagement and positive thoughts were mediated by identification with the survivor.ConclusionsThe best predictor of a woman becoming engaged in a breast cancer survivor’s story and having positive thoughts about the story was whether she liked the survivor and viewed her as similar to herself (i.e., identification).Implications for cancer survivorsSurvivor stories may be most effective when audience members identify with the survivor. Finding key characteristics that can reliably match the two will advance cancer communication science and practice.

A comparison of African American and Latina social networks as indicators for culturally tailoring a breast and cervical cancer education intervention

As similar cancer health disparities have been documented for African American (AA) women and Latinas, it would be important to determine whether comparable interventions could be used to increase screening among these 2 culturally different populations. This paper reports research findings comparing cultural dimensions of breast and cervical cancer as they impact Latino and AA social networks and explore the feasibility of creating outreach models that may serve both groups. An existing intervention that integrates the social roles and relationships of AA women, The Witness Project®, is used as a framework for tailoring an intervention for Latino communities. Findings and data from focus groups and key informant interviews were collected from more than 120 Latinos in Arkansas and New York City. These findings are analyzed using the Pen‐3 Model, categorized, and compared with previous social role and network information from AA women as reflected in the Witness Project® intervention model. The findings from this study demonstrated variations between AA women and Latinas with regard to roles and gender relationships while demonstrating similarities with regard to spiritual beliefs and attitudes toward cancer. We applied our results to culturally tailor and develop a breast and cervical cancer intervention, Esperanza y Vida™ (Hope and Life), that incorporates Latino values and social relationships. This study demonstrates that a proven education and outreach model for AA women may provide a framework for creating a culturally appropriate intervention for Latinas. Further research is needed to study the efficacy of the new model. Cancer 2007.

Breast Cancer Racial Disparities: Unanswered Questions

Breast cancer is the most common noncutaneous cancer diagnosed in women in the United States and is second only to lung cancer as the leading cause of cancer-related mortality. Although mortality rates have been dropping steadily due to a variety of factors including improved treatment modalities and screening, substantial racial differences in outcome between blacks and whites persist. Although differences in health care utilization and access, tumor biology, and cancer management have been elucidated as possible reasons for disparities seen, it is likely that other interactions exist. The purpose of this review is, therefore, to present a comprehensive overview of the literature on racial disparities in breast cancer outcome and highlight potential causative factors that may contribute to disparities seen among blacks and whites with breast cancer. In addition, we make research recommendations by discussing some of the remaining gaps in knowledge that may lead to further understanding of disparities and consequently improved outcomes for all women with breast cancer.

Breast and Cervical Cancer Screening Among Latinas Attending Culturally Specific Educational Programs

Background. Latinas in the United States have higher morbidity and mortality rates for breast and cervical cancers (compared with non-Latina Whites), often due to lower screening rates. A community-based participatory research (CBPR) approach could help to improve screening rates by creating a culturally customized educational program for Latino men and women addressing low knowledge, gender roles, and spirituality. Objectives. This study was designed to assess the effectiveness of a culturally customized program (Esperanza y Vida [Hope and Life]) in increasing breast and cervical cancer screening among Latinas, and to examine how screening rates related to changes in cancer knowledge, differences in ethnic origins, and geographic location. Methods. Participants were recruited to attend either a breast and cervical (intervention) or diabetes (control) education program, within a randomized plan. Sixty-nine programs (44 intervention; 25 control) were conducted in Arkansas (AR; n = 39) and New York City (NYC; n = 30) with a total of 847 Latino men and women. Telephone follow-up data were collected on 49% of the women who consented to being contacted 2 months postintervention. Results. At the 2-month follow-up call, screening rates were significantly higher for the intervention versus the control group for clinical breast examination (CBE; 48% vs. 31%; adjusted odds ratio [aOR], 2.2; 95% confidence interval [CI], 1.1–4.2), breast self-examination (45% vs. 27%; aOR, 2.3; 95% CI, 1.1–5.0), and Pap testing (51% vs. 30%; aOR, 3.9; 95% CI, 1.1–14.1), but not for mammography (67% vs. 58%; aOR, 0.7; 95% CI, 0.1–3.6). The aORs accounted for the significant effects of study site (AR vs. NYC) and marital status. Conclusions.Esperanza y Vida has the potential to reduce health disparities in breast and cervical cancer morbidity and mortality rates through increasing cancer screening and thereby increasing early detection.

Esperanza y Vida: A Culturally and Linguistically Customized Breast and Cervical Education Program for Diverse Latinas at Three Different United States Sites

Breast cancer is the most common cause of cancer and the leading cause of cancer death among Latinas in the United States. In addition, Latinas experience a disproportionate burden of cervical cancer incidence, morbidity, and mortality compared with non-Hispanic White women. Lower use of breast and cervical cancer screening services may contribute to these disparities. To address the underutilization of breast and cervical cancer screening among diverse subgroups of Latinas, a peer-led education program called Esperanza y Vida (“Hope and Life”) was developed and administered at 3 sites (2 in New York and 1 in Arkansas). Immigrant Latina women and their partners were educated about the importance of breast and cervical cancer screening, with the goals of increasing their knowledge about these cancers and their screening behavior. An analysis of the interventions findings at baseline among female participants demonstrated significant sociodemographic, interpersonal, cultural, health care system, and program variability in 3 distinct geographic regions in the United States. These data indicate the need for and feasibility of customizing cancer outreach and educational programs for diverse Latina subgroups living in various U.S. regions, with implications for informing the expansion and replication of the program in other regions of the country.

Engaging diverse populations about biospecimen donation for cancer research

Clinical research increasingly relies upon the availability of appropriate genetic materials; however, the proportion of biospecimens from racial/ethnic minority patients and healthy controls are underrepresented, which preclude equitable research across all patient groups for cancer treatment. National Cancer Institute-funded Community Network Program Centers in California, Florida, and New York collaborated with local community partners to conduct three independent formative research studies with diverse (African American, Asian American, Hispanic, and White) participants to explore their knowledge, attitudes, and beliefs about biobanking, and their experiences with the donation of biospecimens. Our findings demonstrated similarities in overall low knowledge and understanding about the use of biospecimens for research. This was exacerbated for non-English speakers. Racial and ethnic groups differed with regard to a number of factors that are obstacles for participation, e.g., continuing medical mistrust (African Americans), lack of benefit (Hispanics), apprehension about the physical toll of donating (Vietnamese), usage of biospecimen for research (Hmong and Chinese), and suspicion of exploitation by corporate entities (Whites). However, participants uniformly reported general interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations. This interest was framed with a strong admonition that donations should be accompanied by transparency about study sponsorship and ownership, distribution and use of biospecimens, and study information that fit participants’ backgrounds and experiences. This cross-cultural regional analysis offers significant insights into the similarities and variations in opinions and perceptions about biobanking and the collection of biospecimens for use in cancer research.

Community-Based Partnership to Identify Keys to Biospecimen Research Participation

Reported barriers to participation in biospecimen banking include unwillingness to undergo blood-draw procedures and concerns about confidentiality breaches, privacy, and discrimination. The study identified key factors and influential perspectives to address these barriers and inform methods to improve recruitment and research participation among racially diverse community. A mixed-methods, community-based participatory research orientation was used to collect formative findings to develop a pilot intervention. Methods included nine key informant interviews, three focus groups (n = 26), and 64 community surveys. Findings showed: (1) increased concern of exploitation by pharmaceutical company sponsor; (2) varied perceptions about monetary compensation for research participation; and (3) willingness to participate in a biospecimen banking study by more than 30% of the people in the community survey. Research participation and biospecimen donation may be influenced by who is sponsoring a study. Monetary incentives for study participation may be more important for African American than White participants.

Using standardized patients to teach breast evaluation to sophomore medical students

In response to the current emphasis on health maintenance and disease prevention, the authors developed a comprehensive education program in which sophomore medical students interview a standardized patient about breast problems and risk factors, receive one-on-one instruction from the standardized patient during the clinical breast examination, and practice recommendations for screening and instruction in breast self-examination. In this pilot study sophomore students who underwent the comprehensive education program were compared with students who received the traditional, didactic instruction and practiced on plastic breast models. The students who received the didactic instruction had mean scores on a multiple-choice knowledge-base pretest and posttest of 54.6% and 76.8%, respectively. The students who participated in the comprehensive education program had mean pretest and posttest scores of 51.2% and 78.5%, respectively. All students participated in a practical test of the clinical breast examination during an objective structured clinical examination. The students who had received the didactic instruction scored 69.9% (mean), compared with 84.1% for the students who had had the comprehensive education program. The comprehensive breast education program teaches medical students about risk factors, screening recommendations, and clinical breast examination more effectively than do traditional didactic methods.

Decision Making about Cancer Screening: An Assessment of the State of the Science and a Suggested Research Agenda from the ASPO Behavioral Oncology and Cancer Communication Special Interest Group

Broad participation in screening is key to cancer prevention and early detection. Unfortunately, screening rates are low for many modalities. At its core, successful screening involves an individual deciding to take action (e.g., completing self-exams or scheduling appointments). Therefore, the