Claudia Guerra

Intention, Subjective Norms, and Cancer Screening in the Context of Relational Culture

Research targeting disparities in breast cancer detection has mainly utilized theories that do not account for social context and culture. Most mammography promotion studies have used a conceptual framework centered in the cognitive constructs of intention (commonly regarded as the most important determinant of screening behavior), self-efficacy, perceived benefit, perceived susceptibility, and/or subjective norms. The meaning and applicability of these constructs in diverse communities are unknown. The purpose of this study is to inductively explore the social context of Filipina and Latina women (the sociocultural forces that shape people’s day-to-day experiences and that directly and indirectly affect health and behavior) to better understand mammography screening behavior. One powerful aspect of social context that emerged from the findings was relational culture, the processes of interdependence and interconnectedness among individuals and groups and the prioritization of these connections above virtually all else. The authors examine the appropriateness of subjective norms and intentions in the context of relational culture and identify inconsistencies that suggest varied meanings from those intended by behavioral theorists.

Social and Cultural Meanings of Self-Efficacy

This article describes the influences of social context on women’s health behavior through illustration of the powerful influences of social capital (the benefits and challenges that accrue from participation in social networks and groups) on experiences and perceptions of self-efficacy. The authors conducted inductive interviews with Latino and Filipino academics and social service providers and with U.S.-born and immigrant Latinas and Filipinas to explore direct and indirect influences of social context on health behaviors such as mammography screening. Iterative thematic analysis identified themes (meanings of efficacy, spheres of efficacy, constraints on efficacy, sources of social capital, and differential access to and quality of social capital) that link the domain of social capital with the behavioral construct perceived self-efficacy. The authors conclude that social capital addresses aspects of social context absent in the current self-efficacy construct and that these aspects have important implications for scholars’ and practitioners’ understandings of health behavior and intervention development.

Adult Daughters’ Influence on Mothers’ Health-Related Decision Making: An Expansion of the Subjective Norms Construct

This study of mother—adult daughter communication uses qualitative methods to explore the appropriateness of including adult daughters as referents in the measurement of subjective norms (a behavioral theory construct) related to the use of mammography and other health-related tests and services. The methods were chosen to approximate as closely as possible the mother—adult daughter relationship in the context of daily life. This inductive approach contrasts with the deductive origins of the construct. A sample of nine Mexican and Filipina immigrant and U.S.-born mothers and their adult daughters was recruited. Data were collected in two phases: (a) videotaped observations of mother—daughter dyads discussing health-related topics and (b) follow-up interviews designed to obtain an emic (insider) perspective of the videotaped interaction. Results show that adult daughters influence their mothers’ ability to navigate the health care system and contribute to health-related decision making and behavior, suggesting that it may be appropriate to include adult daughters in the assessment of subjective norms.

Passing Through: Meanings of Survivorship and Support Among Filipinas With Breast Cancer

Breast cancer among Filipinas in the United States is a major but largely neglected cancer disparity. In 2004, a community– university partnership resulted in the first Filipina breast cancer support group in the San Francisco Bay Area. Building on this partnership, we explored the social and cultural contexts of Filipinas’ experiences with breast cancer to inform development of culturally appropriate and sustainable support services and outreach. We utilized multiple qualitative methods (participant observation, individual and small group in-depth qualitative interviews) to identify meanings of survivorship and support. Interviews and observations revealed the influences of social context and immigration experiences on women’s understandings of cancer, what “surviving” cancer means, and what it means to take care of someone with breast cancer (or be taken care of). Our findings highlight the importance of a transnational perspective for the study of immigrant women’s experiences of cancer and survivorship.

Efficient Identification and Referral of Low-Income Women at High Risk for Hereditary Breast Cancer: A Practice-Based Approach

Background: Identification of low-income women with the rare but serious risk of hereditary cancer and their referral to appropriate services presents an important public health challenge. We report the results of formative research to reach thousands of women for efficient identification of those at high risk and expedient access to free genetic services. External validity is maximized by emphasizing intervention fit with the two end-user organizations who must connect to make this possible. This study phase informed the design of a subsequent randomized controlled trial. Methods: We conducted a randomized controlled pilot study (n = 38) to compare two intervention models for feasibility and impact. The main outcome was receipt of genetic counseling during a two-month intervention period. Model 1 was based on the usual outcall protocol of an academic hospital genetic risk program, and Model 2 drew on the screening and referral procedures of a statewide toll-free phone line through which large numbers of high-risk women can be identified. In Model 1, the risk program proactively calls patients to schedule genetic counseling; for Model 2, women are notified of their eligibility for counseling and make the call themselves. We also developed and pretested a family history screener for administration by phone to identify women appropriate for genetic counseling. Results: There was no statistically significant difference in receipt of genetic counseling between women randomized to Model 1 (3/18) compared with Model 2 (3/20) during the intervention period. However, when unresponsive women in Model 2 were called after 2 months, 7 more obtained counseling; 4 women from Model 1 were also counseled after the intervention. Thus, the intervention model that closely aligned with the risk program’s outcall to high-risk women was found to be feasible and brought more low-income women to free genetic counseling. Our screener was easy to administer by phone and appeared to identify high-risk callers effectively. The model and screener are now in use in the main trial to test the effectiveness of this screening and referral intervention. A validation analysis of the screener is also underway. Conclusion: Identification of intervention strategies and tools, and their systematic comparison for impact and efficiency in the context where they will ultimately be used are critical elements of practice-based research.

To worry or not to worry: breast cancer genetic counseling communication with low-income Latina immigrants

The purpose of this pilot study was to describe communication practices during hereditary breast cancer genetic counseling (GC) with low-income immigrant Latina patients in a public hospital setting. We utilized qualitative ethnographic methods, including direct observation of GC appointments with Latina patients at a public hospital offering free GC and BRCA testing and in-depth qualitative interviews with patients after they had received their BRCA genetic test results. Twenty-five patients participated; 20 were observed during genetic counseling appointments, and ten participated in interviews after BRCA testing with six participating in both observations and an interview. Analyses of qualitative data from observation field notes and interviews identified both strengths and limitations of current communication practices within the following themes: (1) family health history communication, (2) education regarding genes and genetics and patient information needs, (3) the purpose of the genetic test, (4) genetic test results and cancer risk, (5) building rapport and providing support, and (6) medical interpretation for monolingual Spanish speakers. As access to cancer GC expands in the public safety net settings and for the diverse populations they serve, it is critical to ensure effective communication in order for patients, whether or not they have a BRCA mutation, to understand the nature of their cancer risk and recommended methods of screening and prevention. Intervention strategies that address both structural constraints and patient-provider communication are needed to improve GC communication with immigrant Latinas, especially monolingual Spanish speakers.

Effective Referral of Low-Income Women at Risk for Hereditary Breast and Ovarian Cancer to Genetic Counseling: A Randomized Delayed Intervention Control Trial

OBJECTIVES To determine the effectiveness of a statewide telephone service in identifying low-income women at risk for hereditary breast and ovarian cancer and referring them to free genetic counseling. METHODS From June 2010 through August 2011, eligible callers to Californias toll-free breast and cervical cancer telephone service were screened for their family histories of breast and ovarian cancer. High-risk women were identified and called for a baseline survey and randomization to an immediate offer of genetic counseling or a mailed brochure on how to obtain counseling. Clinic records were used to assess receipt of genetic counseling after 2 months. RESULTS Among 1212 eligible callers, 709 (58.5%) agreed to answer family history questions; 102 (14%) were at high risk (25% Hispanic, 46% White, 10% Black, 16% Asian, 3% of other racial/ethnic backgrounds). Of the high-risk women offered an immediate appointment, 39% received counseling during the intervention period, as compared with 4.5% of those receiving the brochure. CONCLUSIONS A public health approach to the rare but serious risk of hereditary breast and ovarian cancer can be successful when integrated into the efforts of existing safety net organizations.

Cancer Counseling of Low-Income Limited English Proficient Latina Women Using Medical Interpreters: Implications for Shared Decision-Making

In cancer genetic counseling (CGC), communication across language and culture challenges the model of practice based on shared decision-making. To date, little research has examined the decision-making process of low-income, limited English proficiency (LEP) patients in CGC. This study identified communication patterns in CGC sessions with this population and assessed how these patterns facilitate or inhibit the decision-making process during the sessions. We analyzed 24 audio recordings of CGC sessions conducted in Spanish via telephone interpreters at two public hospitals. Patients were referred for risk of hereditary breast and ovarian cancer; all were offered genetic testing. Audio files were coded by two bilingual English-Spanish researchers and analyzed using conventional content analysis through an iterative process. The 24 sessions included 13 patients, 6 counselors, and 18 interpreters. Qualitative data analyses identified three key domains – Challenges Posed by Hypothetical Explanations, Misinterpretation by the Medical Interpreter, and Communication Facilitators – that reflect communication patterns and their impact on the counselor’s ability to facilitate shared decision-making. Overall, we found an absence of patient participation in the decision-making process. Our data suggest that when counseling LEP Latina patients via medical interpreter, prioritizing information with direct utility for the patient and organizing information into short- and long-term goals may reduce information overload and improve comprehension for patient and interpreter. Further research is needed to test the proposed counseling strategies with this population and to assess how applicable our findings are to other populations.

Acceptability of Salt Fluoridation in a Rural Latino Community in the United States: An Ethnographic Study.

Compared to other population groups in the United States, caries (tooth decay) is a disproportionately prevalent disease among Latino populations, especially among low-income and rural sub-groups and children under five years of age. Fluoride is a primary preventive for caries. While water fluoridation is a major and effective public health means for delivering fluoride on a mass scale, it does not reach many rural areas or population groups such as Latinos who eschew drinking water from municipal sources. This study examines the acceptability to such groups of salt fluoridation, an alternate means of delivering fluoride long used on a global scale. An ethnographic study in California’s rural Central Valley was performed. Thirty individual interviews and 5 focus groups (N = 61) were conducted in Spanish to investigate low-income Latino migrant caregivers’ experiences, views and understandings of domestic salt, oral health, caries prevention and fluoride. Audio data were transcribed, translated, coded and thematically analyzed. Table salt was readily available and frequently consumed. Both adult and child daily sodium consumption was high. Despite a general feeling that it was good, and present in dentifrices or dietary supplements, most participants had little knowledge about fluoride. Concerns were raised about cardio-vascular and other possibly deleterious effects if an increase in salt consumption occurred because fluoridated salt was viewed as having ‘extra’ benefits. Once informed about fluoride’s safety and role in caries prevention, most participants expressed willingness to use fluoridated salt, especially if it benefitted children. Reassurance about its safety and benefits, and demonstration of its taste, were important aspects of acceptance. Taste was paramount. Participants would not consume more fluoridated salt than their current salt as that would result in unpleasant changes in food flavor and taste. While salt fluoridation is acceptable, the feasibility of producing and distributing fluoridated salt in the United States is, however, complex and challenging.

Genetic Counselor and Healthcare Interpreter Perspectives on the Role of Interpreters in Cancer Genetic Counseling

ABSTRACT Cancer genetic counseling (CGC) combines psychosocial counseling and genetic education provided by genetic counselors to patients and families who have a history of cancer and are considering or have undergone genetic testing for hereditary cancer syndromes. The quantity and complexity of information provided can be challenging for any patient, but is even more so for those with limited English proficiency (LEP). This exploratory study investigated healthcare interpreters’ and genetic counselors’ perspectives on the role of interpreters in providing care to LEP patients during CGC. Through a survey of 18 interpreters and conventional content analysis of semi-structured interviews with 11 interpreters and 10 GCs at two California public hospitals, we found that: 1) interpreters viewed their role as patient advocate, cultural broker, and emotional support, not simply a conduit; 2) interpreters were challenged by remote interpretation, lack of genetic knowledge, and the emotional content of encounters; 3) interpreters and GCs held conflicting views of the value of counselors’ limited Spanish knowledge; and 4) trust, the foundation of the interpreter-provider dyad, was often lacking. The challenges identified here may result in poor healthcare experiences and outcomes for LEP patients. As genomics becomes more widespread and more LEP patients encounter CGC, the role of healthcare interpreters in facilitating effective communication must be further defined in order to facilitate better working relationships between interpreters and genetic counselors, and optimal communication experiences for patients.