As genetics and genomics become part of mainstream Medicine, these advances have the potential to reduce or exacerbate health disparities. Gaps in effective communication (where all parties share the same meaning) are widely recognized as a major contributor to health disparities. The purpose of this study was to examine GC-patient communication in real time, to assess its effectiveness from the patient perspective, and then to pilot intervention strategies to improve the communication. We observed 64 English-, 35 Spanish- and 25 Chinese-speaking (n = 124) public hospital patients and 10 GCs in 170 GC appointments, and interviewed 49 patients who were offered testing using the audio recordings to stimulate recall and probe specific aspects of the communication. Data analyses were conducted using grounded theory methods and revealed a fundamental mismatch between the information provided by GCs and the information desired and meaningful to patients. Several components of the communication that contributed to this mismatch and often resulted in ineffective communication included: (1) too much information; (2) complex terminology and conceptually difficult presentation of information; (3) information perceived as not relevant by the patient; (4) unintentional inhibition of patient engagement and question-asking; (5) vague discussions of screening and prevention recommendations. Our findings indicate a need to transform the standard model of genetic counseling communication using evidence-based principles and strategies from other fields of Medicine. The high rates of limited health literacy in the US, increasing access of diverse populations to genetic services, and growing complexity of genetic information have created a perfect storm. If not directly addressed, this convergence is likely to exacerbate health disparities in the genomic age.
The behavioral theory constructs most often used to study mammography utilization-perceived benefit, perceived susceptibility, self-efficacy, intention, and subjective norms-have neither been developed nor sufficiently tested among diverse racial/ethnic subgroups. The authors explored these constructs and their underlying assumptions relating to the social context of Filipina and Latina women. The mixed-methods study included testing construct measures in the multilingual surveys of a concurrent intervention study of 1,463 women from five ethnic groups. social context and individual screening behavior. In-depth interviews were conducted with 11 key informant scholars, 13 community gatekeepers, and 29 lay women, and a supplemental study videotaped and interviewed 9 mother-daughter dyads. Three social context domains emerged: relational culture, social capital, and transculturation and transmigration. The meaning and appropriateness of the five behavioral constructs were analyzed in relation to these domains. In contradistinction to tenets of behavioral theory, the authors found that social context can influence behavior directly, circumventing or attenuating the influence of individual beliefs; contextual influences, synthesized from multiple perspectives, can operate at an unconscious level not accessible to the individual; and contextual influences are dynamic, contingent on distal and proximal forces coming together in a given moment and are thus not consistent with an exclusive focus at the individual level. This article describes the study methods, summarizes main findings, and previews the detailed results presented in the other articles in this issue.Keywords behavioral theory; culture; social context; mixed methods; mammographyThe compass is a device whose function is inseparable from its context of origin, the planet Earth. Based on the concept of a magnetic north, a compass would not be useful, for example, on Mars with that planet's multiple magnetic fields. According to one NASA scientist, "If you were a boy scout with a compass on Mars, you would be lost" (J. E. P. Connerney, personal communication, August 22, 2003). Much of health behavior theory, anchored in the realm of individual cognition, has been developed and tested predominantly among university students (Ajzen, 1991) and then applied far more broadly. The bases for the theories are commonalities within groups in factors that influence behavior and the consistency and predictability of relationships among those factors. But these theoretically derived patterns do not operate in the same way for all people. Instead, when used in multicultural settings and among those of diverse socioeconomic backgrounds, this body of work can be likened to "a compass on Mars," a navigational tool that is designed for a set of forces and principles likely to operate differently-or not at all-in another milieu. Yet there is an implied universality in the way health behavior theories and their constructs are used. Despite the current emphasis on dissemin...
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. Perceived self-efficacy, measured by confidence in one's ability to complete a task such as getting a mammogram, has long been used as a predictor of and explanation for health behavior and as the target of health behavior interventions. Intervention studies have shown that changing a person's confidence in her or his ability to perform a particular behaviorher or his perceived self-efficacy-will likely change the behavior itself. However, there is little understanding of what composes this confidence, of how this construct works for different cultural and ethnic groups, and of whether it operates as indicated in theory in
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.
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.
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.Keywords mother-daughter relationship; breast cancer screening; subjective norms Breast cancer is the most commonly diagnosed type of cancer among Mexican and Filipina immigrant and U.S.-born women in California (California Cancer Registry, 2007). Compared to Whites, these women are more likely to be diagnosed at later stages and are more likely to die from this disease (American Cancer Society, 2008; California Cancer Registry, 2007). Latestage diagnosis is attributed in part to lack of participation in early detection behaviors such as mammography screening, access to salient information and education necessary for optimal health choices, and successful navigation of the medical care system (Borrayo & Jenkins, © 2009 by SOPHE Address correspondence to Pamela K. Washington, University of California, San Francisco, 1450 3rd Street, MC 0128, PO Box 589001, San Francisco, phone: (415) 385-6862; pamela.k.washington@gmail.com.. 2001). Health behavior research has developed a body of theory designed to explain and to predict practices such as the use of screening mammography and to inform interventions to increase screening (Rakowski & Breslau, 2004). However, concerns are frequently raised about the lack of attention to culture and social context in these theories and the extent to which the theories are meaningful among diverse communities (Kagawa-Singer, 2000). NIH Public AccessThe current research arose from our study titled Behavioral Constructs and Culture in Cancer Screening (3Cs), a mixed-method (inductive qualitative and deductive quantitative) intensive assessment of the cultural appropriateness of the five behavioral theory constructs most commonly used to explain breast cancer screening and to inform interventions to promote mammography: perceived threat, perceived benefits, intention, self-efficacy, and subjective norms. This analysis explores the specific case of mother-adult daughter comm...
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 communication, where all parties share a common understanding, is necessary to realize the promise of Genomic Medicine. It is especially salient given the imperative to increase the participation of diverse populations in genomics research and to expand the reach of clinical genomics. We have previously shown that cancer genetic counseling is suboptimal for patients with limited health literacy. To address this finding, we implemented a pilot study to improve verbal communication between genetic counselors and their patients of limited health literacy that consisted of: i) curriculum development and delivery of a Genetic Counselors (GC) communication workshop; ii) two-month post-workshop interviews with GC participants (n = 9); iii) observations/audio recordings of counseling sessions involving 24 patients and two GC workshop participants; iv) post-counseling interviews with patients (n = 9). The 4.5-h workshop presented evidenced-based principles and strategies for effective communication with limited health literacy patients (e.g. use of plain language and teach-back), and offered specific techniques and exercises to practice adoption of such practices in the genetic counseling context. GCs expressed appreciation for the opportunity to refine their skills; however, they reported that some strategies were challenging given their professional training and communication habits. For example, GCs were concerned that use of plain language could undermine efforts to obtain informed consent and provide scientifically accurate information. Observations and patient interviews after the workshop revealed that GCs were able to employ the communication strategies
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