Galen Joseph

Theorizing Social Context: Rethinking Behavioral Theory

Major behavioral theories focus on proximal influences on behavior that are considered to be predominantly cognitive characteristics of the individual largely uninfluenced by social context. Social ecological models integrate multiple levels of influence on health behavior and are noted for emphasizing the interdependence of environmental settings and life domains. This theory-based article explains how social context is conceptualized in the social sciences and how the social science conceptualization differs from and can broaden the analytic approach to health behavior. The authors use qualitative data from the Behavioral Constructs and Culture in Cancer Screening study to illustrate our conceptualization of social context. We conclude that the incorporation into health behavior theory of a multidimensional socioculturally oriented, theoretical approach to social context is critical to understand and redress health disparities in multicultural societies like the United States.

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.

Perceived Susceptibility to Illness and Perceived Benefits of Preventive Care: An Exploration of Behavioral Theory Constructs in a Transcultural Context

This article describes how the social context of transculturation (cultural change processes) and transmigration (migration in which relationships are sustained across national boundaries) can directly influence use of mammography screening. The authors conducted semistructured 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 behavior (Behavioral Constructs and Culture in Cancer Screening study). Iterative analyses identified themes of the transcultural domain: colonialism, immigration, discrimination, and therapeutic engagement. In this domain, the authors examine two key behavioral theory constructs, perceptions of susceptibility to illness and perceptions of benefits of preventive medical care. The findings raise concerns about interventions to promote mammography screening primarily based on provision of scientific information. The authors conclude that social context affects behavior directly rather than exclusively through beliefs as behavioral theory implies and that understanding contextual influences, such as transculturation, points to different forms of intervention.

Diversity of Participants in Clinical Trials in an Academic Medical Center The Role of the 'Good Study Patient?'

Only 2.5% of adults and even fewer minorities participate in cancer therapeutic trials. Researchers have concluded that many barriers to participation stem from how recruitment is performed by clinician investigators. The objective of the current research was to document specifically how these barriers impede recruitment in the clinical setting.

Recruiting minorities where they receive care: Institutional barriers to cancer clinical trials recruitment in a safety-net hospital.

INTRODUCTION Most research on the barriers to recruitment of ethnic and racial minorities focuses on patient factors. The purpose of this exploratory case study was to examine how institutional factors impacted recruitment and enrollment in a public hospital clinic frequented by minority patients. METHODS We used ethnographic methods (observations of patient-provider interactions and semi-structured interviews) to document and explain how a number of institutional barriers hindered trials enrollment in a public hospital outpatient breast cancer clinic. RESULTS We identified two categories of institutional barriers: (1) organizational climate, and (2) research specific resources. Organizational climate included qualities of the clinic and hospital such as the clinic structure (clinic hours, patient assignment method), the interdisciplinary care team, the lack of continuity of care, and competing provider priorities of clinical care, teaching, and research. Research specific resources included: staff, funds and institutional status to facilitate opening a range of trials; and linguistically and literacy-appropriate research resources. CONCLUSION Although we cannot determine from our qualitative data the relative impact of different kinds of barriers (e.g. patient, provider, institutional barriers), our data highlights the need to address the role of institutional barriers in efforts to improve minority recruitment to clinical trials. Recruiting participants in safety-net settings may be a reasonable strategy for increasing accrual of ethnic and racial minority patients to cancer clinical trials. However, our qualitative data suggest that while opening protocols for accrual at minority-serving institutions may signal nominal access to trials, achieving substantive access may require further steps to overcome substantial institutional barriers.

Taking race seriously: Whiteness in Argentina's national and transnational imaginary

Middle class porteños (the inhabitants of Buenos Aires) display their ambivalence about the whiteness of Argentina and their own belonging to the nation through their use of the intermittently racializing discourse of “seriousness.” The discourse of “seriousness” is used to talk about the status of Argentinas political, economic, and cultural “development” and Argentinas place in the global hierarchy of nations. Based on ethnographic fieldwork in Buenos Aires, Argentina (1994–1997), this essay analyzes the contradictions of porteño articulations and disarticulations of their own Argentine‐ness in relation to racial identity. The analysis centers on how porteños’ assessments of President Carlos Menems representative‐ness reflect the instability of racial norms in contemporary Argentina. Porteños’ ambiguous position in their own national and transnational imaginary—privileged within Argentina but marginal in the world—is reflected in their use of racial categories and racializing discourses.

Lynch Syndrome Patients’ Views of and Preferences for Return of Results Following Whole Exome Sequencing

Whole exome sequencing (WES) uses next generation sequencing technology to provide information on nearly all functional, protein-coding regions in an individual’s genome. Due to the vast amount of information and incidental findings that can be generated from this technology, patient preferences must be investigated to help clinicians consent and return results to patients. Patients (n = 19) who were previously clinically diagnosed with Lynch syndrome, but received uninformative negative Lynch syndrome genetic results through traditional molecular testing methods participated in semi-structured interviews after WES testing but before return of results to explore their views of WES and preferences for return of results. Analyses of interview results found that nearly all participants believed that the benefits of receiving all possible results generated from WES outweighed the undesirable effects. The majority of participants conveyed that relative to coping with a cancer diagnosis, information generated from WES would be manageable. Importantly, participants’ experience with Lynch syndrome influenced their notions of genetic determinism, tolerance for uncertain results, and family communication plans. Participants would prefer to receive WES results in person from a genetic counselor or medical geneticist so that an expert could help explain the meaning and implications of the potentially large quantity and range of complicated results. These results underscore the need to study various populations with regard to the clinical use of WES in order to effectively and empathetically communicate the possible implications of this new technology and return results.

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.

Newborn Sequencing in Genomic Medicine and Public Health.

The rapid development of genomic sequencing technologies has decreased the cost of genetic analysis to the extent that it seems plausible that genome-scale sequencing could have widespread availability in pediatric care. Genomic sequencing provides a powerful diagnostic modality for patients who manifest symptoms of monogenic disease and an opportunity to detect health conditions before their development. However, many technical, clinical, ethical, and societal challenges should be addressed before such technology is widely deployed in pediatric practice. This article provides an overview of the Newborn Sequencing in Genomic Medicine and Public Health Consortium, which is investigating the application of genome-scale sequencing in newborns for both diagnosis and screening.

Pre-counseling Education for Low Literacy Women at Risk of Hereditary Breast and Ovarian Cancer (HBOC): Patient Experiences Using the Cancer Risk Education Intervention Tool (CREdIT)

The Cancer Risk Education Intervention Tool (CREdIT) is a computer-based (non-interactive) slide presentation designed to educate low-literacy, and ethnically and racially diverse public hospital patients at risk of Hereditary Breast and Ovarian Cancer (HBOC) about genetics. To qualitatively evaluate participants’ experience with and perceptions of a genetic education program as an adjunct to genetic counseling, we conducted direct observations of the intervention, semi-structured in person interviews with 11 women who viewed CREdIT, and post-counseling questionnaires with the two participating genetic counselors. Five themes emerged from the analysis of interviews: (1) genetic counseling and testing for breast/ovarian cancer was a new concept; (2) CREdIT’s story format was particularly appealing; (3) changes in participants’ perceived risk for breast cancer varied; (4) some misunderstandings about individual risk and heredity persisted after CREdIT and counseling; (5) the context for viewing CREdIT shaped responses to the presentation. Observations demonstrated ways to make the information provided in CREdIT and by genetic counselors more consistent. In a post-session counselor questionnaire, counselors’ rating of the patient’s preparedness before the session was significantly higher for patients who viewed CREdIT prior to their appointments than for other patients. This novel educational tool fills a gap in HBOC education by tailoring information to women of lower literacy and diverse ethnic/racial backgrounds. The tool was well received by interview participants and counselors alike. Further study is needed to examine the varied effects of CREdIT on risk perception. In addition, the implementation of CREdIT in diverse clinical settings and the cultural adaptation of CREdIT to specific populations reflect important areas for future work.