Significant health disparities exist in relation to pathogenic variants in BRCA1/2. This study aimed to better understand the barriers and facilitators to BRCA1/2 genetic testing and intrafamilial communication of risk in racially and ethnically diverse individuals. We conducted qualitative interviews with non-Hispanic White (n = 11) and Black, Indigenous, People of Color (BIPOC) individuals (n = 14) who underwent testing for pathogenic BRCA1/2 variants. We employed template analysis, case study analysis, and comparative case study analysis to examine healthcare experiences related to genetic testing as well as intrafamilial communication of risk. Applying an intersectional lens, we sought to inform more person-centered approaches to precision healthcare and help dismantle disparities in genomic healthcare. Template analysis revealed salient factors at the individual (psychosocial well-being), interpersonal/familial, and healthcare system levels. A two-part case study analysis provided insights into how race/ethnicity, cultural norms, and socioeconomic status interact with systemic and structural inequities to compound disparities. These findings underscore the need for person-centered, tailored, and culturally sensitive approaches to understanding and addressing the complexities surrounding testing and the communication of BRCA risk. Applying an intersectional lens can inform more person-centered approaches to precision healthcare and may help to surmount existing disparities.

Individuals harboring breast cancer gene 1/2 (BRCA1/2) pathogenic variants are at increased lifetime risk for developing cancer. Learning one’s BRCA1/2 carrier status is a watershed moment that can result in psychological distress, anxiety, and depression, as well as feelings of vulnerability and stigma. However, emotional and coping responses to learning one’s BRCA1/2 carrier status and after risk-reducing interventions (i.e., preventative bilateral mastectomy) are variable, and existing literature reveals mixed and sometimes contradictory results. Drawing on the concept of narrative identity from the field of psychology, we sought to examine if “identity theft” (the sudden overtaking of one’s narrative agency by an external force) may help explain the heterogeneity of emotional and coping responses following the revelation of BRCA carrier status and the subsequent medical intervention one may receive. This Perspective explores BRCA related identity theft using two case studies. Narrative analysis of qualitative interviews uncover the ways that patients experience the disintegration (theft) of their identity as well as their efforts to build and reintegrate a new BRCA carrier identity. This initial qualitative exploration provides preliminary support for the relevance of narrative identity and identity theft to hereditary cancer. We posit that applying the lens of identity theft may hold promise as a unifying concept, integrating across the variable emotional and coping responses among BRCA carriers. Employing a lens of identity theft may help inform the development of tailored narrative interventions as part of precision healthcare to support active coping and psychosocial wellbeing.

BACKGROUND:In health care research, patient-reported opinions are a critical element of personalized medicine and contribute to optimal health care delivery. The importance of integrating natural language processing (NLP) methods to extract patient-reported opinions has been gradually acknowledged over the past years. One form of NLP is sentiment analysis, which extracts and analyses information by detecting feelings (thoughts, emotions, attitudes, etc) behind words. Sentiment analysis has become particularly popular following the rise of digital interactions. However, NLP and sentiment analysis in the context of intrafamilial communication for genetic cancer risk is still unexplored. Due to privacy laws, intrafamilial communication is the main avenue to inform at-risk relatives about the pathogenic variant and the possibility of increased cancer risk.OBJECTIVE:The study examined the role of sentiment in predicting openness of intrafamilial communication about genetic cancer risk associated with hereditary breast and ovarian cancer (HBOC) syndrome.METHODS:We used narratives derived from 53 in-depth interviews with individuals from families that harbor pathogenic variants associated with HBOC: first, to quantify openness of communication about cancer risk, and second, to examine the role of sentiment in predicting openness of communication. The interviews were conducted between 2019 and 2021 in Switzerland and South Korea using the same interview guide. We used NLP to extract and quantify textual features to construct a handcrafted lexicon about interpersonal communication of genetic testing results and cancer risk associated with HBOC. Moreover, we examined the role of sentiment in predicting openness of communication using a stepwise linear regression model. To test model accuracy, we used a split-validation set. We measured the performance of the training and testing model using area under the curve, sensitivity, specificity, and root mean square error.RESULTS:Higher "openness of communication" scores were associated with higher overall net sentiment score of the narrative, higher fear, being single, having nonacademic education, and higher informational support within the family. Our results demonstrate that NLP was highly effective in analyzing unstructured texts from individuals of different cultural and linguistic backgrounds and could also reliably predict a measure of "openness of communication" (area under the curve=0.72) in the context of genetic cancer risk associated with HBOC.CONCLUSIONS:Our study showed that NLP can facilitate assessment of openness of communication in individuals carrying a pathogenic variant associated with HBOC. Findings provided promising evidence that various features from narratives such as sentiment and fear are important predictors of interpersonal communication and self-disclosure in this context. Our approach is promising and can be expanded in the field of personalized medicine and technology-mediated communication.

This study aimed to gain a deeper understanding of genomic healthcare utilization, patient activation, and intrafamilial risk communication among racially and ethnically diverse individuals tested for BRCA variants. We employed an explanatory, sequential, mixed-methods study guided by the Theory of Planned Behavior. Participants completed an online survey, including sociodemographic, medical history, and several validated instruments. A subset of participants participated in in-depth, semi-structured interviews. A total of 242 women were included in the quantitative analyses. The majority of survey participants identified as non-Hispanic white (NHW) (n = 197, 81.4%) while 45/242 (18.5%) identified as black, Indigenous, and people of color (BIPOC). The NHW participants were more likely to communicate genetic test results with healthcare providers, family, and friends than BIPOC participants (p < 0.05). BIPOC participants had lower satisfaction with testing decisions and significantly higher ratings of personal discrimination, fatalism, resilience, uncertainty, and lower patient activation scores (p < 0.05). Participants with higher education, greater satisfaction with testing decisions, and lower resilience are more likely to communicate BRCA test results with family members through the mediating effect of patient activation. Bridging disparities to ensure that genomic healthcare benefits all people may demand theory-driven, multi-level interventions targeting the individual, interpersonal, and healthcare system levels.

This mixed-methods study sought to deepen our understanding of self-concept and experiences in balancing cancer risk/reproductive decisions after learning of BRCA+ status. First, a quantitative survey of BRCA+ women (n = 505) examined the childbearing status, risk-reducing surgery, and self-concept. At the time of testing, 307/505 (60.8%) women were of reproductive age (<40 years-old), 340/505 (67.3%) had children, and 317/505 (62.8%) had undergone risk-reducing surgery. A younger age at the time of the testing was significantly associated with the decision to have children after learning BRCA+ status or undergoing risk-reducing surgery (p < 0.001). Compared to older women, BRCA+ women of reproductive age, exhibited a more negative self-concept with significantly higher vulnerability ratings (p < 0.01). Women with a cancer diagnosis exhibited a more negative mastery ratings and worse vulnerability ratings (p < 0.01) than women without a cancer history. Compared to childless counterparts, significantly higher vulnerability ratings were observed among BRCA+ women who had children before learning their BRCA status and/or undergoing risk-reducing surgery (p < 0.001). Subsequently, a subset of women (n = 40) provided in-depth interviews to explore their experiences in decision-making. The interviews provided insights into the effects of BRCA status on decisions regarding relationships, childbearing, cancer risk management, and communicating BRCA risk to children. Integrating quantitative and qualitative findings identifies targets for tailored interventions to enhance precision health for BRCA+ women of reproductive age.

Objective Providing genetic counseling and genetic testing to at-risk blood relatives (cascade screening) is important for improving BRCA cancer outcomes. Intra-familial communication of risk is critical for cascade screening efforts yet relatively little is known about men's role in communicating BRCA risk. We sought to examine men's coping response to their BRCA status and intra-familial communication of risk to inform the development of tailored interventions that could promote cascade screening. Methods We employed a sequential mixed-methods design. First, we measured coping response (quantitative) using the Multidimensional Impact of Cancer Risk Assessment (MICRA). MICRA scores were compared between BRCA+ men, BRCA- men and BRCA+ women. Subsequently, we used template analysis to analyze qualitative interviews exploring coping and intra-familial communication of risk. The Theory of Planned Behavior (TPB) served as a guiding framework for identifying intervention targets. Results BRCA+ men (n = 36) had significantly higher levels of distress (p < 0.001), uncertainty (p < 0.001) and negative experiences (p < 0.05) compared to BRCA- male counterparts (n = 23). BRCA+ men had significantly lower distress (p < 0.001) and uncertainty (p < 0.001) than BRCA+ women (n = 406). Qualitative analysis of in-depth interviews with BRCA+ men (n = 35) identified promoters and barriers to active coping response and intra-familial communication of risk. Mapping results onto the TPB identified targets for tailoring person-centered approaches for men addressing beliefs/attitude, subjective norms, and perceived behavioral control. Conclusions Men and women appear to have different coping responses to learning their BRCA status. Developing tailored (sex-based), theory informed interventions may help promote intra-familial communication of BRCA risk and support cascade screening.

Qualitative inquiry is well positioned to aid in public education on crucial social problems. Implementing a dual perspective engages not only quantitative approaches, but centers the critical role of qualitative inquiry in uncovering a multilayered analysis of the diversity and range of lived experience that can also contribute a rich perspective onto the wider quantitatively driven macro inquiry public landscape. The case studies presented provide strategies for harnessing missed opportunities for dialogue between the macro and micro level, demonstrating the importance of applying hybrid methodological and methods perspectives onto social issues that contain both words and numbers.

Pathogenic germline variants in Breast Cancer 1/2 (BRCA) genes confer increased cancer risk. Understanding BRCA status/risk can enable family cascade screening and improve cancer outcomes. However, more than half of the families do not communicate family cancer history/BRCA status, and cancer outcomes differ according to parent of origin (i.e., maternally vs. paternally inherited pathogenic variant). We aimed to explore communication patterns around family cancer history/BRCA risk according to parent of origin. We analyzed qualitative interviews (n = 97) using template analysis and employed the Theory of Planned Behavior (TPB) to identify interventions to improve communication. Interviews revealed sub-codes of 'male stoicism and 'paternal guilt' that impede family communication (template code: gender scripting). Conversely, 'fatherly protection' and 'female camaraderie' promote communication of risk. The template code 'dysfunctional family communication' was contextualized by several sub-codes ('harmful negligence', 'intra-family ignorance' and 'active withdrawal of support') emerging from interview data. Sub-codes 'medical misconceptions' and 'medical minimizing' deepened our understanding of the template code 'medical biases'. Importantly, sub-codes of 'informed physicians' and 'trust in healthcare' mitigated bias. Mapping findings to the TPB identified variables to tailor interventions aimed at enhancing family communication of risk and promoting cascade screening. In conclusion, these data provide empirical evidence of the human factors impeding communication of family BRCA risk. Tailored, theory-informed interventions merit consideration for overcoming blocked communication and improving cascade screening uptake.

The economic downturn in Eurozone countries started in late 2007, and it continues today, over a decade later. Current Eurozone economic austerity policy is a quantitatively driven “one size fits all” policy whose goals are to decrease Eurozone countries’ debt through a set of “belt-tightening” measures that amount to massive cutbacks in the service sector. Such measures have been shown to negatively impact the most vulnerable within these societies—youth, the elderly, and single mothers and their children. This paper argues that applying a feminist standpoint approach and praxis provides a reflexive perspective for assessing the current framework and application of Eurozone austerity policies, as well as their social and economic consequences. The application of a feminist perspective and praxis assesses the degree to which austerity policy promotes social justice and transformative goals. It offers “out of the box” ways for re-thinking economic policies, which provide ways to integrate the voices and lived experiences of those most impacted by economic downturns.

We conducted a mixed-method study to examine coping response in BRCA+ women based on parent of origin (maternally vs paternally inherited BRCA mutation). Quantitative findings (n = 408) revealed paternally inherited cases had genetic testing later and were more likely to have a cancer diagnosis. Having a maternally inherited mutation was the strongest predictor of proactive risk management response. Qualitative interviews (n = 56) identified proactive responses among maternally inherited cases compared to reactive responses in paternally inherited cases. Findings underscore the importance of unbiased pedigree analysis to determine cancer risk. Women with paternally inherited BRCA mutations may benefit from additional psychosocial support.

AbstractClimate adaptation research often ignores the broader socio-cultural human sphere within which climate change takes place. Dominant viewpoints on climate adaptation derive from the biophysical world that often excludes social, economic, and political contexts that also connect to biophysical changes. Hybrid methodological mixed methods approaches to climate adaptation provide paradigmatically different questions. This perspective is useful for identifying socio-cultural aspects of climatic adaptation. To demonstrate the power of a hybrid approach for interconnecting human and non-human factors implicated in climate adaptation, we deploy an in-depth case study of N. Benin, West African farmers who increasingly must configure their farming methods to tackle erratic changes in weather. The case study examines the role gender dynamics play in climate adaptation that found few gender differences in the ways male and female farmers perceive the biophysical aspects of climate adaptation on their subsistence farming lifestyle from their initial village climate survey. However, the qualitative components of their study uncovered significant gender differences in socio-cultural adaptation challenges, vulnerabilities, and future lifestyle opportunities. We discuss the transformative policy implications about ignoring gender difference and the importance of taking an intersectional approach to variation in climate adaptation policy making.

This quantitatively driven sequential mixed methods study articulates the role of theory in mixed methods research and assesses the contribution of a mixed methods design to examining gender differences in men and women's genetic testing decisions and the psychosocial factors impacting health-seeking behaviors post-testing. A quantitative online survey of BRCA-positive mutation men and women was followed by a qualitative component consisting of semi-structured telephone interviews regarding genetic testing and post-testing decision making. Findings reveal gender differences in testing motivations: women focus on health; men focus on their family's needs. Gender differences also appeared in psychological states and surgical decisions, revealing women's more negative psychosocial reactions to a positive BRCA test result and higher rate of selecting preventative surgery.

The growth of the Internet since the millennium has opened up a myriad of opportunities for education, particularly in medicine. Although those looking for health care information used to have to turn to a face-to-face doctor’s visit, an immense library of medical advice is now available at their fingertips. The BRCA genetic predispositions (mutations of the BRCA1 and BRCA2 breast cancer genes) which expose men and women to greater risk of breast, ovarian, and other cancers can be researched extensively online. Several nonprofit organizations now offer online risk assessment and decision-making tools meant to supplement conversation with medical professionals, which in actuality are quickly replacing it. We argue here through a critical qualitative template analysis of several such tools that the discursive frameworks utilized are prone to fearmongering, commercialization, and questionable validity. Left unchecked, these assessment tools could do more harm than good in driving young women especially to take unnecessary extreme surgical action.

Current trends in health care research point to a shift from disciplinary models to interdisciplinary team-based mixed methods inquiry designs. This keynote address discusses the problems and prospects of creating vibrant mixed methods health care interdisciplinary research teams that can harness their potential synergy that holds the promise of addressing complex health care issues. We examine the range of factors and issues these types of research teams need to consider to facilitate efficient interdisciplinary mixed methods team-based research. It is argued that concepts such as disciplinary comfort zones, a lack of attention to team dynamics, and low levels of reflexivity among interdisciplinary team members can inhibit the effectiveness of a research team. This keynote suggests a set of effective strategies to address the issues that emanate from the new field of research inquiry known as team science as well as lessons learned from tapping into research on organizational dynamics.

Current trends in health care research point to a shift from disciplinary models to interdisciplinary team-based mixed methods inquiry designs. This keynote address discusses the problems and prospects of creating vibrant mixed methods health care interdisciplinary research teams that can harness their potential synergy that holds the promise of addressing complex health care issues. We examine the range of factors and issues these types of research teams need to consider to facilitate efficient interdisciplinary mixed methods team-based research. It is argued that concepts such as disciplinary comfort zones, a lack of attention to team dynamics, and low levels of reflexivity among interdisciplinary team members can inhibit the effectiveness of a research team. This keynote suggests a set of effective strategies to address the issues that emanate from the new field of research inquiry known as team science as well as lessons learned from tapping into research on organizational dynamics.

The number of papers submitted to Sex Roles that present, analyze, and discuss qualitative data has been increasing in recent years (Frieze 2008, 2013). At the same time, mixed methods studies are becoming ever more popular within the fields of social and behavioral sciences, especially because mixed methods’ design possibilities lend themselves well to interdisciplinary investigations. In addition to studies utilizing a qualitative approach, Sex Roles: A Journal of Research, a journal dedicated to multiple disciplines, also welcomes submissions that reflect upon mixed methods projects. To expand upon Editor Yoder’s (2016) recent reflections on the directions and editorial practices of this journal, my editorial focuses on our expectations for both qualitative and mixed methods submissions to Sex Roles. As part of the Sex Roles editorial team, I look forward to providing consultation to the editor about qualitative and mixed methods research inquiry approaches.

Through an analysis of an online survey of women who tested positive for the BRCA genetic mutation for breast cancer, this research uses a social constructionist and feminist standpoint lens to understand the decision-making process that leads BRCA-positive women to choose genetic testing. Additionally, this research examines how they socially construct and understand their risk for developing breast cancer, as well as which treatment options they undergo post-testing. BRCA-positive women re-frame their statistical medical risk for developing cancer and their post-testing treatment choices through a broad psychosocial context of engagement that also includes their social networks. Important psychosocial factors drive women's medical decisions, such as individual feelings of guilt and vulnerability, and the degree of perceived social support. Women who felt guilty and fearful that they might pass the BRCA gene to their children were more likely to undergo risk reducing surgery. Women with at least one daughter and women without children were more inclined toward the risk reducing surgery compared to those with only sons. These psychosocial factors and social network engagements serve as a "nexus of decision making" that does not, for the most part, mirror the medical assessments of statistical odds for hereditary cancer development, nor the specific treatment protocols outlined by the medical establishment.