Uncertainty in healthcare and health decision making: Five methodological and conceptual research recommendations from an interdisciplinary team.

Uncertainty is prevalent in various health contexts. It is imperative to understand how health-related uncertainty can impact individuals' healthcare experiences and health decision making. The purpose of the present paper is to provide five overarching recommendations from an interdisciplinary team of experts to address gaps in the literature on health-related uncertainty. We present a case study of health-related uncertainty within the specific context of alcohol use to demonstrate these gaps and provide context for the recommendations. The five recommendations concerning health-related uncertainty include: (1) use common, consistent terminology to discuss uncertainty, (2) clarify measures of individual differences in response to uncertainty, (3) increase research on uncertainty and affect, (4) investigate the impact of the channel through which uncertainty is communicated, and (5) develop theory-driven interventions to improve uncertainty management. We conclude by reviewing health contexts in which health-related uncertainty exists and note how our recommendations complement existing reviews and data.

Integrating clinical genetics in cardiology: Current practices and recommendations for education.

PURPOSE: Recent advances in genetics can facilitate the identification of at-risk individuals and diagnosis of cardiovascular disorders. As a nascent field, more research is needed to optimize the clinical practice of cardiovascular genetics, including the assessment of educational needs to promote appropriate use of genetic testing. METHODS: Qualitative interviews conducted with cardiovascular specialists (N = 43) were audiotaped. Thematic analysis was conducted on professional transcripts. RESULTS: Participants recognized the value of genetics in identifying and diagnosing at-risk individuals. However, organizational systems, cost, and feeling of unpreparedness were identified as barriers. Participants felt that the rapid pace of genetic science resulted in further challenges to maintaining an adequate knowledge base and highlighted genetics experts' importance. Even when a genetics expert was available, participants wanted to know more about which patients benefit most from genetic testing and expressed a desire to better understand management recommendations associated with a positive test result. CONCLUSION: Participants recognized the benefit but felt underprepared to provide recommendations for genetic testing and, in some cases, lacked organizational resources to refer patients to a genetics expert. Additional training in genetics for cardiology practitioners and ensuring availability of a genetics expert can improve the use of genetics in cardiology settings.

Developing theory-driven narrative messages with personal stories: A step-by-step guide.

OBJECTIVE: Narratives are commonly utilized in health promotion and behavior change interventions due to their efficacy over didactic or expository interventions. While grounding narratives in behavioral theory may render them more effective, balancing the integration of theoretical and creative aspects of the narrative development process while maintaining authenticity is challenging. Thus, this manuscript describes a rigorous process through which researchers can intentionally integrate theory and personal stories for health interventions. METHODS: The process for creating theory-driven narratives involves the following steps: (1) defining the purpose of the narratives, (2) selecting a guiding theory, (3) collecting personal testimonials, (4) immersing self into testimonials, (5) identifying central narratives and important variations, (6) considering additional theories, (7) piecing quotes into cohesive stories, (8) filling in the gaps, and (9) checking for resonance. RESULTS: To exemplify this step-by-step process, we provide a case study from our research involving the development of a psychoeducational intervention to model information seeking strategies for managing cancer-related uncertainty among women who have recently tested positive for pathogenic genetic variants that increase risk for hereditary breast and ovarian cancer. CONCLUSIONS: We discuss special considerations for developing theory-driven narrative interventions and reflect on how this rigorous step-by-step process can be adapted by other researchers.

Exploring a brief medical improvisational performing arts intervention for genetic counseling graduate students.

Psychosocial counseling is the foundation of genetic counseling. Genetic counseling students are required to receive in-depth training on psychosocial counseling techniques. In other medical disciplines, "medical improv," an educational method derived from improvisational theatre, has been used to allow trainees to practice clinical skills without also having to focus on medical knowledge they've not yet mastered. The present study aims to investigate the acceptability of medical improv as an educational tool for genetic counseling students. Fourteen genetic counseling students and new genetic counselors completed a 2-hr medical improv workshop and participated in follow-up interviews to discuss the workshop. Participants' responses to the intervention were positive, with 92.9% of participants responding that they would recommend medical improv training to other genetic counseling students. Participants described the medical improv workshop as helping build psychosocial skills in a safe environment, which may facilitate the use of more advanced counseling skills in clinical situations. By training students to practice psychosocial skills and building students' confidence, medical improv may help genetic counseling students and genetic counselors be more effective in challenging clinical situations, and to feel more comfortable in experimenting with new ideas and psychosocial techniques in their clinical practice.

Are some narratives better than others?: The impact of different narrative forms on adolescents' intentions to text and drive.

Psychological reactance theory posits individuals seek to restore freedom when threatened. Communication scholars have hypothesized persuasive messages can constitute threats to freedom. The current study engages questions about the potential for different forms of narratives in public service announcements (PSAs) to trigger freedom threats by examining responses to a PSA campaign that utilized three forms of narrative (celebrity testimonials, peer testimonials, and accident stories) to decrease adolescent texting and driving intentions. Participants (N = 214) watched anti-texting and driving narratives, and completed measures of threat to freedom, anger, negative cognition, and attitudes/intentions toward texting/driving. Compared to celebrity/peer testimonial PSAs, accident stories triggered increased anger and, indirectly, decreased intentions to drive safely. The results also suggest the need for continued examination of the best way to model psychological reactance theory, and the value of further research explicating anger as a mechanism of message effects.

Previving: How Unaffected Women with a BRCA1/2 Mutation Navigate Previvor Identity.

Receiving a positive result for a BRCA1/2 (BRCA) mutation - indicating a high lifetime risk to develop hereditary breast and ovarian cancer - can significantly alter a woman's identity. BRCA-positive women who have not been diagnosed with cancer may be labeled "previvors," which distinguishes those at-risk for developing cancer, but have not had cancer. Using semi-structured interviews (N = 25), this study explored how unaffected BRCA-positive women navigate the previvor identity. Women in this sample differed on their definitions of previvor, views of acceptance, rejection, or ambivalence toward the label, and identification as a previvor. Understanding how women interpret and embrace the previvor identity may help inform communication for those with BRCA genetic mutations, but whom have not been diagnosed with cancer.

A randomized controlled intervention to promote readiness to genetic counseling for breast cancer survivors.

OBJECTIVE: Breast cancer (BC) survivors with a genetic mutation are at higher risk for subsequent cancer; knowing genetic risk status could help survivors make decisions about follow-up screening. Uptake of genetic counseling and testing (GC/GT) to determine BRCA status is low among high risk BC survivors. This study assessed feasibility, acceptability, and preliminary efficacy of a newly developed psychoeducational intervention (PEI) for GC/GT. METHODS: High risk BC survivors (N = 119) completed a baseline questionnaire and were randomized to the intervention (PEI video/booklet) or control (factsheet) group. Follow-up questionnaires were completed 2 weeks after baseline (T2), and 4 months after T2 (T3). We analyzed recruitment, retention (feasibility), whether the participant viewed study materials (acceptability), intent to get GC/GT (efficacy), and psychosocial outcomes (eg, perceived risk, Impact of Events Scale [IES]). t tests or chi-square tests identified differences between intervention groups at baseline. Mixed models examined main effects of group, time, and group-by-time interactions. RESULTS: Groups were similar on demographic characteristics (P ≥ .05). Of participants who completed the baseline questionnaire, 91% followed through to study completion and 92% viewed study materials. A higher percentage of participants in the intervention group moved toward GC/GT (28% vs 8%; P = .027). Mixed models demonstrated significant group-by-time interactions for perceived risk (P = .029), IES (P = .027), and IES avoidance subscale (P = .012). CONCLUSIONS: The PEI was feasible, acceptable, and efficacious. Women in the intervention group reported greater intentions to pursue GC, greater perceived risk, and decreased avoidance. Future studies should seek to first identify system-level barriers and facilitators before aiming to address individual-level barriers.

Health beliefs associated with readiness for genetic counseling among high risk breast cancer survivors.

We used the Health Belief Model (HBM) to explore factors associated with readiness for genetic counseling among breast cancer survivors. Breast cancer survivors meeting NCCN genetic counseling referral criteria completed questionnaires capturing demographic and clinical information and factors guided by the HBM, including health beliefs, psychosocial variables, and cues to action. Using logistic regression, we examined whether the above variables differed based on readiness group (pre-contemplators, who did not plan to make a genetic counseling appointment, and contemplators, who planned to make a genetic counseling appointment in the next 1-6 months). Of 111 participants, 57% were pre-contemplators and 43% were contemplators. Higher cancer worry was associated with increased odds of being a contemplator (OR = 2.99; 95% CI = 1.37-6.54) and higher perceived barriers to genetic counseling were associated with decreased odds of being a contemplator (OR = 0.31; 95% CI = 0.11-0.85). Those who reported a family member encouraged them to get tested were more likely to be contemplators (OR = 3.57; 95% CI = 1.19-10.70). Our results suggest key factors for predicting genetic counseling readiness include cancer worry, perceived barriers, and family influence. There is need for increased genetic counseling awareness. Better understanding of factors related to survivors' decisions about counseling can inform tailored interventions to improve uptake and ultimately reduce cancer recurrence risk.

Loss/Gain Framing, Dose, and Reactance: A Message Experiment.

Whether a loss or gain frame has a persuasive advantage in communicating health risks is a matter of ongoing debate. Findings reported in the literature are mixed, suggesting that framing effects are likely complex and may be influenced by a combination of factors. This study examined reactance as a mediator and dose as a moderator of loss/gain framing effects. Adults (N = 1,039) read framed messages about the health consequences of physical (in)activity in varying message doses (i.e., number of framed statements). Compared to loss frames, gain frames generated more threat to freedom and reactance. Dosage exerted significant influence at the extremes; the one-dose messages invoked less intentions to exercise compared to the four-dose messages. Planned contrasts revealed significant frame × dose interactions. Notably, the one-dose gain-framed messages triggered significantly more freedom threat and less intentions to engage in physical activity-a situation that changed when the information was loss-framed or when the dosage was increased.

Dispositional pandemic worry and the health belief model: promoting vaccination during pandemic events.

Background: Promoting vaccination during pandemics is paramount to public health, yet few studies examined theoretical motivations for vaccination during pandemics. Thus, the relationships between dispositional pandemic worry, constructs of the health belief model (HBM) and vaccination during the H1N1 pandemic were studied. Methods: Participants (N = 1377) completed surveys assessing dispositional pandemic worry, HBM variables and H1N1 vaccination. Principle axis factor analysis and point biserial correlations were conducted. Differences in worry and vaccination were assessed via independent samples t-tests. Relationships between vaccination, demographics and worry were investigated using hierarchical linear regression. PROCESS analysis was conducted to explicate the relationship between worry and vaccination intention. Results: A two-factor structure of dispositional pandemic worry-worry frequency and worry severity-was confirmed. Dispositional worry was higher among those who intended to and received H1N1 vaccine. Worry frequency and worry severity were positively related to vaccination. Threat, benefits and barriers mediated the impact of worry severity and threat and barriers mediated the impact of worry frequency on vaccination intentions. Conclusions: Messages increasing dispositional worry and benefits while decreasing barriers may boost vaccination behavior during a pandemic event. Future study of relationships between dispositional worry and HBM variables is warranted.

A Research Agenda for Communication Scholars in the Precision Medicine Era.

The 2015 announcement of the Precision Medicine Initiative (PMI) galvanized and energized efforts to reconsider medical practice through tailoring of prevention and treatment recommendations based on genetics, environment, and lifestyle. Numerous disciplines contributed white papers identifying challenges associated with PMI and calling for discipline-specific research that might provide solutions to such challenges. Throughout these white papers, the prominence of communication in achieving the PMI's goals is obviously apparent. In this article, we highlight opportunities for communication scholars' contributions to the PMI based on challenges identified in white papers from other disciplines and work already conducted by research teams in the field of communication.

Communicating Uncertain Science to the Public: How Amount and Source of Uncertainty Impact Fatalism, Backlash, and Overload.

Public dissemination of scientific research often focuses on the finding (e.g., nanobombs kill lung cancer) rather than the uncertainty/limitations (e.g., in mice). Adults (n = 880) participated in an experiment where they read a manipulated news report about cancer research (a) that contained either low or high uncertainty (b) that was attributed to the scientists responsible for the research (disclosure condition) or an unaffiliated scientist (dueling condition). Compared to the dueling condition, the disclosure condition triggered less prevention-focused cancer fatalism and nutritional backlash.

A preliminary investigation of genetic counselors' information needs when receiving a variant of uncertain significance result: a mixed methods study.

PURPOSE: The aim of this study was to explore genetic counselors' information preferences on reports of variant of uncertain significance (VUS) results from cancer genetic testing. METHODS: This mixed methods report (quantitative and qualitative approaches) utilized a survey of genetic counselors containing closed- and open-ended questions to explore genetic counselors' information needs and perceptions of the industry's current information sharing practices. Descriptive statistics were calculated for responses to the closed-ended questions, and thematic analysis guided the interpretation of the open-ended questions. RESULTS: Of the 267 participants (28.6% response rate), the majority indicated a perceived lack of information on VUS laboratory reports, were concerned about the perceived practice of withholding information, and stated the information they wanted to see. Although most did not indicate how additional information would be used, some reported they would provide information directly to patients, and others reported that the information would be used to contextualize the VUS result when counseling patients. CONCLUSION: This analysis identified information that genetic counselors believe is needed in VUS reports, indicating what they believe are best practices in lieu of guidelines for laboratories currently providing genetic testing services. Future studies should explore how genetic counselors use additional information contained in VUS reports.Genet Med 17 9, 739-746.

The Health Belief Model as an explanatory framework in communication research: exploring parallel, serial, and moderated mediation.

The Health Belief Model (HBM) posits that messages will achieve optimal behavior change if they successfully target perceived barriers, benefits, self-efficacy, and threat. While the model seems to be an ideal explanatory framework for communication research, theoretical limitations have limited its use in the field. Notably, variable ordering is currently undefined in the HBM. Thus, it is unclear whether constructs mediate relationships comparably (parallel mediation), in sequence (serial mediation), or in tandem with a moderator (moderated mediation). To investigate variable ordering, adults (N = 1,377) completed a survey in the aftermath of an 8-month flu vaccine campaign grounded in the HBM. Exposure to the campaign was positively related to vaccination behavior. Statistical evaluation supported a model where the indirect effect of exposure on behavior through perceived barriers and threat was moderated by self-efficacy (moderated mediation). Perceived barriers and benefits also formed a serial mediation chain. The results indicate that variable ordering in the Health Belief Model may be complex, may help to explain conflicting results of the past, and may be a good focus for future research.

Public estimates of cancer frequency: cancer incidence perceptions mirror distorted media depictions.

Compared with incidence rates, certain cancers are over- or underrepresented in news coverage. Past content analytic research has consistently documented these news distortions, but no study has examined whether they are related to public perception of cancer incidence. Adults (N = 400) completed a survey with questions about perceived cancer incidence, news consumption, and attention to health news. Cancer incidence perceptions paralleled previously documented news distortions. Overrepresented cancers were overestimated (e.g., blood, head/brain) and underrepresented cancers were underestimated (e.g., male reproductive, lymphatic, thyroid, and bladder). Self-reported news consumption was related to perceptual distortions such that heavier consumers were more likely to demonstrate distorted perceptions of four cancers (bladder, blood, breast, and kidney). Distortions in risk perception and news coverage also mirrored discrepancies in federal funding for cancer research. Health care professionals, journalists, and the public should be educated about these distortions to reduce or mitigate potential negative effects on health behavior and decision making.

Possible unintended consequences of pediatric clinician strategies for communicating about social-emotional and developmental concerns in diverse young children.

INTRODUCTION: Screening to promote social-emotional well-being in toddlers has positive effects on long-term health and functioning. Communication about social-emotional well-being can be challenging for primary care clinicians for various reasons including lack of time, training and expertise, resource constraints, and cognitive burden. Therefore, we explored clinicians' perspectives on identifying and communicating with caregivers about social-emotional risk in toddlers. METHOD: In 2021, semistructured interviews were conducted with pediatric clinicians (N = 20) practicing in Federally Qualified Health Centers in a single metropolitan area. Most participants identified as female (n = 15; 75%), white non-Hispanic/Latino (n = 14; 70%), and were Doctors of Medicine or Osteopathic Medicine (n = 14; 70%). Thematic analysis was conducted on audio-recorded interview transcripts. RESULTS: Clinicians used various approaches to identify social-emotional concerns which were sometimes difficult to distinguish from other developmental concerns. The clinician-caregiver relationship guided identification and communication practices and cut-across themes. Themes include: starting with caregivers' concerns, communicating concerns with data and sensitivity, navigating labels, culture, and stigma, and limiting communication based on family capacity and interest. DISCUSSION: Prioritizing the clinician-caregiver relationship is consistent with best practice and family-centered care. Yet, the dearth of standardized decision support may undermine clinician confidence and impede timely conversations about social-emotional concerns. An evidence-based approach with developmentally based culturally informed quantitative tools and standardized decision supports could help ensure equitable management and decision making about young children's social and emotional well-being and development. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Awareness of alcohol as a breast cancer risk factor and intentions to reduce alcohol consumption among U.S. young adult women.

Alcohol consumption is prevalent in young adult women and linked with breast cancer risk. Research to inform interventions targeting alcohol consumption as a breast cancer prevention strategy is limited. We examined young women's awareness of alcohol use as a breast cancer risk factor, identified correlates of awareness, and determined how awareness and conceptual predictors relate to intentions to reduce drinking. Women aged 18-25 years who drank alcohol in the past month (N = 493) completed a cross-sectional survey. Measures captured sociodemographics, breast cancer risk factors, awareness of alcohol use as a breast cancer risk factor, intentions to reduce drinking, and conceptual predictors. Analyses examined correlates of awareness and associations between awareness, conceptual predictors, and intentions to reduce drinking. Awareness was low (28%) and intentions to reduce drinking were moderate (M = 2.60, SD = 0.73, range 1-4). In multivariable analyses, awareness was associated with greater worry about cancer, beliefs that there's not much one can do to reduce cancer risk and everything causes cancer, higher perceived breast cancer risk, and stronger beliefs that reducing drinking reduces breast cancer risk. Awareness was not associated with intentions to reduce drinking. Younger age, older age of alcohol initiation, negative attitudes towards alcohol, fewer friends consuming alcohol, and stronger self-efficacy were associated with intentions to reduce drinking. Few young women recognize alcohol consumption as a breast cancer risk factor. Researchers and policymakers can apply our findings to design new or refine existing interventions to optimize their impact on awareness and alcohol consumption in young women.

Alcohol use is common among young adult women and is linked to an increased risk of breast cancer later in life. This study aimed to identify factors linked to young women's awareness of alcohol as a breast cancer risk factor and factors linked to intentions to reduce drinking. We surveyed 493 women aged 18­25 who resided in Ohio and reported drinking alcohol in the past month. Only 28% of the women were aware that alcohol use increases breast cancer risk, and intentions to reduce drinking were moderate. Factors associated with awareness of alcohol use as a breast cancer risk factor included cancer worry, believing there's not much you can do to lower your risk of cancer, believing everything causes cancer, higher perceived risk of breast cancer, and stronger beliefs that drinking less reduces breast cancer risk. Factors linked to intentions to reduce drinking included younger age, older age at first drinking, more negative attitudes about alcohol, believing fewer friends drink, and higher confidence to reduce drinking. The findings can help researchers and policymakers create new interventions to educate young women about the link between alcohol consumption and breast cancer risk and reduce alcohol use as a breast cancer prevention strategy.

Process Evaluation in Health Communication Media Campaigns: A Systematic Review.

Objective. The objective is to examine the scope of health communication media campaign process evaluation methods, findings, and dissemination practices. Data Source. A systematic review of peer-reviewed literature was conducted using database searches. Study Inclusion and Exclusion Criteria. Published studies on process and implementation evaluation of health campaigns with a media component were included. Exclusion criteria included not health, non-empirical, no media campaign, or a focus on other evaluation types. Data Extraction. Articles were assessed for general campaign information, theory use, and details about process evaluation plan and procedures. Data Synthesis. A coding scheme based on 9 process evaluation best practice elements (e.g., fidelity and context) was applied. Process evaluation methods, measures, and reporting themes were synthesized. Results. Among 691 unique records, 46 articles were included. Process evaluation was the main focus for 71.7% of articles, yet only 39.1% reported how process evaluation informed campaign implementation strategy. Articles reported 4.39 elements on average (SD = 1.99; range 1-9), with reach (87.0%) and recruitment (73.9%) described most frequently, yet reporting was inconsistent. Further, the level of detail in reporting methods, theory, and analysis varied. Conclusions. Process evaluation provides insight about mechanisms and intervening variables that could meaningfully impact interpretations of outcome evaluations; however, process evaluations are less often included in literature. Recommendations for evidence-based process evaluation components to guide evaluation are discussed.

Practitioners' Confidence and Desires for Education in Cardiovascular and Sudden Cardiac Death Genetics.

Background Educating cardiologists and health care professionals about cardiovascular genetics and genetic testing is essential to improving diagnosis and management of patients with inherited cardiomyopathies and arrhythmias and those at higher risk for sudden cardiac death. The aim of this study was to understand cardiology and electrophysiology practitioners' current practices, confidence, and knowledge surrounding genetic testing in cardiology and desired topics for an educational program. Methods and Results A one-time survey was administered through purposive email solicitation to 131 cardiology practitioners in the United States. Of these, 107 self-identified as nongenetic practitioners. Over three quarters of nongenetic practitioners reported that they refer patients to genetic providers to discuss cardiovascular genetic tests (n=82; 76.6%). More than half of nongenetic practitioners reported that they were not confident about the types of cardiovascular genetic testing available (n=60; 56%) and/or in ordering appropriate cardiovascular genetic tests (n=66; 62%). In addition, 45% (n=22) of nongenetic practitioners did not feel confident making cardiology treatment recommendations based on genetic test results. Among all providers, the most desired topics for an educational program were risk assessment (94%) and management of inherited cardiac conditions based on guidelines (91%). Conclusions This study emphasizes the importance of access to genetics services in the cardiology field and the need for addressing the identified deficit in confidence and knowledge about cardiogenetics and genetic testing among nongenetic providers. Additional research is needed, including more practitioners from underserved areas.

Alcohol and Cancer: Existing Knowledge and Evidence Gaps across the Cancer Continuum.

Alcoholic beverages are carcinogenic to humans. Globally, an estimated 4.1% of new cancer cases in 2020 were attributable to alcoholic beverages. However, the full cancer burden due to alcohol is uncertain because for many cancer (sub)types, associations remain inconclusive. Additionally, associations of consumption with therapeutic response, disease progression, and long-term cancer outcomes are not fully understood, public awareness of the alcohol-cancer link is low, and the interrelationships of alcohol control regulations and cancer risk are unclear. In December 2020, the U.S. NCI convened a workshop and public webinar that brought together a panel of scientific experts to review what is known about and identify knowledge gaps regarding alcohol and cancer. Examples of gaps identified include: (i) associations of alcohol consumption patterns across the life course with cancer risk; (ii) alcohol's systemic carcinogenic effects; (iii) alcohol's influence on treatment efficacy, patient-reported outcomes, and long-term prognosis; (iv) communication strategies to increase awareness of the alcohol-cancer link; and (v) the impact of alcohol control policies to reduce consumption on cancer incidence and mortality. Interdisciplinary research and implementation efforts are needed to increase relevant knowledge, and to develop effective interventions focused on improving awareness, and reducing harmful consumption to decrease the alcohol-related cancer burden.