Creation and beta testing of a "choose your own adventure" digital simulation to reinforce motivational interviewing skills in genetic counseling.

Standardized patients and/or role-playing are commonly used for practicing genetic counseling (GC) skills. Use of digital simulation, incorporating gamification elements, would require fewer resources to sustain than standardized patients. This manuscript reports steps taken and the lessons learned from creating a digital "Choose your own adventure" simulation in which students select preferred dialog for a genetic counselor who is seeing an adult patient to discuss genetic testing for the known pathogenic variant that caused familial adenomatous polyposis (FAP) in their father. The case has three endings, one of which is attained by selecting options that are mostly consistent with motivational interviewing counseling techniques. We conducted a preliminary evaluation of our beta version among nine GC students and one educator using a survey to assess acceptability and appropriateness as well as to elicit open-ended feedback. All participants agreed or strongly agreed with statements indicating the case was acceptable, appropriate, and fun. Users particularly appreciated the immediate feedback given throughout the case simulation. Many users wanted more options to select from and listed various other recommendations, including several which would require substantial resources to implement.

Factors that differentiate cancer risk management decisions among females with pathogenic/likely pathogenic variants in PALB2, CHEK2, and ATM.

PURPOSE: Following disclosure of pathogenic or likely pathogenic variants in hereditary cancer genes, patients face cancer risk management decisions. Through this mixed-methods study, we investigated cancer risk management decisions among females with pathogenic or likely pathogenic variants in PALB2, CHEK2, and ATM to understand why some patients follow National Comprehensive Cancer Network guidelines, whereas others do not. METHODS: Survey and interview data were cross-analyzed using a 3-stage approach. Identified factors were used to conduct coincidence analysis and differentiate between combinations of factors that result in following or not following guidelines. RESULTS: Of the 13 participants who underwent guideline inconsistent prophylactic surgery, 12 fit 1 of 3 unique patterns: (1) cancer-related anxiety in the absence of trust in care, (2) provider recommending surgery inconsistent with National Comprehensive Cancer Network guidelines, or (3) surgery occurring before genetic testing. Two unique patterns were found among 18 of 20 participants who followed guidelines: (1) anxiety along with trust in care or (2) lack of anxiety and no prophylactic surgery before testing. CONCLUSION: Health care provider recommendations and trust in care may influence whether individuals receive care that is congruent with risk levels conferred by specific genes. Interventions are needed to improve provider knowledge, patient trust in non-surgical care, and patient anxiety.

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.

The development and preliminary evaluation of the Genetic Counseling Skills Checklist.

Genetic counseling (GC) relies on communication to help people understand and adapt to genetic contributions of disease, and there is need for a practical and reliable method of comprehensively documenting GC communication skills without intensive coding. To this end, we created a novel process measure called the Genetic Counseling Skills Checklist (GCSC), utilizing previously validated measures, communication/counseling frameworks, and prior research findings. A multistage iterative process was used to develop, evaluate, and modify the GCSC to improve its clarity, usability, and content validity. To assess interrater reliability, randomly assigned, untrained individuals (i.e., coders) used the GCSC version 3 to code multiple simulated GC sessions. Average measures intraclass correlation coefficients (ICCs) were calculated for each of the 8 GCSC process categories using one-way, random effects models. After relatively minor modifications to the GCSC, two pairs of experienced coders used GCSC version 4 to independently code additional GC sessions and Cohen's Kappa coefficients (κ) were calculated to assess interrater reliability for each process category. The GCSC contains five to eight items within each category and demonstrates good content validity given its ability to capture nearly all GC skills that genetic counselors reported using in a prior qualitative study. Interrater reliability of GCSC version 3 among coders with limited experience was moderate or good for 6 out of the 8 process categories as evidenced by ICCs ranging from 0.55 to 0.86. Average interrater reliability of GCSC version 4 among one pair of experienced coders was strong for all eight process categories (κ ranging from 0.82 to 0.94); among the second pair of experienced coders scores were strong for six categories (κ ranging from 0.80 to 0.87) and moderate for two categories (κ of 0.77 and 0.78). The results suggest the need for training and experience to assure adequate interrater reliability across GCSC coders. Future work is needed to create a formalized training program for coders, complete a larger study to further validate the measure, and use the GCSC to document variability in skills used across providers and sessions.

Shared Decision-Making Experiences of Couples with Inherited Cancer Risk Regarding Family Building.

Patients with hereditary cancer predisposition syndromes have a high likelihood of passing germline mutations to future offspring. Patients at risk for inherited cancer may not have started and/or completed building their families; thus, they must decide about having children and consider the possibility of passing on their germline mutation. Utilizing the Shared Decision Making (SDM) Model, this study explores family building decision-making communication processes in opposite-sex couples with inherited cancer risk (ICR). Fifteen couples completed two recorded, analogue discussions and dyadic interviews at two time points. Participants were recruited through social media and snowball sampling. The constant comparison method was utilized to thematically analyze the data. When couples discussed family building options (FBOs), several themes were identified: FBO risks, FBO considerations, genetic-related FBO logistics, and life FBOs logistics. When deliberating family building decisions, couples shared easy conversational topics (e.g. FBO options and potential child's cancer risk due to a genetic variant) and difficult/conflict-inducing topics (e.g. preparing for possibilities, parenting, emotions, finances, and timing). Last, couples self-reported primary and secondary FBOs. The findings of this study capture couples' decision-making communication process while considering their experiences. Clinicians and practitioners can utilize these findings to support couples' family building decisions considering their ICR.

The BRCA1/2 Previvor Information Journey: Understanding What Helps or Hinders.

BRCA1/2 previvors - individuals who have a genetic mutation that increases their lifetime risk of developing breast or ovarian cancer - have unique information needs. Previvors can experience distress and uncertainty when these needs are not met, which can have negative consequences on their physical and psychological health. Previous research suggests meeting previvors' information needs is one way to combat these potential harmful effects. However, limited past research has examined previvors' perceptions of the helpfulness of information. Therefore, through surveying 101 previvors, this study explored previvors' perceptions of the (un)helpfulness of information, what (lack of) barriers previvors face to finding desired information, and the information sources they utilized. A thematic analysis revealed that previvors generally viewed information as helpful (through empowerment, coping, camaraderie, and action) but not always (evident in information overload). Previvors also reported several barriers (such as "the healthcare system in general", exclusivity, and uncertainty), while others reported a lack of resistance to finding desired information. Additionally, frequencies were calculated to find that various healthcare providers, support groups, and friends and family were common information sources. Taken together, these results offer a psychosocial model for understanding the previvor information journey, displaying how the themes are interconnected and unique for each previvor.

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.

Revising the FOCUS framework through a qualitative study assessing self-reported counseling skills of genetic counselors.

Frameworks have been developed to help conceptualize clinical genetic counseling (GC), and observational studies have helped understand the process and content of GC sessions. However, additional research is needed to identify GC skills (behaviors or strategies) that practicing genetic counselors report consciously using to meet certain GC goals and determine what common terminology, if any, is being used to describe the various skills. Nineteen practicing genetic counselors in prenatal, pediatric, or cancer specialties were interviewed to elicit how they achieve session goals. Interview recordings were transcribed, coded thematically, and categorized using process categories from the communication strategy domain of the Framework for Outcomes in Clinical Communication Services (FOCUS). Reported skills largely fit within FOCUS, though findings prompted minor modifications of several FOCUS process categories and consolidation of the categories from 13 into 10. Although genetic counselor respondents reported a broad range of strategies and behaviors, they rarely had terms for skills they described. Results reveal concrete examples of GC skills, provide evidence for refinement of FOCUS, and highlight the need for establishing common terminology to describe these skills.

How Women Suffering from Endometriosis Disclose about their Disorder at Work.

Endometriosis is a stigmatized health disorder that impacts approximately 10% of the female population around the world and is characterized by severe physical and psychological symptoms. Through the interpretive perspective, this study investigated how women with endometriosis disclose about their disorder in the workplace. Potential participants were recruited using Reddit and Facebook. Participants (N = 119) completed an anonymous, online, open-ended questionnaire. Open-ended responses were analyzed using thematic analysis. Five themes emerged related to how endometriosis patients disclose about their disorder at work: 1) frequency of communication 2) level of openness 3) type of content shared 4) preferred setting for conversations and 5) preferred conversational partner. Furthermore, the findings revealed that disclosure about endometriosis is significantly impacted by workplace environment. These findings are contextualized by the theoretical framework provided by the disclosure process model. Overall, this study offers a starting point for deeper empirical investigation of mechanisms influencing disclosure and informs future research directed toward developing interventions that may enable organizations to better accommodate affected employees.

"I'm Worth Saving": Making Sense of Medication Taking in a Care Coordination Organization.

Patients and healthcare providers (HCPs) may communicatively make sense of medication taking in divergent ways. Often, HCPs prioritize medication adherence, the extent to which patients consume medications as prescribed. In contrast, patients may focus on how medications fit in with their everyday lives. Care coordination organizations (CCOs) provide cohesive, interdisciplinary, health services to chronically ill patients and may help bridge the gap between patient and HCP sensemaking. Our qualitative study asked: How do patients and HCPs involved in a CCO communicatively make sense of medication taking? Through thematic analysis, we found three themes related to patients' sensemaking. Patients (N = 9) made sense of medication taking (1) as necessary and important through embodied experiences, social discourses, and interpersonal interactions; (2) as easy when supported; and (3) through building bonds. We also found three themes related to HCPs' sensemaking: HCP participants (N = 5) made sense of medication taking (1) through dialogue with patients; (2) by interacting in patients' home spaces; and (3) through building relationships with patients. Our final theme explores how communicative sensemaking became more complicated for participants in the context of psychotropic medications. Using Mishler's Voice of the Lifeworld (VoL) and Weick's sensemaking, we advance a constitutive perspective on medication taking. We suggest that researchers and HCPs should focus on constructing shared meanings about medication taking through dialogue, rather than on increasing adherence. Our study provides evidence that, by promoting engagement with the VoL, CCOs may facilitate such dialogs.

IMProving care After inherited Cancer Testing (IMPACT) study: protocol of a randomized trial evaluating the efficacy of two interventions designed to improve cancer risk management and family communication of genetic test results.

BACKGROUND: Implementing genetic testing for inherited cancer predisposition into routine clinical care offers a tremendous opportunity for cancer prevention and early detection. However, genetic testing itself does not improve outcomes; rather, outcomes depend on implemented follow-up care. The IMPACT study is a hybrid type I randomized effectiveness-implementation trial to simultaneously evaluate the effectiveness of two interventions for individuals with inherited cancer predisposition focused on: 1) increasing family communication (FC) of genetic test results; and 2) improving engagement with guideline-based cancer risk management (CRM). METHODS: This prospective study will recruit a racially, geographically, and socioeconomically diverse population of individuals with a documented pathogenic/likely pathogenic (P/LP) variant in an inherited cancer gene. Eligible participants will be asked to complete an initial trial survey and randomly assigned to one of three arms: A) GeneSHARE, a website designed to increase FC of genetic test results; B) My Gene Counsel's Living Lab Report, a digital tool designed to improve understanding of genetic test results and next steps, including CRM guidelines; or C) a control arm in which participants continue receiving standard care. Follow-up surveys will be conducted at 1, 3, and 12 months following randomization. These surveys include single-item measures, scales, and indices related to: 1) FC and CRM behaviors and behavioral factors following the COM-B theoretical framework (i.e., capability, opportunity, and motivation); 2) implementation outcomes (i.e., acceptability, appropriateness, exposure, and reach); and 3) other contextual factors (i.e., sociodemographic and clinical factors, and uncertainty, distress, and positive aspects of genetic test results). The primary outcomes are an increase in FC of genetic test results (Arm A) and improved engagement with guideline-based CRM without overtreatment or undertreatment (Arm B) by the 12-month follow-up survey. DISCUSSION: Our interventions are designed to shift the paradigm by which individuals with P/LP variants in inherited cancer genes are provided with information to enhance FC of genetic test results and engagement with guideline-based CRM. The information gathered through evaluating the effectiveness and implementation of these real-world approaches is needed to modify and scale up adaptive, stepped interventions that have the potential to maximize FC and CRM. TRIAL REGISTRATION: This study is registered at Clinicaltrials.gov (NCT04763915, date registered: February 21, 2021). PROTOCOL VERSION: September 17th, 2021 Amendment Number 04.

Exploring patient and provider perspectives on the intersection between fertility, genetics, and family building.

OBJECTIVE: Adolescent and young adult (AYA) cancer patients have distinct medical and psychosocial needs and fertility is a key concern. Early age of onset is a risk factor for hereditary cancer and AYAs are more likely to experience reduced fertility. This has implications for future family building decisions and fertility preservation (FP) and genetic testing/counseling (GT/GC) education. METHODS: Patients diagnosed with cancer between the ages of 18 and 39 and health care providers (HCPs) who treat AYA cancer patients were recruited from a single institution. Qualitative interviews explored AYA patients' and HCPs' concerns regarding their experiences discussing genetics and FP. RESULTS: The majority of patients (n = 17) were female (59%), and the majority of HCPs (n = 18) were male (67%). Overall, participants had differing perceptions of FP and GT/GC-related information provided during the clinical visit. Patients indicated initiating the conversation about FP and did not recall HCPs discussing GT/GC with them. HCPs indicated patients were often overwhelmed with too much information and comprehension of this discussion is limited. HCPs also felt patients' emotions/beliefs determined their information-seeking behavior specific to FP and GT/GC. Participants felt educational materials should be developed and delivered in a video format depicting a patient-provider interaction or patient testimonial. CONCLUSION: AYA patients are often overwhelmed by a cancer diagnosis; the complexity/volume of information regarding FP and GT/GC may hinder understanding and decision-making about family building. Educational materials that help patients understand what questions to ask HCPs about FP and GT/GC should be developed to improve knowledge, psychosocial well-being, and future family building decisions.

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.

"I Am Uncertain About What My Uncertainty Even Is": Men's Uncertainty and Information Management of Their BRCA-Related Cancer Risks.

Men with a germline pathogenic BRCA1 or BRCA2 variant have increased risks for developing breast, pancreatic, prostate, and melanoma cancers, but little is known about how they understand and manage their cancer risks. This study examines how men with BRCA-related cancer risks manage uncertainty and information about their risks. Twenty-five men who were either a BRCA carrier or have a BRCA-positive first-degree family member that put the participant at 50% chance of also being a BRCA carrier were interviewed for this study. Using uncertainty management theory as a theoretical framework, this study demonstrates that men manage uncertainty by seeking information from female family members, websites, and healthcare providers, and are under-informed about their cancer risks. Further, in handling their information, men prefer information about cancer risk percentages and screening recommendations in the form of lists presented to them via websites, printed literature, proactive healthcare providers, and an identifiable male spokesperson. Finally, men used BRCA-related cancer risk information to make decisions about whether or not to engage in screening and prevention, manage their BRCA-related cancer risks, and overall family well-being-yet often at the expense of their own individual risks. Implications for genetic counseling and family conversations are discussed.

Previvors' Uncertainty Management Strategies for Hereditary Breast and Ovarian Cancer.

Individuals with a genetic predisposition to develop hereditary breast and ovarian cancer (HBOC), but who have not been diagnosed with cancer, are referred to as previvors. Although genetic testing may reduce previvors' worries about whether or not they have a high genetic cancer risk, testing positive produces negative emotions and long-term uncertainty-thus requiring the management of uncertainty. Existing research indicates family, friends, and social support networks are limited in their assistance for previvors' uncertainty management. Therefore, this study examined how health care providers may assist previvors in uncertainty management by asking: What strategies do BRCA-positive previvors enact with their health care providers to help manage their uncertainty about HBOC? Purposive sampling was employed to recruit participants via online social media. The final sample consisted of 34 BRCA-positive women. Interviews revealed four uncertainty management strategies-seeking health care providers as informational sources, seeking health care providers as partners for decision making, seeking health care providers for supportive communication, and seeking referrals from health care providers for social support networks. Findings indicate that health care providers who are knowledgeable about BRCA, provide information, answer questions, check understanding, and provide additional resources assist previvors in managing their uncertainties by distinguishing options and fostering meaning.

Men's and Women's Approaches to Disclosure About BRCA-Related Cancer Risks and Family Planning Decision-Making.

Little is known about how men and women who test positive for a BRCA gene mutation or have a strong family history of carrying a BRCA mutation manage disclosures about their BRCA-related cancer risks and family planning decision-making. By conducting interviews with 25 men and 20 women, this study investigated men's and women's approaches to disclosing their BRCA-related cancer risks and family planning decision-making. Guided by the Disclosure Decision-Making Model (DD-MM), this study demonstrates that men and women assess both information and the recipients of disclosures when making disclosure decisions. Theoretical implications for the DD-MM are discussed along with practical implications for hereditary cancer risk and family planning.

"It was an Emotional Baby": Previvors' Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk.

Women who test positive for a BRCA genetic mutation are at an increased risk for developing hereditary breast and ovarian cancer and have a 50% chance of passing on their genetic mutation to their children. The purpose of this study was to investigate how women who test positive for a BRCA mutation but have not been diagnosed with cancer make decisions regarding family planning. Analysis of interviews with 20 women revealed they engage in logical and emotional decision-making styles. Although women want to be logical to reduce their hereditary cancer risk, emotions often complicate their decision-making. Women experience fear and worry about a future cancer diagnosis, yet also desire to create a family, particularly having children through natural conception. That is, women negotiate having preventative surgeries in a logical doctor-recommended timeframe but also organize those decisions around emotional desires of motherhood. Overall, this study demonstrates the complex decisions women who test positive for a BRCA mutation must make in regards to genetic testing timing, family planning, and overall quality of life.

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.

Celebrity Health Announcements and Online Health Information Seeking: An Analysis of Angelina Jolie's Preventative Health Decision.

On May 14, 2013, Angelina Jolie disclosed she carries BRCA1, which means she has an 87% risk of developing breast cancer during her lifetime. Jolie decided to undergo a preventative bilateral mastectomy (PBM), reducing her risk to 5%. The purpose of this study was to analyze the type of information individuals are exposed to when using the Internet to search health information regarding Jolie's decision. Qualitative content analysis revealed four main themes--information about genetics, information about a PBM, information about health care, and information about Jolie's gender identity. Broadly, the identified websites mention Jolie's high risk for developing cancer due to the genetic mutation BRCA1, describe a PBM occasionally noting reasons why she had this surgery and providing alternatives to the surgery, discuss issues related to health care services, costs, and insurances about Jolie's health decision, and portray Jolie as a sexual icon, a partner to Brad Pitt, a mother of six children, and an inspirational humanitarian. The websites also depict Jolie's health decision in positive, negative, and/or both ways. Discussion centers on how this actress' health decision impacts the public.

"Let's Sit Forward": Investigating Interprofessional Communication, Collaboration, Professional Roles, and Physical Space at EmergiCare.

Communication is key to hospital emergency department (ED) caregiving. Interventions in ED processes (and health care organizing in general) have struggled when they have ignored the professional role expectations that enable and constrain providers with patients and each other. Informed by a communication as design (CAD) approach, this study explored the intersections of professional roles, physical space, and communication at EmergiCare-an academic medical center and level-1 trauma center hospital. Based on an ethnographic analysis of field notes from 70 hours of shadowing at the EmergiCare ED, this study identified two specific communication patterns, "case talk" and "comfort talk," that reflect different logics for communication in health care organizing. The findings indicate (a) that case and comfort talk have different status and therefore different influence in EmergiCare ED interprofessional communication and (b) that the arrangement of physical space at EmergiCare ED reflects the requirements of case talk more so than comfort talk. These findings have important implications for theory and practice, including the importance of considering the macro-discursive construction of professional roles reified in the arrangement of work space.