Examining the communication work of women who have tested BRCA-positive: "I feel this responsibility to let people know".

Inheriting a pathogenic variant in the BRCA1 or BRCA2 gene considerably increases a woman's risk levels for developing breast and ovarian cancer. In addition to serious physical health implications, women with a BRCA pathogenic variant may face psychosocial challenges, including those related to navigating the often demanding process of communicating about topics regarding BRCA with family and other social network members. Based on in-depth interviews with 24 women who tested BRCA-positive, we found that-consistent with the conceptualization of communication work articulated by Donovan-Kicken et al. (2012) as an extension of the theory of illness trajectories (Corbin & Strauss, 1988)-the labor of communicating about BRCA genetic risk entails (a) duties, (b) challenges, (c) strategies, and (d) shared work. Within each category, our results illuminate particular characteristics of communication work for women who have tested BRCA-positive, which are commonly tied to the profound health consequences that a pathogenic variant may have for them and, potentially, for their genetic relatives. Our findings offer useful theoretical implications regarding communication work in this context. Furthermore, our results yield valuable practical insight for genetic counselors and other health care professionals regarding the struggles that can accompany communication work for women who have tested BRCA-positive as well as the strategies that participants reported using to manage or avoid these challenges.

Technology, data, people, and partnerships in addressing unmet social needs within Medicaid Managed Care.

BACKGROUND: Individuals with unmet social needs experience adverse health outcomes and are subject to greater inequities in health and social outcomes. Given the high prevalence of unmet needs among Medicaid enrollees, many Medicaid managed care organizations (MCOs) are now screening enrollees for unmet social needs and connecting them to community-based organizations (CBOs) with knowledge and resources to address identified needs. The use of screening and referral technology and data sharing are often considered key components in programs integrating health and social services. Despite this emphasis on technology and data collection, research suggests substantial barriers exist in operationalizing effective systems. METHODS: We used qualitative methods to examine cross-sector perspectives on the use of data and technology to facilitate MCO and CBO partnerships in Kentucky, a state with high Medicaid enrollment, to address enrollee social needs. We recruited participants through targeted sampling, and conducted 46 in-depth interviews with 26 representatives from all six Kentucky MCOs and 20 CBO leaders. Qualitative descriptive analysis, an inductive approach, was used to identify salient themes. RESULTS: We found that MCOs and CBOs have differing levels of need for data, varying incentives for collecting and sharing data, and differing valuations of what data can or should do. Four themes emerged from interviewees' descriptions of how they use data, including 1) to screen for patient needs, 2) to case manage, 3) to evaluate the effectiveness of programs, and 4) to partner with each other. Underlying these data use themes were areas of alignment between MCOs/CBOs, areas of incongruence, and areas of tension (both practical and ideological). The inability to interface with community partners for data privacy and ownership concerns contributes to division. Our findings suggest a disconnect between MCOs and CBOs regarding terms of their technology interfacing despite their shared mission of meeting the unmet social needs of enrollees. CONCLUSIONS: While data and technology can be used to identify enrollee needs and determine the most critical need, it is not sufficient in resolving challenges. People and relationships across sectors are vital in connecting enrollees with the community resources to resolve unmet needs.

The Impact of Health Communication Research on Medical and Health Professional Education and Training.

In this essay, we review how health communication scholarship has been translated into various communication skills trainings (CSTs), we present four case studies of how health communication research informed the development and implementation of specific CSTs, and we reflect on how we can productively define "impact" in looking back as well as looking forward within this line of research.

Women's Metaphors About BRCA Gene Testing and How They Can Inform Health Communication Theory and Practice.

Genetic testing can detect whether an individual carries a harmful variant in the BRCA1 or BRCA2 (Breast Cancer 1 or 2) gene which, if present, drastically increases a woman's risk for breast and ovarian cancer. The experience of BRCA gene testing can be an emotionally laden process yielding significant uncertainty. In this study, we examined women's experiences of BRCA gene testing by exploring how participants communicatively framed and made sense of this process through the use of metaphors. Comparing uncertain and unfamiliar experiences to familiar references through metaphor can help people in challenging health-related situations with sense-making and communicating complex emotions. Furthermore, metaphors can be employed as a therapeutic tool by health care professionals, but their use has not often been studied regarding experiences of genetic testing, including BRCA gene testing. We conducted in-depth interviews with 42 women who have undergone BRCA gene testing (regardless of results), and analyzed data using constant comparative techniques. Eight categories of metaphors that women used surrounding BRCA gene testing were evident in the data, including those related to (a) knowledge is power; (b) gambling; (c) a journey; (d) a rollercoaster; (e) battle, disaster, or wreckage; (f) Pandora's box or a can of worms; (g) doom and gloom; and (h) the release or placing of a weight. Results enhance our understanding of women's experiences related to the uncertainty-inducing process of BRCA gene testing and lead to valuable theoretical implications and practical recommendations, including regarding the potential use of metaphors in patient-provider communication about BRCA genetic risk.

Feasibility and Acceptability of a Novel Intensive Care Unit Communication Intervention ("Let's Talk") and Initial Assessment Using the Multiple Goals Theory of Communication.

Background: Family members of intensive care unit (ICU) patients often report poor communication, feeling unprepared for ICU family meetings, and poor psychological outcomes after decision-making. The objective of this study was to create a tool to prepare families for ICU family meetings and assess feasibility of using Communication Quality Analysis (CQA) to measure communication quality of family meetings. Methods: This observational study was conducted at an academic tertiary care center in Hershey, PA from March 2019 to 2020. Phase 1a involved conceptual design. Phase 1b entailed acceptability testing of 2 versions of the tool (text-only, comic) with 9 family members of non-capacitated ICU patients; thematic analysis of semi-strucutred interviews was conducted. Phase 1c assessed feasibility of applying CQA to audio-recorded ICU family meetings (n = 17); 3 analysts used CQA to assess 6 domains of communication quality. Wilcoxon Signed Rank tests were used to interpret CQA scores. Results: Four themes emerged from Phase 1b interviews: participants 1) found the tool useful for meeting preparation and organizing thoughts, 2) appreciated emotional content, 3) preferred the comic form (67%), and 4) had indifferent or negative perceptions about specific elements. In Phase 1c, clinicians scored higher on the CQA content and engagement domains; family members scored higher on the emotion domain. CQA scores in the relationship and face domains had the lowest quality ratings. Conclusions: Let's Talk may help families become better prepared for ICU family meetings. CQA provides a feasible approach to assessing communication quality that identifies specific areas of strengths and weaknesses in communication.

Michelle P. Medicaid Waivers: Exploring Sources of Uncertainty for Parent Caregivers of Children with Disabilities.

Guided by Brashers's uncertainty management theory, the purpose of this study was to better understand the experience of family caregivers utilizing Medicaid waivers to subsidize health care for children with disabilities. Specifically, the focus of this study was to explore caregivers' experience with Kentucky's Michelle P. Waiver (MPW), a Medicaid waiver that provides robust benefit offerings to children with disabilities. Little is known about how parents come to know about the waiver, and the communication challenges they experience when applying for and navigating their child's health care through Medicaid. Data were gathered by narratively interviewing 31 parents of children who are currently receiving services through the MPW. Data were analyzed using narrative thematic analysis. The analysis focused on the community-level communication that contributes to parent caregivers' uncertainty about the MPW system. Findings show that parents experience unique personal, social, and medical uncertainties related to the MPW when navigating care for their child in the community. This project contributes to the health communication literature theoretically by expanding the conceptualization of the uncertainty in illness framework to include the means of health care (i.e. Medicaid) as a consequential element of an individual's illness experience.

Oncologists' Perceptions of Strategies for Discussing the Cost of Care with Cancer Patients and the Meaning of Those Conversations.

To better understand what makes cost-of-care communication between oncologists and cancer patients more or less successful, we conducted in-depth interviews with 32 oncologists (22 male, 10 female) who were board-certified in medical, surgical, or radiation oncology. Through qualitative descriptive analysis by four coders, we found that oncologists used six broad strategies to discuss cost with patients: open discussion, avoidance, reassurance, warning, outsourcing, and educating. We also found that oncologists invoked certain meanings of cost conversations: cost conversations as holistic care, coercion, a matter of timing, risking patient suspicions, advocacy, unwanted distraction, transparency, bad news delivery, problem-solving, pointless, informed decision making, or irrelevant. These meanings appeared to be linked to oncologists enacting certain strategies (e.g., oncologists who invoked cost conversations as holistic care tended to enact open discussion, those who saw cost conversations as risky tended to use avoidance). Theoretically, our results suggest that the invoked meaning of a difficult conversation may be a key explanatory mechanism for differentiating high-quality from low-quality communication in cost conversations. Practically, our findings suggest that oncologists should consider how well the invoked meaning of the cost conversation is serving their own and their patients' goals.

COVID-19 and MCO-community partnerships to address enrollee social needs.

OBJECTIVES: Many Medicaid managed care organizations (MCOs) now screen enrollees and connect them to community-based organizations (CBOs) to address unmet social needs. COVID-19 has significantly disrupted health care delivery and overall economic activity in the United States. We examined how partnerships between Medicaid MCOs and CBOs to address social determinants of health have been affected by the pandemic. STUDY DESIGN: Guided by questions and recruitment strategies developed with our stakeholder advisory board, we conducted 26 interviews with representatives from all 6 of Kentucky's Medicaid MCOs. METHODS: In-depth, structured interviews for data collection and iterative content analyses to identify themes. RESULTS: Several themes emerged, including substantial increases in enrollees' unmet needs and the demand to find new ways to be responsive, changing funding patterns, disruptions to and evolving modes of communication, and shifting partner relationships. In virtually all areas of impact, COVID-19 has been associated with both negative and positive change. CONCLUSIONS: Unmet social needs associated with the pandemic placed tremendous strain on CBOs, limiting their capacity to sustain some programs and partnerships. Isolation associated with COVID-19 also had wide-ranging effects on service delivery, communication with enrollees and partners, and the ability to maintain relationships. Nonetheless, the pandemic also had some silver linings, including additional resources and flexibility for addressing unmet needs. Federal and state agencies, along with MCO leaders, should carefully evaluate what innovations have been particularly effective during the pandemic and craft new flexibilities into their policies, procedures, and regulations.

A mixed methods study exploring requests for unproven COVID therapies such as ivermectin and healthcare distrust in the rural South.

The COVID-19 pandemic has led to contentious discourse regarding unproven COVID-19 therapies (UCTs),(e.g. ivermectin). Despite recommendations against it, ivermectin remains, in some areas, highly demanded. The goal of this study is to understand patient and provider perspectives about UCTs (e.g., ivermectin) and how responses to requests for UCTs impact healthcare distrust. This mixed methods observational study was conducted in a rural healthcare system in the Southern United States. Adults (n = 26) with a history of COVID-19 or clinicians (n = 8) from the same system were interviewed using questionnaires assessing healthcare distrust and qualitatively interviewed exploring perceptions about UCTs. Patient themes were: 1) Importance of anecdotal stories for decision-making; 2) Use of haphazard approaches to 'research'; 3) Strong distrust of government and healthcare organizations; 4) Inherent trust in local healthcare; 5) Decision-making as weighing pros/cons; and 6) Feeling a right to try medications. High survey medians indicated high distrust with differences of 8.5 points for those who requested/used ivermectin versus those who did not (p = 0.027). Clinician themes were: 1) Frustration when patients trust social media over clinicians; 2) Acceptance of community beliefs about UCTs; 3) Distrust originating outside of the healthcare system; 4) Feeling torn about prescribing UCTs to build trust; and 5) Variable educational strategies. When clinicians are perceived as aligned with government, this may void patients' trust of clinicians. Clinicians should leverage trust in local healthcare and distance themselves from distrusted information sources. Ethical questions arise regarding appropriateness of acquiescing to patient requests for ivermectin for building trust.

Comparing two advance care planning conversation activities to motivate advance directive completion in underserved communities across the USA: The Project Talk Trial study protocol for a cluster, randomized controlled trial.

BACKGROUND: Advance care planning (ACP) is a process involving conversations between patients, loved ones, and healthcare providers that consider patient preferences for the types of medical therapies received at the end of life. Underserved populations, including Black, Hispanic, rural, and low-income communities are less likely to engage in ACP than other communities, a health inequity that results in lower-quality care and reduced hospice utilization. The purpose of this trial is to compare efficacy of two interventions intended to motivate ACP (particularly advance directive completion) for those living in underserved communities. METHODS: This 3-armed cluster, randomized controlled mixed methods design is being conducted in 75 community venues in underserved communities across the USA. The goal of the trial is to compare the efficacy of two interventions at motivating ACP. Arm 1 uses an end-of-life conversation game (Hello); Arm 2 uses a nationally utilized workshop format for ACP conversations (The Conversation Project); and Arm 3 uses an attention control game (TableTopics). Events are held in partnership with 75 local community-based host organizations and will involve 1500 participants (n=20 per event). The primary outcome is completion of a visually verified advance directive at 6 months post-event. Primary analyses compare efficacy of each intervention to each other and the control arm. Secondary mixed methods outcomes include (a) other ACP behaviors and engagement; (b) communication quality; (c) impact of sociocultural environment on ACP (via qualitative interviews); and (d) implementation and sustainability. Subgroup analyses examine outcomes for Black, Hispanic, and rural groups in particular. DISCUSSION: This trial will add to the evidence base behind various conversational ACP interventions, examine potential mechanisms of action for such interventions, and provide qualitative data to better understand the sociocultural environment of how community-based ACP interventions are experienced by underserved populations. Results will also provide important data for future researchers to learn whether visual verification of advance directives is necessary or whether reliance on self-reported outcomes is of comparable value. Data from this study will inform ways to effectively motivate underserved communities to participate in advance care planning. TRIAL REGISTRATION: ClinicalTrials.gov NCT04612738. Registered on October 12, 2020. All information from the WHO Trial Registration Data Set can be found within the protocol.

Communication Quality Analysis: A user-friendly observational measure of patient-clinician communication.

Communication Quality Analysis (CQA) is a rigorous transcript-based coding method for assessing clinical communication quality. We compared the resource-intensive transcript-based version with a streamlined real-time version of the method with respect to feasibility, validity, reliability, and association with traditional measures of communication quality. Simulated conversations between 108 trainees and 12 standardized patients were assessed by 7 coders using the two versions of CQA (transcript and real-time). Participants also completed two traditional communication quality assessment measures. Real-time CQA was feasible and yielded fair to excellent reliability, with some caveats that can be addressed in future work. CQA ratings were moderately correlated with traditional measures of communication quality, suggesting that CQA captures different aspects of communication quality than do traditional measures. Finally, CQA did not exhibit the ceiling effects observed in the traditional measures of communication quality. We conclude that real-time CQA is a user-friendly method for assessing communication quality that has the potential for broad application in training, research, and intervention contexts and may offer improvements to traditional, self-rated communication measures.

Identifying Conversational Strategies for Psychiatrists in Discussing Substance Use with Adolescent Patients.

Child and adolescent psychiatrists are uniquely positioned to discuss substance use with high risk patients; however, there has been little research about these conversations and their characteristics. To identify communication strategies for navigating conversations about substance use with adolescent patients, we conducted 21 in-depth interviews with practicing child and adolescent psychiatrists. Findings from this study identify four strategies that child and adolescent psychiatrists reported as being successful: expressing empathy, avoiding resistance, honoring autonomy, and managing family involvement. In addition to describing these strategies, we briefly describe a theoretical framework that might help to explain the perceived success of these strategies, and we offer recommendations for how to apply our findings to improve psychiatric practice.

Are Cost-of-Care Conversations Best Practice? A Qualitative Study of Oncologists' Attitudes and Practice.

PURPOSE: Patients' desire for cost conversations exceeds the incidence of such conversations, and many oncologists report avoiding cost conversations despite reporting willingness to have them. Our objective was to examine oncologists' attitudes toward cost conversations and how those attitudes affect practice. METHODS: An experienced investigator conducted individual interviews with oncologists practicing in Kentucky. Participants were asked about their attitude toward and experience with cost conversations and their advice for discussing cost with patients. Interview transcripts were analyzed by a four-member team using qualitative descriptive analysis to identify themes. RESULTS: Participants were 32 MDs (male = 68.8%) age 31-77 years who were board-certified in medical oncology (53.1%), surgical oncology (25.0%), or radiation oncology (21.9%). We categorized participants into two groups: (1) those who viewed cost conversations as best practice and reported pursuing such conversations (37.5%) and (2) those who viewed cost conversations as not best practice and reported avoiding them (62.5%). Our analysis revealed three parallel themes for each category: Cost conversation attitudes and practice were based on (1) making good treatment decisions, (2) being a good clinician, and (3) having a good relationship with patients. CONCLUSION: Not all oncologists view cost conversations as best practice. To improve cost conversation attitudes and practice, cost conversations can be framed as a strategic tool that-when used well-fosters optimal decision making, professionalism, and the therapeutic relationship.

Primary Care Physicians' Strategic Pursuit of Multiple Goals in Cost-of-Care Conversations with Patients.

Despite the importance of cost-of-care conversations between physicians and patients, such discussions are not well understood. We used multiple goals theory to examine the specific goals that are salient in these discussions and how physicians pursue these goals. We used qualitative descriptive coding to analyze the verbatim transcripts from in-depth interviews with 36 primary care physicians. Our analysis identified a number of goals that are commonly salient in cost conversations, including task goals (reducing the cost of care, making treatment decisions, and promoting patient adherence), identity goals (reinforcing their professional identity as a "good doctor," acting as a steward of medical resources, being an advocate for patients, and preventing patient embarrassment), and relational goals (strengthening the physician-patient relationship and mitigating damage to the physician-patient relationship). In addition, participants articulated a number of ways in which these goals compete with each other, making cost conversations challenging. We found that physicians use a common repertoire of rhetorical strategies to manage these goals, including directly addressing cost, avoiding discussion of cost, and falsely reassuring patients about cost concerns. Our analysis revealed that the meaning of the cost conversation explains the connection between physicians' goals and strategies. Specifically, we found that physicians invoke polysemic meanings of cost conversations to achieve their multiple goals using seemingly contradictory strategies. The results of our analysis have implications for building theory and improving practice.

Pneumonia-induced endothelial amyloids reduce dendritic spine density in brain neurons.

Pseudomonas aeruginosa pneumonia elicits endothelial cell release of cytotoxic amyloids that can be recovered from the bronchoalveolar lavage and cerebrospinal fluids of critically ill patients. Introduction of these cytotoxic amyloids into the lateral ventricle impairs learning and memory in mice. However, it is unclear whether the amyloids of lung origin (1) are neurotropic, and (2) cause structural remodeling of hippocampal dendrites. Thus, we used electrophysiological studies in brain slices and structural analysis of post-mortem tissues obtained from animals exposed to endothelium-derived amyloids to assess these issues. The amyloids were administered via three different routes, by intracerebroventricular, intratracheal, and intraperitoneal injections. Synaptic long-term potentiation was abolished following intracerebroventricular amyloid injection. Fluorescence dialysis or Golgi-impregnation labeling showed reduced dendritic spine density and destabilized spines of hippocampal pyramidal neurons 4 weeks after intracerebroventricular amyloid injection. In comparison, endothelial amyloids introduced to the airway caused the most prominent dendritic spine density reduction, yet intraperitoneal injection of these amyloids did not affect spine density. Our findings indicate that infection-elicited lung endothelial amyloids are neurotropic and reduce neuronal dendritic spine density in vivo. Amyloids applied into the trachea may either be disseminated through the circulation and cross the blood-brain barrier to access the brain, initiate feed-forward amyloid transmissibility among cells of the blood-brain barrier or access the brain in other ways. Nevertheless, lung-derived amyloids suppress hippocampal signaling and cause injury to neuronal structure.

Working toward evidence-based guidelines for cost-of-care conversations between patients and physicians: A systematic review of the literature.

RATIONALE: As healthcare costs continue to rise, so does the importance of having cost-of-care conversations during medical office visits, especially for patients from vulnerable populations and patients with high-cost illnesses such as cancer. Such conversations remain relatively rare, however, even though physicians and patients say they want to have them. Furthermore, there is a lack of evidence-based guidelines for encouraging cost conversations and improving their quality. OBJECTIVE: The purpose of this project was to conduct a systematic review of the cost-of-care conversations literature, focusing on empirical studies to characterize the state of the literature and provide a foundation for developing evidence-based guidelines for these important conversations. METHOD: We searched seven electronic databases and identified an initial list of 1,986 records, 54 of which met inclusion criteria. We reviewed those articles to identify study purpose, use of theory, conceptual and operational definitions of cost conversations, sample characteristics, research methods, variables relevant to cost conversations, and relevant study findings. RESULTS: Results revealed that this literature (a) consists overwhelmingly of cross-sectional survey research set in the United States, (b) defines cost conversations chiefly as those focused on healthcare or medication costs (either in general or out-of-pocket), (c) is focused primarily on establishing incidence/frequency of cost conversations but also considers patient/provider desire for, attitudes/beliefs toward, and perceived barriers to cost conversations, and (d) lacks theoretical guidance. There were very few findings that could provide actionable evidence to guide quality conversations about reducing cost of care. We offer observations and recommendations for the next steps in cost conversations research so that patients and physicians can work together to promote quality care at affordable costs.

Uncertainty Management and Decision Making: Parents' Experiences During their First Visit to a Multidisciplinary Clinic for their Child's Vascular Anomaly.

PURPOSE: To gain a better understanding of parental decision making in situations of uncertainty and multidisciplinary care, we explored parents' decision-making experiences while seeking care for their child's vascular anomaly at a multidisciplinary clinic at a large Midwestern children's hospital. DESIGN AND METHODS: We collected data using semi-structured interviews with 29 parents after they met with multiple specialists for the care of their child's vascular anomaly. RESULTS: The findings revealed parents' attempts to manage decision-related uncertainty about their child's vascular anomaly included seeking information, avoiding information, and seeking support from the specialists. Parents described how information management both facilitated and obstructed decision making. CONCLUSIONS: Overall, the study reveals several benefits and challenges of making decisions about the management of uncertain childhood conditions, like vascular anomalies, in a multidisciplinary context. The information-rich environment produces information-management dilemmas that challenge parents' decision making efforts. Therefore, parents relied on the support of the team of specialists to make decisions about their child's treatment. PRACTICE IMPLICATIONS: The study offers practical implications concerning the barriers of autonomy in decision making. Healthcare professionals should acknowledge the potential for parents' to have shifting information and decision-making goals and preferences, and should explicitly support parents throughout the decision-making process.

Promoting Oral Health in Appalachia: Effects of Threat Label and Source Accent on Message Acceptance.

This study examined the effects of threat label (i.e., the name assigned to a health threat) and source accent (i.e., the source's manner of pronunciation) on Appalachian residents' acceptance of oral health promotion messages. Participants (N = 348) listened to an audiotaped oral health promotion message about tooth decay or Mountain Dew Mouth; the message was delivered either in a standard American English or a Southern accent. Compared to the label Mountain Dew Mouth, the label tooth decay elevated perceptions of threat susceptibility, threat severity, and response-efficacy and resulted in higher message acceptance. The effect of threat label on message acceptance was mediated by severity perceptions. Participants attributed more status to the source and agreed more with her message when she spoke in a standard than a Southern accent. The effect of source accent on message acceptance was mediated by status perceptions. These findings suggest that the success of persuasive health messages depends not only on message content (i.e., what is said), but also on how that content is linguistically framed and delivered (i.e., how it is said).