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The conflation of race and genetic ancestry can have harmful consequences. Biological conceptualizations of race have long been used to justify inequities and distract from social structures that afford opportunities to some that are unjustly denied to others. Despite recent efforts within the scientific community to distinguish between the sociopolitical constructs of race and ethnicity and the biological constructs of genetic ancestry and genetic similarity, their conflation continues to influence genomic research and its translation into clinical care. One overlooked aspect of this problematic conflation is the extent to which discrete monoracial and monoethnic categorization systems persist and perpetuate unequal benefit-sharing in the clinical translation of genomic technologies. In genetic service delivery, reliance on discrete racial and ethnic categories undermines the clinical translation of genomic technologies for large segments of the global population. For multiracial and multiethnic individuals, who have complex identities that defy discrete categorization systems, the potential benefits of genomic discoveries are especially elusive. Scholars have recently begun to call for the inclusion of multiracial, multiethnic, and admixed individuals in race, ethnicity, and ancestry frameworks in genetics and genomics. However, little work has been done to explore and address the unique challenges and opportunities posed by multiracial/multiethnic individuals in genetic counseling specifically. We discuss how conceptualizing diversity along discrete racial and ethnic lines perpetuates inequitable patient care and limits efforts to increase inclusion and belonging within genetic counseling. Moreover, we argue that ongoing efforts to mitigate racial inequity must actively challenge the paradigm of monoracial and monoethnic categories to accomplish their goal.
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Educational use of clinical simulation is a way for students to immerse themselves within a realistic yet safe and structured environment as they practice clinical skills. It is widely used in healthcare training and evaluation, and there are best practices for design, implementation, debriefing, and assessment. An increasing number of genetic counseling graduate programs use simulation in various ways, ranging from role-plays to working with professional simulated/standardized patient (SP) actors. At this time, there is very little consistency across programs, research on the approaches, and standards by which simulation is incorporated into training. Simulation is an understudied but promising approach for genetic counselor (GC) education and assessment. After graduation, GCs demonstrate their competence as entry-level providers through American Board of Genetic Counseling (ABGC) multiple-choice examination (MCE), along with their participatory clinical encounters from graduate training. Data from genetic counseling and other professions highlight the limitations and biases of MCEs, suggesting they not only fail to accurately capture competency, but also that they disadvantage underrepresented individuals from entering the field. In addition, MCEs are limited as a tool for assessing nuanced counseling and communication skills, as compared to more quantitative scientific knowledge. We propose that innovative, evidence-based approaches such as simulation have the potential to not only enhance learning, but also to allow GCs to better demonstrate competency during training and in relation to the board examination. Collaborative approaches, research, and funding are needed to further explore the viability of routinely incorporating simulation into GC training and assessment.
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Aconselhamento Genético , Testes Genéticos , Humanos , Escolaridade , Aprendizagem , EstudantesRESUMO
Clinician racial bias has been associated with less patient-centered communication, but little is known about how it affects trainees' communication. We investigated genetic counseling students' communication during sessions with Black or White standardized patients (SPs) and the extent to which communication was associated with SP race or student scores on the Race Implicit Association Test (IAT). Sixty students conducted a baseline SP session and up to two follow-up sessions. Students were randomly assigned to a different White or Black SP and one of three clinical scenarios for each session. Fifty-six students completed the IAT. Session recordings were coded using the Roter Interaction Analysis System. Linear regression models assessed the effects of IAT score and SP race on a variety of patient-centered communication indicators. Random intercept models assessed the within-student effects of SP race on communication outcomes during the baseline session and in follow-up sessions (n = 138). Students were predominantly White (71%). Forty students (71%) had IAT scores indicating some degree of pro-White implicit preference. Baseline sessions with White relative to Black SPs had higher patient-centeredness scores. Within-participant analyses indicate that students used a higher proportion of back-channels (a facilitative behavior that cues interest and encouragement) and conducted longer sessions with White relative to Black SPs. Students' stronger pro-White IAT scores were associated with using fewer other facilitative statements during sessions with White relative to Black SPs. Different patterns of communication associated with SP race and student IAT scores were found for students than those found in prior studies with experienced clinicians.
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Communication is essential to effective genetic counseling, but few studies have systematically evaluated methods of assessing communication skills among genetic counseling trainees. The study's objective is to compare the strength of associations between standardized patient (SP) satisfaction with simulated genetic counseling sessions and student skill use during the sessions, as reported by SPs and students. We hypothesized that (1) Both SP- and student-reported skill use will be significantly associated with SP satisfaction ratings during the baseline simulation and (2): SP ratings of student skill use will show a stronger relationship to SP satisfaction than student self-rating of skill use. Sixty genetic counseling students and recent graduates (referred to as "students") from accredited U.S. and Canadian programs participated in the study and completed a baseline virtual-simulated genetic counseling session. Both students and SPs completed post-session questionnaires about communication skill use (a 22-item checklist) and SPs completed a satisfaction questionnaire based on the session (a 14-item Likert scale). Multilevel regression models assessed associations between SP satisfaction during the baseline session and SP- or student-reported skill use. SP satisfaction was significantly associated with skill use reported by both SPs and students, but the model based on SP report explained a higher proportion of the variance in SP satisfaction than student-reported skill use (SP model fixed effects R2 = 27%, adjusted R2 = 21%; vs. student model R2 = 7%, adjusted R2 = -2%). For both the SP and student models, use of more skills from the LISTEN domain (which focused on eliciting the patient's perspective) was associated with higher SP satisfaction, while other skill category domains were not. These findings support the SP satisfaction measure as sensitive to variation in student performance of key communication skills, especially those eliciting the patient's perspective. Moreover, SP assessment of session satisfaction can be a useful assessment of student communication performance and a meaningful proxy for actual patient satisfaction.
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Satisfação do Paciente , Estudantes de Medicina , Humanos , Aconselhamento Genético , Canadá , Comunicação , Estudantes de Medicina/psicologia , Assistência Centrada no Paciente , Competência ClínicaRESUMO
Technology provides opportunities to enhance communication skills training for genetic counseling graduate students. We assessed the acceptability of an online communication training program. Graduate student volunteers completed five online training modules on basic communication skills with opportunities to practice the skills within three simulated/standardized patient (SP) sessions. Participants completed online questionnaires reporting on acceptability, perceived usefulness, and realism of the modules and SP sessions. They also reported on the ease of transferring skills from the modules to clinical practice. Out of the 60 students who completed the baseline session, 35 (58%) completed all five training modules. Out of these 35 students, most found the modules to be useful (94%) and agreed that they were relevant to clinical practice (97%). At least 88% of participants found the genetic counselors, patient, and case scenarios to be realistic. Twenty-eight students had participated in clinical rotations since completing the intervention. Of these, 17 (61%) reported that it was at least slightly easy to use the skills in actual clinical cases. Most students also reported being able to transfer the skills they had learned into clinical practice. While the training was well-received, the relatively low completion rate of 58% raises concern that the intervention may need formal integration into the program curriculum to succeed due to the time and effort demands on students.
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BACKGROUND: Prospective genetic evaluation of patients at this referral research hospital presents clinical research challenges. OBJECTIVES: This study sought not only a single-gene explanation for participants' immune-related presentations, but viewed each participant holistically, with the potential to have multiple genetic contributions to their immune phenotype and other heritable comorbidities relevant to their presentation and health. METHODS: This study developed a program integrating exome sequencing, chromosomal microarray, phenotyping, results return with genetic counseling, and reanalysis in 1505 individuals from 1000 families with suspected or known inborn errors of immunity. RESULTS: Probands were 50.8% female, 71.5% were ≥18 years, and had diverse immune presentations. Overall, 327 of 1000 probands (32.7%) received 361 molecular diagnoses. These included 17 probands with diagnostic copy number variants, 32 probands with secondary findings, and 31 probands with multiple molecular diagnoses. Reanalysis added 22 molecular diagnoses, predominantly due to new disease-gene associations (9 of 22, 40.9%). One-quarter of the molecular diagnoses (92 of 361) did not involve immune-associated genes. Molecular diagnosis was correlated with younger age, male sex, and a higher number of organ systems involved. This program also facilitated the discovery of new gene-disease associations such as SASH3-related immunodeficiency. A review of treatment options and ClinGen actionability curations suggest that at least 251 of 361 of these molecular diagnoses (69.5%) could translate into ≥1 management option. CONCLUSIONS: This program contributes to our understanding of the diagnostic and clinical utility whole exome analysis on a large scale.
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Exoma , Testes Genéticos , Exoma/genética , Feminino , Testes Genéticos/métodos , Genômica , Humanos , Masculino , Fenótipo , Estudos ProspectivosRESUMO
Online methods of teaching and assessing communication skills meet not only the need for remote education during the COVID-19 pandemic but also future demand for flexible training methods. This study aimed to explore the utility of standardized video prompts intended to elicit samples of genetic counselors' (GCs') interpersonal, psychosocial, and counseling skills by describing variation in GCs' socioemotional communication during their responses to a series of videotaped communication challenges. We analyzed the previously recorded communication of 43 GCs responding to a set of videotaped simulated client prompts related to a cancer or prenatal counseling session. We applied the Roter Interaction Analysis System to the prompts and GCs' responses, focusing on the proportion of socioemotional content as an indicator of interpersonal, psychosocial, and counseling skill use. We analyzed the responses of 21 GCs to the cancer prompts and 22 GCs to the prenatal prompts. Two-sample t tests explored differences in the proportion of socioemotional content in GCs' responses to prompts within and across the two scenarios. Overall, socioemotional statements accounted for 31% (SD = 8%) of all GC statements in response to the prenatal prompts and 36% (SD = 9%) of statements in response to the cancer prompts (Bonferroni-adjusted p=.49). The proportion of socioemotional communication in individual prompt responses varied from 4% (SD = 12%) to 76% (SD = 26%) across the cancer prompt series and 10% (SD = 13%) to 76% (SD = 30%) across the prenatal prompt series. Across the two scenarios, two of 10 matched prompts showed significant differences in the proportion of GCs' socioemotional content of the prompt responses (p's < 0.001). These differences appear related to differences in the socioemotional nature of the prompts. These findings inform online methods of communication assessment that are useful during restrictions to in-person learning due to COVID-19, as well as future hybrid training and research efforts.
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COVID-19 , Conselheiros , Comunicação , Conselheiros/psicologia , Feminino , Aconselhamento Genético/psicologia , Humanos , Pandemias , GravidezRESUMO
BACKGROUND: Garden-based interventions show promise for improving not only child nutrition, but other indicators of child health. Yet, existing systematic reviews of garden-based interventions often focus on one particular health outcome or setting, creating a need to holistically summarize review-level evidence on the role of garden-based interventions in early childhood. To fill this gap, we performed an umbrella review of garden-based interventions to examine their role in early childhood health promotion for children ages 6 years and younger, examining effective components of garden-based interventions and critically evaluating existing evidence. METHODS: We searched the following databases: PubMed, PubMed, PsycINFO, ERIC, CINAHL, Embase, Scopus, OVID-Agricola, and CAB Direct, limiting to reviews published from 1990 to August 2019. Of the 9457 references identified, we included a total of 16 unique reviews for analysis. RESULTS: Across reviews, garden based-interventions were most effective at improving nutrition-related outcomes for children, including nutritional status and fruit and vegetable consumption. Few reviews examined child health outcomes of garden-based interventions that were not nutrition related, such as physical activity, or academic performance. Across settings, there was the most evidence in support of garden-based interventions conducted in home gardens, compared to evidence from early care and education or community settings. We were unable to report on most effective components of garden-based interventions due to limitations of included reviews. CONCLUSIONS: Existing evidence is difficult to interpret due to methodological limitations at both the review and primary study level. Therefore, the lack of evidence for certain child health outcomes should not necessarily be interpreted as an absence of an effect of garden-based interventions for specific outcomes, but as a product of these limitations. Given the breadth of evidence for garden-based interventions to improve a number of dimensions of health with older children and adult populations, we highlight areas of future research to address evidence gaps identified in this umbrella review. Further research on the role of garden-based interventions, including their impact on non-nutrition early childhood health outcomes and how effectiveness differs by setting type is necessary to fully understand their role in early childhood health promotion. PROSPERO REGISTRATION: CRD42019106848 .
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Saúde da Criança , Jardinagem , Jardins , Promoção da Saúde/métodos , Criança , Pré-Escolar , Exercício Físico , Comportamentos Relacionados com a Saúde , Humanos , Estado Nutricional , Revisões Sistemáticas como AssuntoRESUMO
Previous studies have linked clinicians' implicit racial bias with less patient-centered communication between healthcare providers and patients in a variety of healthcare contexts. The current study extends this research by exploring the influence of implicit racial bias in genetic counselors' (GCs') facilitation of simulated clients' cognitive and emotional processing during genetic counseling sessions. We conducted a secondary analysis of a nationally representative sample of genetic counseling sessions of White and ethnic and/or racial minority (Black and Latinx) simulated clients with a subset of 60 GCs who had completed a Race Implicit Association Test (IAT). Linguistic Inquiry Word Count (LIWC) was applied to session transcripts to identify word use by the simulated client consistent with emotional and cognitive processing. The Roter Interaction Analysis System (RIAS) was used to link GC statements consistent with facilitation of emotional and cognitive processing, as used in previous studies. Multiple linear regression analyses were performed to relate LIWC and RIAS variables to GC IAT scores, client race/ethnicity, and statistical interaction between GC IAT scores and client race/ethnicity. GCs used more cognitive facilitation strategies with ethnic and/or racial minority than with White clients (p = .04). There were no statistically significant associations between GCs' pro-White implicit bias and GCs' facilitation of cognitive and emotional processing or clients' use of positive, negative, or cognitive process words. While implicit bias may affect some communication processes, our analysis did not show a relationship between GC IAT score and how GCs help clients process emotional or cognitive information conveyed during a session. It is also possible that the LIWC measure of cognitive and emotional processing is not a sensitive enough measure to capture an implicit bias effect if indeed one is present.
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Cognição , Conselheiros/psicologia , Aconselhamento Genético/psicologia , Relações Profissional-Paciente , Racismo/psicologia , Adulto , Negro ou Afro-Americano/psicologia , Atitude do Pessoal de Saúde , Comunicação , Emoções , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , População Branca/psicologiaRESUMO
OBJECTIVE: The study objective is to evaluate an adaptation of the LEAPS skill framework for cancer care partners (CPs) focusing on autonomy enhancing skills and assessed by strong behavioral intention (SBI) to use these skills METHOD: Cancer CPs were recruited through public platforms to view and rate 4 LEAPS cancer-specific narratives and 52 skill demonstration videos, indicate SBI to use demonstrated skills and provide information on skill-related measures. RESULTS: Half of CPs expressed SBI to use an average of 6.5 of 13 LEAPS skills which did not vary by LEAPS communication domains or examples used to demonstrate skills. Significant predictors of SBI include positive ratings of program narratives and past use of LEAPS-related behaviors in the communication domain of shared decision making (SDM). CONCLUSION: CPs indicated SBIs to use multiple autonomy enhancing skills and positively rated program videos after exposure to the brief LEAPS training program. PRACTICE IMPLICATIONS: The brevity of the LEAPS training videos make it possible for users to view an individual cancer-specific narrative and 13 skill demonstrations in roughly 6 min. This ultra-brief training can benefit care partners and the patients they accompany by increasing the likelihood that autonomy enhancing skills are used during accompanied visits.
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Intenção , Neoplasias , Humanos , Cuidadores , Comunicação , Tomada de Decisão Compartilhada , Narração , Neoplasias/terapiaRESUMO
Objective: To assess the Behavioral Intention Predictive Framework's utility in explaining variation in cancer patients' strong behavioral intention (SBI) to use LEAPS (Listen, Educate, Assess, Partner, Support) communication skills after viewing training videos. Methods: Ninety-eight patients were enrolled through anonymized online platforms to view LEAPS training videos, complete background and communication questionnaires and report their SBI to use LEAPS skills. Results: On average, patients indicated SBI to use 6 of 13 skills and 46% of patients expressed SBI across individual skills. The framework explained 27.7% of the adjusted variance in SBI with significant predictors of frequent past use of LEAPS-related shared decision-making behaviors, poor emotional health, being rarely accompanied to visits and positive ratings of narrative videos. Finally, 21.7% of the adjusted variance in problem communication was explained by infrequent use of LEAPS-related information behaviors, patient accompaniment of another adult and positive narrative scores. Conclusion: Patients SBI to use multiple LEAPS skills and past problem communication were explained by framework predictors. Innovation: Despite theoretical and empirical evidence that behavioral intention significantly predicts behavior, it has not been studied in patient communication research. Application of the novel framework to LEAPS training videos contributes an innovative address of this research gap.
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OBJECTIVE: To examine the efficacy of a brief, online intervention designed to enhance genetic counseling students' patient-centered communication. METHODS: Genetic counseling students and recent graduates were randomized to two groups following a baseline standardized patient (SP) session: (1) immediate intervention exposure, which consisted of five modules that taught patient-centered communication skills followed by a second SP session, or (2) delayed intervention exposure following completion of the second session. Sessions were coded using the Roter Interaction Analysis System. Short-term efficacy was assessed by comparing communication during the second session between the delayed and immediate intervention exposure groups. Longer-term efficacy was assessed by comparing communication during a third session approximately five weeks later. RESULTS: During the second session, students in the immediate intervention exposure group (n = 18) used more emotionally responsive statements and were more likely to use teach-back than those in the delayed intervention exposure group (n = 23). Students' emotionally responsive statements decreased among the immediate intervention exposure group during the third session. CONCLUSION: Exposure to the intervention was associated with multiple, positive changes to students' patient-centered communication behavior. PRACTICE IMPLICATIONS: These time- and resource-efficient modules may be beneficial as an introduction to communication skills training or a supplement to existing training.
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Educação de Graduação em Medicina , Intervenção Baseada em Internet , Estudantes de Medicina , Humanos , Aconselhamento Genético , Comunicação , Competência ClínicaRESUMO
OBJECTIVES: Genetic counselors (GCs) can frame information in either general terms (i.e., population risks) or individual terms (i.e., tailoring to specific client characteristics). We investigated whether informational framing might reflect GCs' implicit racial bias. METHODS: We analyzed previously videotaped genetic counseling sessions with white and minority (Black and Latino) simulated clients (SCs) and modeled the relationship between sixty GCs' implicit racial bias, as measured by the Implicit Association Test (IAT), and informational framing (general or individual) as characterized by the Roter Interaction Analysis System. RESULTS: Higher (more pro-white) IAT scores predicted less informational individuation for minority relative to white SCs. Similarly, higher IAT predicted fewer facilitation and activation statements to minority relative to white SCs. With higher IAT-scoring GCs, minority SCs disclosed less psychosocial and lifestyle information, and asked fewer medical questions (all pâ¯<â¯0.05). CONCLUSION: GCs' racial implicit bias may be associated with less individualized communication style when counseling minority clients. PRACTICE IMPLICATIONS: Future research should address whether increasing informational individuation can ameliorate negative consequences of implicit bias and help providers reframe perceptions of minority patients in individual rather than categorical terms.