Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study.

Introduction: In over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the field must first be able to comprehensively measure GC skills and determine which skills are most critical to achieving positive patient experiences and outcomes. This study aims to characterise GC communication skills using a novel and pragmatic measure and link variations in communication skills to patient-reported outcomes, across clinical specialties and with patients from diverse backgrounds in the USA.

Inconvenient sampling: Community-engaged and restorative justice approaches to genetic counseling student research.

Genetic counseling research requires a comprehensive approach since it frequently serves as the foundation for clinical care practice. Genetic counseling students play a pivotal role in advancing the profession, as they contribute a significant proportion of the research conducted within the genetic counseling community. However, a prevailing trend of convenience sampling of genetic counselors has limited the diversity of perspectives in student research projects.

Exploration of support for Black, Indigenous, and people of color students in genetic counseling programs.

Students in higher education who identify as Black, Indigenous, and people of color (BIPOC) experience racism, discrimination, and microaggressions through tokenization, hypervisibility, invisibility, and marginalization. The experiences of BIPOC genetic counseling students with curriculum, clinical training, and sense of belonging also differ. Therefore, there is a large need for understanding how support is defined by BIPOC genetic counseling students, and then how to integrate specific aspects of training into a practical framework for programs to address racism and the resulting emotional implications.

Parental request for familial carrier testing in early childhood: The genetic counseling perspective.

Professional guidelines generally caution against carrier testing in minors, though prior research indicates parents request and providers sometimes facilitate testing for unaffected siblings of a child affected by a genetic disorder. We investigated the perspectives of genetic counselors in North America regarding carrier testing prior to adolescence. Practicing genetic counselors (n = 177) responded to an electronic survey assessing their willingness to facilitate testing in four hypothetical scenarios and their evaluation of parental motivations.

Promoting the integration of genetic counseling education and research across the spectrum of learners at a large academic institution.

Genetic counselors are valuable members of research teams and are increasingly taking leadership roles in major research trials. While the field of genetic counseling has explored a doctoral degree several times, the terminal degree is still a master's level. Genetic counseling training programs provide research training, but many genetic counselors desire additional opportunities to develop expertise.

Genetic counselors' response types to prenatal patient deferring or attributing religious/spiritual statements: An exploratory study of US genetic counselors.

Research shows religiosity and spirituality (R/S) influence genetic counseling patients' and families' risk perception, decision-making, and coping. No published studies have examined how genetic counselors respond to patient-initiated R/S statements. This exploratory study examined genetic counselors' response types and reasons for their responses to two prenatal patient's R/S statements.

Differences in genetic counseling student responses to intense patient affect: A study of students in North American programs.

Research indicates genetic counseling patients often experience intense emotions. No studies, however, have investigated how genetic counseling students respond to patient affect. This survey study investigated student responses to patient emotions and select factors affecting their responses.

Content analysis of Journal of Genetic Counseling research articles: A multi-year perspective.

Content analyses of published papers in journals inform readers, editors, and members of the profession about historical publication patterns and how the journal has represented the field. This study is a content analysis of original research papers published in the Journal of Genetic Counseling from January 2011 through December 2017. This is the first study of its kind for the flagship journal of the National Society of Genetic Counseling.

A Delphi study to prioritize genetic counseling outcomes: What matters most.

Research on genetic counseling outcomes has examined a range of metrics many that differ in quality and extent of psychometric assessment and in some cases fail to encompass potential benefits of genetic counseling for patients. Although a variety of possible outcomes have been explored, selecting the most important or relevant outcomes and identifying well-validated measures remain challenging. An online, modified Delphi method was used to prioritize genetic counseling outcomes from the viewpoint of individuals from four stakeholder groups - clinical genetic counselors, outcome researchers, genetic counseling training directors, and genetic counseling consumers/advocates.

Characterizing standardized patients and genetic counseling graduate education.

Standardized patients (SPs) are laypersons trained to portray patients, family members, and others in a consistent, measurable manner to teach and assess healthcare students, and to provide practice for emotionally and medically challenging cases. SP methodology has been studied with practicing genetic counselors; however, there is minimal empirical evidence characterizing its use in genetic counseling (GC) education. The Accreditation Council for Genetic Counseling (ACGC) Standards of Accreditation for Graduate Programs in Genetic Counseling include SP sessions as one way to achieve up to 20% of the 50 participatory cases required for graduation.

A roadmap for precision medicine research recruitment: empirical assessment of the public's willingness to participate.

Precision medicine research recruitment poses challenges. To better understand factors impacting recruitment, this study assessed hypothetical willingness, public opinions of and familiarity with precision medicine research. Adult attendees (n = 942) at the 2017 Minnesota State Fair completed an electronic survey.

Genetic counseling student demographics: an empirical comparison of two cohorts.

Genetic counseling student characteristics may be evolving with the expansion and diversification of the genetic counseling field. We compared characteristics and previously accrued experiences of genetic counseling students enrolled in the 2018-2019 academic year with genetic counseling students surveyed by Lega et al. (Journal of Genetic Counseling, 14, 395; 2005).

Effects of monitoring versus blunting on the public's preferences for information in a hypothetical cancer diagnosis scenario.

Monitoring and blunting are coping styles that characterize how people respond when faced with personally threatening situations. High monitors tend to pay more attention to, scan for, and amplify threatening cues; high blunters tend to avoid information and seek distractions when faced with a threatening event. This study sought to investigate possible differential effects of monitoring and blunting coping styles on information preferences in a hypothetical cancer diagnosis scenario in the adult general public of Minnesota.

Genetic counselor and proxy patient perceptions of genetic counselor responses to prenatal patient self-disclosure requests: Skillfulness is in the eye of the beholder.

Research demonstrates some genetic counselors self-disclose while others do not when patients' request self-disclosure. Limited psychotherapy research suggests skillfulness matters more than type of counselor response. This survey research assessed perceived skillfulness of genetic counselor self-disclosures and non-disclosures.

Characterizing Clinical Genetic Counselors' Countertransference Experiences: an Exploratory Study.

Countertransference (CT) refers to conscious and unconscious emotions, fantasies, behaviors, perceptions, and psychological defenses genetic counselors experience in response to any aspect of genetic counseling situations (Weil 2010). Some authors theorize about the importance of recognizing and managing CT, but no studies solely aim to explore genetic counselors' experiences of the phenomenon. This study examined the extent to which clinical genetic counselors' perceive themselves as inclined to experience CT, gathered examples of CT encountered in clinical situations, and assessed their CT management strategies.

Effects of Anxiety on Novice Genetic Counseling Students' Experience of Supervised Clinical Rotations.

Supervised clinical experiences with patients comprise a critical component of genetic counseling student education. Previous research has found genetic counseling students tend to be more anxiety prone than the general population, and anxiety related to supervision has been found in genetic counseling and related fields. The present study investigated how anxiety affects the experience of supervision for genetic counseling students.

Genetic Counseling Supervisors' Self-Efficacy for Select Clinical Supervision Competencies.

Supervision is a primary instructional vehicle for genetic counseling student clinical training. Approximately two-thirds of genetic counselors report teaching and education roles, which include supervisory roles. Recently, Eubanks Higgins and colleagues published the first comprehensive list of empirically-derived genetic counseling supervisor competencies.

Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model.

The need for evidence-based medicine, including comparative effectiveness studies and patient-centered outcomes research, has become a major healthcare focus. To date, a comprehensive list of genetic counseling outcomes, as espoused by genetic counselors, has not been established and thus, identification of outcomes unique to genetic counseling services has become a priority for the National Society of Genetic Counselors (NSGC). The purpose of this study was to take a critical first step at identifying a more comprehensive list of genetic counseling outcomes.

Perceptions and Attitudes About Genetic Counseling Among Residents of a Midwestern Rural Area.

Relatively few investigations of the public's perceptions and attitudes about genetic counseling exist, and most are limited to individuals at-risk for a specific disease. In this study 203 individuals from a Midwest rural area completed an anonymous survey assessing their familiarity with genetic counseling; perceptions of genetic counseling purpose, scope, and practice; attitudes toward genetic counseling/counselors; and willingness to use genetic counseling services. Although very few respondents were familiar with genetic counseling, most reported accurate perceptions and positive attitudes; mean ratings, however, showed less endorsement of trust in information provided by genetic counselors and less agreement that genetic counseling aligns with their values.

Who is at risk for compassion fatigue? An investigation of genetic counselor demographics, anxiety, compassion satisfaction, and burnout.

Compassion fatigue is a state of detachment and isolation experienced when healthcare providers repeatedly engage with patients in distress. Compassion fatigue can hinder empathy and cause extreme tension. Prior research suggests 73.

Genetic counselor perceptions of genetic counseling session goals: a validation study of the reciprocal-engagement model.

Although some researchers have attempted to define genetic counseling practice goals, no study has obtained consensus about the goals from a large sample of genetic counselors. The Reciprocal-Engagement Model (REM; McCarthy Veach, Bartels & LeRoy, 2007) articulates 17 goals of genetic counseling practice. The present study investigated whether these goals could be generalized as a model of practice, as determined by a larger group of clinical genetic counselors.

What would you say? Genetic counseling graduate students' and counselors' hypothetical responses to patient requested self-disclosure.

Genetic counselor self-disclosure is a complex behavior that lacks extensive characterization. In particular, data are limited about genetic counselors' responses when patients ask them to self-disclose. Accordingly, this study investigated genetic counseling students' (n = 114) and practicing genetic counselors' (n = 123) responses to two hypothetical scenarios in which a female prenatal patient requests self-disclosure.