Browsing by Subject "Genetic counseling"
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Item Anxiety's effect on the experience of supervision of genetic counseling students(2013-08) MacFarlane, Ian MichaelGenetic counseling has been a recognized profession in North America for over 40 years. Supervised clinical experiences with patients comprise a critical component of genetic counseling student education. Previous research has found genetic counseling students s tend to be more anxiety prone than the general population (Jungbluth et al., 2011), and anxiety related to supervision has been found in genetic counseling (e.g., Hendrickson et al., 2002) and related fields (e.g., Skovholt & Ronnestad, 2003). The present study investigated how anxiety affects the experience of supervision for genetic counseling students. Second year genetic counseling students (~N = 200) were invited to participate through email invitations distributed via training directors of the 33 programs accredited by the American Board of Genetic Counseling. The initial online survey contained the trait scale of the State-Trait Anxiety Inventory (STAI; Spielberger et al., 1983) to estimate anxiety proneness in this population and an invitation to participate in a 1-hour interview focusing on students' experiences in supervision. The interviews questions investigated seven research questions focusing on satisfaction with training, interactions with patients and supervisors, perceptions of the structure and processes of supervision, and experiences related to anxiety. High, moderate, and low trait anxiety groups were created using STAI scores, and the high and low groups' interview responses were compared using consensual qualitative research methodology (CQR; Hill, 2012). Analysis discovered relatively few differences between groups. The high anxiety group was more likely to describe problematic supervisory relationships, appreciate the supervisor's ability to help them when they get stuck in sessions, and feel their anxiety had a negative effect on their performance in general and in supervision. Common themes included supervisors' balancing support and guidance, the importance of feedback, ego-centric responses, and supervisors as focal points. Students unanimously reported positive levels of satisfaction with their clinical rotations in general and supervision specifically. The results of the present study are largely consistent with the literature, including recently published supervision competencies (Eubanks Higgins et al., 2013). Further research findings and research, practice, and training recommendations are provided.Item Empathy training in genetic counseling: an investigation of how genetic counselors learn to "walk in their patients' shoes".(2012-08) VandenLangenberg, ErinEmpathy is a fundamental component of genetic counseling, but empirical data regarding the nature of genetic counselor empathy and empathy training methods are lacking. In this descriptive study, 60 genetic counselors, recruited through an online survey sent via the NSGC listserv, provided written definitions of empathy and responded to demographic questions. Additionally, genetic counselor program training directors nominated genetic counseling supervisors they perceived as focusing on empathy development when training students. Seventeen supervisors subsequently completed a similar online survey. Eleven genetic counselors and 16 supervisors completed follow a semi-structured, audio recorded phone interview to further investigate how genetic counselors define their professional use of empathy, to clarify training methods used to build empathy skills, and (for supervisors only) to determine methods supervisors use to evaluate empathy development. Inductive analysis of written definitions from the survey yielded themes consistent with Barrett-Lennard's (1981) 3-component model of empathy, namely, that genetic counselor's perceive empathy as: (1) the ability to understand another person's experience; (2) communicating that understanding; and (3) the other person's perception of being understood. Modified Consensual Qualitative Research (CQR; Hill, Thompson, & Williams, 1997; Hill, Knox, Thompson, Williams, & Hess, 2005) methods were used to analyze interview transcripts of genetic counselors and supervisors. Findings from this analysis showed that, similar to other health professions, genetic counselors and supervisors are more cognizant of Barrett-Lennard's (1981) Components 1 and 2. Genetic counselors reported learning their definition of empathy in their training program but honing their empathy skills primarily through clinical experience. Supervisors reported training and experience were equally important in their both their own and their student supervisees' learning of empathy and skill development. Supervisors experienced increased comfort using empathy in clinical practice as they became more familiar with the concept and reported emphasizing empathy more with their students as they gained clinical and supervisory experience. Genetic counselors reported that with experience empathy became a tangible skill and a process used throughout the session. Both groups of interviewees described empathy as an evolving process. While some participants believed empathy might be innate, most reported empathy is something one is continuously learning and it is refined through training and experience. Post-genetic counseling session reflection and anticipatory guidance were most frequently mentioned by both groups as supervisory methods used to promote empathy development. Findings from this study were congruent with the Reciprocal Engagement Model (REM) of Genetic Counseling (McCarthy Veach, Bartels, & LeRoy, 2007), a published model of the genetic counseling process. A model of empathy in genetic counseling, the Reciprocal Engagement Model of Empathy (REM-E), is proposed to describe how empathy can be infused into genetic counseling practice. Additional findings, practice implications and research recommendations are presented.Item From eugenics to public health genetics in mid-twentieth century Minnesota.(2011-05) Holtan, Neal RossIn the twentieth century, people in Minnesota experienced four developmental phases of human genetics in distinct organizational manifestations: the Minnesota Eugenics Society (organized in 1926), the Dight Institute for Human Genetics at the University of Minnesota (established in 1941), the Minnesota Human Genetics League (incorporated in 1945), and the Human Genetics Unit at the Minnesota Department of Health (authorized in 1959 and created in 1960). The first three phases are tied to the last, the unprecedented establishment of public health genetics that made Minnesota the first state to organize a public human genetics program. I examine the intellectual, scientific, and social roots of public health genetics and its relationship to the rest of public health practice before reaching the conclusion that the promise of public health genetics appeared to have been high for its proponents in the beginning, but because of the socio-cultural shifts of values in the 1970s and a poor fit with public health's traditional array of strategies, it did not thrive over time.Item Portrait of the master genetic counselor: a qualitative investigation of expertise in genetic counseling.(2012-08) Capel-Miranda, Cacy JaiThis study begins to describe personal and professional characteristics of master genetic counselors—those considered to be experts or among the best-of-the best clinicians in genetic counseling. The focus of the investigation was the person of the master genetic counselor. Fifteen, peer-nominated genetic counselors participated in in-depth, semi- structured telephone interviews exploring their personal qualities, inspirations, motivations, strengths, struggles, and professional development. Analysis using a modified version of Consensual Qualitative Research (Hill, 2012) resulted in four broad themes: 1) Personal Characteristics of Master Genetic Counselors, 2) Relationships with Patients, 3) What Constitutes Success, and 4) Views of the Profession. Findings indicate master genetic counselors: a) have insatiable curiosity, love learning and are life-long learners; b) are reflective, self-aware, confident and recognize their limitations; c) are authentic and genuine, and consider their personality to be their counseling style; c) form collaborative and interactive relationships with patients based on trust; d) have nuanced attunement to the complexity and multiple levels of the counseling process; e) struggle when they cannot connect with patients; f) have deep empathy, are inspired by patients, and derive personal meaning from their work; g) are affected emotionally by their work, but effectively manage the emotional impact; h) view success as patient- centered and based in the patient/genetic counselor relationship; i) view their professional development as ongoing; and j) hold various perspectives on psychosocial aspects of genetic counseling, on the art vs. science nature of the field, and development of the profession. Major findings are discussed in conjunction with theory and previous research. The findings provide strong support for the Reciprocal-Engagement Model of genetic counseling practice (McCarthy Veach, et al., 2007). Study strengths and limitations, implication for training and practice, and research recommendation are discussed.Item Walking in your patient‘s shoes: an investigation of genetic counselor empathy in clinical practice.(2010-08) Kao, Juihsien H.Empathy is defined as "... [the ability] to perceive the internal frame of reference of another with accuracy and with the emotional components and meanings which pertain thereto as if one were the person, but without ever losing the `as if' condition" (Rogers, 1957, p.210). It is an important genetic counselor attitude and skill that is effective in establishing rapport with patients and providing them with psychosocial support (Kessler, 1999; McCarthy Veach, Bartels & LeRoy, 2007). Yet there is a dearth of empirical studies concerning how genetic counselors conceptualize and use empathy in their clinical practice. Furthermore, genetic counselors' empathy tendency, or ability to experience empathy, has not been examined. Accordingly the present study investigated genetic counselors' empathy tendency, their empathic responses to patient statements in five hypothetical genetic counseling scenarios (cancer, cleft palate, Fabry disease, Long QT syndrome, and Huntington Disease), and their personal successes and challenges in engaging empathically with their patients. Two hundred ten genetic counselors responded to an anonymous online survey posted to the National Society of Genetic Counseling (NSGC) listserv, and of these respondents, 143 completed the entire survey. Their empathy tendency was assessed with the Interpersonal Reactivity Index (Davis, 1983). Results indicated that participants had the highest mean empathy scores on the Empathic Concern Scale, followed by the Perspective-Taking Scale, Fantasy Scale, and Personal Distress Scale. Content analysis of written responses to the five genetic counseling scenarios revealed that, within and across scenarios, participants' responses to patient statements varied markedly. They included concise summaries of content and reflections of patient feelings, and lengthy, complex responses containing open and closed questions, information, self-disclosure, advice, counselor opinions, and/or nonverbal behaviors. Participants' use of empathy in their responses to the patients were not significantly related to their scores on any of the four empathy tendency scales. Analysis of empathy successes revealed three major themes: Exploring Psychosocial Issues and Providing Psychosocial Support, Information Provision, and Facilitating Patient Coping. Analysis of empathy challenges also revealed three major themes: Counselor Factors, Nature of Genetic Counseling Sessions, and Patient Factors. Implications for practice and research are presented.Item Who should I bring? a qualitative examination of the role of the support person in the cancer genetic counseling appointment(2014-08) Swartwood, Ruth MariePerceived social support positively predicts healthcare outcomes (cf. Codori, Slavney, Young, Miglioretti, & Brand, 1997). Yet, only one study specifically examines the role of the support person in genetic counseling sessions (for Huntington's Disease; Williams et al., 2000). The present study investigated the role of the support person in cancer genetic counseling from the perspective of practicing genetic counselors. There were three major research questions: (1) In what ways do cancer genetic counselors involve the support person in patients' genetic counseling sessions? (2) What variables do cancer genetic counselors believe contribute to successful and unsuccessful support person performance? and, (3) How can cancer genetic counselors help patients construct the best psychosocial support within genetic counseling sessions and after the genetic counseling relationship ends? Fourteen cancer genetic counselors engaged in semi-structured, phone interviews exploring their: approach to talking with patients about bringing a support person to session(s), impressions of patients' decision-making process with regard to choosing a support person, examples of successful and unsuccessful support person involvement, and perceived obligations to the support person. Using grounded theory analysis (Glaser, 1978; Strauss & Corbin, 1990) data were organized into themes supporting a core category (general theory). The derived core category is consistent with major tenets of Relational Regulation Theory (Lakey & Orehek, 2011): social support buffers against negative patient reactions, and perceived support comprises the mechanism through which buffering occurs. Specific to the present study, findings indicate support persons achieve the most success when three core conditions are met: 1) perceived as supportive, 2) matches the patient's needs, and 3) is emotion-based, information-based, focused on decision-making, or a combination of the three. Additional findings regarding successful and unsuccessful support person qualities, patients' decision-making process while selecting a support person, and genetic counselor strategies for facilitating positive support person experiences during and after sessions are presented.