The Experience of Leader-Led Peer Supervision: Genetic Counselors' Perspectives

As we proceed through our professional lives, it is essential that we challengeourselves in order to continue to develop our genetic counseling skills. Conferences, workshops,post-graduate courses, journal clubs, and involvement in professional organizations havebecome the traditional methods of continuing education for post-graduate geneticcounselors. While these forums address the need to stay updated on scientific orinformation-based topics, there is little available to counselors to promote growth incounseling skills. A group of Boston-based genetic counselors describe how their leader-ledsupervision group has established a setting to meet the needs of its members both forsupport and continued counseling training. We outline here the evolution of this group andhow it has become a valued part of our professional lives. We feel that the model of leader-ledpeer supervision holds great value in helping genetic counselors continue to enhancetheir interpersonal skills in a supportive, safe, and challenging environment. It is our hopethat others will elect to form similar groups in their own communities, thereby creating newopportunities for growth within the genetic counseling profession.     

A Survey of Genetic Counselors' Use of Informed Consent Documents for Prenatal Genetic Counseling Sessions

Thirty six members of the Prenatal Diagnosis Special Interest Group of the National Society of Genetic Counselors were interviewed about their use of informed consent documents for the genetic counseling component of their prenatal genetic counseling sessions and their perceptions of the utility and feasibility of such documents. Major findings include (1) None of the genetic counselors currently used a consent document describing the genetic counseling component of the session itself; (2) Only three participants stated that they had ever used an informed consent document for this component of the session; (3) They disagreed about the importance and usefulness of such a document; (4) There was variability in their reported likelihood of using a document if one were available; (5) There was a fair amount of agreement about the types of information to include on an informed consent document for genetic counseling; over half of the sample endorsed 8 of 10 topics; and (6) Participants identified 10 obstacles to using such a document. Recommendations for genetic counseling practice, policy, and research are given.     

Genetic Counselors' Experiences with Paternal Involvement in Prenatal Genetic Counseling Sessions: An Exploratory Investigation

Limited research exists concerning male partners' participation in prenatal genetic counseling (R. Kenen, A. C. M. Smith, C. Watkins, & C. Zuber-Pitore, J. Genet Corns 9, 33–45, 2000). To further understand paternal participation, we interviewed 17 experienced prenatal genetic counselors to assess their perspectives on this issue. We investigated 6 research questions: 1) How do genetic counselors define paternal involvement, 2) how do they determine and address problematic involvement, 3) what factors influence involvement, 4) was paternal involvement addressed in training, 5) how might training be improved, and 6) how do participant strategies for addressing involvement compare to those of marriage/family therapists? Qualitative analysis revealed that 1) participants regard paternal involvement asimportant; 2) most address problematic involvement with strategies similar to those of marital/family therapists; 3) influential factors include male partner's characteristics, the couple's relationship (including culturalpractices), and pregnancy factors; and 4) participants received little or notraining on paternal involvement and recommended didactic and experientialactivities. Implications and research recommendations are presented.     

A Comparison of Patient Satisfaction with Telehealth and On-Site Consultations: A Pilot Study for Prenatal Genetic Counseling

Many different fields of medicine are now utilizing video conferencing as a means to offer consultations to individuals in rural communities. However, there is a lack of published literature regarding the use of telehealth in clinical genetics and, specifically, in genetic counseling. Those experiences that have been reported mostly centered on cancer genetic counseling, sickle cell anemia consultation and care, or pediatric/adult genetic assessment. In these studies, the patients reported an overall satisfaction with telehealth, signifying that this type of communication may play an important role in the future of medicine. This pilot study compared patient satisfaction with prenatal genetic counseling performed via video conferencing versus that performed on-site. The results show that there was a high level of patient satisfaction when video conferencing was used to conduct prenatal genetic counseling consultations, suggesting that telehealth can be utilized as a means to offer this service to underserved populations. Telehealth refers to any type of communication technology in health care, distance education, transmission of radiological images, etc. The actual screening, diagnosis, treatment, management, etc., using distance technology is referred to as telemedicine.The term on-site indicates that genetic counseling was performed in person, rather than using telehealth.     

Increasing Utilization of Cancer Genetic Counseling Services Using a Patient Navigator Model

Rarely has utilization of genetic counseling for Hereditary Breast and Ovarian Cancer (HBOC) been studied separately from utilization of testing. At Kaiser Permanente Colorado, consistently only 30% of all members referred for HBOC attend genetic counseling. To increase the volume of genetic counseling appointments, a patient navigator approach was pilot tested in a randomized-controlled trial over 3 months. A total of 125 members were referred for HBOC genetic counseling (55 randomized to PN, 70 randomized to usual care). Utilization of referrals for Navigator-assisted members was 44%, compared to 31% in the usual care arm (p=0.16). The patient navigator significantly decreased time to appointment, with over 80% of Navigator-assisted members seen for genetic counseling less than three months from referral date, compared to 32% in usual care (p=0.002). patient navigator assistance shortens time from referral to appointment for HBOC genetic counseling, and may increase utilization of such services.     

Understanding the dynamics of the patient-physician relationship: balancing the fiduciary and stewardship roles of physicians

There has been growing concern about the effects on the patient–physician relationship of the increasing demands on physicians to balance their fiduciary and stewardship responsibilities, what has been called double agency. Various authors have proposed ways to restore patient centeredness to the patient–physician interaction. We have previously discussed the need to establish a patient–physician alliance to achieve this aim and to facilitate achieving this balance in mutual understanding. In this essay, we examine six concepts derived by Michael Balint from research seminars with primary care physicians. These six concepts are (a) the basic fault; (b) the physician's apostolic function; (c) the mutual investment company; (d) the drug doctor; (e) the deeper diagnosis; and (f) the conspiracy of anonymity. We believe these six concepts describe basic forces that shape the patient–physician relationship and allow for the development of an alliance between patients and physicians that can help preserve the essentials of the relationship.     

Assessment of the Use and Feasibility of Video to Supplement the Genetic Counseling Process: A Cancer Genetic Counseling Perspective

Cancer genetic counselors use a variety of teaching modalities for patient education. This survey of cancer genetic counselors assessed their use of educational videos and their recommendations for content of future videos. Thirty percent of respondents use videos for patient education. Cited benefits included reinforcement of information for clients and increased counselor efficiency. Of the 70% who do not use videos, predominant barriers included the perceived lack of an appropriate video, lack of space and/or equipment, and concern that videos are impersonal. Most respondents desired a video that is representative of the genetic counseling session, but emphasized the importance of using broad information. Content considered critical included the pros and cons of genetic testing, associated psychosocial implications, and genetic discrimination. The results of this exploratory study provide data relevant for the development of a cancer genetics video for patient education, and suggestions are made based on aspects of information processing and communication theories.     

Reducing Psychological Distress in a Genetic Counseling Consultation for Breast Cancer

High levels of cancer specific distress have been found before and after genetic counseling for breast cancer. This study investigated the process of reducing distress during 111 genetic counseling consultations for familial breast cancer. Consultations were audiotaped, transcribed, and a detailed coding system developed to measure cues of emotional distress from the patient, and consultant (clinical geneticist or genetic counselor) behaviors before and after the cues. At least 1 emotional cue was given in 64 consultations, with a median of 1 cue per consultation. More emotional cues of distress occurred when the consultant responded empathetically to the first cue of distress. Satisfaction outcomes were largely positive regardless of the consultant's attentiveness to distress. Postconsultation depression scores were significantly reduced if more empathic responses were given, but anxiety remained the same. These results are discussed and recommendations are made for improving patient care.     

Probability Biases in Genetic Problem Solving: A Comparison of Undergraduates, Genetic Counseling Graduate Students, and Genetic Counselors

Heuristics are mental shortcuts that aid people in everyday problem-solving and decision-making. Although numerous studies have demonstrated their use in contexts ranging from consumers’ shopping decisions to experts’ estimations of experimental validity, virtually no published research has addressed heuristics use in problems involving genetic conditions and associated risk probabilities. The present research consists of two studies. In the first study, 220 undergraduates attempted to solve four genetic problems—two common heuristic problems modified to focus on genetic likelihood, and two created to study heuristics and probability rule application. Results revealed that the vast majority of undergraduates used heuristics and also demonstrated a complete misuse of probability rules. In the second study, 156 practicing genetic counselors and 89 genetic counseling students solved slightly modified versions of the genetic problems used in Study 1. Results indicated that a large percentage of both genetic counselors and students used heuristics, but the counselors demonstrated superior problem-solving performance compared to both the genetic counseling students and the undergraduates from Study 1. Research, training, and practice recommendations are presented.     

Negative expectations and bad relationships: Effects of negative metastereotypes on doctor–patient relationships

This research aimed to examine the effects of negative metastereotypes (i.e., patients believe that doctors have negative opinions about them) and conflict experience on doctor–patient relationships. A 2 × 2 experimental study was conducted on 84 outpatients who were randomly assigned to either a negative metastereotype activation (NMSA) condition or a nonnegative metastereotype activation (non‐NMSA) condition. Each group consisted of patients with and without conflict experience (CE). Intergroup anxiety and doctor–patient relationships were subsequently assessed. Results showed that NMSA and CE increased intergroup anxiety and undermined doctor–patient relationships. In addition, the interaction between NMSA and CE on doctor–patient relationships was significant. When negative metastereotypes were activated, patients with CE showed more unfavorable relationships with doctors as compared with those under non‐NMSA activation condition; no metastereotype effects on doctor–patient relationships were observed among patients without CE. These findings provided insights into an important predictor of doctor–patient relationships as well as its mechanism. Future studies should consider negative metastereotypes and CE to develop interventions for improving doctor–patient relationships.     

Differences in Individual Approaches: Communication in the Familial Breast Cancer Consultation and the Effect on Patient Outcomes

This multicenter study aimed to assess (i) whether individual clinical geneticists and genetic counselors vary in their communication skills and (ii) whether this variation in communication impacts on patient outcomes, such as anxiety, depression, genetics knowledge, and satisfaction. One hundred and fifty women from high-risk breast cancer families attending their first genetic counseling consultation completed pre and post-consultation self-report questionnaires. The consultations were audiotaped and transcribed verbatim. Univariate analyses showed highly significant differences between individual clinical geneticists and genetic counselors in: facilitating understanding (p 0.001); facilitating active involvement (p 0.001); facilitating partnership building (p = 0.003); addressing emotional concerns (p 0.001); and discussing prophylactic mastectomy (p = 0.017). Multivariate linear regressions showed that this variation in communication resulted in a greater change in patients depression 4 weeks after the counseling session (p = 0.017). These findings suggest clinical geneticists and genetic counselors have achieved some standardization in communicating information, but showed diversity in their facilitation skills. Communication skills may be a useful area to explore further in this field.     

Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer

In familial breast/ovarian cancer, the information that the proband is able to supply about other family members is of critical importance for genetic counseling. This frequently requires family communication. Forty-six women attending a cancer genetics clinic were interviewed as part of a longitudinal study. Nearly all reported affected maternal, rather than paternal relatives, which may indicate lack of awareness by women with paternal histories. There was also much more communication among female relatives. Mothers, where they were still alive, were key figures in supplying family information. Although the majority of the sample contacted at least one relative regarding counseling, most named a relative with whom they did not feel able to communicate on this subject. Probands balanced the perceived obligation of passing on information with that of not causing alarm. Communication, both obtaining and giving information, was impeded by adoption, divorce and remarriage, family rifts, and large age gaps between siblings.     

Perceived Genetic Risks for Bipolar Disorder in a Patient Population: An Exploratory Study

Thirty-one subjects with bipolar illness completed a questionnaire about genetic risk for bipolar disorder. Subjects estimated both quantitative and qualitative genetic risk for bipolar disorder for the following categories: general population, siblings, parents, spouses, and children. Results showed that quantitative risks were inflated when compared to qualitative risks and that subjects routinely overestimated the risk for developing bipolar illness. These findings suggest that genetic counseling may be useful for this population.     

A Patient's Perspective on Genetic Counseling and Predictive Testing for Alzheimer's Disease

The availability of genetic testing for Alzheimer's disease is anticipated to be widespread in the future. As an individual at risk with a family history of Alzheimer's disease, I discuss why I sought predictive tests and how I would use the information from such tests. I relay what I learned in my genetic counseling session, my response to the counseling process, and steps I have since taken. I discuss life planning, psychological and fear of discrimination issues from a patient's perspective.     

Systemically-Based Psychotherapeutic Techniques in Genetic Counseling

The uses of systemically-based psychotherapeutic methods in genetic counseling are discussed in the context of the origin of genetic counseling, the definition of genetic counseling, and the adjustments that one must make in order to implement these methods. Selected systemic methods which can be readily incorporated into genetic counseling are presented: use of genograms to explore family attitudes and beliefs about genetic risk, communications skills, and applications of family of origin work in genetic counseling. The need for research regarding the methodology and process of genetic counseling is presented with discussion of the need for theories of practice for genetic counseling.     

Psychological Aspects of Genetic Counseling: XII. More on Counseling Skills

Three brief excerpts of genetic counseling sessions are analyzed to illustrate difficulties in applying counseling skills. Suggestions are advanced as to how genetic counselors might improve their competence in counseling practices and handle such issues as transference more effectively.     

Psychosocial Genetic Counseling in the Post-Nondirective Era: A Point of View

For three decades nondirectiveness has served as the central ethos for genetic counseling. It has evolved from narrow definitions defining what should not be done to broad definitions that promote active counseling skills in support of client autonomy and informed decision making. As broad definitions have been formulated, the term nondirective has become largely irrelevant to their content; it persists primarily as a historic relic. It has thus become an impediment to creative theory and clinical practice. I propose that nondirectiveness be replaced as the central ethos, while relevant components (providing balanced information, not imposing the counselor's values) are retained as elements of practice and ethics. This raises the question of what principle(s) should be adopted as a new guiding ethos. To promote a discussion of that issue I propose that the central ethos of genetic counseling should be to bring the psychosocial component into every aspect of the work.     

Exploring Genetic Counseling Communication Patterns: The Role of Teaching and Counseling Approaches

The educational and counseling models are often touted as the two primary professional approaches to genetic counseling practice. Yet, research has not been conducted to examine how these approaches are used in practice. In the present study, we conducted quantitative communication analyses of BRCA1 genetic counseling sessions. We measured communication variables that represent content (e.g., a biomedical focus) and process (e.g., passive listening) to explore whether genetic counselor approaches are consistent with prevailing professional models. The Roter Interaction Analysis System (RIAS) was used to code 167 pre-test genetic counseling sessions of members of a large kindred with an identified BRCA1 mutation. Three experienced genetic counselors conducted the sessions. Creating composite categories from the RIAS codes, we found the sessions to be largely educational in nature with the counselors and clients devoting the majority of their dialogue to providing biomedical information (62 and 40%, respectively). We used cluster analytic techniques, entering the composite communication variables and identified four patterns of session communication: Client-focused psychosocial, biomedical question and answer, counselor-driven psychosocial, and client-focused biomedical. Moreover, we found that the counselors had unique styles in which they combined the use of education and counseling approaches. We discuss the importance of understanding the variation in counselor communication to advance the field and expand prevailing assumptions.     

Development of the Critical Elements of Genetic Evaluation and Genetic Counseling for Genetic Professionals and Perinatologists in Washington State

We present a method for the development of consensus documents describing the components of genetic evaluation and genetic counseling for various diagnoses. These documents were developed to encourage consistency among genetic professionals in Washington State. Other possible uses of these documents are to provide information regarding genetic evaluations for health care practitioners and payers, and to assist in quality assurance and genetic training programs. A working group of six genetic professionals developed two templates for the critical elements of genetic evaluation and genetic counseling, for clinical (nonprenatal) and prenatal patients. The working group then completed prototype templates for several specific genetic disorders. The templates and prototypes were sent to interested genetic professionals and perinatologists who submitted a total of 76 draft critical elements (CE's) to the working group. At two statewide meetings, participating practitioners modified and unanimously approved the CE templates, then unanimously approved the 21 draft CEs that had been finalized in small group discussions. Approved CE's were distributed to genetic professionals and perinatologists within the state.