Patient Motivation, Satisfaction, and Coping in Genetic Counseling and Testing for BRCA1 and BRCA2

Women with a strong family history of breast and/or ovarian cancer can now have genetic testing, that may identify mutations associated with increased cancer predisposition. Within the context of a clinical trial evaluating printed educational materials, we examined motivation, satisfaction, coping, and perceptions of genetic counseling and testing among 159 women who underwent pretest counseling and made a testing decision. Ninety-six percent of the participants elected to have BRCA1/2 testing. When making a decision about genetic testing, study participants were concerned less about the potential negative effects that could result from testing than the potential benefits. After counseling, participants said that they felt better able to make decisions that were right for them and that their questions and concerns were adequately addressed during the session. Ninety-five percent of the women were satisfied with their test decision. Participants used a range of strategies to cope with thoughts and feelings about cancer and/or genetic testing immediately following test decision. Results suggest that the genetic counseling session helped women make decisions about testing for BRCA1 and BRCA2, even in the setting of a trial in which all women also received detailed educational materials. Further, the results indicate that future research focusing on perceptions of risks and benefits of testing and of coping strategies immediately following test decision may be warranted.     

The Interface Between Countertransference and Projective Identification in a Case Presented to Peer Supervision

This case report, presented to a supervision group, is a prenatal genetic counseling casethat caused me a great deal of emotional discomfort as the events unfolded. Thediscomfort originated during my first meeting with the couple for routine preamniocentesiscounseling and continued through later encounters. This case illustrates the process ofworking through countertransference and projective identification issues that may arise ingenetic counseling.     

Psychological Model for Presymptomatic Test Interviews: Lessons Learned from Huntington Disease

This paper reflects on experience gained from presymptomatic testing for Huntington disease. An approach is presented which considers the role of the clinician and aims of the interview. Irrespective of the disease being tested for, it is suggested that the psychological aim of presymptomatic testing is to foster emotional insight and understanding that will help clients in their decision-making process about testing and their subsequent adjustment to the result. Based on these aims the process of presymptomatic testing, counseling is considered in terms of clarification, consideration, education, and reflection, followed by decision making. Practical approaches are discussed and illustrated with clinical examples.     

Caring for the Care-Giver: The Benefit of a Peer Supervision Group

I presented the following case to my leader-led peer supervisiongroup twice as the case evolved over the course of one year. During my firstmeetings with Mr. and Mrs. M we discussed a prenatal diagnosis of a skeletaldysplasia at thirty-three weeks of pregnancy and the option of a third trimesterpregnancy termination. One year later I presented follow-up on the outcome ofthe affected pregnancy, a new pregnancy, and Mrs. M's suicide. Although bothsegments of the case were completed by the time I presented, my peersupervision group was invaluable. With the encouragement and support of groupmembers, I could openly express and process my sadness and grief for the M'ssituation and the loss of Mrs. M's life.     

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.     

To Use or Not to Use: Male Partners' Perspectives on Decision Making About Prenatal Diagnosis

We conducted an exploratory, qualitative pilot study investigating the use of genetic counseling and prenatal genetic technologies between women and their male partners for two referral groups: pregnant women 35 years of age and over (AMA) at the time of delivery and pregnant women with an abnormal maternal serum triple screen (MSAFP3). The convenience sample consisted of 25 semistructured interviews and 50 observations of genetic counseling sessions. Male partners' styles of decision making and the way they viewed prenatal diagnosis decision making were examined. We defined three decision-making styles based on our interpretation of the data: (1) domain, (2) joint-delegated, and (3) saliency. The male partners also seemed to view prenatal diagnosis as either an information decision or an action decision and appeared to take a more active role in decision making when the decision was viewed as an action decision.     

The Economic Benefits of Increased Treatment Duration and Intensity in Residential and Outpatient Substance Abuse Treatment Settings

This study presents estimates of the economic benefits to society from community-based substance abuse treatment. The analysis focused on the impact of length of stay and frequency of counseling on clients' crime-related and health care costs, welfare receipts, and income taxes. The results indicate that the benefits from an additional day of treatment were on average $21 for short-term residential treatment (or 29% the cost of a day of care), $13 for outpatient drug-free treatment (or 94% the cost of a day of care), and $5 for long-term residential treatment (or 9% the cost of a day of care). No benefits were found from additional counseling provided by a client's primary therapist. Withthe exception of short-term residential care, estimated increases in client earnings from longer lengths of stayexceeded the benefits to society. Our estimates do not include benefits realized during treatment or beyond the year after treatment.     

The Client's Perspective of Genetic Counseling—A Grounded Theory Study

Previous studies of genetic counseling have mainly focused on outcomes defined by researchers or service providers, and have frequently related to changes in reproductive behavior and/or client knowledge. A longitudinal study of 43 families referred to a clinical genetic service was undertaken to ascertain client needs and expectations of the service, and to identify relevant outcomes from the clients' perspective. Semistructured interviews were conducted with each client, prior to and after genetic counseling. The transcribed interviews were analyzed using grounded theory. The need for certainty emerged as a powerful factor that motivated clients to pursue the genetic referral. The client's lay knowledge of the condition, satisfaction of the need for certainty, and the formation of a personalized relationship between the client and the genetics staff significantly influenced the central outcome, identified as a change in the client's psychological adaptation to the genetic condition in the family.     

Taiwanese University Students' Conceptions of Counseling

The purpose of this study was to describe and discuss Taiwanese university students' conceptions of counseling. A qualitative method was used to analyze 60 in-depth interviews from 30 male and 30 female students at a national university in central Taiwan. Results indicated that Taiwanese university students recognized the importance of counseling services to students and citizens, even though most of them were unfamiliar with counseling. Thematic patterns emerged from Taiwanese university students' conceptions of counseling, which suggested implications for clinical practice, education, and research. Namely, accessibility, familiarity, credibility, and effectiveness of counselors seemed to enhance students' willingness to seek counseling. Results also suggested that counseling services should implement a combination of educational, preventive, and therapeutic functions.     

Across the Spectrum: Case Studies in Genetic Counseling for Breast and Ovarian Cancer

We present three vignettes based on participants counseled as part of a clinical research program. These include a young unaffected woman at risk for a familial mutation, a newly diagnosed breast cancer patient, and a woman with recurrent ovarian cancer. Through the use of detailed vignettes, multifaceted issues that arise in cancer genetic counseling are highlighted.