Factors Influencing Perceptions of Breast Cancer Genetic Counseling among Women in an Urban Health Care System

The study assessed perceptions of breast cancer genetic counseling. Focus groups were conducted with twenty women (ages < = 50 years) in a Midwestern, urban health system identified as at above average risk of developing hereditary breast cancer and referred for breast cancer genetic counseling following mammography. All participants associated the words “breast cancer” with fear. African American women who received breast cancer genetic counseling may have channeled their fear into increased vigilance related to breast health. African American women who did not receive breast cancer genetic counseling were most knowledgeable about it. In contrast, Caucasian women who did not receive it reported uncertainty about the role of genetic counseling and testing in assessing breast cancer risk, mistrust in medical professionals, and lack of trust in the accuracy of genetic tests. The results could be used to help develop interventions to improve informed decision-making regarding breast cancer genetic counseling.     

Editorial on Supervision

This Editorial provides background information to inform the report from the United Kingdom (UK) and Eire Association of Genetic Nurses and Counsellors (AGNC) Supervision Working Group on Genetic Counselling Supervision. We begin by introducing the context of practice as a genetic counselor in the UK and then follow with an overview of events that have happened in our profession that led to the need and creation of the report. Genetic counseling supervision has become instrumental to our practice, training and registration as genetic counselors in the UK.     

Disclosure of Genetics Research Results after the Death of the Patient Participant: A Qualitative Study of the Impact on Relatives

When a gene mutation is identified in a research study following the death of the study participant, it is not clear whether such information should be made available to relatives. We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRCA2 mutations in a male relative, now deceased, who had early onset (under the age of 55) prostate cancer. The breast and ovarian cancer risk was unknown to the living relatives. Qualitative analysis of interviews with thirteen relatives indicated that those who had a higher risk perception, resulting from an awareness of cancer family history or experiential knowledge of cancer in their family, tended to adjust more easily to the results. All participants believed that genetics research results of clinical significance should be fed back to relatives. Those who were fully aware of the BRCA2 results and implications for themselves felt they had benefited from the information, irrespective of whether or not they had elected for genetic testing, because of the consequent availability of surveillance programs. Initial anxiety upon learning about the BRCA2 result was alleviated by genetic counselling. Factors influencing those who have not engaged with the information included scepticism related to the relative who attempted to inform them, young age and fear of cancer. Those who had not sought genetic counselling did not attempt further dissemination, and some were not undergoing regular screening. Implications for informed consent in genetics research programs, and the requirement for genetic counselling when research results are disclosed, are discussed. Names have been changed to protect the privacy of study participants.     

Assessment of Psychosocial Outcomes in Genetic Counseling Research: An Overview of Available Measurement Scales

The aim of the present paper was to describe and evaluate many of the measurement scales currently used in genetic counseling outcomes research. A team of three researchers reviewed the available literature and selected a variety of validated instruments suitable for measurement of genetic counseling outcomes. There are numerous scales to assess each of the following outcomes among counselees: satisfaction with genetic counseling; knowledge; decision-making; psychological adjustment; coping; perceived personal control; perceptions of disease risk; and family communication about genetic risk. However, the strengths and limitations inherent to each instrument warrant careful consideration prior to implementation. In the genetic counseling context, scale selection should be undertaken with thought directed towards the characteristics of the research sample (e.g. levels of literacy, culture, medical condition), the practicalities of the research setting (e.g. available funding and resources, time restrictions, researcher expertise), the purpose of the research (i.e. the specific aspect of the genetic counseling experience to be studied), and the science underlying the scale (e.g. theoretical framework, psychometric properties).     

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.     

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.     

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.     

同伴关系的发展研究

同伴关系因其在个体心理社会适应中的重要作用而受到研究者的广泛重视。本文介绍了作者及其团队在同伴关系领域基于13年的"中美儿童同伴关系数据库"开展的长期研究工作,主要包括儿童同伴关系的影响因素及影响后效、同伴关系的追踪研究、同伴关系的中美比较和网络同伴关系等主题,较为全面地阐述了儿童同伴关系领域的现有研究基础,概括了儿童同伴关系的童年期特点、发展趋势及其文化差异,总结了对儿童同伴关系及其发展的主要指标研究得到的结论,并从网络交往、同伴关系的社会网络分析和个体中心的分析等视角指出了同伴关系领域后续研究的可行方向。     

Psychological counseling as an adjunct to stuttering treatment: Clients’ experiences and perceptions

PurposeStuttering can trigger anxiety and other psychological and emotional reactions, and limit participation in society. It is possible that psychological counseling could enhance stuttering treatment outcomes; however, little is known about how clients view such counseling. The purpose of this study was to gain an understanding of clients’ experiences with, and perceptions of, a psychological counseling service that was offered as an optional adjunct to speech therapy for stuttering.MethodNine individuals who stutter (13-38 years old) participated in semi-structured interviews. Six participants had taken part in psychological counseling; three participants did not do so. Interview data were analyzed using grounded theory as a guiding framework.ResultsFour thematic clusters emerged from participants’ accounts: insights into personal decision-making, why others may not participate in counseling, psychological counseling as a worthwhile part of therapy, and counseling as a necessary component in a stuttering treatment program.ConclusionIn addition to experiencing barriers and facilitators to help-seeking that are reported in related fields, participants accounts also revealed novel facilitators (i.e., a ‘why not’ mentality and the importance of having a pre-existing relationship with the clinician who offered the service) and barriers (i.e., viewing the service as a ‘limited resource,’ and, the overwhelming nature of intensive stuttering treatment programs). Findings suggest that clients value the option to access psychological counseling with trained mental health professionals to support the stuttering treatment provided by speech-language pathologists. Participants made recommendations for the integration of psychological counseling into stuttering treatment programs.