Evolution of the Colored Eco-Genetic Relationship Map (CEGRM) for Assessing Social Functioning in Women in Hereditary Breast-Ovarian (HBOC) Families

The CEGRM was initially conceived as a simple, concise, visual representation of the social interaction domains of information, tangible services and emotional exchanges (Kenen, R., & Peters, J. (2001). J Genet Counsel, 10, 289–309). A blend of the genetic pedigree, genogram, and ecomap, the CEGRM was developed to facilitate contemporary genetic counseling goals. An exploratory pilot study of 20 subjects showed that it was feasible, comfortable and efficiently accomplished, and that the process was useful both for assessment and as an intervention with study participants (Peters, J. A., Kenen, R., Giusti, R., Loud, J., Weissman, N., & Greene, M. H. (2004). Am J Med Genet Part A, 130A, 258–264). Subsequently, we have extended the CEGRM to 150 women from hereditary breast/ovarian cancer (HBOC) families; three different investigators have successfully administered this tool. The preliminary findings from the exploratory study were confirmed in the larger sample. Engaging in the interactive, insight-promoting CEGRM process provides a novel tool for assessing the social context of genetic testing, and helping high-risk women better understand and integrate genetic information into their personal and family identities, health beliefs, and decisions.     

“Social Separation” Among Women Under 40 Years of Age Diagnosed with Breast Cancer and Carrying a BRCA1 or BRCA2 Mutation

We conducted an exploratory, qualitative study investigating experiences of women who had developed breast cancer under the age of 40 and who were identified as BRCA1 or BRCA2 mutation carriers. These germline mutation carriers face an increased lifetime risk of a second primary breast cancer and an increased risk for a primary ovarian cancer. Thirteen women who fit this criteria participated in three focus groups conducted at a major cancer center in the UK during Spring 2003. We asked broad, open-ended questions that allowed for a wide range of responses about their cancer and genetic testing experiences, physical and psycho-social concerns, family and partner reactions and their need for social support. The women expressed feelings of devastation, loneliness, feeling different and isolation, ambivalence about having to support family members, worries about partner’s anxiety and depression, and anxiety about talking to family members, especially children. These feelings were stronger after the cancer diagnosis and compounded by the genetic test results that occurred at a later time. We also found that, at least temporarily, the women experienced what we call “social separation”—emotional distance from, or dissonance with groups they interact with or are part of, e.g., family and friends, frequently leading to a reduction in communication or a change in previously unstated, but accepted normal interaction. We concentrate on a few characteristics of social separation—feelings of aloneness, isolation and separation, use of silence and verbal discretion, the relationship between estrangement and kinship interaction and norm disruption, and are looking at social patterns of interpersonal relationships that may occur when risk and illness statuses are new and framing and feeling rules have not as yet been clearly developed due to a cultural lag.     

Facilitating Family Communication About Predictive Genetic Testing: Probands’ Perceptions

The responsibility of informing relatives that predictive genetic testing is available often falls to the proband. Support is required during this process, however the perceived utility of genetic counseling and other strategies to facilitate communication have not been explored. We investigated the experiences of 12 individuals with hereditary nonpolyposis colorectal cancer (HNPCC) in a semistructured telephone interview. Respondents informed their immediate family about the availability of genetic testing, however many more-distant relatives were not directly informed. Respondents were mostly satisfied with the way they told family members about testing and had mixed views about the usefulness of genetic counseling. Gender differences were observed, with most men expressing a need for guidance or support in communicating to relatives. Letters and booklets were thought to enhance the quality of information but the provision of further aids is unlikely to increase the number of relatives made aware of predictive testing by the proband.     

Parental Locus of Control and Family Functioning in the Quality of Life of Children with Sickle Cell Disease

The objective was to examine the association of parental locus of control (PLOC) with pediatric quality of life (QOL) for children with sickle cell disease (SCD), specifically addressing the potential mediating role of family functioning. Associations with disease severity were also investigated. Thirty-one primary caregivers completed standard measures of parental locus of control, family functioning, and quality of life during their child's inpatient admission for pain or fever. Results indicated that the PLOC total score was significantly associated with QOL in terms of self-competence and showed marginal significance with QOL social competence; it was significantly negatively correlated with family functioning. The association of the PLOC with QOL subscales was maintained when controlling for family functioning. Disease severity was not associated with PLOC scores. Primary caregivers endorsed more external parental locus of control beliefs. Further investigation of the association of caregiver appraisals and family functioning is warranted with the goal of addressing the stress that disease management with sickle cell may add to parent–child relationships.     

Teaching for adaptive expertise in biomedical engineering ethics

This paper considers an approach to teaching ethics in bioengineering based on the How People Learn (HPL) framework. Curricula based on this framework have been effective in mathematics and science instruction from the kindergarten to the college levels. This framework is well suited to teaching bioengineering ethics because it helps learners develop “adaptive expertise”. Adaptive expertise refers to the ability to use knowledge and experience in a domain to learn in unanticipated situations. It differs from routine expertise, which requires using knowledge appropriately to solve routine problems. Adaptive expertise is an important educational objective for bioengineers because the regulations and knowledge base in the discipline are likely to change significantly over the course of their careers. This study compares the performance of undergraduate bioengineering students who learned about ethics for stem cell research using the HPL method of instruction to the performance of students who learned following a standard lecture sequence. Both groups learned the factual material equally well, but the HPL group was more prepared to act adaptively when presented with a novel situation.     

Breast Cancer and the Descent: The Loss and Return of Spring

This article approaches breast cancer as an initiation into a healing process that provides the opportunity for the transformation of a basic fault in the personality. Breast cancer will be approached as a metaphor alerting one to a crises of interiority, a loss of connection to ones inner dimension and ones feminine consciousness. This metaphor contains both the loss of the connection and the possibility of its recovery. The process involves a velocity of descent very difficult to endure; it involves a profound and accelerated unraveling of the rationality that previously served as a container stabilizing the ego. The perilousness of the descent imagery reflects the precipitousness of this unraveling. The precipitous descent is seen as an attempt of the soul to heal and reintegrate the personality by revisiting and illuminating a space abandoned long ago. The integration of this part of the personality results in a return of generativity, energy, and creativity.     

Factors Influencing Men's Interest in Gene Testing for Prostate Cancer Susceptibility

Interest in genetic testing for inherited cancer susceptibility is high in the general population. Women at risk for BRCA1 and BRCA2 mutations represent the best-studied population undergoing genetic testing for cancer susceptibility. However, it is unclear whether factors influencing interest in genetic testing in women are directly applicable to men. We designed a study to examine factors associated with men's interest in genetic testing to identify prostate cancer susceptibility. Our sample consisted of 267 men present in waiting rooms of a urology clinic in an urban area. We examined whether the concept of monitoring could be used to predict the interest of men in a genetic test for prostate cancer susceptibility. Our results indicated that monitoring trait was positively associated with interest in genetic testing in these men, but principally for patients rather than nonpatients. Moreover we found that monitoring was associated with over estimation of risk in those men with prostate cancer. Other factors found to influence interest in genetic testing included recommendation by a doctor, family history of prostate cancer, and cost. This study indicated that interest in genetic testing and estimation of risk is influenced by a complex interaction between both psychological factors (monitoring) and nonbehavioral factors (such as patient status, cost, and doctor recommendation).     

集体心理干预对癌症患者应对方式影响的研究

为了探索集体心理干预对癌症患者应对方式的影响,本研究在90名癌症患者中随机选取46人进行干预研究。为考察干预效果,在干预后分别以医学应对方式问卷各维度因子的前测得分为协变量,以医学应对方式问卷各维度因子的后测得分为因变量,进行2(分组:实验组、对照组)×2(性别:男、女)×3(年龄:低龄组、中龄组、高龄组)的三因素协方差分析。结果表明,经过集体心理干预的实验组在应对方式各分量表上的得分要显著高于对照组,集体心理干预在性别和年龄上不存在显著差异。研究结果表明集体心理干预能够有效地改善癌症患者的应对方式。