Knowledge and Expectations of Women Undergoing Cancer Genetic Risk Assessment: A Qualitative Analysis of Free-Text Questionnaire Comments

Individuals undergoing cancer genetic risk assessment have been found to have a poor understanding of the process, which may affect how well they cope with learning their risk. This paper reports free-text data from questionnaires completed by women undergoing a randomised controlled trial of a psychological intervention. Of the 268 women undergoing genetic assessment for familial breast/ovarian cancer risk who were invited to take part in the trial, 157 women returned research questionnaires. Of these, 97 women provided free-text comments upon referral to a cancer genetics clinic, 62 provided comments whilst waiting for risk information (average, moderate or high), and 36 women provided comments following notification of risk. This paper reports a thematic analysis of the free-text data. Themes reflected individuals’ poor knowledge and uncertainty about genetic risk assessment. How well individuals responded to learning their risk depended upon whether expectations had been met. Regardless of risk, individuals undergoing cancer genetic risk assessment are likely to benefit from increased information about its process and timescales, and access to increased psychological support. Free-text comments can provide valuable data about individuals’ expectations and knowledge of genetics services.     

Parent–Child Interaction Therapy and Chronic Illness: A Case Study

We examined the outcome of parent–child interaction therapy (PCIT) for a child diagnosed with Oppositional Defiant Disorder (ODD) and cancer. Robert, a 4-year-old Caucasian male, showed significant and meaningful changes in his behavior over the course of 13 weeks of PCIT, and Robert no longer met diagnostic criteria for ODD following treatment. His scores on the Eyberg Child Behavior Inventory and the Achenbach Child Behavior Checklist were in the clinical range before treatment and in the normal range at the conclusion of treatment. His mother also reported dramatic improvements in Robert's behavior during medical visits. Physician and social worker reports were consistent with her report. Such anecdotal data may have implications for the generalization of compliance to the medical setting for children with chronic illnesses. The results of this case study should prompt further investigation of parent-training interventions for children with chronic illnesses and disruptive behavior.     

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.     

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).     

Ethnographic Interview

For an occupational therapist unfamiliar with a culturally diverse treatment population, ethnographic interview is described as an appropriate method for assessing client group needs. This study describes the use of ethnographic interview as a tool which was culturally sensitive to the occupational behaviors of American Indians and Alaska Natives of the Northwest involved in drug and alcohol treatment. Results of the interviews helped the researcher identify sociocultural factors in the acquisition and maintenance of maladaptive behaviors. Recurring themes of the extended family network, the strength and complexity of social norms and codes, and the pervasiveness of alcohol use among this population are described in review of the literature and results of the interviews. Results of the Tennessee Self-concept Scale revealed an overall measure of self-esteem significantly lower than that of the normed population, and enerally supported rehabilitation issues originally identified by the f iterature and expanded on in the interviews. Implications for treatment discuss acceptance of the therapist by members of the culture, the concept of nonmterference, the role of purposeful activity, cultural identification and assimilation, and the use of group work.     

Religious issues in diagnosis: The V-Code and beyond

This paper addresses the issues around considering clients' religious and spiritual functioning as a matter of client diversity. Such issues may be under appreciated by many clinicians. The introduction of a religious and spiritual problem V-Code (V62.89) into the DSM-IV provided a significant accommodation of client religious and spiritual functioning in contemporary psychodiagnostics. The V-Code allows for explicit identification of a non-pathological religious or spiritual focus in treatment. The nature of and history of the V-Code's inclusion in DSM-IV is briefly reviewed. The strengths and limitations of the V-Code for raising clinician awareness of the religious and spiritual domain of client functioning is discussed and illustrated by a number of case examples. The V-Code approach is contrasted with Hathaway's (2003) clinically significant religious impairment concept. Both are viewed as making complementary contributions to a religiously and spiritually sensitive clinical practice.     

本土化意义治疗法的建立及对晚期癌症患者治疗作用的初步评价

通过参考国内外的意义治疗研究并总结前期经验,构建了＂意义治疗三步骤法＂的本土化意义治疗方法.应用＂意义治疗三步骤法＂对符合要求的50名宁养院晚期癌症患者进行治疗,并于治疗前后分别应用生命态度剖面图量表和McGill生活质量问卷进行评估.经过治疗后,94%的患者能有效心灵沟通,患者治疗后的生命意义感和生活质量明显提高,焦虑和抑郁情绪明显改善.因而＂意义治疗三步骤法＂是一种有效的本土化意义治疗工具,值得进一步研究与临床推广应用.