Interest and Beliefs About BRCA Genetic Counseling Among At-Risk Latinas in New York City

Background: Latinas are less likely to use genetic services (counseling and testing) for hereditary breast and/or ovarian cancer risk compared to other ethnic groups. Meanwhile, little is known about barriers to genetic counseling among Latinas at increased risk of inherited breast cancer. Methods: A two-phase pilot study was conducted to examine interest, barriers and beliefs about BRCA genetic counseling among at-risk Latinas in New York City and explore the potential for developing a culturally-tailored narrative educational tool for use in future studies. Phase 1 included quantitative telephone interviews (N = 15) with bilingual participants with a personal diagnosis at a young age and/or family history of breast and/or ovarian cancer. Quantitative results informed development of a narrative prototype educational presentation viewed by a subset of participants (N = 10) in Phase 2 focus groups. Results: Despite barriers, including lack of awareness/knowledge, concerns related to learning cancer risks of family members, and concerns about cost/health insurance, participants reported positive attitudes, beliefs and interest in learning about BRCA genetic counseling. Further, significant increases in knowledge were demonstrated from pre-post presentation (p = 0.04). Conclusion: There is an unmet need to educate at-risk Latinas about BRCA genetic counseling. Culturally-tailored educational materials including narratives may increase knowledge about BRCA genetic counseling among this underserved group. The effectiveness of these approaches should be tested in future research with larger samples.     

Evaluation of a peer support program for women with breast cancer—lessons for practitioners

The present study aimed to describe how a volunteer peer support service assists women with breast cancer, and provides guidelines for practitioners in the development and implementation of such programmes. A two‐phase evaluation of a breast cancer peer support program was undertaken to describe important attributes of the peer support intervention, the impact of the volunteer visit on women's self‐reports of anxiety, and key indicators of a successful volunteer visit. Phase 1 included focus groups with 57 women previously treated for breast cancer. Phase 2 included a survey of 245 women also treated previously for breast cancer and visited by a Breast Cancer Support Volunteer. The key aspect of the peer support process was the bond of common experience leading to a decrease in social isolation, an increase in optimism about the future and reassurance about personal reactions and femininity. It is recommended that peer support programmes should aim to time support visits to coincide with the time when patient support needs are highest, that volunteers need to be recruited from a range of backgrounds and matched to patients most similar to them in way of life, and that peer support services should be embedded in a broad network of community support services. Copyright © 1999 John Wiley & Sons, Ltd.     

Women’s Experience of Telehealth Cancer Genetic Counseling

Telegenetics offers an alternative model of delivering genetic counseling to rural and outreach areas; however there is a dearth of qualitative research into the patient’s experience. Twelve women who had received telemedicine genetic counseling for hereditary breast and/or ovarian cancer (HBOC) within the previous 12 months participated in a semi-structured telephone interview. The interview explored women’s experience with telegenetics, satisfaction, perceived advantages and disadvantages and quality of the interaction with their genetic professionals. Overall women were highly satisfied with telegenetics. Telegenetics offered them convenience and reduced travel and associated costs. The majority of women described feeling a high degree of social presence, or rapport, with the off-site genetic clinician. One woman with a recent cancer diagnosis, reported that telemedicine was unable to meet her needs for psychosocial support. This finding highlights the need to be mindful of the psychosocial support needs of women with a recent diagnosis being seen via telegenetics. Patients attending for HBOC genetic counseling are generally highly satisfied with the technology and the interaction. Care should be taken, however, with patients with more complex psychosocial needs.     

Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer

BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA's decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.     

Connecting in the Twitterverse: Using Twitter to satisfy unmet belonging needs

The current study explored how social media can satisfy unmet needs for belonging. We predicted that, of those who experience chronic ostracism (feeling excluded and ignored frequently), people high in need to belong would utilize Twitter to satisfy their unmet belonging needs more than those low in need to belong. Specifically, individuals high in need to belong and chronic ostracism should use Twitter to form and maintain parasocial relationships (one-sided relationships with media figures). Participants (n = 315) completed a survey assessing their chronic ostracism experiences, dispositional need to belong, and Twitter behavior, particularly regarding potential parasocial relationship targets (n = 229). As expected, when participants reported experiencing high rates of chronic ostracism, participants high in need to belong used Twitter more than those low in need to belong, particularly following more parasocial relationship targets. Thus, maintaining parasocial relationships on Twitter may be an effective way to satisfy unmet belonging needs.     

An Interpretative Phenomenological Examination of Psychosocial Changes among Breast Cancer Survivors in their First Season of Dragon Boating

This study used an interpretative phenomenological perspective to qualitatively examine changes in body image and social support experienced by novice participants in breast cancer survivor dragon boating programs. Fourteen women were interviewed at the beginning and end of their first dragon boating season. The participants typically experienced increased perceptions of strength and fitness, and a shift towards discussing body image with respect to fitness, strength, and musculature rather than weight and appearance. Many women discussed an emerging athletic identity. Social benefits included connecting to women who understood the breast cancer experience and could share first-hand information. Some women also reported struggling with the constant reminder of being a survivor. Overall, breast cancer survivors experienced benefits, but further work should explore how they cope with challenges and how dragon boating could inform other physical activity contexts for this population.     

A Qualitative Study of Health Professionals' Views Regarding Provision of Information About Health-Protective Behaviors During Genetic Consultation for Breast Cancer

This study aimed to explore health professionals' views and practice regarding the provision of information about health-protective behaviors (e.g., exercise, alcohol consumption, diet) during genetic consultation for breast cancer. Ten genetic counselors participated in three focus groups, and seven medical specialists were interviewed in a focus group or individually. Data was analyzed using the constant comparative method. Findings suggested that health professionals held differing, often opposing, views about the value of health-protective behaviors for women at increased risk of breast cancer. The content and extent of information provided about health-protective behaviors varied widely, and participants expressed a need to form consensus regarding information provision both within and across clinics. The main barriers to providing information regarding health-protective behaviors included the lack of research evidence regarding the impact of these factors and higher priority of other information need to be provided in the limited consultation time. Participants generally did not consider it their role to promote health-protective behaviors, and were concerned about the psychological impact of providing information about behavioral risk factors during genetic consultations.     

Participation in Breast Cancer Genetic Counseling: The Influence of Educational Level, Ethnic Background, and Risk Perception

Genetic counseling has been suggested as a means of providing information and support to women with a family history of breast cancer. Yet women who undergo cancer genetic counseling in the United States generally consist of only a subset of those at risk, namely well-educated, upper-middle class, European American and Jewish women. We report outcomes from a study that provided a unique opportunity to determine whether women of African American, European American, Native American, or Ashkenazi Jewish ancestry have varying interest in having cancer genetic counseling. The study offered a genetic counseling session to 97 women with a family history of breast cancer who were participating in a larger interview study designed to assess attitudes toward genetic testing for breast cancer. The study offered genetic counseling free of charge to all study participants with a family history of breast cancer, removing the potential barriers of cost, the need for a physician referral, and lack of awareness of genetic counseling. Fifty women out of the 97 women offered genetic counseling (52%) accepted the offer by completing a session. Those who accepted genetic counseling had a higher educational level, a higher perceived risk of breast cancer, and were more likely to expect a positive BRCA1 or BRCA2 genetic test if they were to undergo genetic testing. When controlling for education level, there was no correlation between the participants' ethnic background and acceptance of a genetic counseling session. Outreach efforts to minority populations may increase awareness of the availability of genetic counseling and may facilitate participation by such populations.     

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.     

Perceptions of High-Risk Care and Barriers to Care Among Women at Risk for Hereditary Breast and Ovarian Cancer following Genetic Counseling in the Community Setting

Data are limited regarding barriers to care among women, with or at risk for hereditary breast and ovarian cancer (HBOC), following genetic counseling in the community setting. Using a telephone survey, we retrospectively addressed perceptions of post-genetic counseling medical care and barriers to care among 69 at-risk women from the non-academic setting. Of these, all agreed that following cancer screening recommendations was better than not following them; none felt recommendations were too difficult to follow; all believed screening would help keep them healthy; 57% believed screening would prevent cancer. Twenty-five percent noted discomfort with breast imaging; 29% found ovarian cancer screening uncomfortable. Close to a quarter of participants reported difficulty deciding whether or not to undergo risk-reducing mastectomy while 10% noted difficulty deciding for or against bilateral salpingo-oophorectomy. There were no perceived major barriers to care, although 38% felt that screening reminders would be helpful, and 10% needed more help in following through with care. Overall, participants believed that they were benefiting from their post-genetic counseling medical care. This work identified HBOC-related support needs to include: informational resources that promote improved understanding of cancer risk and high-risk management; screening reminder systems; and decision support tools.     

Health Beliefs and Behaviors of Women Who Have Received Genetic Counseling For Breast Cancer

There are both genetic and behavioral risk factors for breast cancer, but the interaction between these factors is not clear. Little is known about the impact of receiving genetic risk information for breast cancer on behaviors such as diet and physical activity. Seven focus groups were conducted with 23 women who had recently received genetic counseling for breast cancer, in order to explore health beliefs and behaviors following genetic counseling. Findings revealed that there was much confusion and uncertainty about the associations between health behaviors and breast cancer risk, and participants reported that receiving genetic counseling had little impact on health protective behaviors. Further research is required to understand variation in response to genetic risk information, and to assess the impact of providing additional information regarding lifestyle factors.     

Genetic Risk,Perceived Risk,and Cancer Worry in Daughters of Breast Cancer Patients

This study explored relationships between worry, perceived risk for breast cancer, consulting a genetic counselor, having genetic testing, and genetic risk for women whose mothers had breast cancer. Analyses involved data from a community-based phone survey of women whose mothers had breast cancer. Participants were categorized as having low, intermediate, or high genetic risk based on their reported family history, in accordance with an accepted classification scheme. The Lerman Breast Cancer Worry Scale measured worry, and participants reported their perceived lifetime likelihood of breast cancer, risk compared to others, and chance from 1 to 100. ANOVA, chi-square, and multiple regression analyses were conducted as appropriate. One hundred-fifty women participated. Mean age was 38 years, and 81% were Caucasian. Fifty-two women had low, 74 had intermediate, and 24 had high genetic risk for breast cancer. There were no significant differences in worry or perceived risk by hereditary risk category. Most high-risk women (91%) had not spoken with a genetic counselor, and no one had previous genetic testing. These findings suggest perceived risk, worry about breast cancer, and use of expert consultation do not match the genetic contribution to risk. There is a need for effectively stratifying and communicating risk in the community and providing tailored reassurance or referral for high-risk assessment.     

Preferences Regarding Targeted Education and Risk Assessment in People with a Family History of Major Depressive Disorder

Genetic testing for susceptibility to major depressive disorder (MDD) is not available for clinical use at present. Given this, family history remains the best predictor for development of MDD, and family-history-based risk assessment and information about familial aspects of MDD may be useful to clients at increased risk for MDD attending for genetic counseling. This study uses a mixed-methods design to assess the information needs and preferences of people at increased familial risk for MDD. Telephone interviews were conducted with 23 individuals, who had at least one first-degree relative with MDD and were recruited through advertisements placed on depression education websites. The most preferred way to access depression information was via the internet (87 % of participants), although this preference may have been due to the internet-based recruitment method. The second most preferred dissemination strategy (56 %) was face-to-face delivery through a health professional, including genetic counselors. Individuals reported a need for information about etiology and development of MDD, reproductive decision-making, early detection of symptoms and risk-reducing strategies. Nearly all participants expressed an interest in risk assessment. The present study found evidence of a high level of interest for information targeted to people at increased familial risk for MDD. Genetic counselors are likely to be called upon increasingly to provide supportive counseling to assist clients at increased familial risk in interpreting and contextualizing such information once it becomes available.     

Factors Associated with Psychological Distress among Women of African Descent at High Risk for BRCA Mutations

Little is known about psychological distress among women of African descent who are at high risk for a BRCA mutation. This is a group for whom breast cancer risk reduction is critical due to the group’s high rates of breast cancer mortality. Distress is important to consider as it may reduce the potential benefit of genetic counseling and negatively affect decision making related to risk reduction. The goals of the current study were to examine breast cancer-specific distress and depressive symptoms in women of African descent at who are at high risk for a BRCA mutation and to identify background factors associated with these outcomes. Participants were 148 high-risk African American and Caribbean women who were part of a larger study that offered participants BRCA counseling at no cost. Participants completed the Impact of Events Scale, which assessed breast cancer-specific distress, and the Center of Epidemiological Studies-Depression Scale, which assessed depressive symptoms. Results of analyses revealed that almost half of the sample achieved scores indicating high and clinically significant breast cancer-specific distress, while almost one-third had clinically significant depression scores. Results further showed that low income was significantly associated with cancer-specific distress, while having a cancer diagnosis was significantly associated with depressive symptoms. These results underscore the need for targeted psychological support throughout the genetic risk assessment process for this particular high-risk group.     

Psychosoziale Interventionen bei Patientinnen mit Brustkrebs

Breast cancer patients are subject not only to physical strain but also to substantial psychological and social stress as well as major threats and challenges.The paper presented gives an overview of the research status on psychosocial interventions to support patients in their coping endeavours.Psychosocial basic care of women with breast cancer is performed by the physicians treating oncologically and includes information fitting patients' information needs,and responding to their emotional stress.Evaluated training and educational programs are available for physicians to enhance their psychosocial competence.Psychosocial basic care is completed by psychoeducational interventions.In 20–30% of women with breast cancer, there is a need for a special psychotherapeutic treatment.Especially, supportive and cognitive-behavioral therapies in an individual or a group setting contribute to a reduction of anxiety and depression. Even anticipated side-effects of somatic treatments can be diminished by psychotherapy. Research in the field supports that there is a need for broad integration of psychosocial interventions into disease management programs for women suffering from breast cancer.     

Spiritual Coping, Family History, and Perceived Risk for Breast Cancer—Can We Make Sense of it?

Differences in spiritual beliefs and practices could influence perceptions of the role of genetic risk factors on personal cancer risk. We explored spiritual coping and breast cancer risk perceptions among women with and without a reported family history of breast cancer. Analyses were conducted on data from 899 women in primary care clinics who did not have breast cancer. Structural equation modeling (SEM), linear, and logistic modeling tested an interaction of family history of breast cancer on the relationship between spiritual coping and risk perceptions. Overall analyses demonstrated an inverse relationship between spiritual coping and breast cancer risk perceptions and a modifying effect of family history. More frequent spiritual coping was associated with lower risk perceptions for women with positive family histories, but not for those with negative family histories. Results support further research in this area that could influence communication of risk information to cancer genetic counseling patients.     

In Pursuit of the MD: The Impact of Role Models, Identity Compatibility, and Belonging Among Undergraduate Women

Women continue to face gender-related challenges in the medical field in places around the world where it has traditionally been male-dominated, including in the U.S. In an online experimental study with women attending a mid-sized public university in the Northeastern U.S. (N?=?55) who were interested in pursuing a pre-medical track (being pre-med) as undergraduates, we explored the mechanisms involved in undergraduate women’s pursuit of a career as a physician, focusing on three factors: exposure to successful female physician role models, perceived identity compatibility between being a woman and being pre-med, and sense of belonging in pre-med. Participants were randomly assigned to an experimental condition in which they were exposed to information about successful female physicians, or to a control condition in which no information about female physicians was provided. First, as hypothesized, participants exposed to successful female physicians reported higher perceived identity compatibility, sense of belonging, and interest in a medical career compared to those in the control condition. Second, also as hypothesized, perceived identity compatibility mediated the effect of role models on sense of belonging, and sense of belonging mediated the relationship between perceived identity compatibility and interest in a medical career. This study highlights three key factors in women’s pursuit of a career as a physician and the process through which these factors may operate. Findings support the use of role models to set a positive psychosocial process in motion that can support women’s persistence in medicine.