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.     

A Survey of Patients’ Experiences with the Cancer Genetic Counseling Process: Recommendations for Cancer Genetics Programs

In order to promote ongoing quality improvement of not only the Penn State Cancer Genetics Program, but also other cancer risk assessment programs throughout the country, we developed, piloted and conducted a survey to explore patient expectations, experiences, and satisfaction with the cancer genetic counseling process. The comprehensive survey was mailed to 340 eligible patients, 156 (45.9%) of whom returned the completed survey within the allotted time. Responses to closed-ended questions were tallied and open-ended questions were content analyzed. Major findings show that: (1) Patients were seeking cancer-related information and support throughout the cancer risk assessment process and were interested in participating in available research studies; (2) The setting in which patients are seen for cancer risk assessment may pose potential emotional ramifications; (3) Misperceptions regarding insurance discrimination and lack of insurance coverage persist; (4) Patients view the genetic counselor as responsible for updating them about new discoveries. Specific recommendations for cancer genetics programs are included.     

Genetic Counselors’ Experiences with Adolescent Patients in Prenatal Genetic Counseling

Adolescents comprise a portion of women who present to genetic counselors prenatally. In this study, prenatal genetic counselors (N = 128) were surveyed regarding their perceptions of genetic counseling sessions for adolescent (ages 13–19) and adult (ages 20–34) patients. Counselors perceived differences in methods used to communicate risk information for adolescent versus adult populations. Respondents reported that it is more difficult for adolescents to understand prognostic information than adults. They also noted differences between adult and adolescent populations with respect to the people who typically accompany the patient to the session. Respondents stated that adolescents were accompanied by a parent, friend, or sibling, which differed from adults who reportedly were accompanied by a significant other, father of the pregnancy, or by no one. These findings suggest it is important to recognize that adolescent patients are in a unique stage of their development which may influence a prenatal genetic counseling session.     

African American Children’s Racial Discrimination Experiences and Mental Health

Journal of Child and Family Studies - The current study examined how African American children’s experiences of perceived personal racial discrimination and perceived vicarious racial...     

Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter

Family history information comprises an important tool in identifying and referring patients at risk for hereditary breast and ovarian cancer (HBOC) to cancer genetic counseling. Despite recommendations and support provided by numerous professional organizations, cancer genetic counseling services are underutilized by atrisk patients. This study aimed to: (1) determine the rate of genetic counseling utilization following a referral letter, (2) characterize factors (barriers and supports) which influenced uptake of services, and (3) identify potential strategies for increasing utilization. This study evaluated the uptake of cancer genetic counseling among 603 screening mammography patients identified as having an increased risk for HBOC based on National Comprehensive Cancer Network (NCCN) guidelines. At risk individuals and their primary care providers were mailed a referral letter recommending genetic counseling. Three focus groups (N = 24) were conducted to identify responses to receiving a letter recommending genetic counseling, barriers to seeking genetic counseling, and facilitating factors to utilizing these services. Participant responses were qualitatively analyzed using thematic and cross case analysis. Within one year, 50/603 (8 %) of the identified at-risk women completed a genetic counseling appointment. Participant-perceived barriers which influenced their decision not to seek genetic counseling included lack of relevance and utility, limited knowledge about genetic counseling, concerns about the genetic counseling process, and concerns about cost and insurance coverage. Participant-perceived facilitating factors which would support a decision to seek genetic counseling included greater awareness and education about genetic counseling services when receiving a referral, and improved follow up and guidance from their provider. Findings from this study support the need for patient and primary care provider education, and improved provider-patient communication to increase uptake of genetic counseling services.     

African American and White Women’s Experience of Sexual Assault and Services for Sexual Assault

This article presents the results of a study assessing the needs and experiences of African American and White female survivors of sexual assault in the state of Maryland. Eight specific hypotheses regarding differences in the needs and experiences of African American as compared to White women receiving partial or no support through analyses of interview data drawn from 213 survivors (African American survivors, n = 133; White survivors, n = 80) were explored. No differences were reported in medical care received; however, in comparison to their White counterparts, African American women reported decreased use of sexual assault crisis centers and mental health services, and postassault help-seeking through use of sexual assault hotlines. Barriers and facilitators associated with treatment experiences differed by ethnicity. Findings are discussed in relation to future directions for research, and service and policy improvement for survivors of sexual assault.     

Differences Between African American and White Research Volunteers in Their Attitudes,Beliefs and Knowledge Regarding Genetic Testing for Alzheimer’s Disease

Genetic susceptibility testing for common diseases is expanding, but little is known about race group differences in test perceptions. The purpose of this study was to examine differences between African Americans and Whites in knowledge, attitudes, and motivations regarding genetic susceptibility testing for Alzheimer’s disease (AD). Before enrolling in an AD genetic testing research trial, 313 first-degree relatives of AD patients (20% African American; 71% female; mean age = 58 years) were surveyed regarding: (1) knowledge about genetics and AD risk; (2) concerns about developing AD; and (3) reasons for seeking testing. In comparison to Whites, African Americans were less knowledgeable about genetics and AD risk (p < .01) and less concerned about developing AD (p < .05), with lower levels of perceived disease risk (p = .04). The results suggest that African Americans and Whites differ notably in their knowledge, beliefs, and attitudes regarding genetic testing for AD. Additional research with more representative samples is needed to better understand these differences.     

Parkinson’s Disease: Patients’ Knowledge,Attitudes, and Interest in Genetic Counseling

The objective of this study was to assess the genetics knowledge of patients with Parkinson’s disease (PD), and to explore their attitudes on genetic testing and interest in genetic counseling. We surveyed 158 patients from the University of Maryland Parkinson’s Disease and Movement Disorders Center. Patients averaged a score of 63% on general genetics knowledge and 73% on PD genetics knowledge. Participants had an overall positive attitude toward genetic testing: 80% believed that the use of genetic tests among people should be promoted, and 83% would undertake genetic test for PD if it was available. Patients reported a high interest to discuss the benefits, risks, and impacts of genetic testing for PD (mean sum score?=?26, range?=?9–35), and 43% patients expressed interest in meeting with a genetic counselor. Multivariate regression analysis showed that patients who had more positive attitudes toward genetic testing for PD were more interested in meeting with a genetic counselor (β?=?0.6, p?<?0.001). This study is the first to demonstrate an interest in genetic counseling among patients with PD. Our findings demonstrate a new niche for genetic counselors to support patients in clarifying gaps or misconceptions in knowledge about PD genetics as well as the possible risks, benefits, and limitations of genetic testing.     

Racism and Sexism as Correlates of African American Women’s Psychological Distress

Historically, researchers have neglected the lives of African American women, and very little research has looked specifically at concurrent examinations of multiple oppressions associated with multiple minority identities as predictors of mental health. The current study aimed to increase our knowledge about African American women by examining the relations between external and internalized racism and sexism and African American women’s psychological distress. One hundred sixty participants were recruited through a number of United States’ organizations via the internet. Results indicated that when external and internalized oppression based on race and gender were examined concomitantly, only sexist events emerged as a positive predictor of distress.     

A Comparison of Telephone Genetic Counseling and In-Person Genetic Counseling from the Genetic Counselor’s Perspective

Growing demand for and limited geographic access to genetic counseling services is increasing the need for alternative service delivery models (SDM) like telephone genetic counseling (TGC). Little research has been done on genetic counselors’ perspectives of the practice of TGC. We created an anonymous online survey to assess whether telephone genetic counselors believed the tasks identified in the ABGC (American Board of Genetic Counseling) Practice Analysis were performed similarly or differently in TGC compared to in person genetic counseling (IPGC). If there were differences noted, we sought to determine the nature of the differences and if additional training might be needed to address them. Eighty eight genetic counselors with experience in TGC completed some or all of the survey. Respondents identified differences in 13 (14.8 %) of the 88 tasks studied. The tasks identified as most different in TGC were: “establishing rapport through verbal and nonverbal interactions” (60.2 %; 50/83 respondents identified the task as different), “recognizing factors affecting the counseling interaction” (47.8 %; 32/67), “assessing client/family emotions, support, etc.” (40.1 %; 27/66) and “educating clients about basic genetic concepts” (35.6 %; 26/73). A slight majority (53.8 %; 35/65) felt additional training was needed to communicate information without visual aids and more effectively perform psychosocial assessments. In summary, although a majority of genetic counseling tasks are performed similarly between TGC and IPGC, TGC counselors recognize that specific training in the TGC model may be needed to address the key differences.     

Differences in African American and White Women’s Attitudes Toward Lesbians and Gay Men

The aim of the present study was to examine racial differences in women’s attitudes toward lesbians and gay men and to offer an understanding of these differences. Participants were 224 18–30 year old heterosexual African American (64%) and White (36%) female undergraduates from a large urban university in the southeastern United States. Participants completed measures of social demographics, sexual orientation, and sexual prejudice. Results showed that African American, relative to White, women endorsed more negative attitudes toward lesbians and gay men. Also, unlike White women, African American women reported more negative attitudes toward gay men than lesbians. Implications are discussed regarding differences in cultural contexts that exist between African American and White women.     

Women’s Decision Making about Risk-Reducing Strategies in the Context of Hereditary Breast and Ovarian Cancer: A Systematic Review

Women who have a mutation in the BRCA1 or BRCA2 genes have up to an 87% lifetime risk of breast cancer and up to a 40% lifetime risk of ovarian cancer. Cancer prevention and early detection strategies are often considered by these women to address this heightened risk. Risk-reducing strategies include risk-reducing mastectomy and oophorectomy, breast and ovarian cancer screening, and chemoprevention. This systematic literature review summarizes the factors and contexts that influence decision making related to cancer risk-reducing strategies among women at high-risk for hereditary breast and ovarian cancer. In the 43 published research articles reviewed, three main types of factors are identified that influence high-risk women’s decisions about risk-reducing strategies: a) medical and physical factors, b) psychological factors and c) social context factors. How these factors operate in women’s lives over time remains unknown, and would best be elucidated through prospective, longitudinal research, as well as qualitative research.     

Men’s Lived Experiences with Breast Cancer: The Double Consciousness of Marginal Men

The present study investigated men’s experiences with their breast cancer diagnosis and post-mastectomy lives. It is based on the sociological tradition of investigating the “marginal man” who lives in two not merely different but incompatible cultures (e.g., the pink ribbon culture of breast cancer and the everyday ideals of masculinity and the male body). Seventeen mature and aging U.S. men who all lived with a breast cancer diagnosis and treatment, including a mastectomy, were interviewed. The principle finding reveals that they saw themselves as men and remain seen by others in terms of their gender, not their atypical illness. Two meta-themes underlying men’s breast cancer stories were identified: body talk and embodiment of their breast. Each of these themes had subthemes. Noticeable was how the historical era when diagnosed and men’s aging experiences influenced their illness journey and stories. For all, even the recently diagnosed, their journey was a lonely one. No man had known another man with breast cancer to consult. Only a few men felt their breast cancer was a stigma, and they too did not feel emasculated. Instead, in the process of embodying their breast cancer, they amended their identities and practiced softer, hybrid forms of masculinities.

     

Sources of Uncertainty About Daughters’ Breast Cancer Risk that Emerge During Genetic Counseling Consultations

Uncertainty is central to the experience of genetic decision making and counseling about cancer risk. Women seeking genetic counseling about their breast cancer risk may experience a great deal of uncertainty about issues related to their daughters. We used a theory of Communication and Uncertainty Management to guide analysis of sources of uncertainty about daughters that emerged during 16 video-recorded and transcribed conversations between mothers at risk for a BRCA 1/2 mutation and their genetic healthcare practitioners. An interpretive design and constant comparative method revealed three dominant patterns or themes representing sources of uncertainty mothers have relating to their daughters: disease risk, future cancer screening, and communication of related information to daughters. Both practitioners and mothers discussed these aspects of uncertainty. The findings identify the significant role uncertainty and familial concerns play in mothers’ genetic testing decision making process. To assist genetic practitioners, we highlight daughter-related concerns that mothers are uncertain about and which are vital to their genetic counseling needs.     

Life Trajectories, Genetic Testing, and Risk Reduction Decisions in 18–39 Year Old Women at Risk for Hereditary Breast and Ovarian Cancer

This qualitative study identified four life trajectories that influenced the decision in young women to have genetic testing for mutations in BRCA1/2 and subsequent risk reduction decisions after receiving a positive mutation result. Fifty nine women between the ages of 18–39 years were interviewed in this grounded theory study, 44 of those tested were found to have a mutation in either BRCA1 or BRCA2. Of those with a mutation, 23 had no history of cancer and 21 had a breast cancer diagnosis. Analysis of the 44 participants tested found that risk reducing decisions were related to the life trajectories that preceded genetic testing. These life trajectories included: 1) Long-standing awareness of breast cancer in the family, 2) Loss of one’s mother to breast cancer at a young age, 3) Expression of concern by a health care provider, and 4) Personal diagnosis of breast cancer. Understanding possible influences behind decision making for genetic testing and risk reduction in young women may assist health care providers in offering age appropriate guidance and support.     

Women’s Experiences of Micro-Enterprise: Contexts and Meanings

The article confronts global claims of micro-enterprise to promote poverty reduction and gender equality. The article examines 60 in-depth interviews with low-income Palestinian and Israeli Jewish women (aged 25–45 years) who engaged in micro-enterprises. The research particularly focused on women’s motivations, personal qualities required for success, systemic barriers and opportunities, and women’s constructions of micro-enterprise as a means to overcome poverty and achieve gender equality. The article indicates that in the frame of gender and economic exclusionary context, without comprehensive institutional support, micro-enterprise and self employment may not promise more than a partial solution to poverty and gender discrimination. The article questions the tendency to globalize policies without taking into account the local contexts in which these policies are implemented.