If We Build It … Will They Come? – Establishing a Cancer Genetics Services Clinic for an Underserved Predominantly Latina Cohort

Background: Cancer genetic counseling and testing is a standard of care option for appropriate families and can identify individuals at increased risk prior to diagnosis, when prevention or detection strategies are most effective. Despite documented efficacy of cancer risk reduction in high-risk individuals, underserved and minority individuals have a disproportionate cancer burden and limited access to genetic counseling. Methods: A needs assessment survey documented gaps in knowledge and interest in prevention. Satellite clinics were established at two indigent healthcare systems. Cancer genetics CME lectures were conducted and referral guidelines disseminated to clinicians who referred patients for counseling. Results: An increase in clinician knowledge was demonstrated post-CME and reflected by quality referrals. Eighty-eight percent of patients kept their appointments. In the predominantly Latina⁶ (n=77) clinic population, 71.4% were affected with cancer, and 17 mutation positive families were identified. Preliminary data shows a positive impact on patients' motivation and behavior. The majority has expressed satisfaction and reduction in anxiety. Conclusions: This study demonstrates feasibility and acceptability of cancer genetics services in this population, suggesting the potential to reduce cancer morbidity in underserved, high-risk families.“Latino” is the most common census term for individuals of Spanish, Mexican, Central and South American, Cuban, or Puerto Rican descent, referring to ethnicity, and is generally considered a more ethnically/culturally based term for individuals of the aforementioned groups. As this cohort is female the feminine noun “Latina” is used     

The Relationship of Nondirectiveness to Genetic Counseling: Report of a Workshop at the 2003 NSGC Annual Education Conference

Nondirectiveness has been a guiding principle for genetic counseling since the founding of the profession. However, its efficacy and appropriateness in this role have been frequently questioned. A workshop at the 2003 Annual Education Conference of the National Society of Genetic Counselors provided audience participation in a discussion of these issues. Participants presented arguments for and against nondirectiveness as a central ethos. They described complex personal transitions in adapting what they had learned about nondirectiveness during training to the realities of the workplace. There was support for flexible approaches to genetic counseling, with varying adherence to nondirectiveness, based on client and family needs and values, clinical circumstances, and desired counseling outcomes. The discussion supports the use of clinical experience, outcomes research, and the experience of other professions to move beyond nondirectiveness and more accurately identify the theoretical bases that underlie genetic counseling in the variety of circumstances in which it is currently practiced.     

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.     

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.     

最大信息量法在CCSPC评分中应用的效度证据

采用基于最大信息量法的多维项目反应理论模型估计计算机模拟心理咨询病例系统（CCSPC）的合成分数及四个模块分数,并收集效标效度证据、成长变化效度证据和内容效度证据,结果表明：五个指标与心理咨询师考试三级技能成绩的相关均达到显著,且高于其与三级理论成绩的相关;所有指标得分均随着心理学学历升高而升高;多数指标分数随心理学本科年级提高而提高;获得心理咨询师资格认证的被试在CCSPC上有更高的得分.     

Barriers and Supports to Substance Abuse Service Use Among Homeless Adults

Although there is a great need for substance abuse services among the homeless, many homeless individuals do not use those services. This study examined barriers and supports related to service use. Participants recognized a need for treatment and significant barriers to accessing care.     

Chapter 7. Workfare

SUMMARY

In this chapter, I present the participants' experiences in the work setting from their own perspective.     

Voices from the Street: How Structural and Individual Factors Influence Homelessness

This study compared structural and individual factors related to persons who are homeless and how these factors affected their ability to utilize and benefit from available services. A qualitative case study design was used to conduct in-depth interviews with two participants receiving hospice care in a residence for the homeless. Results support previous findings that chronic homelessness is the result of multiple structural and individual factors that occur over time. Contrary to the literature on chronic homelessness, however, both participants were unique in their history of employment and strong desire to work, despite having limited work skills. Responses from both participants underscored the value of daily structure and meaningful occupation in residential addiction treatment.     

Between Midlife and Old Age:

This article is based on taped interviews with 56 women, individually and in groups, between the ages of 60 and 70, as well as my own experience as a woman past 65. Discussions with my friends and colleagues in this age group also contributed to my thinking. My sense is that the seventh decade is one of numerous transitions in the lives of women, and that these transitions require extensive, varied, and often painful opportunities for learning. Furthermore, the proximity to life's ending also acts as a strong motivator for engaging in activities that had previously been put off; these include a variety of self-selected and often pleasurable learning experiences. The learning that takes place at this age is rarely acknowledged; it is more likely to be overshadowed by the ageist assumption that old people lost their ability to learn or even to comprehend new information, and by the sexist assumption that women are incapable of making intelligent and practical decisions. These interviews and informal discussion contradict such stereotypical misinformation about old women, showing instead a high level of personal and interpersonal learning, as well as the development of extensive and creative new coping strategies.     

The Diagnostic Approach

No abstract available for this article.