Examining the Relationship Between Genetic Counselors’ Attitudes Toward Deaf People and the Genetic Counseling Session

Given the medical and cultural perspectives on deafness it is important to determine if genetic counselors’ attitudes toward deaf people can affect counseling sessions for deafness genes. One hundred fifty-eight genetic counselors recruited through the National Society of Genetic Counselors Listserv completed an online survey assessing attitudes toward deaf people and scenario-specific comfort levels discussing and offering genetic testing for deafness. Respondents with deaf/Deaf friends or who work in prenatal or pediatric settings had more positive attitudes toward deaf people than those without deaf/Deaf friends or those working in ‘other’ settings. More positive attitudes toward deaf people correlated with higher comfort level talking about genetic testing for the two scenarios involving culturally Deaf clients; and correlated with higher comfort level offering genetic testing to culturally Deaf clients wishing to have a deaf child. Attitudes and comfort level were not correlated in the scenarios involving hearing or non-culturally deaf clients. These results suggest that genetic counselors’ attitudes could affect information provision and the decision making process of culturally Deaf clients. Cultural sensitivity workshops in genetic counseling training programs that incorporate personal interactions with culturally Deaf individuals are recommended. Additional suggestions for fostering personal interactions are provided.     

An Exploration of Genetic Counselors’ Needs and Experiences with Prenatal Chromosomal Microarray Testing

Because of the higher yield over traditional chromosomal analysis, chromosomal microarray analysis (CMA) is being used increasingly in prenatal diagnosis. Unfortunately, the clinical implication of many copy number variants found on prenatal CMA is uncertain, complicating genetic counseling. Recognizing that uncertain results will be encountered frequently as more of the genome is assayed prenatally, we set out to understand the experiences and needs of genetic counselors when counseling patients about uncertain prenatal microarray results, their comfort with various aspects of prenatal genetic counseling, and their interest in additional education and training about prenatal microarray testing. We first interviewed 10 genetic counselors about their experiences of providing pre- and post-test genetic counseling about prenatal CMA. Based on the findings from the counselor interviews, we developed items for a survey to assess the prevalence of genetic counselors’ attitudes towards, experience and comfort with, and educational needs regarding prenatal CMA. Based on surveys completed by 193 prenatal genetic counselors, we found that when there is an uncertain CMA result, only 59 % would be comfortable providing genetic counseling and only 43 % would be comfortable helping a patient make a decision about pregnancy termination. Being less comfortable was associated with seeing fewer patients having prenatal CMA testing. Respondents expressed a high degree of interest in additional education about prenatal CMA and counseling about uncertain results. Further genetic counselor education and training aimed at improving counselors’ personal comfort with uncertain results and communicating about them with patients is needed.     

The Impact of Films on Viewer Attitudes towards People with Schizophrenia

The media, including television, newspapers, and popular films have been implicated in the facilitation of mental illness stigmatization by presenting negative and inaccurate depictions of various diagnoses. The current study examined the impact of film on participants’ knowledge, attitudes, and behaviors towards people with schizophrenia. A total of 106 participants completed questionnaires before and after viewing a 45-min film excerpt. Films viewed included a fear-based inaccurate, likeable-inaccurate, and an educational-accurate depiction of schizophrenia. There was also a control group. There were significant increases in stigmatizing attitudes for participants in the fear-based inaccurate group compared to the accurate and control group. Fear-based participants reported increased negative affect and endorsed statements suggesting that people with schizophrenia were unpredictable, dependent, and dangerous. These results provide support for the hypothesis that negative, inaccurate portrayals of severe mental illness enhance stigmatizing attitudes. Accurate film depictions, advocacy for social equality, and the continued education of individuals, clients, families, communities and organizations will help to mitigate the impact of films on mental illness stigmatization.     

Mothers’ Perspectives on Their Child’s Mental Illness as Compared to Other Complex Disorders in Their Family: Insights to Inform Genetic Counseling Practice

To facilitate the development of a therapeutic alliance in genetic counseling, it is important that the counselor understands how families might perceive the condition that constitutes the reason for the referral. Through training and professional practice, genetic counselors develop a thorough understanding of families' perceptions of the conditions that are common indications for genetic counseling. But, for referral indications that are less frequent, like serious mental illnesses, genetic counselors may feel less confident in their understanding of the family's experience, or in their ability to provide psychosocial support when serious mental illness is reported in a family history. This may impede the establishment of a therapeutic alliance. As research shows that most referrals for genetic counseling related to serious mental illness are for female first-degree family members of affected individuals, we sought to explore how this group perceives serious mental illness. To provide a frame of reference with which genetic counselors may be more familiar, we explored how women perceived serious mental illness compared to other common complex disorders in their family. We conducted semi-structured interviews with women who had a child with a serious mental illness (schizophrenia, schizoaffective disorder, bipolar disorder) and a first-degree relative with another common complex disorder (diabetes, heart disease, cancer). Interviews were transcribed and subjected to thematic analysis. Saturation was reached when nine women had participated. Serious mental illness was perceived as being more severe and as having a greater impact on the family than diabetes, heart disease, or cancer. Themes identified included guilt, stigma, and loss. Some of the most important issues that contribute to mothers' perceptions that serious mental illness is more severe than other common complex disorders could be effectively addressed in genetic counseling. Developing a heightened awareness of how family members experience a relative's mental illness may help genetic counselors to be better able to provide psychosocial support to this group, whether serious mental illness constitutes the primary reason for referral or appears in the family history during counseling for a different referral reason.     

Are Genetic Counselors and GLBT Patients “on the Same Page”? an Investigation of Attitudes, Practices, and Genetic Counseling Experiences

Gay, lesbian, bisexual, and transgender (GLBT) individuals comprise a growing patient population in genetic counseling, yet literature on working with this population is scarce. This study sought to investigate GLBT patient experiences in genetic counseling and genetic counselor attitudes and practices when counseling GLBT patients. Twenty-nine GLB individuals who had previously participated in genetic counseling, and 213 genetic counselors completed online surveys. No individuals identifying as transgender participated. The patient survey assessed disclosure of orientation, discrimination in genetic counseling, and quality of services received. The counselor survey assessed comfort with and attitudes about counseling GLBT patients, disclosure of counselor orientation, and whether they counsel differently with this population. Every patient denied experiencing discrimination during their session, but 17% reported their genetic counselor assumed they were heterosexual, and 45% indicated intake forms were not GLBT-inclusive. A majority of counselors (91%) reported having counseled GLBT patients and indicated they were comfortable doing so (86%), and 72% indicated no differences in their counseling approaches with GLBT patients. Few counselors (17%) received training in GLBT issues, and most (61%) desired such education. Additional findings and practice and research recommendations are presented.     

22q11.2 Deletion Syndrome: Attitudes towards Disclosing the Risk of Psychiatric Illness

22q11.2 Deletion Syndrome (22q11.2DS) is a common microdeletion syndrome with multisystem features. There is a strong association with psychiatric disorders. One in every four to five patients develop schizophrenia. Despite studies showing that early diagnosis and treatment are likely to lead to improved outcome, genetic counselors may be reluctant to discuss the risk of psychiatric illness. The aim of this research was to explore parental attitudes and genetic counselors’ perspectives and practice regarding disclosure of the clinical manifestations of 22q11.2DS, particularly the risk of psychiatric illness. We delivered a questionnaire to genetic counselors via established list-serves, 54 of which were completed. We also conducted interviews with four parents of adults with 22q11.2DS and schizophrenia. The majority of counselors and parents felt that the increased risk to develop a psychiatric illness is important to disclose. However, in the initial counseling session when the diagnosis was made in infancy genetic counselors were significantly less likely to discuss the risk of psychiatric disorders compared to other later onset features such as hypothyroidism (41?% vs. 83?%, p?=?0.001). When the diagnosis of 22q11.2DS was made in infancy, counselors’ responses in regard to timing of disclosure about psychiatric illnesses were fairly evenly divided between infancy, childhood and adolescence. In contrast, for other major features of 22q11.2DS, disclosure would predominantly be in infancy. The respondents reported that the discussion of psychiatric issues with parents was challenging due to the stigma associated with mental illness. Some also noted limited knowledge about psychiatric illness and treatment. These results suggest that genetic counselors could benefit from further education regarding psychiatric illness in 22q11.2DS and best strategies for discussing this important subject with parents and patients.     

Using Television to Create More Favorable Attitudes Toward Community Facilities for Deinstitutionalized Psychiatric Patients

Prebroadcast screenings were organized to measure the impact of a TV documentary, "Back Wards to Back Streets", on information levels, attitudes toward community-based treatment facilities, and beliefs about mental illness. Audiences of mental health professionals, political decision makers, and public TV subscribers were invited to screenings in New York City and Albany, New York. Based on an experimental design, half of each audience was randomly selected to respond to both pre- and postfilm questionnaires; others responded to postfilm questionnaires only. Among the New York City audience the film raised information levels, created more favorable attitudes, and changed beliefs about mental illness. One methodological implication is that small-scale screenings are a viable technique for studying TV's impact.     

Effects of a Workshop on Mental Health Practitioners' Attitudes Toward Homosexuality and Counseling Effectiveness

The effects of a training workshop on mental health practitioners' attitudes toward homosexuality and counseling behavior were compared with the effects of no intervention. Treated subjects (n = 21) were enrolled in a 3-day multimodal workshop about gay/lesbian counseling, and no-treatment comparison subjects (n = 31) were enrolled in other counselor education coursework. Before and after the workshop, subjects completed homosexuality attitude questionnaires and a quasibehavioral gay/lesbian counseling effectiveness measure. Treated subjects improved significantly more than comparison subjects on all measures, and the gains remained in evidence at an 8-week follow-up. The multimodal training workshop thus appears encouraging as a possible means of instilling needed attitudes and skills in counselors of gay and lesbian clients.     

Biological explanations and stigmatizing attitudes: using essentialism and perceived dangerousness to predict antistigma intervention effectiveness

The theory of essentialism suggests that biological explanations of stigmatized behavior may not be effective at decreasing stigmatizing attitudes. The effects of biological explanations on stigmatizing attitudes were the topic of two experiments. In the first experiment, participants (N = 243) perceived a biological explanation as a less effective in relation to dangerousness and social distancing attitudes about mental illness than about homosexuality. The second experiment (N = 113) compared the effect of biological and free choice explanations on stigmatizing attitudes about abnormal sexual and eating behaviors. The results indicated that a biological explanation increased belief in essentialism and was most effective for attitudes related to anger and blame. These results suggest that the effectiveness of biological explanations as an antistigma tool varies according to the attitude and stigmatized group.     

Biological Explanations and Stigmatizing Attitudes: Using Essentialism and Perceived Dangerousness to Predict Antistigma Intervention Effectiveness

ABSTRACT

The theory of essentialism suggests that biological explanations of stigmatized behavior may not be effective at decreasing stigmatizing attitudes. The effects of biological explanations on stigmatizing attitudes were the topic of two experiments. In the first experiment, participants (N = 243) perceived a biological explanation as a less effective in relation to dangerousness and social distancing attitudes about mental illness than about homosexuality. The second experiment (N = 113) compared the effect of biological and free choice explanations on stigmatizing attitudes about abnormal sexual and eating behaviors. The results indicated that a biological explanation increased belief in essentialism and was most effective for attitudes related to anger and blame. These results suggest that the effectiveness of biological explanations as an antistigma tool varies according to the attitude and stigmatized group.     

Different groups, different threats: a multi-threat approach to the experience of stereotype threats

Two studies demonstrated that different negatively stereotyped groups are at risk for distinct forms of stereotype threats. The Multi-Threat Framework articulates six distinct stereotype threats and the unique constellations of variables (e.g., group identification, stereotype endorsement) that elicit each stereotype threat. Previous research suggests that different negatively stereotyped groups systematically vary across these stereotype threat elicitors; a pilot study confirms these differences. Across two studies, groups that tend to elicit low stereotype endorsement (religion, race/ethnicity, congenital blindness) were less likely to report experiencing self-as-source stereotype threats (stereotype threats requiring stereotype endorsement) and groups that tend to elicit low group identification (mental illness, obesity, blindness later in life) were less likely to report experiencing group-as-target stereotype threats (stereotype threats requiring group identification). This research suggests that traditional models may overlook the experiences of stereotype threats within some groups and that interventions tailored to address differences between stereotype threats will be most effective.     

Familiarity with and social distance from people with mental illness: Testing the mediating effects of prejudiced attitudes

The purpose of this study was to examine prejudiced attitudes as a factor associated with social distance from people with mental illness. A total of 289 university students from Greece completed written measures assessing social distance from, prejudiced attitudes about, and familiarity with mental illness. A structural equation model with manifest variables was tested. Participants who reported to be more familiar with mental illness held stronger social care and weaker prejudiced beliefs, and consequently expressed a less strong desire for social distance. Implications of the results and suggestions for future research are outlined. Copyright © 2011 John Wiley & Sons, Ltd.     

Genetic Counselors’ Perceived Responsibilities Regarding Reproductive Issues for Patients at Risk for Huntington Disease

Research indicates that health care professionals’ attitudes may affect patients’ decisions regarding prenatal Huntington Disease testing, but few studies have sampled genetic counselors. In this qualitative study, genetic counselors described their experiences counseling individuals at risk for HD regarding reproductive decision-making. Five major research questions were investigated: 1) What are genetic counselor responsibilities? 2) What issues arise for patients and counselors? 3) How do counselors reconcile prenatal testing with presymptomatic testing? 4) To what extent are counselors’ initial expectations of at-risk patients’ beliefs and behaviors met? and 5) What advice would counselors offer to novice practitioners about working with this patient population? Fifteen genetic counselors experienced in counseling individuals at risk for HD participated in a semi-structured phone interview that yielded several themes. For example, participants identified their primary responsibility as information provision; less prevalent were psychosocial support and facilitating decision making. The most common ethical challenge was testing prenatally for HD which also results in presymptomatic testing of minors. Participants were divided about how directive to be in response to this ethical issue and about termination of a gene positive pregnancy.     

Gay, Lesbian, and Bisexual Patients’ Recommendations for Genetic Counselors: A Qualitative Investigation

Gay, lesbian, and bisexual (GLB) individuals comprise a growing patient population in genetic counseling. However, only one article from a genetic counseling journal provides empirical data on GLB patients' genetic counseling experiences and genetic counselor attitudes and practices regarding GLB patients. The present study, an extension of the aforementioned article, gathered further information about patients' genetic counseling experiences through semi-structured telephone interviews. Twelve of the previous study's 29 patient respondents (n?=?10 lesbian women, n?=?1 gay man, n?=?1 bisexual woman) participated. Interview questions concerned the use of medically inclusive forms, factors influencing patient disclosure, counselors' ability to relate to them, and their expectations of genetic counselors. Inductive analysis of the interviews yielded seven themes: 1) Medically inclusive forms with gender neutral terms are important; 2) Genetic counselor ability to relate to a GLB person depends more on the relationship established during the session and less on external symbols; 3) The presence of GLB-friendly symbols increases comfort when disclosing one's orientation; 4) Inclusion of the patient's partner is important and best done by encouraging their active participation in sessions; 5) When GLB patients disclose their orientation, they expect to be treated like any other patient; 6) Providers should ask about orientation if medically pertinent and the remaining discussion should take orientation into consideration; and 7) When a provider inquires about orientation it should be done in a safe and appropriate way. Illustrative quotations, genetic counseling practice implications, and research recommendations are presented.     

青少年和父母对心理咨询认识的质性研究

用访谈法探讨8个已求助和5个未求助家庭的青少年和父母对心理咨询的认识;比较已求助者和未求助者、青少年和父母对心理咨询认识的差异。结果显示,青少年和父母从6个方面描述心理咨询:功能、形式、适用问题、服务提供者、求助者和效果,各方面提及次数最多的分别是问题解决、谈话法、心理困扰、心理医生、心理有病的人和有帮助;误解包括心理咨询是针对心理有病的人,只有严重问题才需要求助。已求助者比未求助者更了解心理咨询,提及问题解决、心理困扰和有帮助的次数更多。青少年更多认为心理咨询是心理老师处理正常群体的心理困扰;父母更多认为心理咨询是心理医生处理心理疾病。青少年和父母对心理咨询的认识趋于理性和准确,但仍有误解需要澄清。     

Sexual Abuse Prevention for Individuals with Mental Retardation: Considerations for Genetic Counselors

It is now widely recognized that children, adolescents, and adults with mental retardation are especially vulnerable to sexual abuse. Because at least 10% of genetic conditions are reported to include mental retardation as a feature, the provision of services to individuals with mental retardation represents a substantial portion of the case load for many genetic counselors. Our objective is to educate genetic counselors and other health professionals about this vulnerable population in order to enhance the frequency and efficacy of inquiry into sexual education and sexual abuse prevention training for patients with mental retardation. The following review article is intended to assist genetic counselors by increasing their knowledge of factors that lead to sexual abuse and provides recommendations for integrating this information into the counseling interaction.     

Attitudes Towards Prenatal Genetic Counseling,Prenatal Genetic Testing,and Termination of Pregnancy among Southeast and East Asian Women in the United States

Recognizing the heterogeneity of the Asian population with regards to acculturation, education, health awareness, and cultural values is vital for tailoring culturally sensitive and appropriate care. Prior studies show that cultural values influence perceptions of genetics within Asian populations. The reputation of the family unit factors into decisions such as pregnancy termination and disclosure of family medical history, and the nondirective model of American genetic counseling may conflict with the historical Asian model of paternalistic health care. Previous studies also provide conflicting evidence regarding correlations between education, acculturation, age, and awareness and perceptions of genetic testing. The aims of this study were to describe attitudes towards prenatal genetics among Southeast and East Asian women living in the United States for varying amounts of time and to explore sociocultural factors influencing those attitudes. Twenty-three Asian women who were members of Asian cultural organizations in the United States were interviewed via telephone about their attitudes towards prenatal genetic counseling, prenatal genetic testing, and termination of pregnancy. Responses were transcribed and coded for common themes using a thematic analysis approach. Four major themes emerged. In general, participants: (1) had diverse expectations for genetic counselors; (2) tended to weigh risks and benefits with regards to genetic testing decisions; (3) had mixed views on termination for lethal and non-lethal genetic conditions; and (4) identified cultural factors which influenced testing and termination such as lack of available resources, societal shame and stigma, and family pressure. These findings may allow prenatal genetic counselors to gain a richer, more nuanced understanding of their Asian patients and to offer culturally tailored prenatal genetic counseling.     

大学生网络和当面咨询态度的比较研究

该研究的目的是比较大学生对网络和当面咨询的态度及其影响因素的不同。采用问卷调查的方式对603名大学生进行网络和当面咨询态度调查。结果表明从目前看当面咨询态度比网络咨询态度积极,但是网络咨询态度的两个维度均在中性评价之上,且接受心理帮助污名、交流恐惧度和自我隐蔽等三个求助态度的负面影响因素,对当面咨询态度有显著的负向预测作用,对网络咨询态度没有显著的负向预测作用。结论:网络咨询可以减弱学生求助态度负面因素的影响,弥补当面咨询的不足,增进学生的求助行为。     

Using Adult Learning Theory Concepts to Address Barriers to Cancer Genetic Risk Assessment in the African American Community

Utilization of cancer genetic risk assessment can be profoundly influenced by an individuals’ knowledge of risk assessment, attitudes regarding illness and healthcare, and affective reactions derived from social norms. Race and ethnicity play a powerful role in the development of an individual's attitudes and should be considered when attempting to understand a person's openness to cancer genetic risk assessment (Lannin et al., 1998). Until recently, however, cancer screening and prevention programs have been primarily based on data from studies conducted with the Caucasian population, yielding data that are not fully applicable to the African American community. In the last several years, research findings regarding African American's knowledge, attitudes, and feelings about genetic counseling and testing have grown (Matthews et al., 2000; Singer et al., 2004; Thompson et al., 2003). However, to the authors’ knowledge, these data have yet to be presented in a manner that both summarizes the barriers that African Americans have reported regarding cancer genetic risk assessment, while at the same time suggesting methods individual genetic counselors can utilize during community presentations to help address these barriers. This article will first summarize previous empirical findings regarding African Americans’ knowledge, attitudes, and feelings about cancer genetic risk assessment. The article will then apply adult learning theory to those findings to provide genetic counselors with practical, theory based techniques to apply toward community based educational programs with African American groups.