Ethnicity and the stigma of disabilities

Abstract

Recent studies reveal significant differences in the attitudes held by people of various ethnic groups toward people with disabilities. We surveyed university students and community members on a scale of desired social distance from people with disabilities. Study 1 revealed that Asian-American participants were more likely to stigmatize and less likely to differentiate between individuals with physical and mental illness than were their African-American, Latin-American or European-American counterparts. Study 2 compared U.S. born with Asian born Asian-Americans and found that nativity was a useful predictor of attitudes toward people with disabilities. Asian born participants were more likely to stigmatize disabilities overall (except mental illness and old age) than U.S. born participants presumably because of the level of assimilation. These cultural differences may have health care and psychosocial implications for those who are disabled and for health care providers.     

Effectiveness of Pre-counseling Genetic Education Workshops at a Large Urban Community Health Center Serving Low-Income Chinese American Women

Chinese American pregnant women and women of childbearing age face economic, cultural and linguistic barriers in accessing mainstream health care services. The Charles B. Wang Community Health Center developed a culturally and linguistically competent genetic education workshop for high-risk Chinese American prenatal patients. Patients referred for genetic counseling for thalassemia, abnormal triple screen results, and/or advanced maternal age were recruited to participate in the workshop. The workshop provided basic “genetic 101” education, focusing on topics that were directly relevant to the patients’ reasons for referral. The effectiveness of the workshop was measured using a quasi-experimental design with pre-post surveys administered to intervention and control group participants. The evaluation also included a genetic counselor assessment and a pilot study of genetic counseling appointment length. Overall, workshop participants showed significant increases in knowledge, positive attitude and self-efficacy regarding genetic services as compared to their control group counterparts. The pilot appointment length study data revealed that the workshop reduced the length of the genetic counseling appointment time by 40%. These positive findings suggest that it would be worthwhile to replicate the genetic education workshop at other health agencies serving Chinese-speaking populations and that further evaluation research should be conducted.     

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.     

Time Costs for Genetic Counseling in Preconception Carrier Screening with Genome Sequencing

Advances in technology and the promise of personalized health care are driving greater use of genome sequencing (GS) for a variety of clinical scenarios. As health systems consider adopting GS, they need to understand the impact of GS on the organization and cost of care. While research has documented a dramatic decrease in the cost of sequencing and interpreting GS, few studies have examined how GS impacts genetic counseling workloads. This study examined the time needed to provide genetic counseling for GS in the context of preconception carrier screening. Genetic counselors prospectively reported on the time spent in the results disclosure process with 107 study participants who were part of the NextGen study. We found that the median time for results disclosure was 64 min (ranged from 5 to 229 min). Preparation work was the most time-consuming activity. Qualitative data from journal entries, debrief interviews with genetic counselors, and detailed case conference notes provided information on factors influencing time for results disclosure and implications for practice. Results suggest that expanded carrier screening could require significant increases in genetic counseling time, unless we are able to generate new resources to reduce preparation work or develop other strategies such as the creation of new models to deliver this type of service.     

Genetic Counseling Practice in Next Generation Sequencing Research: Implications for the Ethical Oversight of the Informed Consent Process

The potential for next generation sequencing research (NGS) to generate individual genetic results could have implications for the informed consent process and the provision of genetic counseling. We undertook a content analysis of informed consent templates and guidelines produced by Canadian institutional review boards, purposively sampling documents used by researchers to obtain consent from participants in genetics studies. Our goal was to examine the extent to which the informed consent documents addressed genetic counseling and the return of individual genetic results. Our analysis reveals that the majority of informed consent documents did not mention genetic counseling while several did not mention the return of results. We found differences in the ways in which documents addressed availability of counseling, eligibility criteria for referral to a genetic counselor, genetic counselor involvement, provision of services to family members of participants and incidental findings. From an ethical standpoint, consent documents should provide appropriate information so that participants may make an informed decision about their participation in research. The need to ensure adequate counseling for study populations in an NGS research context will necessarily involve adapting values that underlie care in genetic counseling practice. If the interests of research participants are to be truly promoted, the drafting and review of informed consent documents should give proper due to genetic counseling.     

Markers of Successful Aging Among Vietnamese Refugee Women

This article describes several markers of successful aging for Vietnamese women. These studies suggest that feelings of control have important implications for life satisfaction and mental health of female Vietnamese refugees. Adequate satisfaction with social relationships is a key contributor to successful aging and mental health of elderly Vietnamese refugees who are female. The article concludes by discussing ways in which mental health and health care professionals can assist female elderly refugees cope with family crisis, adaptation, and acculturation issues because they are at the highest risk now and into the future. Key issues were: cultural values surrounding age and gender norms, differential rates of acculturation across generations in the family, cross-cultural differences in mental health and their therapeutic implications.     

Health Care Behaviours and Beliefs in Hasidic Jewish Populations: A Systematic Review of the Literature

Cultural issues impact on health care, including individuals’ health care behaviours and beliefs. Hasidic Jews, with their strict religious observance, emphasis on kabbalah, cultural insularity and spiritual leader, their Rebbe, comprise a distinct cultural group. The reviewed studies reveal that Hasidic Jews may seek spiritual healing and incorporate religion in their explanatory models of illness; illness attracts stigma; psychiatric patients’ symptomatology may have religious content; social and cultural factors may challenge health care delivery. The extant research has implications for clinical practice. However, many studies exhibited methodological shortcomings with authors providing incomplete analyses of the extent to which findings are authentically Hasidic. High-quality research is required to better inform the provision of culturally competent care to Hasidic patients.     

Investigating Inter-Christian and Intercultural Couples Associated with the Greek Orthodox Archdiocese of America: A Qualitative Research Project

This qualitative research project described individual, marital, and family challenges from the perspective of 376 intermarried respondents associated with the Greek Orthodox Archdiocese of America. Participants' observations generally suggested that their religious and cultural differences enriched their own and their family's well-being. However, some participants described pervasive and lingering unresolved couple disagreements linked to their religious and cultural differences. These differences seemed to have a decidedly negative impact on individual, couple, and family well-being. Clinical implications suggest that intermarried couples' different religious and cultural backgrounds may be interconnected to the presenting problem(s) of couples.     

Patient Satisfaction with Cancer Genetic Counseling: A Psychometric Analysis of the Genetic Counseling Satisfaction Scale

Satisfaction is an important patient reported outcome of genetic counseling, as it is one of the elements used by professional organizations and healthcare accrediting bodies to determine the quality of professional work. However, empirical research on patient satisfaction with genetic counseling has been limited, partly due to the lack of standardized measures available to assess this construct. The purpose of this study was to conduct a psychometric analysis of a new satisfaction measure, the Genetic Counseling Satisfaction Scale (GCSS), within a sample of women participating in a no-cost cancer genetic counseling and testing program. The sample consisted of 61 women undergoing counseling and testing for hereditary breast-ovarian cancer risk (BRCA1/2 testing) who completed the GCSS following pretest counseling. The results suggest that the GCSS was reliable (Cronbach's coefficient alpha = 0.90) and that participants were highly satisfied with the care they received. In addition, there were no differences in satisfaction between cancer genetic counseling and prenatal counseling participants (based on preexisting norms), and satisfaction did not vary by sociodemographic characteristics. Implications and recommendations are discussed.     

The value of believing in free will: encouraging a belief in determinism increases cheating

Does moral behavior draw on a belief in free will? Two experiments examined whether inducing participants to believe that human behavior is predetermined would encourage cheating. In Experiment 1, participants read either text that encouraged a belief in determinism (i.e., that portrayed behavior as the consequence of environmental and genetic factors) or neutral text. Exposure to the deterministic message increased cheating on a task in which participants could passively allow a flawed computer program to reveal answers to mathematical problems that they had been instructed to solve themselves. Moreover, increased cheating behavior was mediated by decreased belief in free will. In Experiment 2, participants who read deterministic statements cheated by overpaying themselves for performance on a cognitive task; participants who read statements endorsing free will did not. These findings suggest that the debate over free will has societal, as well as scientific and theoretical, implications.     

Cultural Identity and the Expression of Depression: A Social Identity Perspective

The present research interrogates the greater tendency for Chinese people to somaticize depression relative to Westerners. Drawing from a social identity perspective, three studies were conducted examining the role that cultural norms play in symptom expression. In an initial study, we confirmed greater somatization, minimization of distress and suppression of emotional expression among Chinese participants compared with Australians (Study 1). Asian normative expectations of collectivism moderated these effects such that somatization was higher among those who endorsed collectivism norms, but only among Chinese participants. Studies 2a and 2b found that only when Asian participants identified strongly with Asian culture did collectivism norms predict somatic symptoms. These findings have implications for practitioners working with people from Asian cultures, highlighting that it is not culture per se, but the endorsement of normative expectations in the context of strong identification with cultural groups that predicts which symptoms of depression are emphasized. Copyright © 2016 John Wiley & Sons, Ltd.     

To grandmother's house we go? Around the bend on the “mommy track”

This paper focuses on caregiving issues and their salience for women as the primary providers of care to elderly relatives. Assignment to caregiving roles on the basis of gender reflects cultural values and has important social, psychological, and economic implications. Advances in biomedical technology are changing the nature and duration of women's traditional responsibilities for elder care, and present trends suggest that long-term care concerns will continue to gain in prominence as the American population ages. Socialization processes and demographic factors impose greater caregiving burdens on women than on men. A resurgence of interest in family responsibility for elder care, arising out of growing public concern over rapidly rising costs, also affects women disproportionately. The greatest danger is that serial caregiving will compound and reinforce women's current disadvantages in the labor market. Policies that move toward more equitable distribution of caregiving burdens are clearly overdue.     

Grandmothers as Gems of Genetic Wisdom: Exploring South African Traditional Beliefs About the Causes of Childhood Genetic Disorders

With its diverse cultural and linguistic profile, South Africa provides a unique context to explore contextual influences on the process of genetic counseling. Prior research suggests intergenerational differences regarding models of causation which influence treatment-seeking paths. This pilot study therefore aimed to explore South African traditional beliefs regarding common childhood genetic disorders. Three focus groups were conducted with fifteen grandmothers from different cultural backgrounds in an urban community. Questions pertained to the role of the grandmother, traditional beliefs regarding causes of genetic disorders, explanations of heredity, and prevention and management of genetic disorders. Results indicate a variety of cultural explanations for causes of childhood genetic disorders. These causes can be classified into categories related to lifestyle, behavior, social issues, culture, religion, genetic, and familial causes. Prevention and treatment issues are also highlighted. These findings have implications for genetic counseling practice, which needs to include a greater focus on cultural issues.     

Genetic Counselling for Psychiatric Disorders: Accounts of Psychiatric Health Professionals in the United Kingdom

Genetic counselling is not routinely offered for psychiatric disorders in the United Kingdom through NHS regional clinical genetics departments. However, recent genomic advances, confirming a genetic contribution to mental illness, are anticipated to increase demand for psychiatric genetic counselling. This is the first study of its kind to employ qualitative methods of research to explore accounts of psychiatric health professionals regarding the prospects for genetic counselling services within clinical psychiatry in the UK. Data were collected from 32 questionnaire participants, and 9 subsequent interviewees. Data analysis revealed that although participants had not encountered patients explicitly demanding psychiatric genetic counselling, psychiatric health professionals believe that such a service would be useful and desirable. Genomic advances may have significant implications for genetic counselling in clinical psychiatry even if these discoveries do not lead to genetic testing. Psychiatric health professionals describe clinical genetics as a skilled profession capable of combining complex risk communication with much needed psychosocial support. However, participants noted barriers to the implementation of psychiatric genetic counselling services including, but not limited to, the complexities of uncertainty in psychiatric diagnoses, patient engagement and ethical concerns regarding limited capacity.     

Development and Pilot Testing of a Decision Aid for Genomic Research Participants Notified of Clinically Actionable Research Findings for Cancer Risk

Germline genomic testing is increasingly used in research to identify genetic causes of disease, including cancer. However, there is evidence that individuals who are notified of clinically actionable research findings have difficulty making informed decisions regarding uptake of genetic counseling for these findings. This study aimed to produce and pilot test a decision aid to assist participants in genomic research studies who are notified of clinically actionable research findings to make informed choices regarding uptake of genetic counseling. Development was guided by published literature, the International Patient Decision Aid Standards, and the expertise of a steering committee of clinicians, researchers, and consumers. Decision aid acceptability was assessed by self-report questionnaire. All 19 participants stated that the decision aid was easy to read, clearly presented, increased their understanding of the implications of taking up research findings, and would be helpful in decision-making. While low to moderate levels of distress/worry were reported after reading the booklet, a majority of participants also reported feeling reassured. All participants would recommend the booklet to others considering uptake of clinically actionable research findings. Results indicate the decision aid is acceptable to the target audience, with potential as a useful decision support tool for genomic research participants.     

Nigerian Clergy and healthcare professionals’ perceptions of health-seeking behaviours among Nigerian immigrants in the UK

The diversity in patient populations due to immigration in the UK has implications for adequate understanding of a patients’ culture by the clinician as well as patient–clinician cultural matching for enhanced service use and outcome. This qualitative study investigated how Nigerian clergy and health professionals perceived health-seeking behaviours among Nigerians in the UK, while considering the impact of their own beliefs and values as care providers. Six participants were interviewed (clergy, n?=?2; health professionals, n?=?4). Data were analysed using Interpretative Phenomenological Analysis. Results showed that the clergy and health professionals themselves use religious/cultural cure and formal healthcare methods, and believed Nigerian immigrants as predominantly using religious/cultural methods which can affect healthcare utilisation, although differences between the professionals were reported. The potentials for integrating other cure methods into the formal healthcare services were considered, while highlighting the challenges that may arise from such collaborative effort.     

Client perspectives on counselling: Before,during and after

This four‐year study investigated the under‐researched area of first‐time users’ perceptions of counselling and how these evolved over time. Research participants were drawn from six settings within university counselling services, the voluntary sector and primary care. Using an interpretive hermeneutic framework based on thematic analysis, 30 interviews were carried out. Results revealed that before counselling, participants were uncertain about the nature of counselling and what to expect, described stigma associated with peer influence and varying levels of confusion about specialist language. During counselling, participants experienced some level of positive change. At the same time, divergences of counsellor and client perception highlighted theoretical issues concerning counsellor approach and the exploration of emotions. Post‐counselling interviews revealed further positive change, and practical issues with implications for counsellor training and practice in terms of client assessment, preparation for counselling and the influence of cultural assumptions on theory and practice.     

Cultural Considerations for Psychologists in Primary Care

Many health concerns in the United States (e.g., diabetes) are routinely managed in primary care settings. Regardless of the medical condition, patients’ health is directly influenced by factors such as healthcare providers and cultural background. Training related to how behaviors influence health, coupled with training on how cultural diversity intersects with mental health, allows psychologists to have the relevant expertise to assist in the development of primary care behavioral health interventions. However, many psychologists in primary care struggle with how to integrate a culture-centered paradigm into their roles as behavioral health providers. This paper provides an introduction on how three culture-centered concepts (providers’ cultural sensitivity, patient–provider cultural congruency, and patients’ health literacy) can be applied in primary care using the Five A’s Organizational Construct and a model of cultural competence. In addition, the paper includes a section on integration of cultural considerations into consultation and training and concludes with a discussion of how the three culture-centered concepts have implications for health equity.     

Knowledge of and Interest in Genetic Results Among Parkinson Disease Patients and Caregivers

The purpose of the study is to investigate Parkinson disease (PD) patients’ and caregivers’ knowledge of and interest in genetic testing. Gaucher disease (GD) results from recessive mutations in glucocerebrosidase (GBA). Both heterozygote GBA carriers and GD patients are at greater risk for PD. Studies regarding knowledge of and interest in genetic testing have been limited and have not offered genetic results to participants. In this study, 353 PD patients and 180 caregivers were recruited to a PD genetic study. The association between GD, GBA mutations and PD was described to participants who reported their familiarity with genetic terms, answered questions on genetic concepts, and indicated their interest in knowing if they may have GD (two GBA mutations) and other genetic information that could impact their health. Ninety-three-percent of participants were interested in receiving GBA results; however, only 51.6 % of PD participants and 55.6 % of caregivers knew that “scientists have identified genes associated with a higher risk of developing PD.” PD patients may benefit from education and genetic counseling on the implications of genetic testing.