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Workplace wellness programs are an emerging avenue for health-related genetic testing, with some large employers now offering such testing to employees. Employees' knowledge and concerns regarding genetic discrimination may impact their decision-making about and uptake of workplace genetic testing (wGT). This study describes employed adults' objective knowledge of the Genetic Information Nondiscrimination Act (GINA) and evaluates how this knowledge correlates with attitudes and beliefs regarding wGT. Analyses utilized data from a large, national web-based survey of employed adults (N = 2000; mean age = 43 years; 51% female; 55.2% college educated). Overall, most respondents (57.3%) said they were unaware of any laws protecting against genetic discrimination. Specifically, 62.6% indicated they were not at all familiar with GINA. The primary study outcome was respondents' score on a 13-item measure assessing knowledge of basic facts about GINA. Participants had low overall GINA knowledge (M = 4.6/13 items correct (35%), SD = 2.9), with employees often presuming GINA offers greater legal protections than it does (e.g., 45.3% erroneously endorsed that GINA protected against discrimination in life insurance). Logistic regression analyses assessed associations between GINA knowledge and employees' demographic characteristics, prior experience with genetic testing, and attitudes regarding wGT. Variables significantly associated with GINA knowledge included higher interest in wGT (aOR = 1.45; 95% CI: 1.20, 1.77), self-reported familiarity with GINA (aOR = 2.02; 95% CI: 1.64, 2.50), and favorable attitudes toward wGT (aOR = 1.92; 95% CI: 1.52, 2.44). Results indicate public knowledge of GINA remains low over 15 years after its passage. These findings highlight the need for employee education on GINA before participating in wGT, as well as broader public education on GINA's legal protections and limitations. Genetic counselors lead GINA education efforts in clinical and public settings and can play a pivotal role in ongoing public education initiatives about GINA.
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PURPOSE: This study explored employee health behavior changes and health care utilization after workplace genetic testing (wGT). Wellness-program-associated wGT seeks to improve employee health, but the related health implications are unknown. METHODS: Employees of a large US health care system offering wGT (cancer, heart disease, and pharmacogenomics [PGx]) were sent electronic surveys. Self-reported data from those who received test results were analyzed. Descriptive statistics characterized responses, whereas logistic regression analyses explored correlates of responses to wGT. RESULTS: 53.9% (n = 418/776) of respondents (88.3% female, mean age = 44 years) reported receiving wGT results. 12.0% (n = 48/399) received results indicating increased risk (IR) of cancer, 9.5% (n = 38/398) had IR of heart disease, and 31.4% (n = 125/398) received informative PGx results. IR results for cancer and/or heart disease (n = 67) were associated with health behavior changes (adjusted odds ratio: 3.23; 95% CI 1.75, 6.13; P < .001) and health care utilization (adjusted odds ratio: 8.60; 95% CI 4.43, 17.5; P < .001). Informative PGx results (n = 125) were associated with medication changes (PGx-informative: 15.2%; PGx-uninformative: 4.8%; P = .002). CONCLUSION: This study explored employee responses to wGT, contributing to the understanding of the ethical and social implications of wGT. Receiving IR results from wGT may promote health behavior changes and health care utilization in employees.
Subject(s)
Genetic Testing , Health Behavior , Workplace , Humans , Female , Male , Adult , Middle Aged , United States , Patient Acceptance of Health Care/statistics & numerical data , Neoplasms/genetics , Surveys and Questionnaires , Delivery of Health Care , Heart Diseases/geneticsABSTRACT
BACKGROUND: The recent World Health Organization (WHO) blueprint for dementia research and Lancet Commission on ending stigma and discrimination in mental health has identified a gap around dementia-related measures of stigma and discrimination that can be used in different cultural, language and regional contexts. AIMS: We aimed to characterise experiences of discrimination, and report initial psychometric properties of a new tool to capture these experiences, among a global sample of people living with dementia. METHOD: We analysed data from 704 people living with dementia who took part in a global survey from 33 different countries and territories. Psychometric properties were examined, including internal consistency and construct validity. RESULTS: A total of 83% of participants reported discrimination in one or more areas of life, and this was similar across WHO Regions. The exploratory factor analysis factor loadings and scree plot supported a unidimensional structure for the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia). The instrument demonstrated excellent internal consistency, with most of the construct validity hypotheses being confirmed and qualitative responses demonstrating face validity. CONCLUSIONS: Our analyses suggest that the DISCUS-Dementia performs well with a global sample of people living with dementia. This scale can be integrated into large-scale studies to understand factors associated with stigma and discrimination. It can also provide an opportunity for a structured discussion around stigma and discrimination experiences important to people living with dementia, as well as planning psychosocial services and initiatives to reduce stigma and discrimination.
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Self-stigma has been associated with reduced accuracy of face emotion recognition in individuals at clinical high risk for psychosis (CHR). Stigma may also relate to slowing of performance during cognitive tasks for which a negative stereotype is relevant. This study aimed to investigate the association of mental illness stigma with face emotion recognition among CHR individuals. Participants were 143 CHR individuals identified using the Structured Interview for Psychosis-Risk Syndromes (SIPS). Face emotion recognition was assessed using the Penn Emotion Recognition Task (ER-40). Stigma was assessed using discrimination, stereotype awareness, and stereotype agreement subscales of the Mental Health Attitudes Interview for CHR. We tested associations of ER-40 accuracy and response times with these stigma variables, including the role of clinical and demographic factors. Racial/ethnic minoritized participants had higher attenuated positive symptoms than non-minoritized participants. Longer ER-40 response times were correlated with greater stereotype agreement (r=.17, p=.045) and discrimination (r=.22, p=.012). A regression model predicting ER-40 response times revealed an interaction of stereotype agreement with minoritized status (p=.008), with slower response times for minoritized participants as stereotype agreement increased. Greater disorganized symptoms and male gender also predicted longer response times. ER-40 accuracy was not associated with stigma. Overall, minoritized CHR individuals with greater internalized stigma took longer to identify face emotions. Future research is needed to assess whether slower response times are specific to social cues, and if internalized stigma interferes with performance in real-world social situations. Reducing stigma may be an important target for interventions that aim to improve social skills.
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OBJECTIVE: Stigma jeopardizes recovery and successful implementation of mental health services (MHS) globally. Despite cultural variation in how stigma manifests, few studies have examined how culture fundamentally impacts the concept of "personhood" in Latin America. Chile has expanded MHS, providing universal coverage for evaluation and treatment of first episode psychosis (FEP). We applied the "what matters most" (WMM) framework of stigma to identify culturally salient factors that shape or protect against stigma in urban Chile, identifying potential implications for MHS and recovery. METHODS: In-depth interviews (n = 48) were conducted with MHS users with psychotic disorders (n = 18), their family members (n = 15), and community members (n = 15), from two urban regions in Chile. Interviews were coded and analyzed to identify WMM, how WMM shapes stigma, and how MHS can influence achieving WMM. RESULTS: Traditional values emphasizing physical/social appearance, gender roles, family, and social connectedness are highly valued. Socioeconomic transitions have engendered capitalistic variations on traditional values, with increasing emphasis on professional careers for men and women, individualism, and independence. Psychotic disorders interfere with fulfillment of both traditional and capitalist values, thereby reinforcing stigma. However, MHS are seen as partially effective in enabling fulfillment of some goals, including employment, appearance, and independence, while often remaining insufficient in enabling capacity to achieve marriage and having a family. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: MHS that facilitate recovery by engaging users in services, such as pharmacotherapy, education/vocational rehabilitation, and family-centered care aligned with cultural values can mitigate stigma and facilitate recovery by enabling users to fulfill WMM. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
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Mental Health Services , Psychotic Disorders , Male , Humans , Female , Chile , Psychotic Disorders/therapy , Social Stigma , Rehabilitation, VocationalABSTRACT
OBJECTIVE: Despite the appeal of early intervention in psychosis, there is concern that identifying youth as having high psychosis risk (PR) may trigger stigma. This study employed a pre-post design to measure change in PR participants' emotions about PR upon being told of their PR status and according to whether this was the first time receiving this information. METHODS: Participants (n = 54) identified as at PR via structured interview rated their emotions about PR before and after being told they were at PR. Qualitative analyses explored the valence of participant reflections on being given this information. RESULTS: Participants reported significantly less negative emotion after being told of their PR status (p < .001), regardless of whether they were hearing this for the first time (p = .72). There was no change in positive emotions or the predominant belief that they should keep their PR status private. Most participants commented positively about the process of feedback but negatively about its impact on their self-perceptions and/or expectations of others' perceptions of them. CONCLUSION: This is the first study to collect pre-post data related to being told one is at PR and to examine quantitative and qualitative responses across and within individuals. For a majority of participants, clinical feedback stimulated negative stereotypes even as it relieved some distress. To actively address internalized stigma, clinicians providing feedback to PR youth must attend to the positive and negative impacts on how youth think about themselves as well as how they feel.
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Psychotic Disorders , Social Stigma , Adolescent , Emotions , Humans , Psychotic Disorders/psychology , Self ConceptABSTRACT
BACKGROUND: Few studies provide clear rationale for and the reception of adaptations of evidence-based interventions. To address this gap, we describe the context-dependent adaptations in critical time intervention-task shifting (CTI-TS), a manualized recovery program for individuals with psychosis in Rio de Janeiro, Brazil and Santiago, Chile. Implications of the adaptations - incorporating a task-shifting approach and modifying the mode of community-based service delivery - are examined from users' perspectives. METHODS: A secondary analysis of in-depth interviews with CTI-TS users (n = 9 in Brazil; n = 15 in Chile) was conducted. Using the framework method, we thematically compared how participants from each site perceived the main adapted components of CTI-TS. RESULTS: Users of both sites appreciated the task-shifting worker pair to provide personalized, flexible, and relatable support. They wanted CTI-TS to be longer and experienced difficulty maintaining intervention benefits in the long-term. In Chile, stigma and a perceived professional hierarchy toward the task-shifting providers were more profound than in Brazil. Engagement with community-based services delivery in homes and neighborhoods (Chile), and at community mental health centers (Brazil) were influenced by various personal, familial, financial, and social factors. Uniquely, community violence was a significant barrier to engagement in Brazil. CONCLUSION: CTI-TS' major adaptations were informed by the distinct mental health systems and social context of Santiago and Rio. Evaluation of user experiences with these adaptations provides insights into implementing and scaling-up task-shifting and community-oriented interventions in the region through the creation of specialized roles for the worker pair, targeting sustained intervention effects, and addressing socio-cultural barriers.
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ABSTRACT: Early intervention services (EIS; in the United States, Coordinated Specialty Care) can lead to substantial improvements in psychiatric symptoms and social functioning for individuals with first-episode psychosis who engage in treatment. Nevertheless, stigma associated with early intervention services can limit their full potential benefits by preventing or reducing participation. Drawing from Corrigan's "why try" model positing relationships between public and self-stigma, engagement in treatment services, and the EIS treatment model, this article proposes a framework that delineates how distinct forms of stigma are linked to given stages of treatment engagement in first-episode psychosis. We identify three phases of engagement: (1) community outreach, which has associations with public stigma; (2) the referral and evaluation process, which primarily has associations with self-stigma; and (3) EIS, which have associations with self-stigma and its psychosocial consequences. For each phase, we describe evidence-based strategies typically provided by EIS programs, using OnTrackNY as an exemplary model, to illustrate potential linkages in our conceptual framework. By specifying how distinct forms of stigma are associated with EIS treatment stages, this framework is intended to guide EIS programs in explicitly addressing stigma to optimize recovery of individuals with first-episode psychosis.
Subject(s)
Early Medical Intervention , Psychotic Disorders , Humans , Psychotic Disorders/therapy , Referral and Consultation , Social Stigma , United StatesABSTRACT
AIM: Fuelled by genomics advances, recent emphasis on the concept of "precision medicine," and public optimism towards genetic advances, it is important to understand how those who are considered to be at clinical high-risk for psychosis (CHR) perceive possible benefits of genetic testing to inform future stakeholder education efforts. METHODS: Semistructured interviews were completed with 20 participants who met CHR criteria. Coding for genetic optimism was completed. RESULTS: Participants endorsed many conceptualizations of the link between genetics, the development of psychosis, and the benefits of genetic testing. Specifically, themes emerged surrounding how genetic testing may lead to greater genetic knowledge and tailored treatment. CONCLUSIONS: Our results demonstrate that CHR participants generally endorse several precision psychiatry concepts, including how genetic testing may lead to tailored treatment advances. This knowledge may aid development of best communication practices regarding forthcoming genetic advances in diagnosis and treatment among CHR.
Subject(s)
Psychiatry , Psychotic Disorders , Genetic Testing , Humans , Optimism , Psychotic Disorders/diagnosis , Psychotic Disorders/geneticsABSTRACT
As the most common form of senile dementia, Alzheimer's disease (AD) is accompanied by a great deal of uncertainty which can lead to fear and stigma for those identified with this devastating disease. As the AD definition evolves from a syndromal to a biological construct, and early diagnoses becomes more commonplace, more confusion and stigma may result. We conducted a narrative review of the literature on AD stigma to consolidate information on this body of research. From the perspective of several stigma theories, we identified relevant studies to inform our understanding of the way in which implementation of the new framework for a biological based AD diagnosis may have resulted in new and emerging stigma. Herein, we discuss the emergence of new AD stigma as our understanding of the definition of the disease changes. We further propose recommendations for future research to reduce the stigma associated with AD.