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Latinos face health disparities in Alzheimer's disease (AD), with high disease prevalence relative to non-Latino whites and barriers to healthcare access. Several studies have found misconceptions about AD among Latinos that were linked to reduced preventative or help-seeking behavior. To improve understanding of illness perceptions among Latinos, we examined beliefs about the causes of AD, one of the five dimensions of illness representations from Leventhal's Self-Regulation Theory, among a sample of N = 216 Latinos. We conducted in-depth, semi-structured interviews with participants aged 40 to 64 (average age 53 years) living in northern Manhattan. Seven distinct causes of AD were identified, though participants demonstrated a general understanding of AD as a multifactorial disease. Genetics was found to be the most endorsed cause of AD, followed by unhealthy lifestyle factors. Most Latinos who believed psychosocial factors played a critical role in AD development were first-generation immigrants. No participants attributed AD to a normal process of aging, and few ascribed the disease to brain damage from stroke or head injuries. Several participants expressed the belief that environmental contaminants can cause AD, which has received little mention in prior studies. Though only a small number thought AD could occur by chance, most participants remained uncertain about the exact causes of the disease and used lay knowledge to explain their beliefs. Our findings help identify areas where educational interventions would be beneficial in improving community knowledge and offer perspectives that can foster cultural competency in healthcare.
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Some men who have sex with men (MSM) engage in the exchange of sexual services for money, drugs, shelter or something else of value. There has been limited research examining the factors that influence how male sex workers (MSWs) determine their fees for their services. To learn more about this, qualitative interview data were analyzed from 180 MSM from 8 US cities who had recently engaged in exchange sex with clients they had primarily met through dating/hookup websites and apps. The primary factor that affected participants' fees was the type of services provided, with a higher price generally charged for anal sex than for oral sex, mutual masturbation or massage. Condomless anal sex, in particular, commanded a higher fee. Additionally, participants required more money for special kinks or fetishes or any services that they considered to be risky, demanding or physically or emotionally uncomfortable. Other factors that affected how much participants charged for a given encounter included the duration of the meeting, the level of client appeal, the perceived wealth of the client, and the participant's current financial situation. Participants varied in their approaches to fee setting, in terms of both their degree of flexibility when negotiating a price and whether they preferred to suggest a fee or have the client first state an amount they were willing to pay. Information about MSWs' approaches to fee setting provides greater understanding of their lived experiences and the risks they may accept for higher fees.
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A notable portion of men who have sex with men engage in exchange sex-i.e. the trading of sex for money, drugs, shelter or other material goods. Despite the risks for physical and sexual violence, threatening behaviour and robbery that male sex workers confront, very little is known about their experiences of such actions by clients. To gain more insight into male sex workers' experiences of interpersonal violence, we analysed qualitative interview data from 180 men who have sex with men from 8 US cities who engaged in sex work with clients they had met primarily through dating/hookup websites and apps. Participants discussed their experiences of a range of untoward behaviours by clients including physical violence, sexual violence, threats and robbery. Healthcare and social services providers can play a significant role in violence prevention among male sex workers. The decriminalisation of sex work could also potentially reduce the risks many sex workers face by facilitating their reporting of harms suffered.
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Infecções por HIV , Profissionais do Sexo , Minorias Sexuais e de Gênero , Masculino , Humanos , Infecções por HIV/prevenção & controle , Homossexualidade Masculina , Violência/prevenção & controleRESUMO
Among men who have sex with men (MSM), those who also engage in the exchange of sex for money, drugs, shelter or other material goods (i.e., male sex workers-MSWs) have been found to have higher rates of condomless anal sex (CAS), HIV, and STIs than MSM who do not engage in exchange sex. To gain a better understanding of the factors that influence MSWs' engagement in CAS with male clients, we analyzed qualitative interview data from a diverse sample of 141 MSWs from 8 U.S. cities who met clients primarily through hookup or dating apps/websites and who reported having condomless anal sex with at least one of their exchange sex partners in the prior three months. While high client demand and financial incentives were the most frequently mentioned reasons for engaging in CAS with clients, other factors including drug and alcohol use, attraction to the client, the heat of the moment, concerns about sexual performance, and reliance on pre-exposure prophylaxis (PrEP) were also important. Participants who engaged in CAS generally felt that due to client characteristics or mitigating steps they had taken themselves, their chance of acquiring HIV/STIs was acceptably low. Hookup or dating apps/websites have provided an additional and increasingly popular venue for exchange sex to be arranged. These platforms also offer an opportunity for HIV/STI prevention through interventions and tailored messages delivered through these venues that address the motivations, misconceptions and/or situational factors that may lead to CAS.
RESUMEN: Entre los hombres que tienen relaciones sexuales con hombres (HSH), se ha encontrado que aquellos que también participan en el intercambio de sexo por dinero, drogas, vivienda u otros bienes materiales (es decir, hombres trabajadores sexuales-HTS) tienen tasas más altas de sexo anal sin condón (SASC), VIH y ETS que los HSH que no participan en relaciones sexuales de intercambio. Para obtener una mejor comprensión de los factores que influyen en la participación de los HTS en SASC con clientes masculinos, analizamos los datos de entrevistas cualitativas de una muestra diversa de 141 HTS de 8 ciudades de EE. UU. que conocieron a los clientes principalmente a través de aplicaciones/sitios web de conexión o citas y que informaron haber tenido sexo anal sin condón con al menos una de sus parejas sexuales de intercambio en los tres meses anteriores. Mientras la alta demanda de los clientes y los incentivos financieros fueron las razones mencionadas con mayor frecuencia para participar en SASC con los clientes, otros factores como el uso de drogas y alcohol, la atracción hacia el cliente, la seducción del momento, las preocupaciones sobre el desempeño sexual y la dependencia de la profilaxis preexposición (PrEP) también fueron importantes. Los participantes que tomaron parte en SASC generalmente sintieron que debido a las características del cliente o a los pasos de mitigación que habían tomado ellos mismos, su probabilidad de contraer VIH / ETS era aceptablemente baja. Las aplicaciones/sitios web de conexión o citas han proporcionado un lugar adicional y cada vez más popular para organizar el intercambio de sexo. Estas plataformas también ofrecen una oportunidad para la prevención del VIH/ETS a través de intervenciones y mensajes personalizados que se transmiten a través de estos lugares y que abordan las motivaciones, los conceptos erróneos y/o los factores situacionales que pueden conducir a SASC.
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Infecções por HIV , Profilaxia Pré-Exposição , Profissionais do Sexo , Minorias Sexuais e de Gênero , Infecções Sexualmente Transmissíveis , Masculino , Humanos , Homossexualidade Masculina , Infecções por HIV/epidemiologia , Infecções por HIV/prevenção & controle , Infecções Sexualmente Transmissíveis/epidemiologia , Infecções Sexualmente Transmissíveis/prevenção & controle , Parceiros Sexuais , Comportamento SexualRESUMO
Men who have sex with men (MSM) and engage in sex work (MSW) frequently meet clients through dating/hookup apps. This provides an opportunity to discuss the parameters of the exchange prior to meeting and to learn things about the prospective client and the risks he might pose. Limited research has examined the specific issues or topics MSWs discuss with clients before agreeing to meet. We analyzed interview data from a sample of 180 MSWs from eight U.S. cities who engaged in exchange sex with clients they had primarily met through dating/hookup apps and websites. Participants typically asked about clients' sexual interests and expectations regarding what will transpire when they meet to make sure they were compatible with their own boundaries and limitations. Most participants inquired about clients' sexual health and often discussed condom use. Assertiveness and communication skills training might help MSWs negotiate encounters with clients that promote health and safety.
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Infecções por HIV , Profissionais do Sexo , Minorias Sexuais e de Gênero , Humanos , Masculino , Homossexualidade Masculina , Infecções por HIV/prevenção & controle , Promoção da Saúde , Estudos Prospectivos , Preservativos , Comportamento SexualRESUMO
Gay, bisexual, and other men who have sex with men (GBMSM) often use GPS-enabled dating apps and websites to facilitate in-person sexual encounters. Many of these encounters are positive and enjoyable. However, there is limited research on GBMSM's negative experiences with partners from hookup and dating apps/websites, especially those characterized by threats to GBMSM's sexual, physical, and/or psychological safety. In this report, we investigated this matter. We analyzed data from interviews with GBMSM (N = 60) and identified four categories of negative sexual experiences, each of which were comprised by sub-categories: 1) sexual violence (physical sexual assault, verbal sexual coercion, intoxicated assault/coercion), 2) sexual health risk behaviors (condom use resistance and coercion, deception related to HIV/STI status), 3) non-negotiated behaviors (undiscussed/unexpected sex acts, rough sex, sexualized racism, undesired substance use by the partner), and 4) threats to physical safety beyond sexual violence (being blocked from leaving, stalked, robbed, drugged). These results can inform future research and interventions that aim to promote safety on dating apps/websites within the GBMSM community.
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Since it was established that HIV-positive individuals who maintain an undetectable viral load are unable to sexually transmit HIV (U=U), treatment as prevention (TasP) has become an important biomedical HIV prevention option. Many have remained optimistic that TasP, combined with pre-exposure prophylaxis (PrEP), will help close the "viral divide" between those living with and without HIV. This qualitative interview study of 62 sexual and gender minority (SGM) individuals of mixed serostatuses explored community perspectives regarding TasP, including the meaning of undetectability and how U=U impacts understandings of serodifference. Five key themes emerged from interviews: (1) undetectable does not equal HIV-negative, (2) PrEP is more promoted than TasP, (3) TasP increases openness to serodifferent sex, (4) rejection of TasP absolutism, and (5) the importance of layering prevention strategies. These findings suggest that while TasP is helping to bridge the viral divide, serostatus distinctions remain prevalent and important to many SGM individuals.
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Infecções por HIV , Profilaxia Pré-Exposição , Minorias Sexuais e de Gênero , Masculino , Humanos , Homossexualidade Masculina , Infecções por HIV/prevenção & controle , Comportamento Sexual , Pesquisa QualitativaRESUMO
BACKGROUND: People with substance use disorders are vulnerable to acquiring HIV. Testing is fundamental to diagnosis, treatment, and prevention; however, in the past decade, there has been a decline in the number of substance use disorder (SUD) treatment programs offering on-site HIV testing. Fewer than half of SUDs in the USA offer on-site HIV testing. In addition, nearly a quarter of newly diagnosed cases have AIDS at the time of diagnosis. Lack of testing is one of the main reasons that annual HIV incidences have remained constant over time. Integration of HIV testing with testing for HCV, an infection prevalent among persons vulnerable to HIV infection, and in settings where they receive health services, including opioid treatment programs (OTPs), is of great public health importance. METHODS/DESIGN: In this 3-arm cluster-RCT of opioid use disorders treatment programs, we test the effect of two evidence-based "practice coaching" (PC) interventions on the provision and sustained implementation of on-site HIV testing, on-site HIV/HCV testing, and linkage to care. Using the National Survey of Substance Abuse Treatment Services data available from SAMHSA, 51 sites are randomly assigned to one of the three conditions: practice coach facilitated structured conversations around implementing change, with provision of resources and documents to support the implementation of (1) HIV testing only, or (2) HIV/HCV testing, and (3) a control condition that provides a package with information only. We collect quantitative (e.g., HIV and HCV testing at 6-month-long intervals) and qualitative site data near the time of randomization, and again approximately 7-12 months after randomization. DISCUSSION: Innovative and comprehensive approaches that facilitate and promote the adoption and sustainability of HIV and HCV testing in opioid treatment programs are important for addressing and reducing HIV and HCV infection rates. This study is one of the first to test organizational approaches (practice coaching) to increase HIV and HIV/HCV testing and linkage to care among individuals receiving treatment for opioid use disorder. The study may provide valuable insight and knowledge on the multiple levels of intervention that, if integrated, may better position OTPs to improve and sustain testing practices and improve population health. TRIAL REGISTRATION: ClinicalTrials.gov NCT03135886. Registered on 2 May 2017.
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Infecções por HIV , Hepatite C , Tutoria , Transtornos Relacionados ao Uso de Opioides , Humanos , Analgésicos Opioides , Infecções por HIV/diagnóstico , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Teste de HIV , Hepatite C/diagnóstico , Hepatite C/tratamento farmacológico , Hepatite C/epidemiologia , Transtornos Relacionados ao Uso de Opioides/diagnóstico , Transtornos Relacionados ao Uso de Opioides/epidemiologia , Transtornos Relacionados ao Uso de Opioides/terapia , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
In the present study, we sought to better understand how MSM make decisions about HIV disclosure when using hook-up apps/websites and how these decisions relate to condom use during app/website-facilitated sexual encounters. Semi-structured interviews were conducted with 60 MSM (30% living with HIV) who had used hook-up apps and websites to meet sexual partners within the past three months. Results demonstrated a variety of approaches to HIV status disclosure. Some men reported usually discussing HIV status, but others discussed HIV status selectively (e.g., only when asked, when a relationship became more serious). Some men reported that listing one's status in a profile precluded the need to discuss it further. Others noted that leaving an HIV status blank "hinted" at their own or others' HIV positive or negative status. These approaches were closely linked to decisions about condom use. Many men reported serosorting based on inferences or assumptions about partners' HIV status. Together, results highlighted potential gaps in communication that can lead to faulty assumptions about HIV status and subsequent serodiscordant condomless sex and suggest that interventions that promote HIV status disclosure address these potential faulty assumptions.
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Background People with substance use disorders are vulnerable to acquiring HIV. Testing is fundamental to diagnosis, treatment, and prevention; however, in the past decade, there has been a decline in the number of substance use disorder (SUD) treatment programs offering on-site HIV testing. Fewer than half of SUDs in the United States offer on-site HIV testing. In addition, nearly a quarter of newly diagnosed cases have AIDS at the time of diagnosis. Lack of testing is one of the main reasons that annual HIV incidences have remained constant over time. Integration of HIV testing with testing for HCV, an infection prevalent among persons vulnerable to HIV infection, and in settings where they receive health services, including opioid treatment programs (OTPs), is of great public health importance. Methods/Design In this 3-arm cluster-RCT of opioid use disorders treatment programs, we test the effect of two evidence-based "practice coaching" (PC) interventions on: the provision and sustained implementation of on-site HIV testing, on-site HIV/HCV testing, and linkage to care. Using the National Survey of Substance Abuse Treatment Services data available from SAMHSA, 51 sites are randomly assigned to one of the three conditions: practice coach facilitated structured conversations around implementing change, with provision of resources and documents to support the implementation of (1) HIV testing only, or (2) HIV/HCV testing, and (3) a control condition that provides a package with information only. We collect quantitative (e,g., HIV and HCV testing at six-month-long intervals) and qualitative site data near the time of randomization, and again approximately 7-12 months after randomization. Discussion Innovative and comprehensive approaches that facilitate and promote the adoption and sustainability of HIV and HCV testing in opioid treatment programs are important for addressing and reducing HIV and HCV infection rates. This study is one of the first to test organizational approaches (practice coaching) to increase HIV and HIV/HCV testing and linkage to care among individuals receiving treatment for opioid use disorder. The study may provide valuable insight and knowledge on the multiple levels of intervention that, if integrated, may better position OTPs to improve and sustain testing practices and improve population health. Trial registration ClinicalTrials.gov: NCT03135886. (02 05 2017).
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OBJECTIVE: Hispanics continue to face challenges when trying to access health care, including epilepsy care and genetic-related health care services. This study examined epilepsy genetic knowledge and beliefs in this historically underserved population. METHODS: Questionnaires were completed by 641 adults with epilepsy without identified cause, of whom 122 self-identified as Hispanic or Latino and 519 as non-Hispanic. Participants were asked about their views on the contribution of genetics to the cause of their epilepsy ("genetic attribution"), optimism for advancements in epilepsy genetic research ("genetic optimism"), basic genetic knowledge, and epilepsy-specific genetic knowledge. Generalized linear models were used to compare the two groups in the means of quantitative measures and percents answered correctly for individual genetic knowledge items. Analyses were adjusted for age, sex, education, religion, family history of epilepsy, and time since last seizure. RESULTS: Hispanics did not differ from non-Hispanics in genetic attribution, genetic optimism, or number of six basic genetic knowledge items answered correctly. The number of nine epilepsy-specific genetic knowledge items answered correctly was significantly lower for Hispanics than non-Hispanics (adjusted mean = 6.0 vs. 6.7, p < .001). After adjustment for education and other potential mediators, the proportion answered correctly was significantly lower for Hispanics than non-Hispanics for only two items related to family history and penetrance of epilepsy-related genes. Only 54% of Hispanics and 61% of non-Hispanics answered correctly that "If a person has epilepsy, his or her relatives have an increased chance of getting epilepsy." SIGNIFICANCE: Despite large differences in sociodemographic variables including education, most attitudes and beliefs about genetics were similar in Hispanics and non-Hispanics. Epilepsy-specific genetic knowledge was lower among Hispanics than non-Hispanics, and this difference was mostly mediated by differences in demographic variables. Genetic counseling should address key concepts related to epilepsy genetics to ensure they are well understood by both Hispanic and non-Hispanic patients.
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Epilepsia , Conhecimentos, Atitudes e Prática em Saúde , Hispânico ou Latino , Adulto , Feminino , Humanos , Masculino , Escolaridade , Epilepsia/epidemiologia , Epilepsia/genética , Hispânico ou Latino/genética , Hispânico ou Latino/estatística & dados numéricos , Inquéritos e Questionários , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Estados Unidos/epidemiologiaRESUMO
OBJECTIVE: We assessed the relationship of epilepsy illness perceptions to antiseizure medication (ASM) adherence. METHODS: Surveys were completed by 644 adult patients with epilepsy of unknown cause. We used the Morisky Medication Adherence Scale-8 (MMAS-8) to define "high" adherence (score = 8) and "low-medium" adherence (score < 8). We evaluated epilepsy illness perceptions using seven items from the Brief Illness Perception Questionnaire (BIPQ), each scored from 0-10, measuring participants' views of the overall effect of epilepsy on their lives, how long it would last, how much control they had over their epilepsy, the effectiveness of their treatment, level of concern about epilepsy, level of understanding of epilepsy, and emotional impact of epilepsy. We investigated the association of each BIPQ item with medication adherence using logistic regression models that controlled for potential confounders (age, race/ethnicity, income, and time since the last seizure). RESULTS: One hundred forty-nine patients (23%) gave responses indicating high adherence. In the adjusted models, for each 1-unit increase in participants' BIPQ item scores, the odds of high adherence increased by 17% for understanding of their epilepsy (OR = 1.17, 95% CI 1.07-1.27, p < 0.001), decreased by 11% for overall life impact of epilepsy (OR = 0.89, 95% CI 0.82-0.97, p = 0.01) and decreased by 6% for emotional impact of epilepsy (OR = 0.94, 95% CI 0.86-0.99, p = 0.03). No other illness perception was associated with high adherence. Depression, anxiety, and stigma mediated the inverse relationships of high adherence to the overall life impact of epilepsy and the emotional impact of epilepsy. These measures did not mediate the relationship of high adherence to the perceived understanding of epilepsy. CONCLUSION: These results indicate that a greater perceived understanding of epilepsy is independently associated with high ASM adherence. Programs aimed at improving patients' understanding of their epilepsy may help improve medication adherence.
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Epilepsia , Humanos , Adulto , Epilepsia/psicologia , Inquéritos e Questionários , Emoções , Ansiedade , Adesão à Medicação/psicologiaRESUMO
The discovery that people with an undetectable HIV viral load are unable to transmit the virus to sex partners (U = U) has ushered in a new era in HIV care. As a result of this discovery, treatment as prevention (TasP) has become a powerful tool toward ending the epidemic. However, despite its sound scientific basis, many communities affected by HIV face barriers toward adopting TasP as a complete HIV prevention strategy. In addition, most research to date has only focused on TasP in the context of committed monogamous partnerships. To identify barriers to TasP adoption among some of those most affected by HIV, we conducted in-depth qualitative interviews with 62 sexual and gender minority individuals of varying serostatuses. Participants were identified from the results of an online survey, where those who indicated at least some awareness of TasP were invited to partake in a follow-up interview. Interviews were thematically coded to identify emergent themes relating to TasP adoption. Seven primary barriers emerged from data analysis pertaining to TasP science, internalized beliefs about HIV safety, and interactional dynamics between partners: (1) unfamiliarity with TasP science, (2) perceived limitations of TasP science, (3) difficulty changing understanding of "safe sex," (4) unwillingness to rely on partners' reports of being undetectable, (5) persistent HIV stigma, (6) less difficulty finding serosimilar partners, and (7) difficulty incorporating TasP into casual encounters. Together, these barriers confirm the existing findings about TasP adoption, and extend the literature by identifying barriers beyond a lack of education and outside of monogamous contexts.
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Infecções por HIV , Minorias Sexuais e de Gênero , Masculino , Humanos , Estados Unidos/epidemiologia , Homossexualidade Masculina , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Infecções por HIV/prevenção & controle , Comportamento Sexual , Parceiros SexuaisRESUMO
A substantial minority of men who have sex with men (MSM) engage in the exchange of sex for money, drugs, shelter, or material goods. This work carries risks for violence, sexual assault, and other kinds of harm such as robbery and threatening behavior by clients. Yet limited research has focused on the strategies that male sex workers (MSWs) use to prevent or manage these risks. To gain more insights into this matter, we analyzed qualitative interview data from 180 MSM recruited from eight U.S. cities who engaged in sex work with clients they had primarily met through dating/hookup websites and apps. Participants described the strategies they used to manage risks of interpersonal violence, both prior to meeting their clients and at the time of their encounters. Many of the strategies used ahead of the encounter relied upon information and communication technologies, such as negotiating the parameters of the exchange encounter, screening clients, sharing information about the client and meeting place with others, identifying safe meeting locations, and gathering information from social networks about problematic clients. Strategies employed during the encounter included: receiving payment up front; being prepared to protect oneself with a weapon or self-defense techniques; staying alert and sober; and planning an exit route from the location. Technology-based interventions through dating/hookup apps could play an important role in providing resources and skill building for MSWs to help them protect themselves during sex work.
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Infecções por HIV , Profissionais do Sexo , Minorias Sexuais e de Gênero , Masculino , Humanos , Homossexualidade Masculina , Trabalho Sexual , Violência , Infecções por HIV/prevenção & controle , Comportamento SexualRESUMO
Introduction: The U=U (i.e., undetectable equals untransmittable) campaign is founded upon biomedical advancements that have positioned HIV as a manageable condition with effectively zero risk of transmission. In spite of these developments, attitudes of sexual and gender minority populations regarding the necessity of seropositive status disclosure remain unexamined. Methods: The current study analyzed qualitative data regarding the necessity of seropositive status disclosure from 62 sexual minority men as well as transgender and gender non-conforming individuals who have sex with men from 2020 to 2021. Results: The majority of participants believed disclosure to be necessary and invoked several social and structural factors that informed their attitudes. Participants cited HIV criminalization laws, the ethics of non-disclosure, and disclosure as a means of educating sex partners when appraising the necessity of disclosure. Participants also presented concerns regarding U=U efficacy and HIV stigma. Conclusions: Findings indicate that the disclosure of seropositive status to sex partners is still important to U=U-aware sexual and gender minority individuals. The majority of the study sample, irrespective of HIV status, believed seropositive status disclosure was necessary in advance of sex. Policy Implications: Findings suggest opportunities for public health messaging to remediate concerns about U=U efficacy, combat misinformation, and clarify out-of-date information on HIV criminalization.
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Introduction: Practicing sex work can present considerable risks to an individual's sexual health and overall well-being. Though resources tailored for sex workers can help mitigate such risks, little is known about male sex workers' interest in them. Methods: From 2018 to 2020, we conducted in-depth telephone interviews with 180 U.S. men who engaged in sex work with clients met online. We inquired about what sex work-related resources they were aware of or had used, the specific content of resources they would want, and whether they would use such resources or not. Results: Few participants had used sex work-related resources, but many had found material related to sex work through organizations and online media. While some participants expressed interest in resources to help make their engagement in sex work safer and more profitable, others were interested in resources that would help them address the conditions that had led them to sex work in the first place. Participants also discussed some barriers to resource utilization such as low perceived need, privacy concerns, and low credibility of the material. Conclusions & Policy Implications: Results show that there is substantial interest in sex work-related resources among men engaged in the practice. However, programs should carefully consider potential barriers to utilization when developing these resources.
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OBJECTIVE: This study addresses the contribution of genetics-related concerns to reduced childbearing among people with epilepsy. METHODS: Surveys were completed by 606 adult patients with epilepsy of unknown cause at our medical center. Poisson regression analysis was used to assess the relations of number of offspring to: (1) genetic attribution (GA: participants' belief that genetics was a cause of their epilepsy), assessed via a novel scale developed from four survey items (Cronbach's alpha = .89), (2) participants' estimates of epilepsy risk in the child of a parent with epilepsy (1%, 5%-10%, 25%, and 50%-100%), and (3) participants' reports of the influence on their reproductive decisions of "the chance of having a child with epilepsy" (none/weak/moderate, strong/very strong). Analyses were adjusted for age, education, race/ethnicity, religion, type of epilepsy (generalized, focal, and both/unclassifiable), and age at epilepsy onset (<10, 10-19, and ≥20 years). RESULTS: Among participants 18-45 years of age, the number of offspring decreased significantly with increasing GA (highest vs lowest GA quartile rate ratio [RR] = .5, p < .001), and increasing estimated epilepsy risk in offspring (with 5%-10% as referent because it is closest to the true value, RR for 25%: .7, p = .05; RR for 50%-100%: .6, p = .03). Number of offspring was not related to the reported influence of "the chance of having a child with epilepsy" on reproductive decisions. Among participants >45 years of age, the number of offspring did not differ significantly according to GA quartile or estimated offspring epilepsy risk. However, those reporting a strong/very strong influence on their reproductive decisions of "the chance of having a child with epilepsy" had only 60% as many offspring as others. SIGNIFICANCE: These findings suggest that overestimating the risk of epilepsy in offspring can have important consequences for people with epilepsy. Patient and provider education about recurrence risks and genetic testing options to clarify risks are critical, given their potential influence on reproductive decisions.
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Epilepsia , Adulto , Criança , Epilepsia/genética , Testes Genéticos , Humanos , Reprodução/genética , Percepção Social , Inquéritos e QuestionáriosRESUMO
Technological advances like the Internet and Internet-enabled devices, such as smartphones, and the dating and hookup websites and apps available to the users of them, have transformed the nature, organization, and practice of sex work in fundamental ways. Some scholars have argued that these changes have contributed to a normalization of male exchange sex (i.e., providing sex in exchange for money, drugs, shelter, or goods), and in so doing, have diminished the stigma historically associated with it. However, little empirical research has focused on how male sex workers (MSWs), including those engaged in what might be called informal or incidental or casual sex work and primarily use dating/hookup websites and apps not designed for commercial to meet clients experience and manage stigma. To help fill this gap, we analyzed interview data from 180 MSWs who engaged in exchange sex and met their client on dating/hookup websites and apps. Most participants felt that sex work was still highly stigmatized in society at large, but many also felt it was generally accepted-if not completely normalized-within the gay community. Nevertheless, many struggled with the emotional impact of engaging in a stigmatized practice and most employed one or more of the following stigma management strategies: information management, distancing, discrediting the discreditors, asserting no other option existed, and challenging or reframing stereotypes and narratives. These findings indicate that MSWs, even those engaged in informal or incidental sex work, who meet clients on dating/hookup websites and apps are still strongly affected by sex work-related stigma and seek to manage it in various ways. Future research should investigate the sources of internalized stigma among this under-studied population of sex workers.
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Profissionais do Sexo , Homossexualidade Masculina/psicologia , Humanos , Masculino , Trabalho Sexual , Smartphone , Estigma SocialRESUMO
PURPOSE: The knowledge used to classify genetic variants is continually evolving, and the classification can change on the basis of newly available data. Although up-to-date variant classification is essential for clinical management, reproductive planning, and identifying at-risk family members, there is no consistent practice across laboratories or clinicians on how or under what circumstances to perform variant reinterpretation. METHODS: We conducted exploratory focus groups (N = 142) and surveys (N = 1753) with stakeholders involved in the process of variant reinterpretation (laboratory directors, clinical geneticists, genetic counselors, nongenetic providers, and patients/parents) to assess opinions on key issues, including initiation of reinterpretation, variants to report, termination of the responsibility to reinterpret, and concerns about consent, cost, and liability. RESULTS: Stakeholders widely agreed that there should be no fixed termination point to the responsibility to reinterpret a previously reported genetic variant. There were significant concerns about liability and lack of agreement about many logistical aspects of variant reinterpretation. CONCLUSION: Our findings suggest a need to (1) develop consensus and (2) create transparency and awareness about the roles and responsibilities of parties involved in variant reinterpretation. These data provide a foundation for developing guidelines on variant reinterpretation that can aid in the development of a low-cost, scalable, and accessible approach.