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1.
Proc Natl Acad Sci U S A ; 120(49): e2311250120, 2023 Dec 05.
Artigo em Inglês | MEDLINE | ID: mdl-38015838

RESUMO

When two people coincidentally have something in common (such as a name or birthday), they tend to like each other more and are thus more likely to offer help and comply with requests. This dynamic can have important legal and ethical consequences whenever these incidental similarities give rise to unfair favoritism. Using a large-scale, longitudinal natural experiment, covering nearly 200,000 annual earnings forecasts over more than 25 y, we show that when a CEO and a securities analyst share a first name, the analyst's financial forecast is more accurate. We offer evidence that name matching improves forecast accuracy due to CEOs privately sharing pertinent information with name-matched analysts. Additionally, we show that this effect is especially pronounced among CEO-analyst pairs who share an uncommon first name. Our research thus demonstrates how incidental similarities can give way to special treatment. Whereas most investigations of the effects of similarity consider only one-shot interactions, we use a longitudinal dataset to show that the effect of name matching diminishes over time with more interactions between CEOs and analysts. We also point to the findings of an experiment suggesting that favoritism born of sharing a name may evade straightforward regulation in part due to people's perception that name similarity would exert little influence on them. Taken together, our work offers insight into when private disclosures are likely to be made. Our results suggest that the effectiveness of regulatory policies can be significantly impacted by psychological factors shaping the context in which they are implemented.


Assuntos
Revelação , Nomes , Humanos
2.
Proc Natl Acad Sci U S A ; 120(43): e2220558120, 2023 Oct 24.
Artigo em Inglês | MEDLINE | ID: mdl-37831744

RESUMO

The use of formal privacy to protect the confidentiality of responses in the 2020 Decennial Census of Population and Housing has triggered renewed interest and debate over how to measure the disclosure risks and societal benefits of the published data products. We argue that any proposal for quantifying disclosure risk should be based on prespecified, objective criteria. We illustrate this approach to evaluate the absolute disclosure risk framework, the counterfactual framework underlying differential privacy, and prior-to-posterior comparisons. We conclude that satisfying all the desiderata is impossible, but counterfactual comparisons satisfy the most while absolute disclosure risk satisfies the fewest. Furthermore, we explain that many of the criticisms levied against differential privacy would be levied against any technology that is not equivalent to direct, unrestricted access to confidential data. More research is needed, but in the near term, the counterfactual approach appears best-suited for privacy versus utility analysis.


Assuntos
Confidencialidade , Revelação , Privacidade , Medição de Risco , Censos
3.
Proc Natl Acad Sci U S A ; 119(31): e2104906119, 2022 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-35878030

RESUMO

The federal statistical system is experiencing competing pressures for change. On the one hand, for confidentiality reasons, much socially valuable data currently held by federal agencies is either not made available to researchers at all or only made available under onerous conditions. On the other hand, agencies which release public databases face new challenges in protecting the privacy of the subjects in those databases, which leads them to consider releasing fewer data or masking the data in ways that will reduce their accuracy. In this essay, we argue that the discussion has not given proper consideration to the reduced social benefits of data availability and their usability relative to the value of increased levels of privacy protection. A more balanced benefit-cost framework should be used to assess these trade-offs. We express concerns both with synthetic data methods for disclosure limitation, which will reduce the types of research that can be reliably conducted in unknown ways, and with differential privacy criteria that use what we argue is an inappropriate measure of disclosure risk. We recommend that the measure of disclosure risk used to assess all disclosure protection methods focus on what we believe is the risk that individuals should care about, that more study of the impact of differential privacy criteria and synthetic data methods on data usability for research be conducted before either is put into widespread use, and that more research be conducted on alternative methods of disclosure risk reduction that better balance benefits and costs.


Assuntos
Segurança Computacional , Confidencialidade , Privacidade , Coleta de Dados , Revelação , Governo Federal , Órgãos Governamentais
4.
Br Med Bull ; 150(1): 23-41, 2024 Jun 10.
Artigo em Inglês | MEDLINE | ID: mdl-38437453

RESUMO

INTRODUCTION: a sizable proportion of the working population has a disability that is not visible. Many choose not to disclose this at work, particularly in educational workplaces where disability is underrepresented. A better understanding of the barriers and facilitators to disclosure is needed. SOURCES OF DATA: this scoping review is based on studies published in scientific journals. AREAS OF AGREEMENT: the reasons underpinning disclosure are complex and emotive-in-nature. Both individual and socio-environmental factors influence this decision and process. Stigma and perceived discrimination are key barriers to disclosure and, conversely, personal agency a key enabler. AREAS OF CONTROVERSY: there is a growing trend of non-visible disabilities within the workplace, largely because of the increasing prevalence of mental ill health. Understanding the barriers and facilitators to disability disclosure is key to the provision of appropriate workplace support. GROWING POINTS: our review shows that both individual and socio-environmental factors influence choice and experience of disclosure of non-visible disabilities in educational workplaces. Ongoing stigma and ableism in the workplace, in particular, strongly influence disabled employees' decision to disclose (or not), to whom, how and when. AREAS TIMELY FOR DEVELOPING RESEARCH: developing workplace interventions that can support employees with non-visible disabilities and key stakeholders during and beyond reasonable adjustments is imperative.


Assuntos
Pessoas com Deficiência , Estigma Social , Local de Trabalho , Humanos , Local de Trabalho/psicologia , Pessoas com Deficiência/psicologia , Revelação
5.
Genet Med ; 26(3): 101051, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38131308

RESUMO

PURPOSE: The UK 100,000 Genomes Project offered participants screening for additional findings (AFs) in genes associated with familial hypercholesterolemia (FH) or hereditary cancer syndromes including breast/ovarian cancer (HBOC), Lynch, familial adenomatous polyposis, MYH-associated polyposis, multiple endocrine neoplasia (MEN), and von Hippel-Lindau. Here, we report disclosure processes, manifestation of AF-related disease, outcomes, and costs. METHODS: An observational study in an area representing one-fifth of England. RESULTS: Data were collected from 89 adult AF recipients. At disclosure, among 57 recipients of a cancer-predisposition-associated AF and 32 recipients of an FH-associated AF, 35% and 88%, respectively, had personal and/or family history evidence of AF-related disease. During post-disclosure investigations, 4 cancer-AF recipients had evidence of disease, including 1 medullary thyroid cancer. Six women with an HBOC AF, 3 women with a Lynch syndrome AF, and 2 individuals with a MEN AF elected for risk-reducing surgery. New hyperlipidemia diagnoses were made in 6 FH-AF recipients and treatment (re-)initiated for 7 with prior hyperlipidemia. Generating and disclosing AFs in this region cost £1.4m; £8680 per clinically significant AF. CONCLUSION: Generation and disclosure of AFs identifies individuals with and without personal or familial evidence of disease and prompts appropriate clinical interventions. Results can inform policy toward secondary findings.


Assuntos
Neoplasias da Mama , Hiperlipidemias , Síndromes Neoplásicas Hereditárias , Adulto , Humanos , Feminino , Testes Genéticos/métodos , Revelação , Síndromes Neoplásicas Hereditárias/genética , Neoplasias da Mama/genética , Hiperlipidemias/genética , Atenção à Saúde , Predisposição Genética para Doença
6.
Genet Med ; : 101198, 2024 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-38943479

RESUMO

PURPOSE: We compared the rate of errors in genome sequencing (GS) result disclosures by genetic counselors (GC) and trained non-genetics healthcare professionals (NGHP) in SouthSeq, a randomized trial utilizing GS in critically ill infants. METHODS: Over 400 recorded GS result disclosures were analyzed for major and minor errors. We used Fisher's exact test to compare error rates between GCs and NGHPs and performed a qualitative content analysis to characterize error themes. RESULTS: Major errors were identified in 7.5% of disclosures by NGHPs and in no disclosures by GCs. Minor errors were identified in 32.1% of disclosures by NGHPs and in 11.4% of disclosures by GCs. While most disclosures lacked errors, NGHPs were significantly more likely to make any error than GCs for all result types (positive, negative, or uncertain). Common major error themes include omission of critical information, overstating a negative result, and overinterpreting an uncertain result. The most common minor error was failing to disclose negative secondary findings. CONCLUSION: Trained NGHPs made clinically significant errors in GS result disclosures. Characterizing common errors in result disclosure can illuminate gaps in education to inform the development of future genomics training and alternative service delivery models.

7.
Hum Reprod ; 2024 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-39008824

RESUMO

STUDY QUESTION: Are donor-conceived adults in Belgium interested in obtaining donor information, and do these interests vary based on their family backgrounds? SUMMARY ANSWER: Donor-conceived adults express a significant interest in obtaining donor-related information, with the highest interest reported by offspring from heterosexual couples compared to those from lesbian couple-parented or single-parent families. WHAT IS KNOWN ALREADY: In Belgium, sperm donation is mainly anonymous, but the rise of direct-to-consumer genetic testing challenges this anonymity. STUDY DESIGN, SIZE, DURATION: This was a cross-sectional study involving an online nationwide survey conducted from July 2022 to October 2023. Participants, aged 18 years and older and being aware of their anonymous sperm donor-conceived status, were recruited through various channels. PARTICIPANTS/MATERIALS, SETTING, METHODS: A total of 203 participants were included: 62.6% grew up in heterosexual families with infertile fathers, 26.1% with lesbian couples, 8.4% with single parents, and 3.0% in various or diverse family structures. The survey was available in both French and Dutch and consisted of 43 questions, including a mix of yes/no questions and multiple-choice items. MAIN RESULTS AND THE ROLE OF CHANCE: The average age of disclosure was 16.5 years, with notably later disclosure in heterosexual couple-parented households. A substantial 82.8% of donor-conceived individuals expressed a keen interest in obtaining non-personally identifiable donor information, while 69% were curious about personally identifiable donor data. Furthermore, 61.6% conveyed a desire for personal contact with their donors, and 26.6% advocated for the inclusion of the donor's name on their birth certificates. Participants raised in lesbian two-parent families exhibited the lowest level of interest in donor-related information compared with those raised in other family structures. An overwhelming 90.1% wondered about the possibility of having half-siblings from the same sperm donor. Analysis of survey responses on DNA database registration revealed that 55.2% of donor-conceived offspring were already registered, with 68.8% discovering the same donor offspring and 30.4% successfully locating their donors. Compared to individuals from other family structures, those raised in heterosexual couple-parented households exhibit a less positive attitude toward their conception through anonymous sperm donation. About 61.6% of donor-conceived individuals reported experiencing distinct emotions compared to their peers, while 44.1% encountered psychological difficulties related to anonymous sperm donation, primarily attributed to late disclosure. The majority supported the idea of informing the donor about the number of children he facilitated to conceive. Lastly, the study highlighted that 21.2% of donor-conceived adults considered becoming donors themselves, and 31.3% expressed willingness to use an anonymous donor whenever faced with fertility challenges. LIMITATIONS, REASONS FOR CAUTION: Our sample size may not fully represent all adults conceived through anonymous sperm donation in Belgium. Participation bias may have influenced the results, especially due to the overrepresentation of participants from heterosexual couples. Additionally, an association exists between individuals raised by heterosexual couples and late disclosure, complicating the analysis by introducing a confounding factor. WIDER IMPLICATIONS OF THE FINDINGS: The findings of this study contribute to a better understanding of the needs and preferences of donor-conceived adults, with significant potential impact on patient education and healthcare policy. STUDY FUNDING/COMPETING INTEREST(S): Study funding was not obtained for this research. There are no conflicts of interest to disclose. TRIAL REGISTRATION NUMBER: N/A.

8.
Hum Reprod ; 39(6): 1247-1255, 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38593421

RESUMO

STUDY QUESTION: Can the application of the theory of planned behavior (TPB) help predict heterosexual parents' disclosure of donor conception to their children? SUMMARY ANSWER: Parents with a stronger will to act in accordance with social norms favoring disclosure were more likely to start the disclosure process within the next 5-9 years. WHAT IS KNOWN ALREADY: In contrast to single mothers by choice and same-sex couples, heterosexual couples need to make an active decision to disclose their use of donor conception to their child. While disclosure at an early age is encouraged by international guidelines, many heterosexual-couple parents struggle with this. A previous study has found an association between parental scores of TPB factors and disclosure intention, but so far, no study has applied the TPB to predict parents' disclosure behavior. STUDY DESIGN, SIZE, DURATION: The present study is based on the fourth and fifth waves of data collection (T4 and T5) in a nation-wide longitudinal study. Participating parents had conceived through identity-release oocyte donation (n = 68, response rate 65%) and sperm donation (n = 62, response rate 56%) as part of a heterosexual couple. PARTICIPANTS/MATERIALS, SETTING, METHODS: The present study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD). Consecutive recruitment of couples starting oocyte or sperm donation treatment was conducted at all seven fertility clinics providing gamete donation in Sweden during a 3-year period (2005-2008). Participants were requested to complete postal surveys at five time points. The present study includes heterosexual-couple parents following oocyte or sperm donation who participated at the two latest time points when their children were 7-8 years old (T4), and 13-17 years old (T5). At T4, participants completed the study-specific TPB Disclosure Questionnaire (TPB-DQ) measuring attitudes and intentions to disclose the donor conception to the child, and disclosure behavior was assessed at both T4 and T5. Data from those participants who had not yet disclosed at T4 were analyzed using survival analysis with Cox regressions. MAIN RESULTS AND THE ROLE OF CHANCE: Forty participants had not disclosed the donor conception to their children at T4 and, out of these, 13 had still not disclosed at T5. We found a significant association between scores of the TPB factor Subjective norms at T4 and their subsequent disclosure behavior at T5 (HR = 2.019; 95% CI: 1.36-3.01). None of the other factors were significantly associated with disclosure behavior. LIMITATIONS, REASONS FOR CAUTION: The present study concerns heterosexual-couple parents with children conceived following treatment with gametes from open-identity donors, which limits the generalizability of our findings to other groups and contexts. Other limitations include the risk of systematic attrition due to the longitudinal study design and decreased statistical power due to few participants. WIDER IMPLICATIONS OF THE FINDINGS: Our findings highlight the importance of perceived subjective norms for parents' disclosure behavior and indicate that the co-parent's opinion about disclosure is of particular relevance in this regard. Counselors should focus on supporting prospective parents to initiate and maintain a healthy and open dialogue about concerns around building a family with donor conception. STUDY FUNDING/COMPETING INTEREST(S): The study was funded by the Swedish Research Council. The authors have no competing interests to declare. TRIAL REGISTRATION NUMBER: N/A.


Assuntos
Concepção por Doadores , Pais , Humanos , Feminino , Masculino , Estudos Longitudinais , Concepção por Doadores/psicologia , Adulto , Criança , Pais/psicologia , Relações Pais-Filho , Doação de Oócitos/psicologia , Suécia , Revelação , Inseminação Artificial Heteróloga/psicologia , Estudos Prospectivos , Heterossexualidade/psicologia , Teoria do Comportamento Planejado
9.
Hum Genomics ; 17(1): 63, 2023 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-37454085

RESUMO

INTRODUCTION: The adoption and implementation of genomic medicine and pharmacogenomics (PGx) in healthcare systems have been very slow and limited worldwide. Major barriers to knowledge translation into clinical practice lie in the level of literacy of the public of genetics and genomics. The aim of this study was to assess the knowledge, attitudes, and perceptions of the United Arab Emirates (UAE) multi-ethnic communities toward genomic medicine and genetic testing. METHOD: A cross-sectional study using validated questionnaires was distributed to the participants. Descriptive statistics were performed, and multivariable logistic regression models were used to identify factors associated with knowledge of genomics. RESULTS: 757 individuals completed the survey. Only 7% of the participants had a good knowledge level in genetics and genomics (95% CI 5.3-9.0%). However, 76.9% of the participants were willing to take a genetic test if their relatives had a genetic disease. In addition, the majority indicated that they would disclose their genetic test results to their spouses (61.5%) and siblings (53.4%). CONCLUSIONS: This study sets the stage for the stakeholders to plan health promotion and educational campaigns to improve the genomic literacy of the community of the UAE as part of their efforts for implementing precision and personalized medicine in the country.


Assuntos
Medicina Genômica , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Emirados Árabes Unidos/epidemiologia , Estudos Transversais , Inquéritos e Questionários
10.
Reprod Biomed Online ; 48(1): 103412, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37980227

RESUMO

A personal description and goodwill message is often the only form of communication a gamete recipient receives from the donor. However, the nature of the information gamete donors leave for recipients is not well understood. This Viewpoint article discusses a recent study published in this journal that makes a significant contribution to our understanding of this area of research and raises important questions for research going forward.


Assuntos
Revelação , Doação de Oócitos , Humanos , Células Germinativas , Doadores de Tecidos , Comunicação
11.
Vox Sang ; 119(6): 581-589, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38622931

RESUMO

BACKGROUND AND OBJECTIVES: Accurate HIV incidence estimates among blood donors are necessary to assess the effectiveness of programs aimed at limiting transfusion-transmitted HIV. We assessed the impact of undisclosed HIV status and antiretroviral (ARV) use on HIV recency and incidence estimates using increasingly comprehensive recent infection testing algorithms. MATERIALS AND METHODS: Using 2017 donation data from first-time and lapsed donors, we populated four HIV recency algorithms: (1) serology and limiting-antigen avidity testing, (2) with individual donation nucleic amplification testing (ID-NAT) added to Algorithm 1, (3) with viral load added to Algorithm 2 and (4) with ARV testing added to Algorithm 3. Algorithm-specific mean durations of recent infection (MDRI) and false recency rates (FRR) were calculated and used to derive and compare incidence estimates. RESULTS: Compared with Algorithm 4, progressive algorithms misclassified fewer donors as recent: Algorithm 1: 61 (12.1%); Algorithm 2: 14 (2.8%) and Algorithm 3: 3 (0.6%). Algorithm-specific MDRI and FRR values resulted in marginally lower incidence estimates: Algorithm 1: 0.19% per annum (p.a.) (95% confidence interval [CI]: 0.13%-0.26%); Algorithm 2: 0.18% p.a. (95% CI: 0.13%-0.22%); Algorithm 3: 0.17% p.a. (95% CI: 0.13%-0.22%) and Algorithm 4: 0.17% p.a. (95% CI: 0.13%-0.21%). CONCLUSION: We confirmed significant misclassification of recent HIV cases when not including viral load and ARV testing. Context-specific MDRI and FRR resulted in progressively lower incidence estimates but did not fully account for the context-specific variability in incidence modelling. The inclusion of ARV testing, in addition to viral load and ID-NAT testing, did not have a significant impact on incidence estimates.


Assuntos
Algoritmos , Infecções por HIV , Humanos , Infecções por HIV/epidemiologia , Infecções por HIV/tratamento farmacológico , Incidência , Masculino , Feminino , Doadores de Sangue , Adulto , Carga Viral , Revelação , Antirretrovirais/uso terapêutico
12.
AIDS Behav ; 28(6): 1947-1964, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38491226

RESUMO

Young adults with perinatally acquired HIV (PAH) face numerous challenges, including antiretroviral therapy (ART) adherence, managing onward HIV transmission risks and maintaining wellbeing. Sharing one's HIV status with others (onward HIV disclosure) may assist with these challenges but this is difficult. We developed and tested the feasibility of an intervention to help HIV status sharing decision-making for young adults with PAH. The study used a randomised parallel group feasibility design with 18-25-year-olds in Uganda and 18-29 year-olds in the UK. Participants were randomly assigned to intervention or standard of care (SOC) condition. The intervention consisted of four sessions (3 group, 1 individual) with follow-up support, delivered in person in Uganda and remotely in the UK. Assessments were carried out at: Pre-intervention /baseline; Post-intervention (intervention group only); Six-month follow-up. 142 participants were recruited (94 Uganda, 48 UK; 89 female, 53 male). At six-month follow-up, 92/94 (98%) participants were retained in Uganda, 25/48 (52%) in the UK. Multivariate analysis of combined data from both countries, showed a non-significant effect of intervention condition on HIV disclosure cognitions and affect (p = 0.08) and HIV disclosure intention (p = 0.09). There was a significant intervention effect on well-being (p = 0.005). This study addressed important gaps in understanding acceptable and feasible ways of delivering HIV status sharing support for young people living with PAH across two very different settings. The intervention was acceptable in both countries and feasible in Uganda. In the UK, retention may have been affected by its remote delivery.Trial registration: ISRCTN Registry, ISRCTN31852047, Registered on 21 January 2019.


Assuntos
Tomada de Decisões , Estudos de Viabilidade , Infecções por HIV , Humanos , Masculino , Feminino , Uganda , Infecções por HIV/psicologia , Infecções por HIV/tratamento farmacológico , Adulto , Reino Unido , Adulto Jovem , Adolescente , Transmissão Vertical de Doenças Infecciosas/prevenção & controle , Revelação da Verdade , Empoderamento , Seguimentos
13.
AIDS Behav ; 28(3): 1047-1057, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37861924

RESUMO

Little is known about HIV medication concealment behaviors and the effect of medication concealment on antiretroviral therapy (ART) adherence among people with HIV (PWH). This study aims to (1) to describe medication concealment behaviors and factors associated with these behaviors, and (2) assess the association between medication concealment and suboptimal ART adherence. The Florida Cohort Study enrolled adult PWH from community-based clinics around the state from October 2020 to September 2022 (n = 416, 62% aged 50+, 56% male, 44% non-Hispanic Black, 18% Hispanic). Participants responded to questions about sociodemographics, stigma, ART adherence (≥ 85%), symptoms of depression, social networks and disclosure to their networks, and actions to conceal ART to avoid inadvertent disclosure of their HIV status. Analyses were conducted using multivariable logistic regressions models. The most common concealment behavior was hiding ART while having guests over (32%), followed by removing ART labels (26%), and putting ART into a different bottle (16%). Overall, 43% reported ≥ 1 behavior. In multivariable models, depressive symptoms, incomplete disclosure of HIV to close social networks, and not having a close social network were associated with ART concealment. After adjusting for risk factors for suboptimal ART adherence, endorsing hiding medication while having guests was associated with suboptimal ART adherence (aOR 2.87, 95% CI 1.15-7.55). Taking any action and other individual behaviors were not associated. ART concealment behaviors were common but did not consistently negatively influence adherence when accounting for other factors. PWH may want to receive ART medications in ways that ensure privacy and reduce the risk of inadvertent disclosure.


Assuntos
Infecções por HIV , Adulto , Humanos , Masculino , Feminino , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Florida/epidemiologia , Estudos de Coortes , Adesão à Medicação , Antirretrovirais/uso terapêutico , Estigma Social
14.
AIDS Behav ; 28(7): 2247-2257, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38869756

RESUMO

We examined the impact of past-year intimate partner violence (IPV) on HIV outcomes among women living with HIV (WLHIV) in Durban, South Africa. We assessed past-year IPV using the WHO Violence Against Women Questionnaire. We conducted logistic regression to assess associations between demographic variables and IPV at baseline, and between IPV at baseline and longitudinal HIV outcomes. Among 235 WLHIV, 17% reported past-year emotional, physical, or sexual IPV. At baseline, HIV-disclosure to partner was associated with 4.35-fold odds of past-year IPV (95% CI 1.17-16.10) after controlling for children, education, and harmful alcohol use. In the prospective analysis, IPV was associated with not achieving the co-primary outcome of retention in care and viral suppression in univariate (OR = 2.32, 95% CI 1.04-5.18), but not in the multivariate model. In the context of rapid treatment scale-up, the high burden of IPV among WLHIV needs to be prioritized, with an emphasis on disclosure support.


Assuntos
Infecções por HIV , Violência por Parceiro Íntimo , Parceiros Sexuais , Humanos , Feminino , África do Sul/epidemiologia , Infecções por HIV/psicologia , Infecções por HIV/epidemiologia , Violência por Parceiro Íntimo/estatística & dados numéricos , Violência por Parceiro Íntimo/psicologia , Adulto , Estudos Prospectivos , Inquéritos e Questionários , Pessoa de Meia-Idade , Modelos Logísticos , Fatores de Risco , Fatores Socioeconômicos
15.
AIDS Behav ; 28(1): 105-114, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37812270

RESUMO

Appropriate parental HIV disclosures (i.e., parents living with HIV [PLH] tell their HIV diagnosis to their children) benefit parents, children, and family relations. Psychosocial factors could influence the decision-making process of parental HIV disclosure. Using the Health Action Process Approach to frame stages (pre-intention, intention, and action) in the decision-making process, this study aimed to investigate how psychosocial factors predict HIV disclosure stage transitions among PLH in China. Data were collected from a randomized clinical trial of a theory-based parental HIV disclosure intervention among 791 PLH. The predictive effects of psychosocial factors on disclosure stage transitions were examined using a Markov chain model matrix. Results showed that action self-efficacy and action planning were significant predictors of parental HIV disclosure stage transitions. Considering stage-specific psychosocial predictors may contribute to effective interventions to promote appropriate HIV disclosure among PLH in China.


Assuntos
Infecções por HIV , Pais , Revelação da Verdade , Humanos , China/epidemiologia , Infecções por HIV/diagnóstico , Infecções por HIV/psicologia , Pais/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Relações Pais-Filho
16.
AIDS Behav ; 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38951455

RESUMO

Disclosing one's HIV status can involve complex individual and interpersonal processes interacting with discriminatory societal norms and institutionalized biases. To support disclosure decision-making among young men who have sex with men (YMSM) living with HIV, we developed Tough Talks™, an mHealth intervention that uses artificially intelligent-facilitated role-playing disclosure scenarios and informational activities that build disclosure skills and self-efficacy. Qualitative interviews were conducted with 30 YMSM living with HIV (mean age 24 years, 50% Black) who were enrolled in a randomized controlled trial assessing Tough Talks™ to understand their experiences with HIV status disclosure. Interviews were recorded, transcribed, and thematically coded. Barriers to disclosure focused on fear, anxiety, stigma, and trauma. Facilitators to disclosure are described in the context of these barriers including how participants built comfort and confidence in disclosure decisions and ways the Tough Talks™ intervention helped them. Participants' narratives identified meaning-making within disclosure conversations including opportunities for educating others and advocacy. Findings revealed ongoing challenges to HIV status disclosure among YMSM and a need for clinical providers and others to support disclosure decision-making and affirm individuals' autonomy over their decisions to disclose. Considering disclosure as a process rather than discrete events could inform future intervention approaches.

17.
AIDS Care ; 36(sup1): 76-84, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38289470

RESUMO

Parental HIV disclosure, where parents living with HIV (PLH) communicate their diagnosis to their children, is crucial for family communication. This study assessed intervention effects of a parental HIV disclosure intervention on psychosocial factors, focusing on child's age impact. Data from a randomized controlled trial involving 791 PLH in China were analyzed at baseline (W1), 6-month (W2), and 12-month follow-ups (W3). The study measured effects on psychosocial factors (HIV disclosure knowledge, outcome expectancy, action self-efficacy, and action planning) using the proportional latent change score method. Among PLH with children aged 6-9, the intervention yielded significant intervention effects on knowledge (ß = 0.190, p = .004), action self-efficacy (ß = 0.342, p = .001), and action planning (ß = 0.389, p < .001) from W1 to W2. For PLH with children aged 10-12, the intervention significantly enhanced action self-efficacy (ß = 0.162, p = .003) and action planning (ß = 0.367, p = .001) from W1 to W2, but there was a reduction in perceived benefits (ß = -0.175, p = 0.024) from W2 to W3. For PLH with children aged 13-15, significant intervention effects were observed on action planning, both from W1 to W2 (ß = 0.251, p = .045) and from W2 to W3 (ß = 0.321, p < .001). These findings highlight the importance of tailoring interventions to consider psychosocial factors and children's developmental stages to enhance HIV disclosure practices.


Assuntos
Infecções por HIV , Relações Pais-Filho , Pais , Revelação da Verdade , Humanos , Masculino , Feminino , China , Criança , Infecções por HIV/psicologia , Pais/psicologia , Adulto , Autoeficácia , Fatores Etários , Conhecimentos, Atitudes e Prática em Saúde
18.
AIDS Care ; 36(sup1): 117-125, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38289620

RESUMO

The HIV epidemic continues to expand in Russia, with suboptimal levels of care uptake. This qualitative study aimed to characterize social capital resources and lived stigma experiences, coping, and disclosure among care-nonadherent men who have sex with men (MSM) living with HIV in Russia. Twenty-five HIV-positive MSM - recruited online - completed in-depth interviews over Zoom, with data analyzed using MAXQDA software. Stigma was more likely to be encountered in interactions with persons with whom social ties were weaker such as medical providers and relatives, particularly males. Close friends - often other HIV-positive MSM and female relatives - were the most supportive and least stigmatizing. Similar persons were most often considered for HIV serostatus disclosure. Coping strategies to reduce the impact of stigma included ignoring stigmatizing experiences, seeking support from members of one's social circle, minimizing contact with stigmatizing persons, seeking new relationships with persons who are also HIV-positive, proactively reducing stigma through involvement in advocacy roles, and correcting myths and educating others about HIV infection. These findings underscore the need for interventions to assist HIV-positive MSM in building accepting social capital resources to reduce the impact of stigma and to build support within their social networks, often with other HIV-positive MSM.


Assuntos
Adaptação Psicológica , Infecções por HIV , Homossexualidade Masculina , Pesquisa Qualitativa , Capital Social , Estigma Social , Humanos , Masculino , Federação Russa , Adulto , Infecções por HIV/psicologia , Homossexualidade Masculina/psicologia , Pessoa de Meia-Idade , Apoio Social , Revelação da Verdade , Adulto Jovem , Entrevistas como Assunto , Feminino , Soropositividade para HIV/psicologia , Minorias Sexuais e de Gênero/psicologia , Autorrevelação , Capacidades de Enfrentamento
19.
Conserv Biol ; 38(2): e14183, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37700634

RESUMO

Ensuring that companies can assess and manage their impacts on biodiversity will be crucial to solving the current biodiversity crisis, and regulatory and public pressure to disclose these impacts is increasing. Top-down intactness metrics (e.g., Mean Species Abundance) can be valuable for generating high-level or first-tier assessments of impact risk but do not provide sufficient precision or guidance for companies, regulators, or third-party assessors. New metrics based on bottom-up assessments of biodiversity (e.g., the Species Threat Abatement and Restoration metric) can accommodate spatial variation of biodiversity and provide more specific guidance for actions to avoid, reduce, remediate, and compensate for impacts and to identify positive opportunities.


Cuantificación vertical de la biodiversidad mundial necesarias para que las empresas evalúen y gestionen su impacto Resumen Para resolver la actual crisis de biodiversidad, es importante asegurar que las empresas puedan evaluar y gestionar su impacto sobre la biodiversidad. Además, cada vez es mayor la presión pública y legislativa para divulgar este impacto. La cuantificación vertical de la integridad (p. ej.: Abundancia Media de Especies) puede ser valiosa para producir evaluaciones de alto nivel o primera categoría del riesgo de impacto, pero no proporcionan suficiente precisión o guía para las empresas, los reguladores o los asesores de terceros. Las nuevas medidas basadas en evaluaciones verticales (p. ej.: la medida de Abatimiento y Restauración de Amenazas de Especies) pueden acomodar la variación espacial de la biodiversidad y proporcionar una guía más específica para las acciones necesarias para evitar, reducir, remediar y compensar los impactos e identificar las oportunidades positivas.


Assuntos
Conservação dos Recursos Naturais , Ecossistema , Biodiversidade , Comércio
20.
J Geriatr Psychiatry Neurol ; : 8919887241254468, 2024 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-39046920

RESUMO

BACKGROUND: Delivering a diagnosis of Alzheimer's disease and related dementias (ADRD) can be challenging not just for patients and families, but also for clinicians. Our objective was to understand dementia specialty care clinicians' perspectives on their role in diagnosis and diagnostic disclosure in dementia. METHODS: Qualitative interviews with clinicians from a specialty tertiary dementia care center focused on practices, challenges, and opportunities addressing patient and caregiver needs in dementia. Data was analyzed by an interdisciplinary team using thematic analysis. RESULTS: The 16 participants included behavioral neurologists, social workers, neuropsychologists, and nurses. Themes included the value of providing an accurate diagnosis, the timing and challenges of delivering a diagnosis, the central focus on diagnosis alongside the need for more education on care management, and the role of the interdisciplinary team. DISCUSSION: We identified areas for improvement and strengths that can be built upon or adapted to other settings, including providing clinicians in specialty and primary care settings more guidance and support when diagnostic challenges arise, strengthening interdisciplinary teamwork, and making dementia diagnosis and care more accessible.

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