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1.
Environ Health ; 22(1): 44, 2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-37259092

RESUMO

BACKGROUND: In the European Union (EU), the safety assessment of plant protection products relies to a large extent on toxicity studies commissioned by the companies producing them. By law, all performed studies must be included in the dossier submitted to authorities when applying for approval or renewal of the active substance. METHODS: For one type of toxicity, i.e. developmental neurotoxicity (DNT), we evaluated if studies submitted to the U.S. Environmental Protection Agency (EPA) had also been disclosed to EU authorities. RESULTS: We identified 35 DNT studies submitted to the U.S. EPA and with the corresponding EU dossiers available. Of these, 9 DNT studies (26%) were not disclosed by the pesticide company to EU authorities. For 7 of these studies, we have identified an actual or potential regulatory impact. CONCLUSIONS: We conclude that (1) non-disclosure of DNT studies to EU authorities, in spite of clear legal requirements, seems to be a recurring phenomenon, (2) the non-disclosure may introduce a bias in the regulatory risk assessment, and (3) without full access to all performed toxicity studies, there can be no reliable safety evaluation of pesticides by EU authorities. We suggest that EU authorities should cross-check their data sets with their counterparts in other jurisdictions. In addition, applications for pesticide approval should be cross-checked against lists of studies performed at test facilities operating under Good Laboratory Practice (GLP), to ensure that all studies have been submitted to authorities. Furthermore, rules should be amended so that future studies should be commissioned by authorities rather than companies. This ensures the authorities' knowledge of existing studies and prevents the economic interest of the company from influencing the design, performance, reporting and dissemination of studies. The rules or practices should also be revised to ensure that non-disclosure of toxicity studies carries a significant legal risk for pesticide companies.


Assuntos
Política Ambiental , Praguicidas , Humanos , União Europeia , Síndromes Neurotóxicas/etiologia , Praguicidas/toxicidade
2.
J Genet Couns ; 2023 Sep 26.
Artigo em Inglês | MEDLINE | ID: mdl-37750464

RESUMO

As part of clinical genetic counseling practice, patients may request that their primary genetic test results be disclosed to someone else, such as a relative or referring provider, or request that results be disclosed to no one (non-disclosure). In making these requests, patients employ the ethical principle of the "right not to know," which argues that autonomous individuals can choose not to know relevant health information. Although the right not to know has been well-studied in medicine in general, and in the return of genomic secondary findings, we are not aware of other studies that have explored the return of primary genetic test results when patients request non-disclosure or disclosure to another individual. This study aimed to describe common clinical scenarios in which these requests occur, how genetic counselors respond, and what ethical considerations they employ in their decision-making process. We recruited participants from the National Society of Genetic Counselors' (NSGC) "Student Research Surveys and Reminders" listserv and conducted semi-structured interviews with 11 genetic counselors in the United States who described genetic counseling cases where this occurred. Interviews were transcribed and coded inductively, and themes were identified. Case details varied, but in our study data the requests for non-disclosure were most commonly made by patients with poor, often oncologic, prognoses who requested their test results be disclosed to a family member instead of themselves. Genetic counselors considered similar factors in deciding how to respond to these requests: patient autonomy, medical actionability of results for the patient and family, the relationship between the patient and the person to whom results might be disclosed, and legal or practical concerns. Genetic counselors often made decisions on a case-by-case basis, depending on how relevant each of these factors were. This study adds to the growing body of literature regarding patients' "right not to know" and will hopefully provide guidance for genetic counselors who experience this situation in clinical practice.

3.
Cult Health Sex ; 25(11): 1483-1497, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-36639148

RESUMO

For people living with HIV, decisions about when, how and who to tell about their HIV status can involve navigating complex social, legal and health domains. With a focus on disclosure to broader social and familial networks, we explored the experiences of, and motivations for, HIV (non-)disclosure among recently diagnosed people living with HIV in Australia. Semi-structured interviews were conducted with 35 people diagnosed with HIV from 2016 onwards, of whom 25 completed follow-up interviews. Participants commonly reported anticipating negative responses and rejection from others when considering whether to disclose their HIV status. Some participants also took on the role of ensuring others' wellbeing when disclosing (or not), even as they themselves needed emotional support. Finally, some participants felt it important to be open about their HIV status to raise awareness of HIV and challenge HIV-related stigma. Our findings highlight the complex relational and social contexts that shape HIV disclosure. In addition to supporting individual people living with HIV when disclosing, we argue that educational programmes that target the broader, HIV-negative population are needed to shift the social landscape in which people living with HIV disclose.


Assuntos
Revelação , Infecções por HIV , Humanos , Infecções por HIV/psicologia , Motivação , Estigma Social , Autorrevelação
4.
Omega (Westport) ; 87(3): 941-961, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34275387

RESUMO

Telling the truth to the terminal-stage cancer patients differs socio-culturally based on the priorities assigned to patients' autonomy and the principles of beneficence and non-maleficence. After conducting in-depth interviews with 108 terminal-stage adult cancer patients, 306 family members, and 25 physicians, in private and public hospitals in both rural and urban areas, in the state of West Bengal, India it has been found that even though 85.60% of the patients prefer full disclosure, only 22.03% are actually informed. Though demographic characteristics, like age, gender, education etc., have marginal influences over the pattern of truth-telling, the main factor behind non-disclosure is the family members' preference for principles of beneficence and non-maleficence over patient autonomy. Hence, only 9.32% of those 118 patients' family members have agreed to full disclosure. Physicians comply with this culture of non-disclosure as family, in India, is the centre of decision-making and acts as the primary unit of care.


Assuntos
Neoplasias , Médicos , Adulto , Humanos , Revelação da Verdade , Escolaridade , Índia , Relações Médico-Paciente
5.
Brain Inj ; 35(12-13): 1598-1606, 2021 11 10.
Artigo em Inglês | MEDLINE | ID: mdl-34546810

RESUMO

PRIMARY OBJECTIVE: To determine whether concussion history predicts concussion care seeking, self-management practices, or confidence to recognize/report. RESEARCH DESIGN: Cross-sectional. METHODS & PROCEDURES: 706 United States Air Force Academy (USAFA) cadets completed survey items regarding concussion history (0,1,2,3+), likelihood of reporting a concussion, self-management, and confidence to recognize/report. We used multivariate ordinal and binary logistic regression models to predict responses using concussion history, sex, and race.Main outcomes & results: cadets with 1 (OR = 0.59, 95%CI:0.43-0.82), 2 (OR = 0.55, 95%CI:0.31-0.98), or 3+ (OR = 0.36, 95%CI:0.17-0.78) concussions while at USAFA had respective 41%, 45%, and 64% lower likelihood to report the concussion scenario (ref = no history, p < .001). USAFA cadets with more extensive concussion histories had higher prevalence of not seeking care for a concussion (p < .001); more strongly endorsed self-management (p = .001-0.010); and had greater confidence in their ability to recognize a concussion (p = .005), but not to report (p = .198-0.413). CONCLUSIONS: Prior concussion experiences may deter cadets from seeking medical care for future concussions. Interventions should address concussion history and clinicians should consider how the post-concussion management process might deter care seeking.


Assuntos
Traumatismos em Atletas , Concussão Encefálica , Militares , Atletas , Concussão Encefálica/complicações , Concussão Encefálica/epidemiologia , Estudos Transversais , Humanos , Inquéritos e Questionários , Estados Unidos/epidemiologia
6.
AIDS Behav ; 24(1): 95-113, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30900043

RESUMO

In 2012, the Supreme Court of Canada ruled that people with HIV are legally obligated to disclose their serostatus before sex with a "realistic possibility" of HIV transmission, suggesting a legal obligation to disclose unless they use condoms and have a low HIV viral load (< 1500 copies/mL). We measured prevalence and correlates of ruling awareness among 1230 women with HIV enrolled in a community-based cohort study (2015-2017). While 899 (73%) participants had ruling awareness, only 37% were both aware of and understood ruling components. Among 899 aware participants, 34% had never discussed disclosure and the law with healthcare providers, despite only 5% being unwilling to do this. Detectable/unknown HIV viral load, lack of awareness of prevention benefits of antiretroviral therapy, education ≤ high-school and high HIV-related stigma were negatively associated with ruling awareness. Discussions around disclosure and the law in community and healthcare settings are warranted to support women with HIV.


Assuntos
Comportamento Criminoso , Infecções por HIV/diagnóstico , Pessoal de Saúde/psicologia , Parceiros Sexuais/psicologia , Revelação da Verdade , Canadá , Estudos de Coortes , Pesquisa Participativa Baseada na Comunidade , Estudos Transversais , Feminino , Infecções por HIV/psicologia , Infecções por HIV/transmissão , Humanos , Legislação como Assunto
7.
BMC Public Health ; 20(1): 663, 2020 May 12.
Artigo em Inglês | MEDLINE | ID: mdl-32398150

RESUMO

BACKGROUND: People with a condition subject to stigmatisation, such as chronic hepatitis B, face the dilemma of whether or not to disclose their status. In Ghana, 12.3% of the adult population has the hepatitis B virus (HBV). One key strategy for breaking the cycle of hepatitis B transmission is the disclosure of hepatitis B status by people with chronic hepatitis B (PWHB). Disclosure can facilitate preventive actions to reduce hepatitis B transmission (e.g., not sharing personal items and avoiding contact with blood and body fluids). Disclosure can also motivate family members of PWHB to get tested, linked to care and clinically managed in order to reduce the progression of hepatitis B to liver cirrhosis and cancer. Given the importance of disclosure, we set out to explore reasons for and against disclosure of chronic hepatitis B status in the Greater Accra and Upper East region of Ghana. METHODS: In this exploratory qualitative study, 18 participants (10 from the Greater Accra region and 8 from the Upper East region) were recruited for semi-structured interviews. Interviews were recorded and transcribed verbatim. Data were then processed using QSR Nvivo version 10.0 and analysed for themes. RESULTS: Participants were selective disclosers, disclosing in some contexts and not in others. Reasons for non-disclosure of chronic hepatitis B status were: 1) fear of stigmatisation and 2) previous negative experiences with disclosure. Reasons for disclosure were: 1) wanting close contacts to get tested or vaccinated, 2) trusting the disclosure target(s), and 3) needing social and/or financial support. CONCLUSIONS: Our findings highlight various reasons for and against disclosure of chronic hepatitis B status in Ghana. Because anticipated, observed, and experienced stigma were important motivations for non-disclosure of chronic hepatitis B status, we recommend the development and implementation of theory and evidence-based stigma reduction interventions that are culturally appropriate, and that prioritize the participation of target populations. We also recommend the provision of counselling and support services that assist PWHB in their disclosure decision-making processes.


Assuntos
Revelação/estatística & dados numéricos , Transmissão de Doença Infecciosa/prevenção & controle , Hepatite B Crônica/psicologia , Hepatite B Crônica/transmissão , Estigma Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Gana/epidemiologia , Hepatite B Crônica/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade
8.
BMC Public Health ; 20(1): 1220, 2020 Aug 10.
Artigo em Inglês | MEDLINE | ID: mdl-32778084

RESUMO

BACKGROUND: While previous research has identified how criminalization of HIV non-disclosure can have deleterious effects on those living with HIV, the perspectives of people who use drugs - a population disproportionately affected by HIV- should be more meaningfully considered in these discussions. METHODS: Using constant comparative techniques, data from 60 interviews with men and women living with and without HIV and who use drugs in Vancouver were analyzed to explore their perceptions about Canada's HIV non-disclosure legal framework. RESULTS: Participants' perspectives on the framework involved three themes: understandings of HIV risk; HIV-related stigma; and their own experiences with HIV. While several participants favored the punitive character of the legal framework, these arguments were premised on misinformed and stigmatized assumptions regarding HIV. CONCLUSIONS: The paper concludes by discussing the challenges and opportunities for resisting HIV stigma and misconceptions about HIV within the context of personal accounts that, at times, support criminalization of non-disclosure.


Assuntos
Revelação/legislação & jurisprudência , Usuários de Drogas/psicologia , Infecções por HIV/epidemiologia , Adulto , Idoso , Canadá/epidemiologia , Usuários de Drogas/estatística & dados numéricos , Feminino , Infecções por HIV/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Estigma Social
9.
Med Law Rev ; 28(2): 270-292, 2020 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-31504791

RESUMO

In 2015, the Supreme Court in Montgomery v Lanarkshire Health Board handed down a landmark decision on informed consent to medical treatment, heralding a legal shift to a more patient-centred approach. Montgomery, and the extensive commentary that has followed, focuses on 'adult persons of sound mind'. Cave and Purshouse consider the potential claims that may flow from a failure to adequately inform children. They argue that the relevance of the best interests test blurs the boundaries between negligence and battery. Limitations on children's rights to make treatment decisions for themselves impact on their potential to claim in negligence for non-disclosure and, conversely, enhance the potential relevance of the tort of battery. In paediatric cases, Montgomery raises expectations that the law is currently ill-equipped to satisfy. Tort law provides a legal incentive to disclose relevant information to children but limits the availability of a remedy.


Assuntos
Tomada de Decisões , Revelação/legislação & jurisprudência , Consentimento Livre e Esclarecido/legislação & jurisprudência , Responsabilidade Legal , Imperícia/legislação & jurisprudência , Menores de Idade/legislação & jurisprudência , Adolescente , Criança , Feminino , Pessoal de Saúde/legislação & jurisprudência , Humanos , Masculino , Autonomia Pessoal , Reino Unido
10.
J Community Health ; 44(1): 112-120, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30043195

RESUMO

HIV sero-status disclosure among people living with HIV (PLWH) is an important component of preventing HIV transmission to sexual partners. Due to various social, structural, and behavioral challenges, however, many HIV-infected opioid-dependent patients do not disclose their HIV status to all sexual partners. In this analysis, we therefore examined non-disclosure practices and correlates of non-disclosure among high-risk HIV-infected opioid-dependent individuals. HIV-infected opioid-dependent individuals who reported HIV-risk behaviors were enrolled (N = 133) and assessed for HIV disclosure, risk behaviors, health status, antiretroviral therapy (ART) adherence, HIV stigma, social support and other characteristics. Multivariable logistic regression was used to identify significant correlates of non-disclosure. Overall, 23% reported not disclosing their HIV status to sexual partners, who also had high levels of HIV risk: sharing of injection equipment (70.5%) and inconsistent condom use (93.5%). Independent correlates of HIV non-disclosure included: being virally suppressed (aOR 0.19, p = 0.04), high HIV-related stigma (aOR 2.37, p = 0.03), and having multiple sex partners (aOR 5.87, p = 0.04). Furthermore, a significant interaction between HIV-related stigma and living with family/friends suggests that those living with family/friends were more likely to report not disclosing their HIV status when higher levels of perceived stigma was present. Our findings support the need for future interventions to better address the impact of perceived stigma and HIV disclosure as it relates to risk behaviors among opioid-dependents patients in substance abuse treatment settings.


Assuntos
Infecções por HIV/psicologia , Transtornos Relacionados ao Uso de Opioides/psicologia , Estigma Social , Apoio Social , Revelação da Verdade , Adulto , Feminino , Amigos , Soropositividade para HIV/psicologia , Heterossexualidade , Humanos , Masculino , Assunção de Riscos , Parceiros Sexuais/psicologia , Inquéritos e Questionários
11.
Afr J AIDS Res ; 18(3): 198-204, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31575338

RESUMO

Background: South Africa has the largest HIV/AIDS epidemic globally and the largest anti-retroviral treatment (ART) programme in the world, yet HIV incidence is still chronically high in South Africa, especially in KwaZulu-Natal province (KZN). In light of this, a study was conducted to investigate the extent of challenges making the management of HIV/AIDS difficult in people living with HIV (PLWH) in KZN, South Africa. Methods: A cross-sectional study was carried out with 297 study participants living with HIV and receiving ART from three selected clinics in the Ethekwini Metro of KZN. A self-administered questionnaire assessed the challenges experienced by PLWH, their knowledge of their condition and their management thereof. One-way frequency tables were used to descriptively assess participant responses. Associations between certain demographic characteristics and responses to HIV treatment management challenges were assessed using chi-square tests, with statistical significance set at p < 0.05. Results: One-fifth of the participants (n = 60; 20.1%) were within the 18-23 age group, with over 53% (n = 158) having secondary level education. Some of the challenges cited included: difficulty in obtaining medication, mainly due to cost; side effects resulting in non-adherence; shame for taking medication in public (younger patients were more likely to feel ashamed for taking their medication in public [χ2 = 20.3, p = 0.009]); and non-disclosure of HIV-positive status to partners. We found a significant association between education and financial status and management of their condition [χ2 = 11.2, p = 0.011]. Conclusion: These findings that challenges still exist have implications for more robust programmes on education and counselling to address such challenges.


Assuntos
Síndrome da Imunodeficiência Adquirida/tratamento farmacológico , Síndrome da Imunodeficiência Adquirida/psicologia , Terapia Antirretroviral de Alta Atividade/economia , Efeitos Psicossociais da Doença , Acessibilidade aos Serviços de Saúde , Síndrome da Imunodeficiência Adquirida/epidemiologia , Adolescente , Adulto , Aconselhamento , Estudos Transversais , Epidemias , Feminino , HIV , Humanos , Masculino , Pessoa de Meia-Idade , Parceiros Sexuais , África do Sul/epidemiologia , Inquéritos e Questionários , Adulto Jovem
12.
BMC Public Health ; 18(1): 671, 2018 05 30.
Artigo em Inglês | MEDLINE | ID: mdl-29848345

RESUMO

BACKGROUND: Prevention of mother-to-child HIV transmission (PMTCT) programs usually test pregnant women for HIV without involving their partners. Non-disclosure of maternal HIV status to male partners may deter utilization of PMTCT interventions since partners play a pivotal role in decision-making within the home including access to and utilization of health services. METHODS: Mothers attending routine 6-week and 9-month infant immunizations were enrolled at 141 maternal and child health (MCH) clinics across Kenya from June-December 2013. The current analysis was restricted to mothers with known HIV status who had a current partner. Multivariate logistic regression models adjusted for marital status, relationship length and partner attendance at antenatal care (ANC) were used to determine correlates of HIV non-disclosure among HIV-uninfected and HIV-infected mothers, separately, and to evaluate the relationship of non-disclosure with uptake of PMTCT interventions. All analyses accounted for facility-level clustering, RESULTS: Overall, 2522 mothers (86% of total study population) met inclusion criteria, 420 (17%) were HIV-infected. Non-disclosure of HIV results to partners was higher among HIV-infected than HIV-uninfected women (13% versus 3% respectively, p < 0.001). HIV-uninfected mothers were more likely to not disclose their HIV status to male partners if they were unmarried (adjusted odds ratio [aOR] = 3.79, 95% CI: 1.56-9.19, p = 0.004), had low (≤KSH 5000) income (aOR = 1.85, 95% CI: 1.00-3.14, p = 0.050), experienced intimate partner violence (aOR = 3.65, 95% CI: 1.84-7.21, p < 0.001) and if their partner did not attend ANC (aOR = 4.12, 95% CI: 1.89-8.95, p < 0.001). Among HIV-infected women, non-disclosure to male partners was less likely if women had salaried employment (aOR = 0.42, 95%CI: 0.18-0.96, p = 0.039) and each increasing year of relationship length was associated with decreased likelihood of non-disclosure (aOR = 0.90, 95% CI: 0.82-0.98, p = 0.015 for each year increase). HIV-infected women who did not disclose their HIV status to partners were less likely to uptake CD4 testing (aOR = 0.32, 95% CI: 0.15-0.69, p = 0.004), to use antiretrovirals (ARVs) during labor (OR = 0.38, 95% CI 0.15-0.97, p = 0.042), or give their infants ARVs (OR = 0.08, 95% CI 0.02-0.31, p < 0.001). CONCLUSION: HIV-infected women were less likely to disclose their status to partners than HIV-uninfected women. Non-disclosure was associated with lower use of PMTCT services. Facilitating maternal disclosure to male partners may enhance PMTCT uptake.


Assuntos
Revelação/estatística & dados numéricos , Infecções por HIV/epidemiologia , Mães/psicologia , Parceiros Sexuais/psicologia , Adulto , Antirretrovirais/uso terapêutico , Feminino , Infecções por HIV/transmissão , Humanos , Lactente , Transmissão Vertical de Doenças Infecciosas/prevenção & controle , Quênia/epidemiologia , Masculino , Serviços de Saúde Materna/estatística & dados numéricos , Mães/estatística & dados numéricos , Gravidez , Complicações Infecciosas na Gravidez/prevenção & controle , Prevalência , Fatores de Risco , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto Jovem
13.
J Genet Couns ; 27(5): 1265-1274, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29556875

RESUMO

When a boy is diagnosed with an X-linked condition such as Duchenne or Becker muscular dystrophy (D/BMD), the mother learns not only of her own potential carrier risk but also that of her daughters. Before the daughters are seen in the Genetics Clinic, responsibility for disclosing carrier risk information falls mainly to their mothers. We know little about if when and how these daughters are being told about their risk, and how mothers find the experience. Should we be doing more to help and support them? Using qualitative methods, six mothers known to the Manchester Centre for Genomic Medicine were interviewed about the disclosure of D/BMD carrier risk information to their daughters. The four key themes that arose are presented: communication process, facilitators of disclosure, barriers to disclosure and support and information. Despite the participants' endeavours to be open and honest with their daughters and their belief that they had fully disclosed, key information was often withheld. Major barriers to discussion of the future, including reproductive options, were apparent. These were partly overcome by the involvement of genetic counsellors (GCs). The participants suggested a greater involvement of GCs, proactively sending appointments and written information, and offering carrier testing more flexibly.


Assuntos
Predisposição Genética para Doença , Relações Mãe-Filho , Mães/psicologia , Distrofia Muscular de Duchenne/genética , Revelação da Verdade , Adolescente , Criança , Emoções , Feminino , Triagem de Portadores Genéticos , Aconselhamento Genético , Testes Genéticos , Pessoal de Saúde , Humanos , Masculino , Distrofia Muscular de Duchenne/psicologia , Pesquisa Qualitativa
14.
BMC Fam Pract ; 19(1): 128, 2018 07 27.
Artigo em Inglês | MEDLINE | ID: mdl-30053841

RESUMO

BACKGROUND: Despite the risks, concussion symptoms often go underreported by athletes, leading to delayed or forgone treatment and increased potential for concussion recurrence. One of the most serious long-term consequences of sports-related concussions is Chronic Traumatic Encephelopathy (CTE), a disorder associated with progressive neurological deterioration. The purpose of this study was to explore former collegiate athletes' understanding of concussions and motivations behind concussion non-disclosure in order to better assist family medicine providers in screening for and managing a history of concussions. METHODS: Informed by the theoretical framework Social Cognitive Theory, we conducted focus groups with former collegiate athletes using a field-tested discussion guide. Discussions were transcribed, coded, and analyzed via content and thematic analyses using NVivo 10 software. RESULTS: Thirty-two former collegiate athletes (24.5 ± 2.9 years old, 59.4% female, 87.5% white) participated in 7 focus groups. Three predominant themes emerged: 1) Concussions are Part of the Game: Participants believed that concussions were part of sports, and that by agreeing to play a sport they were accepting the inherent risk of concussions. Importantly, many were not familiar with concussion symptoms and what constituted a concussion; 2) Hiding Concussion Symptoms: Participants said they often hid concussion symptoms from coaches and trainers in order to avoid being taken out of or missing games. Participants were able to hide their concussions because most symptoms were indiscernible to others; and 3) Misconceptions about Concussions in Low Contact Sports: Several participants did not understand that concussions could occur in all sports including low contact or noncontact sports. The former athletes who participated in low contact sports and experienced concussions attributed their concussions to personal clumsiness rather than their sport. CONCLUSIONS: Family medicine providers as well as coaches, athletic trainers, teachers, and parents/guardians should reinforce the message that concussions can occur in all sports and inform patients about the signs and symptoms of concussions. Further, providers should ask all patients if they engaged in high school or collegiate athletics; and if yes, to describe their hardest hit to their head in order to obtain a complete medical history.


Assuntos
Atletas , Traumatismos em Atletas , Concussão Encefálica , Motivação , Médicos de Família , Revelação da Verdade , Adulto , Encefalopatia Traumática Crônica , Feminino , Grupos Focais , Humanos , Masculino , Programas de Rastreamento , Estados Unidos , Universidades , Adulto Jovem
15.
Support Care Cancer ; 25(3): 811-816, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-27832368

RESUMO

BACKGROUND: Withholding information from cancer patients is a common practice in many Asian countries, including China, Japan, and Singapore, as well as in some Western countries, such as Spain, Greece, and Italy. Much research has investigated why doctors withhold information from cancer patients generally, both in the West and the East, but little research has been done on specifically why Chinese doctors withhold such information. METHODS: Three focus group interviews were conducted with a total of 16 oncologists in China. The interviews were recorded, transcribed, and translated. Qualitative data were analyzed using systematic text condensation. RESULTS: The result of this study revealed numerous circumstances that can lead to non-disclosure of cancer-related information. Many of these circumstances have been described in previous studies about non-disclosure in other countries. We found two additional circumstances that have not been described in previous literature and might therefore expand our current knowledge about this phenomenon; they are contradiction between laws and fear for personal safety. CONCLUSION: Numerous circumstances can lead to non-disclosure of cancer-related information. This study found two additional circumstances that might lead to non-disclosure. The findings of this study suggest further assessment and clarification about the laws that govern doctor-patient communication and that action should be taken to ensure safe working environments for Chinese oncologists.


Assuntos
Acesso à Informação/legislação & jurisprudência , Acesso à Informação/psicologia , Neoplasias/psicologia , Médicos/psicologia , Revelação da Verdade , Adulto , China , Comunicação , Características Culturais , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Direitos do Paciente/legislação & jurisprudência , Relações Médico-Paciente , Pesquisa Qualitativa
16.
BMC Complement Altern Med ; 17(1): 345, 2017 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-28666435

RESUMO

BACKGROUND: Sophisticated conventional medicine (CM) has brought significant advances to cancer prevention, detection, and treatment. However, many cancer patients still turn to complementary and alternative medicine (CAM) treatment. This study explored the prevalence, patterns, and perceived value of CAM among cancer patients. METHODS: This quantitative descriptive study was conducted between March 1, 2015, and July 31, 2015, among a cross-sectional, convenience sample of patients from the Oncology Department of San Fernando General Hospital in Trinidad and Tobago. Face-to-face interviews were conducted at the oncology clinic and treatment suite after obtaining informed consent. Data analysis included descriptive analysis, chi-square tests, and binary logistic regression analysis. RESULTS: The prevalence of CAM use among a sample of 350 cancer patients was 39.1% (39.6% for breast cancer, 44.4% for prostate cancer, 37% for ovarian cancer, and 38.7% for colon cancer patients). Herbs were the most common type of CAM used (93.4%), followed by spiritual therapy (73.7%). CAM use was more prevalent among females (68.6%), Indo-Trinidadians (63.5%), and patients aged 41-50 years (37.2%). The majority (70%-80%) rated CAM efficacy on perceived value. CAM was used mainly because of a desire to try anything that might help (67.6%), followed by it being congruent with the patients' beliefs (59.1%). Patients knew about CAM mainly through friends (69.3%) and family (69.3%). Most patients were generally satisfied (93.6%) and considered CAM helpful (89.8%), but the majority never informed their health care provider of CAM use (78.8%). Patients reported the simultaneous use of more than one type of CAM, without considering or knowing of possible side-effects. The perceived value of CAM included empowerment, control, cure, and improved quality of life. CAM use was associated with age, but no predictors of CAM use could be identified. CONCLUSION: Medicinal herbs and spiritual therapy are commonly used among cancer patients because of perceived benefits and satisfaction. CAM use is more prevalent among females, Indo-Trinidadians, and patients aged 41-50 years old. There are no useful predictors of CAM use. More than one type of CAM is commonly used simultaneously without disclosure to health care providers.


Assuntos
Terapias Complementares/estatística & dados numéricos , Neoplasias/terapia , Adulto , Idoso , Estudos Transversais , Estudos de Avaliação como Assunto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Percepção , Prevalência , Qualidade de Vida , Terapias Espirituais/estatística & dados numéricos , Inquéritos e Questionários , Trinidad e Tobago , Adulto Jovem
17.
Med Law Int ; 16(1-2): 3-26, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-27630453

RESUMO

In ABC v. St Georges Healthcare NHS Trust, the High Court of England and Wales rejected the argument that doctors have a legal duty to disclose actionable genetic risks to a patient's relatives. This article reconsiders the concept of a duty to disclose actionable genetic risks in the context of widening perceptions of legal harm and developing professional and public perceptions of corresponding wrongs.

18.
Clin Genet ; 85(1): 78-86, 2014 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-23350614

RESUMO

This study aims to give an overview of the number of prenatal tests for Huntington's disease (HD), test results, and pregnancy outcomes in the Netherlands between 1998 and 2008 and to compare them with available data from the period 1987 to 1997. A total of 126 couples underwent prenatal diagnosis (PND) on 216 foetuses: 185 (86%) direct tests and 31 (14%) exclusion tests. In 9% of direct tests the risk for the foetus was 25%. Four at-risk parents (4%) carried intermediate alleles. Ninety-one foetuses had CAG expansions ≥36% or 50% risk haplotypes: 75 (82%) were terminated for HD, 12 (13%) were carried to term; four pregnancies were miscarried, terminated for other reasons or lost to follow-up. Unaffected pregnancies (122 foetuses) resulted in the birth of 112 children. The estimated uptake of PND was 22% of CAG expansion carriers (≥36 repeats) at reproductive age. PND was used by two new subgroups: carriers of intermediate alleles and 50% at-risk persons opting for a direct prenatal test of the foetus. A significant number of HD expansion or 50% risk pregnancies were continued. Speculations were made on causative factors contributing to these continuations. Further research on these couples' motives is needed.


Assuntos
Testes Genéticos , Doença de Huntington/diagnóstico , Doença de Huntington/genética , Diagnóstico Pré-Natal , Adulto , Feminino , Aconselhamento Genético , Haplótipos , Heterozigoto , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Gravidez , Resultado da Gravidez , Estudos Retrospectivos , Risco , Expansão das Repetições de Trinucleotídeos
19.
Health SA ; 29: 2381, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38322375

RESUMO

Background: A pertinent issue impacting patient treatment outcomes is the nondisclosure of traditional medicine (TM) use to Allopathic medicine practitioners (AMPs). For years, TM has been a controversial practice, with patients often using it alongside allopathic medicine without disclosing their use. It is imperitive to learn and understand the experiences of AMPs regarding the disclosure of TM use in Gauteng province to enable them to provide the best possible treatment outcomes for patients who use TM. Aim: This study aimed to explore the experiences of AMPs regarding non-disclosure of TM use in Gauteng province. Setting: This study was conducted in four district hospitals where outpatient care and services are rendered in Gauteng Province. Methods: An interpretive phenomenological analysis (IPA) design was followed. Fourteen purposefully sampled AMPs participated in face-to-face, one-on-one, and semi-structured interviews. Interpretive phenomenological analysis in Atlas.ti was conducted. Results: Three themes emerged: bedside manner of AMPs; stigmatising TM use; and individual belief systems. The belief of patients' disclosure hesitancy because of fear of judgment by the AMPs underpinned these themes. Conclusion: Allopathic medicine practitioners are aware that patients who use TM could feel guilty and stigmatised. They acknowledged that patients use TM because of cultural and ethnic reasons, which should not be disregarded. Contribution: The study highlighted that patients do not disclose their TM use because of AMPs' attitudes, stigmatising TM use, and their prejudices against the cultural beliefs of patients. Allopathic medicine practitioners should establish good communication with patients by providing patient-centred communication to facilitate disclosure of TM use.

20.
Psychosoc Interv ; 32(3): 191-201, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37691712

RESUMO

In recent years, suicide rates among bullying victims have raised much concern among educators and health professionals. Suicide is the fourth leading cause of preventable death among adolescents, data that warn about the need to monitor the signs before victims' suicidal behavior to prevent this fatal outcome. In the present study, the role of victims' silence about their victimization situation was analysed, as well as the particular impact of family and school environments. More specifically, we examined the mediating role of the victim's non-disclosure between the parental styles (observing the father's and mother's roles separately) and the school climate, concerning suicidal ideation in victims. The sample consisted of 2,977 adolescents (48.5% boys), aged 11-17 years (M = 14.1, SD = 1.42), of whom 635 (21.3%) reported having been victims of bullying in the past year. The results showed that parental styles of rejection and indifference were positively related to victims' non-disclosure of bullying and suicidal ideation. Conversely, a positive school climate showed a negative relationship with victims' disclosure of the bullying situation and suicidal ideation. The findings also indicated that non-disclosure mediates the relationship between the mother's parental style and suicidal ideation. These findings expand knowledge about the role of bullying victims' social context and the variable disclosure with regards to suicidal ideation in adolescents victimized by peers at school.


En los últimos años, el índice de suicidio entre las víctimas de acoso escolar ha generado mucha preocupación en los educadores y los profesionales de la salud. El suicidio es la cuarta causa de muerte prevenible entre los adolescentes, datos que alertan sobre la necesidad de vigilar los signos ante la conducta suicida de las víctimas para prevenir el fatal desenlace. En el presente estudio se analizó el papel del silencio de las víctimas en su victimización, así como el impacto particular del entorno familiar y escolar. Más concretamente, se analizó el papel mediador del silencio de la víctima entre los estilos parentales (considerando el rol del padre y de la madre por separado) y el clima escolar en la ideación suicida en las víctimas. La muestra constaba de 2,977 adolescentes (48.5% varones), en edades comprendidas entre 11 y 17 años (M = 14.1, DT = 1.42), de los cuales 635 (21.3%) indicaron haber sido víctimas de acoso escolar en el último año. Los resultados mostraron que los estilos parentales de rechazo e indiferencia se relacionaban positivamente con el silencio de las víctimas y la ideación suicida. Por el contrario, un clima escolar positivo mostraba una relación negativa con la revelación de la situación de acoso y la ideación suicida de los estudiantes victimizados. Los hallazgos también indican que el silencio de las víctimas media la relación entre el estilo parental de la madre y la ideación suicida. Estos resultados amplían el conocimiento del papel del contexto social de las víctimas de acoso y de la variable silencio con respecto a la ideación suicida en adolescentes victimizados en la escuela por compañeros.


Assuntos
Bullying , Suicídio , Masculino , Humanos , Adolescente , Feminino , Ideação Suicida , Meio Social , Instituições Acadêmicas
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