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1.
Bioethics ; 38(5): 460-468, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38470400

RESUMO

This article argues for a ban on the performance of medically unnecessary genital normalizing surgeries as part of assigning a binary sex/gender to infants with intersex conditions on the basis of autonomy, regardless of etiology. It does this via a dis/analogy with the classic case in bioethics of Jehovah Witness (JW) parents' inability to refuse life-saving blood transfusions for their minor children. Both cases address ethical medical practice in situations where parents are making irreversible medical decisions on the basis of values strongly held, identity, and relationship-shaping values-such as religious beliefs or beliefs regarding the inherent value of binary sex/gender-amidst ethical pluralism. Furthermore, it takes seriously-as we must in the intersex case-that the restriction of parents' right to choose will likely result in serious harms to potentially large percentage of patients, their families, and their larger communities. I address the objection that parents' capacity to choose is restricted in the JW case on the basis of the harm principle or a duty to nonmaleficence, given that the result of parent choice would be death. I provide evidence that this is mistaken from how we treat epistemic uncertainty in the JW case and from cases in which clinicians are ethically obligated to restrict the autonomy of nonminor patients. I conclude that we restrict the parents' right to choose in the JW case-and should in the case of pediatric intersex surgery-to secure patient's future autonomy.


Assuntos
Transfusão de Sangue , Transtornos do Desenvolvimento Sexual , Testemunhas de Jeová , Pais , Autonomia Pessoal , Humanos , Transfusão de Sangue/ética , Masculino , Feminino , Transtornos do Desenvolvimento Sexual/cirurgia , Recusa do Paciente ao Tratamento/ética , Cirurgia de Readequação Sexual/ética , Lactente , Criança , Religião e Medicina , Tomada de Decisões/ética , Consentimento dos Pais/ética
2.
JAMA Netw Open ; 6(12): e2346858, 2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-38079173

RESUMO

Importance: Ensuring valid informed consent (IC) prior to enrollment in clinical trials is a fundamental ethical right. Objective: To assess whether social determinants of health (SDOH) and related sociocontextual factors are associated with parental IC comprehension in therapeutic childhood cancer clinical trials. Design, Setting, and Participants: This cross-sectional study prospectively enrolled 223 parents of children with newly diagnosed cancer at Rady Children's Hospital San Diego, a large quaternary academic center in California, from October 1, 2014, to March 31, 2021. Linear mixed effects models were used to assess whether IC comprehension overall and by domain (purpose, procedures, and randomization; risks and benefits; alternatives; and voluntariness) were associated with SDOH and sociocontextual factors. Data were analyzed from January 1, 2022, to July 31, 2023. Exposures: Informed consent for a therapeutic childhood cancer clinical trial. Main Outcomes and Measures: The primary outcome of interest was IC comprehension and its associations with SDOH (marital status, language, educational attainment, employment, insurance type, socioeconomic status, and health literacy) and sociocontextual factors (ethnicity, satisfaction with informed consent, and cancer type). Results: Of 223 parents, 172 (77.1%) were aged 18 to 44 years, 111 (49.8%) were Hispanic, 152 (68.2%) were women, and 163 (73.1%) were married. In terms of race, 2 (0.9%) were American Indian or Alaska Native, 22 (9.9%) were Asian or Pacific Islander, 8 (3.6%) were Black, 149 (66.8%) were White, and 42 (18.8%) were more than 1 race. In multivariable linear mixed-effects analyses, limited vs adequate health literacy was associated with lower comprehension of informed consent overall (mean [SD], 68.28 [11.81] vs 79.24 [11.77]; ß estimate, -9.02 [95% CI, -12.0 to -6.07]; P < .001) and with lower comprehension of the purpose, procedures, and randomization (mean [SD], 65.00 [12.64] vs 76.14 [11.53]; ß estimate, -7.87 [95% CI, -10.9 to -4.85]; P < .001); risks and benefits (mean [SD], 62.84 [20.24] vs 73.14 [20.86]; ß estimate, -10.1 [95% CI, -15.6 to -4.59]; P < .001); alternatives (mean [SD], 54.27 [43.18] vs 82.98 [34.24]; ß estimate, -14.3 [95% CI, -26.1 to -2.62]; P .02); and voluntariness (mean [SD], 76.52 [24.33] vs 95.39 [13.89]; ß estimate, -9.14 [95% CI, -14.9 to -3.44]; P = .002) domains. Use of Spanish vs English language for medical communication was associated with lower comprehension overall (mean [SD], 66.45 [12.32] vs 77.25 [12.18]; ß estimate, -5.30 [95% CI, -9.27 to -1.34]; P = .01) and with lower comprehension of the purpose, procedures, and randomization (mean [SD], 63.33 [11.98] vs 74.07 [12.52]; ß estimate, -4.33 [95% CI, -8.43 to -0.23]; P = .04) and voluntariness (mean [SD], 70.83 [24.02] vs 92.54 [17.27]; ß estimate, -9.69 [95% CI, -16.8 to -2.56]; P = .009) domains. Conclusions and Relevance: In this cross-sectional study including parents of children with newly diagnosed cancer who provided IC for their child's participation in a therapeutic clinical trial, limited health literacy and use of Spanish language for medical communication were associated with lower comprehension of IC. These findings suggest that, in this setting, parents with limited health literacy or those who use Spanish language for medical communication may not fully comprehend IC and therefore may not make truly informed decisions. These findings support the investigation of interventions, across pediatric disciplines, tailored to the participant's language and health literacy level to improve IC comprehension, particularly in racial and ethnic minority populations.


Assuntos
Compreensão , Neoplasias , Criança , Feminino , Humanos , Masculino , Estudos Transversais , Etnicidade , Consentimento Livre e Esclarecido , Grupos Minoritários , Neoplasias/terapia , Consentimento dos Pais , Determinantes Sociais da Saúde , Ensaios Clínicos como Assunto
4.
Am J Public Health ; 113(4): 397-407, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36730879

RESUMO

Objectives. To assess changes in minor consent laws for sexually transmitted infection (STI) and HIV testing, treatment, and prevention services in all 50 US states and the District of Columbia from 1900 to 2021. Methods. We coded laws into minor consent for (1) health care generally; (2) STI testing, treatment, and prevention; (3) HIV testing, treatment, and prevention; and (4) pre- or postexposure prophylaxis for HIV prevention. We also coded confidentiality protections and required conditions (e.g., threshold clinician judgments). Results. The largest increase in states allowing minors to consent to STI services occurred during the 1960s and 1970s. By 2021, minors could consent independently to STI and HIV testing and treatment in all 50 states plus DC, STI prevention services in 32 jurisdictions, and HIV prevention services in 33 jurisdictions. Confidentiality protections for minors are rare. Prerequisites are common. Conclusions. Although the number of states allowing minors to consent independently to STI and HIV services has increased considerably, these laws have substantial limitations, including high complexity, prerequisites requiring clinician judgments, and neglect of confidentiality concerns. (Am J Public Health. 2023;113(4):397-407. https://doi.org/10.2105/AJPH.2022.307199).


Assuntos
Infecções por HIV , Infecções Sexualmente Transmissíveis , Humanos , Estados Unidos , Infecções por HIV/prevenção & controle , HIV , Infecções Sexualmente Transmissíveis/diagnóstico , Infecções Sexualmente Transmissíveis/prevenção & controle , Consentimento dos Pais , District of Columbia
5.
Paediatr Anaesth ; 33(1): 52-58, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36168810

RESUMO

INTRODUCTION: The Plethysmographic Variability Index can be measured by both finger and forehead probes. Vasoconstriction may jeopardize the reliability of finger PVI measurements in pediatric patients undergoing surgery. However, forehead vasculature exhibits more marked resistance to alterations in the vasomotor tonus. OBJECTIVE: Our aim was to compare the Plethysmographic Variability Index measured via finger or forehead probes in mechanically ventilated pediatric surgery patients in terms of their ability to predict fluid responsiveness as well as to determine the best cut-off values for these two measurements. MATERIALS AND METHODS: A total of 50 pediatric patients undergoing minor elective surgery were included after provision of parental consent and ethics committee approval. Perfusion index measured at the finger or forehead and Plethysmographic Variability Index monitoring comprised the primary assessments. Hemodynamic parameters monitored included perfusion index, Plethysmographic Variability Index, and cardiac output. A ≥ 15% increase in cardiac output following passive leg raise maneuver was considered to show fluid responsiveness. Two groups were defined based on fluid responsiveness: Group R (responsive) and Group NR (non-responsive). Student's t-test, Mann-Whitney U test, DeLong test, and ROC were used for statistical analysis. RESULTS: The area under curve for finger and forehead Plethysmographic Variability Index prior to passive leg raise maneuver were 0.699 (p = .011) and 0.847 (p < .001), respectively. The sensitivity for finger and forehead measurements at a cut-off value of ≤14% was 92.9% and 96.4%, and 45.4% and 72.7%, respectively. CONCLUSION: Although forehead and finger Plethysmographic Variability Index monitoring were similarly sensitive in predicting fluid responsiveness in pediatric surgical patients, the former method provided higher specificity. The best cut-off value for PVI measurements with forehead and finger probes was found to be 14%.


Assuntos
Consentimento dos Pais , Projetos de Pesquisa , Criança , Humanos , Reprodutibilidade dos Testes
6.
Arq. ciências saúde UNIPAR ; 27(3): 1457-1476, 2023.
Artigo em Português | LILACS | ID: biblio-1426470

RESUMO

Crianças e adolescentes usam a tecnologia móvel para diversas finalidades, como lazer, entretenimento, estudos e comunicação. No entanto, faz-se necessário o controle e mediação parental pois o uso inadequado pode gerar danos à saúde. Existem aplicativos voltados para esta tarefa e com funcionalidades e características variadas. Diante disso, este estudo teve como objetivo analisar as aplicações móveis disponíveis para download na plataforma Google Play Store por meio de uma revisão narrativa e com auxílio do software IRAMUTEQ para revisão dos dados, analisar os comentários deixados pelos usuários. Foram investigadas as informações de 138 aplicativos, boa parte deles realizam funções essenciais, como controlar o tempo de acesso, bloquear sites e apps indesejados, porém, há muitas críticas relacionadas a problemas técnicos, aplicabilidade e prejuízos gerados pelo excessivo controle dos pais. A investigação mostrou que cinco softwares para o controle parental apresentavam as principais funções de acordo com a aplicabilidade (limite de tempo, filtros, localizador GPS, monitoramento de chamadas e mensagens), nota acima de 3,0 e ano de atualização em 2021. A análise dos comentários feita pelo software IRAMUTEQ, destacou as palavras "App" (referente à aplicativo), "filho", "celular", "bloquear", "funcionar", "criança", "instalar" e "desinstalar" como as mais importantes pelos usuários.


Children and teenagers use mobile technology for different purposes, such as leisure, entertainment, studies and communication. However, parental control and mediation is necessary, as inappropriate use can cause health damage. There are applications aimed at this task and with varied functionalities and characteristics. Therefore, this study aimed to analyze the mobile applications available for download on the Google Play Store platform through a narrative review and with the help of the IRAMUTEQ software to review the data, analyze the comments left by users. Information from 138 applications was investigated, most of which perform essential functions, such as controlling access time, blocking unwanted websites and apps, however, there are many criticisms related to technical problems, applicability and damage caused by excessive parental control. The investigation showed that five parental control software had the main functions according to applicability (time limit, filters, GPS locator, call and message monitoring), grade above 3.0 and year of update in 2021. The analysis of the comments made by the IRAMUTEQ software, highlighted the words "App" (referring to the application), "son", "cell phone", "block", "work", "child", "install" and "uninstall" as the most important for users.


Los niños y adolescentes utilizan la tecnología móvil para diferentes fines, como el ocio, el entretenimiento, los estudios y la comunicación. Sin embargo, es necesario el control y la mediación parental, ya que un uso inadecuado puede causar daños a la salud. Existen aplicaciones destinadas a esta tarea y con funcionalidades y características variadas. Por lo tanto, este estudio tuvo como objetivo analizar las aplicaciones móviles disponibles para su descarga en la plataforma Google Play Store a través de una revisión narrativa y con la ayuda del software IRAMUTEQ para revisar los datos, analizar los comentarios dejados por los usuarios. Se investigó la información de 138 aplicaciones, la mayoría de las cuales cumplen funciones esenciales, como controlar el tiempo de acceso, bloquear sitios web y apps no deseadas, sin embargo, existen muchas críticas relacionadas con problemas técnicos, de aplicabilidad y daños causados por el excesivo control parental. La investigación mostró que cinco programas de control parental tenían las funciones principales según aplicabilidad (límite de tiempo, filtros, localizador GPS, monitorización de llamadas y mensajes), grado superior a 3.0 y año de actualización en 2021. El análisis de los comentarios realizados por el software IRAMUTEQ, destacó las palabras "App" (refiriéndose a la aplicación), "hijo", "móvil", "bloquear", "trabajar", "niño", "instalar" y "desinstalar" como las más importantes para los usuarios.


Assuntos
Humanos , Masculino , Feminino , Consentimento dos Pais , Aplicativos Móveis , Software/tendências , Criança , Comportamento do Adolescente , Telefone Celular/instrumentação , Smartphone/instrumentação
8.
Dev World Bioeth ; 22(3): 140-151, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-33605030

RESUMO

Pediatric cancer is accompanied by many ethical challenges, particularly those related to respecting the child's opinion and parental responsibility and consent. Questionnaires were collected from 400 participants, from four equal groups: doctors, nurses, parents and medical students, from three cities in Saudi Arabia, about three problematic issues which revolve around the mandatory consent of one or both parents, the extent of a child's assent, and the acceptable form of consent and assent. Despite the diversity of the participants' cultural backgrounds, most preferred both parents to give consent, followed by either parent without differentiation between parents, which reinforced a trend towards more gender equality. The majority of participants preferred that parental consent forms be detailed enough to obtain the maximum information, while others chose medium-size consent forms; a large majority preferred that the form seeking to obtain the assent of the child with cancer be short, reflecting their desire not to increase the burden on the child, in addition to the fact that the final decision belongs to the parents rather than the child. Most participants preferred to rely on a child's level of maturity rather than having reached a certain age so that they could give assent, while the rest considered the age of 13-14 as a suitable age. These findings reflect an increasing ethical awareness regarding parental consent and child assent, and they can be formulated in a recommendation for a more ethical practice in the field of childhood cancer and pediatrics in general.


Assuntos
Consentimento Livre e Esclarecido , Neoplasias , Criança , Tomada de Decisões , Humanos , Consentimento dos Pais , Pais , Arábia Saudita , Inquéritos e Questionários
9.
BMJ Open ; 11(7): e044980, 2021 07 07.
Artigo em Inglês | MEDLINE | ID: mdl-34233969

RESUMO

OBJECTIVES: To test the impact on inequalities and uptake of the schools-based human papillomavirus (HPV) vaccination programme by stage of implementation of a new policy providing additional opportunities to consent. SETTING: Two local authorities in the south-west of England. PARTICIPANTS: Young women (n=7129) routinely eligible for HPV vaccination aged 12-13 years during the intervention period (2017/2018 to 2018/2019 programme years). INTERVENTIONS: Local policy change that included additional opportunities to provide consent (parental verbal consent and adolescent self-consent). OUTCOMES: Secondary analyses of cross-sectional intervention data were undertaken to examine uptake by: (1) receipt of parental written consent forms and; (2) percentage of unvaccinated young women by stage of implementation. RESULTS: During the intervention period, 6341 (89.0%) eligible young women initiated the HPV vaccination series. Parental written consent forms were less likely to be returned where young women attended alternative education provider settings (p<0.001), belonged to non-white British ethnic groups (p<0.01) or more deprived quintiles (p<0.001). Implementation of parental verbal consent and adolescent self-consent reduced the percentage of unvaccinated young women from 21.3% to 16.5% (risk difference: 4.8%). The effect was greater for young women belonging to the most deprived compared with the least deprived quintile (risk difference: 7.4% vs 2.3%, p<0.001), and for young women classified as Unknown ethnic category compared with white British young women (6.7% vs 4.2%, p<0.001). No difference was found for non-white British young women (5.4%, p<0.21). CONCLUSIONS: Local policy change to consent procedures that allowed parents to consent verbally and adolescents to self-consent overcame some of the barriers to vaccination of young women belonging to families less likely to respond to paper-based methods of gaining consent and at greater risk of developing cervical cancer. TRIAL REGISTRATION NUMBER: 49 086 105.


Assuntos
Alphapapillomavirus , Infecções por Papillomavirus , Vacinas contra Papillomavirus , Neoplasias do Colo do Útero , Adolescente , Estudos Transversais , Inglaterra , Feminino , Humanos , Infecções por Papillomavirus/prevenção & controle , Consentimento dos Pais , Aceitação pelo Paciente de Cuidados de Saúde , Políticas , Instituições Acadêmicas , Neoplasias do Colo do Útero/prevenção & controle , Vacinação
10.
Rev. habanera cienc. méd ; 20(2): e3440, mar.-abr. 2021. graf
Artigo em Espanhol | LILACS, CUMED | ID: biblio-1251802

RESUMO

Introducción: El consentimiento informado en Pediatría, es un proceso de toma de decisiones progresivo, consensuado y dialogado, centrado en una relación tripartita (pediatra, niño y padres), en virtud de la cual, estos últimos, aceptan o no las acciones de vacunación, las cuales han mejorado la prevención de distintas enfermedades infecciosas que afectan la salud de la población infantil y provocan gran morbilidad, mortalidad y secuelas. Objetivo: Exponer los principales aspectos bioéticos relacionados con el consentimiento informado en el uso de las vacunas en Pediatría. Material y Métodos: Se realizó una revisión de la literatura en español e inglés acerca del tema utilizando motores de búsqueda como Google Académico, y se consultaron 42 artículos de libre acceso en las bases de datos SciELO y Pubmed. Se analizó la bibliografía de los últimos 20 años, fundamentalmente de los últimos 5 años, desde 2000 hasta 2020. Desarrollo: Las vacunas son intervenciones preventivas que tienen una historia centenaria que demuestra su bondad y su eficacia, pero han planteado problemas éticos desde su comienzo. El consentimiento informado para su administración no se implementa con el mismo rigor en todas las regiones del mundo. Conclusiones: La vacunación en Pediatría constituye una práctica frecuente, por lo que es necesario el uso del consentimiento informado debidamente redactado y autorizado por los tutores legales o el paciente, que incluya la explicación de los propósitos, los procedimientos a que será sometido, los posibles daños y beneficios, y los posibles resultados de la misma(AU)


Introduction: Informed consent in Pediatrics is a progressive, consensual and dialogue-based decision-making process focused on a tripartite relationship (pediatrician-child-parents), under which the latter accept or do not accept the actions towards vaccination that have improved the prevention of different infectious diseases that affect the health of the child population and cause great morbidity, mortality and sequelae. Objective: To state the main bioethical aspects related to informed consent for the use of vaccines in Pediatrics. Material and Methods: A review of literature on the topic in Spanish and English was carried out using search engines such as Google Scholar. Also, 42 open access articles were consulted in the SciELO and Pubmed databases. The bibliography of the last 20 years was analyzed. It mainly included articles published during the last 5 years (from 2000 to 2020). Development: Vaccines are preventive interventions that have a centuries-old history that demonstrates their goodness and effectiveness, but have posed ethical problems since the very beginning. Informed consent for their administration is not implemented with the same rigor in all regions of the world. Conclusions: Vaccination in Pediatrics is a frequent practice, so a duly drafted informed consent authorized by the legal guardians or the patient is necessary. It should include the explanation of the aims, the procedures to which the patient will be submitted, the possible damages and benefits, and the possible results(AU)


Assuntos
Humanos , Masculino , Feminino , Recém-Nascido , Lactente , Pré-Escolar , Criança , Pais/educação , Pacientes , Pediatria , Controle de Doenças Transmissíveis/métodos , Vacinação/ética , Consentimento Livre e Esclarecido/ética , Tomada de Decisões , Consentimento dos Pais/ética
11.
Pediatr Blood Cancer ; 68(4): e28907, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33501773

RESUMO

BACKGROUND: Within pediatric oncology, parental decision making regarding participation in clinical trials that aim to reduce therapy to mitigate side effects is not well studied. The recently completed Children's Oncology Group trial for standard-risk acute lymphoblastic leukemia (AALL0932) included a reduction in maintenance therapy, and required consent for randomization immediately prior to starting maintenance. At our institution, 40% of children enrolled on AALL0932 were withdrawn from protocol therapy prior to randomization due to parental choice. This study sought to identify factors that impacted parental decision making regarding randomization on AALL0932. PROCEDURE: Parents of children enrolled on AALL0932 at our institution were eligible if their child met criteria for the average-risk randomization. Parents were invited to participate in a 30-50-minute phone interview. Questions focused on factors that shaped parental decision making about randomization, as well as their perspectives about the clinical trial experience more generally. RESULTS: Fear of receiving less therapy and subsequent relapse was the predominant reason to decline randomization. Reasons given for consenting to randomization included trust in the physician, altruism, hope for less therapy, and potential for fewer side effects. Parents also reflected on ways to support future families making decisions about clinical trial participation. CONCLUSION: While many parents recognize the importance of clinical trials aiming to mitigate side effects, the fear of their own child relapsing with less than standard therapy may dissuade them from study participation. Recognizing and addressing these concerns will be important for enrollment and retention in future clinical trials.


Assuntos
Consentimento dos Pais , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Adulto , Antineoplásicos/efeitos adversos , Antineoplásicos/uso terapêutico , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Quimioterapia de Manutenção/efeitos adversos , Quimioterapia de Manutenção/métodos , Masculino , Pais , Leucemia-Linfoma Linfoblástico de Células Precursoras/epidemiologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Medição de Risco , Adulto Jovem
12.
Paediatr Anaesth ; 31(4): 397-403, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33386692

RESUMO

When adolescents require health care, the need to obtain consent from the parent/legal guardian and assent from the patient can create the potential for an ethical dilemma when these two parties are not in agreement. Here, we describe a representative and common case scenario in which both parent and adolescent patient gave consent and assent, respectively, with a full understanding of the risks and benefits of the procedure and anesthetic. At the time of anesthetic induction, however, the patient expresses that she no longer wishes to have the procedure. We identify a number of considerations that inform the ethical analysis of such cases and offer recommendations about the most appropriate path forward for a practitioner faced with a difficult decision about how to respond.


Assuntos
Anestesia , Dissidências e Disputas , Adolescente , Feminino , Humanos , Consentimento Livre e Esclarecido , Consentimento dos Pais , Pais
14.
Otolaryngol Head Neck Surg ; 165(2): 354-359, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33290169

RESUMO

OBJECTIVE: To assess the relationship between depression, anxiety, stress, worry, intolerance of uncertainty (IU), and shared decision making (SDM) in parents of pediatric otolaryngology surgical patients with their perceptions of decisional conflict (DC). STUDY DESIGN: Cross-sectional. SETTING: Academic pediatric otolaryngology outpatient clinic. METHODS: Participants were legal guardians of pediatric patients who met criteria for otolaryngologic surgery. Participants completed a demographic survey as well as validated Decisional Conflict Scale (DCS); Shared Decision-Making Scale (SDMS); Depression, Anxiety and Stress Scale-21 (DASS-21); Penn State Worry Questionnaire (PSWQ); and short form of the Intolerance of Uncertainty Scale (IUS-12). RESULTS: A total of 114 participants were enrolled. Respondents were predominantly female (93.0%) and married (60.5%). Most guardians had not consented previously for otolaryngologic surgery for their child (69.3%). Participants reported low levels of DC and depression as well as moderate levels of anxiety and stress. DC scores were not significantly correlated to DASS-21, PSWQ, or SDM. IUS-12 Total and subscale IUS-12 prospective negatively correlated with Total DC. DC was not related to age, sex, education level, previous otolaryngologic surgery, or type of surgery recommended. CONCLUSION: In this group, an association was found between IU and DC. Clinicians should be aware that DC is not modified by previous surgical experience. Interventions aimed at addressing parental IU related to surgery may reduce DC. Further research efforts could help us understand how mental health relates to surgical decision making.


Assuntos
Conflito Psicológico , Tomada de Decisões , Procedimentos Cirúrgicos Otorrinolaringológicos , Pais/psicologia , Incerteza , Adolescente , Adulto , Ansiedade/psicologia , Criança , Estudos Transversais , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Consentimento dos Pais/psicologia , Fatores Socioeconômicos , Estresse Psicológico/psicologia , Inquéritos e Questionários , Adulto Jovem
15.
Vaccine ; 38(47): 7472-7478, 2020 11 03.
Artigo em Inglês | MEDLINE | ID: mdl-33041101

RESUMO

BACKGROUND: Human Papillomavirus (HPV) vaccination programmes have the potential to reduce the incidence of cervical cancer. The preferred age for HPV vaccination is 12-13 years for optimal benefit. The legal framework in England allows adolescents to be vaccinated without parental consent if they are assessed as competent. A 'South West Template Pathway on Self Consent for School Aged Immunisations' was developed to improve uptake of immunisations in south-west England. STUDY AIM: To examine how acceptable the new procedures are to the young women, parents and carers, school staff and immunisation nurses involved. METHODS: The research was undertaken in two local authorities in south-west England during the 2017/18 and 2018/19 programme years. Semi-structured digitally recorded interviews were undertaken with 53 participants: one health service manager, three immunisation nurses, five staff at alternative education providers, three staff at mainstream schools, 19 young women and 22 parents. All recordings were transcribed verbatim and thematic analysis was undertaken, assisted by NVivo software. RESULTS: Most participants were not fully aware of the legal framework that enables a young person to self-consent to vaccination. There was a strong presumption that parents should make decisions affecting the health of their children. The preferred age at which the HPV vaccination is administered (12-13 years) contributed to reluctance in endorsing self-consent which was thought to have the potential to break down trust between parents and school staff, and within families. In practice, formal self-consent was rare. CONCLUSION: Unresolved issues in relation to adolescent self-consent include public and professional perceptions of young people's rights and abilities to take responsibility for decisions affecting their health, and concerns about the impact of self-consent on relationships both within families and between professionals and the families they serve.


Assuntos
Infecções por Papillomavirus , Vacinas contra Papillomavirus , Neoplasias do Colo do Útero , Adolescente , Criança , Inglaterra , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Infecções por Papillomavirus/prevenção & controle , Consentimento dos Pais , Pais , Aceitação pelo Paciente de Cuidados de Saúde , Neoplasias do Colo do Útero/prevenção & controle , Vacinação
16.
Rev. cuba. enferm ; 36(3): e3442, tab, graf
Artigo em Espanhol | CUMED, LILACS, BDENF | ID: biblio-1280274

RESUMO

Introducción: La anemia infantil es un problema de salud pública que afecta el desarrollo fisiológico e intelectual del niño. Objetivo: Evaluar el efecto de la ingesta de galletas fortificadas con sangre bovina en los niveles de hemoglobina de niños anémicos. Métodos: Estudio cuasi experimental, con grupo experimental y control, en la zona rural del distrito de San Andrés de Tupicocha de Huarochiri de Lima, Perú, desde agosto hasta diciembre de 2018. La población fue de 46 niños de 3 a 5 años de edad, de la que participaron 32 (consentimiento de los padres), de ellos 15 niños tuvieron hemoglobina < 11 g/dl, quienes conformaron el grupo experimental; mientras que 17 niños con hemoglobina > 11 g/dl, conformaron el grupo control. Se utilizó la prueba estadística T de Student (p < 0,05). Resultados: En el grupo experimental, después de 12 semanas de ingesta de galletas fortificadas con sangre bovina, se observó un incremento de hemoglobina en sangre de 10,4 g/dl a 11,6 g/dl (p < 0,001); mientras que el grupo control, también registró un incremento de 11,7 g/dl a 12,1 g/dl (p = 0,007). Al comparar el incremento de hemoglobina de ambos grupos, se observa que en el grupo control la hemoglobina solo ascendió en 0,5 g/dl, mientras que en el grupo experimental ascendió en 1,2 g/dl, siendo así el incremento mayor en el grupo experimental que consumió las galletas fortificadas (p = 0,003). Conclusión: La ingesta de galletas fortificadas con sangre bovina incrementó los niveles de hemoglobina en niños de una zona rural, reduciendo así los casos de anemia infantil(UA)


Introduction: Childhood anemia is a public health concern that affects the physiological and intellectual development of the child. Objective: To evaluate the effect of ingesting cookies fortified with bovine blood on the hemoglobin levels of anemic children. Methods: Quasiexperimental study carried out with experimental and control groups, in the rural area of San Andrés de Tupicocha de Huarochiri district of Lima, Peru, from August to December 2018. The study population consisted of 46 children aged 3-5 years, of which 32 participated under parental consent and 15 had hemoglobin lower than 11 g/dL. These made up the experimental group. On the other hand, 17 children had hemoglobin higher than 11 g/dL. These made up the control group. The Student's t-test was used (P< 0.05). Results: In the experimental group, 12 weeks after ingestion of cookies fortified with bovine blood, an increase in hemoglobin in the blood was observed, from 10.4 g/dL to 11.6 g/dL (P< 0.001); while the control group also registered an increase, from 11.7 g/dL to 12.1 g/dL (P=0.007). When comparing the increase in hemoglobin between both groups, it is observed that, in the control group, hemoglobin only rose by 0.5 g/dL, while, in the experimental group, it rose by 1.2 g/dL. Thus, the highest increase appeared in the experimental group that consumed the fortified cookies (P = 0.003). Conclusion: The ingestion of cookies fortified with bovine blood increased hemoglobin levels in children in a rural area, thus reducing the cases of childhood anemia(AU)


Assuntos
Humanos , Pré-Escolar , Hemoglobinas/efeitos adversos , Bovinos/sangue , Anemia Ferropriva/terapia , Biscoitos , Consentimento dos Pais , Ingestão de Alimentos
17.
Pediatrics ; 146(Suppl 1): S3-S8, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32737225

RESUMO

One of the earliest controversies in the modern history of bioethics was known at the time as "the Hopkins Mongol case," involving an infant with Trisomy 21 and duodenal atresia whose parents declined to consent to surgery. Fluids and feeding were withheld, and the infant died of dehydration after 15 days. The child's short life had a profound impact on the author's career and that of several others and ultimately led to changes in the care of children and adults with disabilities and the way difficult end-of-life decisions are made in US hospitals today. It also contributed to the growth of the modern bioethics movement and scholarship focused on pediatric bioethics issues.


Assuntos
Temas Bioéticos , Tomada de Decisão Clínica/ética , Síndrome de Down/terapia , Pediatria/ética , Suspensão de Tratamento/ética , Comitês Consultivos/ética , Temas Bioéticos/história , Temas Bioéticos/legislação & jurisprudência , Crianças com Deficiência/legislação & jurisprudência , Síndrome de Down/história , Atresia Esofágica/história , Atresia Esofágica/terapia , Fundações , História do Século XX , Humanos , Recém-Nascido , Consentimento dos Pais/ética , Consentimento dos Pais/legislação & jurisprudência , Pais , Pediatria/legislação & jurisprudência , Assistência Terminal/ética , Suspensão de Tratamento/legislação & jurisprudência
18.
Pediatrics ; 146(Suppl 1): S13-S17, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32737227

RESUMO

Although parents are typically the most appropriate decision-makers for their children, there are limits to this authority. Medical providers may be ethically obligated to seek state intervention against a parental decision if the parent places a child at significant and imminent risk of serious harm. When parents make medical decisions for their children, they assess both the projected benefits and risks of their choices for their family. These assessments are impacted by uncertainty, which is a common feature of neonatal intensive care. The relative presence or absence of uncertainty may impact perceptions of parental decisions and a medical provider's decision to seek state intervention to overrule parents. In this article, we propose a model integrating prognostic uncertainty into pediatric decision-making that may aid providers in such assessments. We will demonstrate how to apply this model to 3 neonatal cases and propose that the presence of greater uncertainty ought to permit parents greater latitude to incorporate family values into their decision-making even if these decisions are contradictory to the recommendations of the medical team.


Assuntos
Temas Bioéticos , Tomada de Decisão Clínica/ética , Pais , Incerteza , Família , Feminino , Idade Gestacional , Humanos , Hipóxia-Isquemia Encefálica/etiologia , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Masculino , Cuidados Paliativos , Consentimento dos Pais/ética , Prognóstico , Estenose da Valva Pulmonar/cirurgia , Valores Sociais , Suspensão de Tratamento/ética
19.
Pediatrics ; 146(Suppl 1): S33-S41, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32737230

RESUMO

Cases of adolescents in organ failure who refuse solid organ transplant are not common, but several have been discussed in the media in the United States and the United Kingdom. Using the framework developed by Buchanan and Brock for surrogate decision-making, I examine what role the adolescent should morally play when deciding about therapy for life-threatening conditions. I argue that the greater the efficacy of treatment, the less voice the adolescent (and the parent) should have. I then consider how refusals of highly effective transplant cases are similar to and different from refusals of other lifesaving therapies (eg, chemotherapy for leukemia), which is more commonly discussed in the media and medical literature. I examine whether organ scarcity and the need for lifelong immunosuppression justify differences in whether the state intervenes when an adolescent and his or her parents refuse a transplant. I argue that the state, as parens patriae, has an obligation to provide the social supports needed for a successful transplant and follow-up treatment plan, although family refusals may be permissible when the transplant is experimental or of low efficacy because of comorbidities or other factors. I conclude by discussing the need to limit media coverage of pediatric treatment refusals.


Assuntos
Temas Bioéticos , Meios de Comunicação de Massa/ética , Transplante de Órgãos/ética , Consentimento dos Pais/ética , Recusa do Paciente ao Tratamento/ética , Adolescente , Família , Feminino , Humanos , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/legislação & jurisprudência , Masculino , Transplante de Órgãos/legislação & jurisprudência , Consentimento dos Pais/legislação & jurisprudência , Participação do Paciente , Patient Self-Determination Act , Ética Baseada em Princípios , Recusa do Paciente ao Tratamento/legislação & jurisprudência , Gêmeos Monozigóticos , Reino Unido , Estados Unidos
20.
Pediatrics ; 145(2)2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31974217

RESUMO

Many transgender and gender-diverse people have a gender identity that does not conform to the binary categories of male or female; they have a nonbinary gender. Some nonbinary individuals are most comfortable with an androgynous gender expression. For those who have not yet fully progressed through puberty, puberty suppression with gonadotrophin-releasing hormone agonists can support an androgynous appearance. Although such treatment is shown to ameliorate the gender dysphoria and serious mental health issues commonly seen in transgender and gender-diverse young people, long-term use of puberty-suppressing medications carries physical health risks and raises various ethical dilemmas. In this Ethics Rounds, we analyze a case that raised issues about prolonged pubertal suppression for a patient with a nonbinary gender.


Assuntos
Disforia de Gênero/tratamento farmacológico , Consentimento Informado por Menores/ética , Consentimento dos Pais/ética , Puberdade/efeitos dos fármacos , Moduladores Seletivos de Receptor Estrogênico/uso terapêutico , Minorias Sexuais e de Gênero/psicologia , Adolescente , Ansiedade/tratamento farmacológico , Temas Bioéticos , Densidade Óssea/efeitos dos fármacos , Tomada de Decisão Clínica/ética , Esquema de Medicação , Ética Médica , Disforia de Gênero/psicologia , Fraturas do Quadril/etiologia , Humanos , Autonomia Pessoal
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