Cuidado à criança na atenção primária à saúde: conflitos (bio)éticos / Child health care in primary health care: conflicts (bio)ethics / El cuidado infantil en la atención primaria de salud: conflictos (bio)éticos

Resumo Os conflitos bioéticos no cotidiano do cuidado à criança e ao adolescente na atenção primária à saúde, embora bastante complexos, têm sido pouco abordados, diferentemente do que ocorre no nível de atenção terciária. O amparo a essa população especialmente vulnerável envolve conflitos que demandam do profissional de saúde, além de competência técnica, uma série de conhecimentos legais e atributos éticos indispensáveis. É importante, portanto, reconhecer e analisar as questões (bio)éticas envolvidas, a fim de possibilitar uma tomada de decisão que contemple o melhor interesse da criança. O objetivo do artigo é delimitar, com base em revisão de literatura, os principais conflitos éticos relacionados ao cuidado da criança na atenção primária.

Abstract Although quite complex, bioethical conflicts in the daily routine of child and adolescent health care in primary health care have been little addressed, unlike what occurs at the tertiary care level. Providing support to this especially vulnerable population involves conflicts that require from the health professional, in addition to technical competence, a series of essential legal knowledge and ethical attributes. Therefore, it is important to recognize and analyze the pertinent (bio)ethical issues in order to enable decision-making that is in the best interests of the child. From a literature review, this article aims to delimit the main ethical conflicts related to child health care in primary health care.

Resumen Los conflictos bioéticos en el cuidado diario de niños y adolescentes en la atención primaria de salud, aunque bastante complejos, han sido mal abordados, a diferencia de lo que ocurre en el nivel de atención terciaria. El apoyo a esta población particularmente vulnerable implica conflictos que requieren del profesional de la salud, además de competencia técnica, una serie de conocimientos jurídicos y atributos éticos esenciales. Por lo tanto, es importante reconocer y analizar las cuestiones (bio)éticas involucradas, a fin de permitir la toma de decisiones en el mejor interés del niño. El objetivo del artículo es delimitar, a partir de una revisión de la literatura, los principales conflictos éticos relacionados con el cuidado infantil en la atención primaria.

Seguimiento del neurodesarrollo en los recién nacidos pretérminos tardíos hasta los dos años de edad / Neurodevelopment follow up to late preterm new burns until two years old

Introducción: Los recién nacidos pretérminos tardíos presentan complicaciones a corto y a largo plazo que pueden afectar su neurodesarrollo. Objetivo: Evaluar el estado del neurodesarrollo de los recién nacidos pretérminos tardíos hasta los dos años de edad. Métodos: Estudio retrospectivo, observacional analítico y longitudinal, en 69 recién nacidos pretérminos tardíos, ingresados en la unidad de cuidados intensivos neonatales del Hospital Dr. Ángel Arturo Aballí, desde marzo 2009, hasta diciembre 2014, remitidos a la consulta de neurodesarrollo. Los resultados obtenidos se compararon con un grupo control conformado por recién nacidos a término y se expresaron en porcentajes. Resultados: Predominó el sexo masculino en ambos grupos (65,2 vs.59,4) y el nacimiento por cesárea en los recién nacidos pretérminos tardíos (68,1 vs. 39,9). Los pretérminos tardíos tuvieron mayor necesidad de ventilación mecánica (52,2 vs. 23,2) y de uso de drogas anticonvulsivas (13,0 vs. 5,8). Se observó mayor incidencia de alteraciones del neurodesarrollo en los recién nacidos pretérminos tardíos a los 6 meses (18,8 vs. 15,9), al año (8,7 vs 7,2) y a los 2 años (7,7 vs 2,3). Se observó mayor incidencia de resultados anormales en ultrasonido de cráneo (7,2 vs. 2,9), potenciales evocados auditivos de tallo cerebral (14,5 vs 1,4 por ciento) y en el examen del fondo de ojo (4,3 vs 1,4). Conclusiones: El nacimiento por cesárea prevalece en los recién nacidos pretérminos tardíos, tienen mayor necesidad de ventilación mecánica y reanimación al nacer. Este grupo presenta más afectación del neurodesarrollo que el grupo control y mayor riesgo de pérdida auditiva(AU)

Introduction: The late preterm newborns (LPN) present complications to short and long term that can affect their neurodevelopment. Objective: To evaluate the state of neurodevelopment in LPN until two years of age. Methods: It was carried out a retrospective, observational, analytic and longitudinal study with 69 LPN admitted in the neonatal intensive cares unit of Dr. Ángel Arturo Aballí Hospital from March 2009 to December 2014 that were referenced to the neurodevelopment consultation. The obtained results were compared with a control group conformed by term newborns. The results were expressed in percentages. Results: Masculine sex prevailed in both groups (65.2 percent vs. 59.4 percent) and the birth by Caesarean operation in the LPN (68.1 percent vs. 39.9 percent in the control group). LPN had bigger mechanical ventilation (52.2 percent vs. 23.2 percent) and of anti-seizure drugs use's needs (13.0 percent vs. 5.8 percent). It was observed a greater incidence of neurodevelopment alterations in the LPN to 6 months old (18.8 percent vs. 15.9 percent), 1-year-old (8.7 percent vs. 7.2 percent) and 2 years olds (7.7 percent vs. 2.3 percent). In the studies, bigger incidence of abnormal results was observed in transfontanelle ultrasonography (7.2 percent vs 2.9 percent), auditory evoked potentials of cerebral stem (14.5 percent vs. 1.4 percent) and in ocular fundus (4.3 percent vs. 1.4 percent). Conclusions: The birth by Caesarean section predominated in the LPN that is why they needed mechanical ventilation and resuscitation at birth. This group presented more affectation of the neurodevelopment state than the control group and bigger risk of hearing loss(AU)

Ethical issues arising in the provision of medical interventions for gender diverse children and adolescents.

The care of children and adolescents whose experience of the body is at odds with their gender feelings raises a number of questions that are as much ethical as medical or psychological. In this article I highlight some areas of ethical concern from the point of view of a senior clinician at the nationally commissioned UK Gender Identity Development Service (GIDS). I make the assumption that ethical deliberation is relational and grounded in the natural, social, political and institutional worlds in which the ethical questions arise. I try to show how matters of empirical fact, alongside an appreciation of broad social contexts, and historic and current power relations, provide an essential framework for the ways that ethical choices are framed by key groups of people as they take up different, sometimes opposing, ethical positions. I argue that practising ethically in such a service is not helpfully reduced to a single event, a treatment decision aimed at achieving the morally 'right' outcome, but an extended process in time. In the charged debate surrounding the recognition of these young people's needs, we must do more to promote responsible debate about the scope of sound ethical practice.

Ethical considerations for the design and implementation of child injury prevention interventions: the example of delivering and installing safety equipment into the home.

INTRODUCTION: Public health ethics is a growing field of academic interest but ethical discussion of injury prevention seems to have received limited attention. Interventions that promise to be effective are not necessarily-without explicit justification-'good' and 'right' interventions in every sense. This paper explores public health ethics in the context of child injury prevention with the objective to initiate interdisciplinary dialogue on the ethics of child safety interventions. METHOD: A framework of seven public health ethics principles (non-maleficence, health maximisation, beneficence, respect for autonomy, justice, efficiency and proportionality) were applied to an intervention to promote child safety in the home. RESULTS: Preventing child injury in the home is ethically challenging due to the requirement for the state to intervene in the private sphere. Non-maleficence and beneficence are difficult to judge within this intervention as these are likely to be highly dependent on the nature of intervention delivery, in particular, the quality of communication. Respect for autonomy is challenged by an intervention occurring in the home. The socioeconomic gradient in child injury risk is an important factor but a nuanced approach could help to avoid exacerbating inequalities or stigmatisation. Equally, a nuanced approach may be necessary to accommodate the principles of proportionality and efficiency within the local context. CONCLUSION: We conclude that this intervention is justifiable from an ethical perspective but that this type of reflection loop is helpful to identify the impact of interventions beyond effectiveness.

Developing child autonomy in pediatric healthcare: towards an ethical model. / Desarrollo de la autonomía del niño en la atención pediátrica: hacia un modelo ético.

The changes initiated by the new National Civil and Commercial Code in Argentina underline the pediatric task to empower children's and adolescents' developing autonomy. In this paper, we have framed a model describing autonomy in child healthcare. We carried out a literature review focusing on i) the concept of autonomy referring to the absolute value of the autonomous individual, and ii) the age-driven process of competent decisionmaking development. We summarized our findings developing a conceptual model that includes the child, the pediatrician and the parents. The pediatricianchild relationship is based on different forms of guidance and cooperation, resulting in varying levels of activity and passivity. Parental authority influences the extent of autonomy, based on the level of respect of the child's moral equality. Contextual, existential, conceptual, and socialethical conditions shall be considered when applying the model to facilitate dialogue between pediatricians, children, parents and other actors.

Los cambios del nuevo Código Civil y Comercial de la Argentina impulsa el desarrollo de la autonomía en niños y adolescentes. En este trabajo, estructuramos un modelo que describe la autonomía en la atención de la salud infantil. Hicimos un análisis bibliográfico enfocado en I) concepto de autonomía relacionado con el valor absoluto del individuo autónomo y II) el proceso de desarrollo de toma idónea de decisiones en función de la edad. Resumimos nuestros hallazgos mediante el desarrollo de un modelo conceptual en el niño, el pediatra y los padres. La relación pediatraniño se fundamenta en formas de orientación y cooperación con diversos niveles de actividad y pasividad. La autoridad de los padres influye sobre el grado de autonomía en función del nivel de respeto e igualdad moral del niño. Al aplicar el modelo para facilitar el diálogo entre pediatras, niños, padres y otros, se considerarán las circunstancias contextuales, existenciales, conceptuales y socio-éticas.

Newborn health benefits or financial risk protection? An ethical analysis of a real-life dilemma in a setting without universal health coverage.

INTRODUCTION: High healthcare costs make illness precarious for both patients and their families' economic situation. Despite the recent focus on the interconnection between health and financial risk at the systemic level, the ethical conflict between concerns for potential health benefits and financial risk protection at the household level in a low-income setting is less understood. METHODS: Using a seven-step ethical analysis, we examine a real-life dilemma faced by families and health workers at the micro level in Ethiopia and analyse the acceptability of limiting treatment for an ill newborn to protect against financial risk. We assess available evidence and ethical issues at stake and discuss the dilemma with respect to three priority setting criteria: health maximisation, priority to the worse-off and financial risk protection. RESULTS: Giving priority to health maximisation and extra priority to the worse-off suggests, in this particular case, that limiting treatment is not acceptable even if the total well-being gain from reduced financial risk is taken into account. Our conclusion depends on the facts of the case and the relative weight assigned to these criteria. However, there are problematic aspects with the premise of this dilemma. The most affected parties-the newborn, family members and health worker-cannot make free choices about whether to limit treatment or not, and we thereby accept deprivations of people's substantive freedoms. CONCLUSION: In settings where healthcare is financed largely out-of-pocket, families and health workers face tragic trade-offs. As countries move towards universal health coverage, financial risk protection for high-priority services is necessary to promote fairness, improve health and reduce poverty.

Key Implications of Data Sharing in Pediatric Genomics.

Accurate clinical interpretation of children's whole-genome and whole-exome sequences relies on comparing the patient's linked genomic and phenotypic data with variant reference databases of both healthy and affected patients. The robustness of such comparisons, in turn, is made possible by sharing pediatric genomic and associated clinical data. Despite this, sparse ethical-legal policy attention has been paid to making such sharing routine in practice. The interdisciplinary Paediatric Task Team of the Global Alliance for Genomics and Health considered in detail the current ethical, legal, and social implications of sharing genomic and associated clinical data involving children. An initial set of points to consider was presented at a meeting of the Paediatric Task Team at the 4th Plenary of the Global Alliance for Genomics and Health. The Key Implications for Data Sharing (KIDS) framework for pediatric genomics was developed based on feedback from this group and was supplemented by findings from a critical appraisal of the data-sharing literature. The final points to consider that comprise the KIDS framework are categorized into the following 4 primary themes: children's involvement, parental consent, balancing benefits and risks, and data protection and release requirements.

Statement on gender-affirmative approach to care from the pediatric endocrine society special interest group on transgender health.

PURPOSE OF REVIEW: The purpose of this Position Statement is to emphasize the importance of an affirmative approach to the health care of transgender individuals, as well as to improve the understanding of the rights of transgender youth. RECENT FINDINGS: Transgender youth have optimal outcomes when affirmed in their gender identity, through support by their families and their environment, as well as appropriate mental health and medical care. SUMMARY: The Pediatric Endocrine Society Special Interest Group on Transgender Health joins other academic societies involved in the care of children and adolescents in supporting policies that promote a safe and accepting environment for gender nonconforming/transgender youth, as well as adequate mental health and medical care. This document provides a summary of relevant definitions, information and current literature on which the medical management and affirmative approach to care of transgender youth are based.

Dilemas éticos en la práctica de la medicina infantil / Ethical dilemmas in practice of medicine child

Tras revisar la bibliografía existente en los últimos 20 años se aprecia un déficit de información sobre los conflictos éticos que afectan a los pediatras en su práctica diaria lo que provoca cierto grado de incertidumbre en estos profesionales a la hora de resolver estos problemas. Por este motivo se realizó una búsqueda sistemática en las principales bases de datos encontrando más de 150 artículos relacionados con este asunto, de los que se seleccionaron 80 considerados como los más relevantes. Tras estudiarlos, se encontraron 40 dilemas éticos relacionados con algún principio de solución y que se describen en este artículo. Entre ellos destacan algunos dilemas éticos relacionados con incapacidades, o con cuidados paliativos en medicina infantil, o el dilema del consentimiento informado en este rango de edad

After reviewing the existing bibliography in the last 20 years, we concluded that there is a lack of information regarding the ethical conflicts that affect to pediatrics in their daily practice. It produces certain degree of uncertainty in these professionals at the time of solving these problems. We made a systematic search in the main data bases, finding more than 150 articles related, of which 80 were considered outstanding. After studying them, we have found 40 ethical dilemmas, related to some principle of solution and that we described in this article. Through them we can find such important dilemmas as those related to physical disability, palliative care or consent from children

The U.N. Convention on the Rights of the Child: Relevance and Application to Pediatric Clinical Bioethics.

This article provides an overview of the relevance and import of the U.N. Convention on the Rights of the Child (CRC) to child health practice and pediatric bioethics. We discuss the four general principles of the CRC that apply to the implementation of all rights contained in the document, the right to health articulated in Article 24, and the important position ascribed to parents in fulfilling the rights of their children. We then examine how the CRC is implemented and monitored in law and practice. The CRC and associated principles of child rights provide strategies for rights-based approaches to clinical practice and health systems, as well as to policy design, professional training, and health services research. In light of the relevance of the CRC and principles of child rights to children's health and child health practice, it follows that there is an intersection between child rights and pediatric bioethics. Pediatric bioethicists and child rights advocates should work together to define this intersection in all domains of pediatric practice.

Actions Speak Louder Than Words: The U.N. Convention on the Rights of the Child and U.S. Pediatric Bioethicists.

In exploring the relationship between "child rights" and "pediatric bioethics" and how these disciplines might provide mutual support in advancing the health and wellness of children around the world, our article responds to the questions of whether the U.N. Convention on the Rights of the Child (CRC) could be of any benefit in the United States, the only country that has not yet ratified this international treaty, and whether the CRC has any value for addressing clinical pediatric bioethics' questions. We describe the considerable influence that the United States had in developing significant components of the CRC, and we argue that the CRC may be useful for U.S. pediatric bioethicists as a tool to advance children's health policy. We note that ratification of the CRC does not equate with compliance or success. Lastly, we identify a distinction between the use of the term "best interests" by child rights advocates and its use by clinical pediatric bioethicists.

Toward a Child Rights Theory in Pediatric Bioethics.

This article offers a child rights theory in pediatric bioethics, applying the principles, standards, and norms of child rights, health equity, and social justice to medical and ethical decision-making. We argue that a child rights theory in pediatric bioethics will help pediatricians and pediatric bioethicists analyze and address the complex interplay of biomedical and social determinants of child health. These core principles, standards and norms, grounded in the U.N. Convention on the Rights of the Child (CRC), provide the foundational elements for the theory and a means for better understanding the complex determinants of children's health and well-being. Rights-based approaches to medical and ethical decision-making provide strategies for applying and translating these elements into the practice of pediatrics and pediatric bioethics by establishing a coherent, consistent, and contextual theory that is relevant to contemporary practice. The proposed child rights theory extends evolving perspectives on the relationship between human rights and bioethics to both child rights and pediatric bioethics.

The Potential Value of the U.N. Convention on the Rights of the Child in Pediatric Bioethics Settings.

This article provides support for the use of a particular international human rights law document, the U.N. Convention on the Rights of the Child (CRC), in contemporary pediatric bioethics practice without relying on the legally binding force of the document. It first demonstrates that the CRC's core commitments and values substantially overlap with the core commitments and values of mainstream bioethics and with the laws of many domestic jurisdictions where mainstream bioethics are currently practiced. It then explores some implications of this overlap. For instance, the substantial international human rights law scholarship on how to understand these commitments and values can be helpful in suggesting ways to operationalize them in domestic bioethics practice and can offer insightful, internationally generated ethical perspectives that may not have been considered. The article also argues that the CRC can help health-care organizations develop policies consistent with the best interests of children and that the CRC can serve as a common language of values for transnational health-care collaborations. However, as a final case discussion demonstrates, whatever the merits of the CRC, one may face practical difficulties in trying to use it.

Child Rights and Clinical Bioethics: Historical Reflections on Modern Medicine and Ethics.

Why might pediatric bioethicists in the United States reject the U.N. Convention on the Rights of the Child (CRC) as a framework for resolving ethical issues? The essays in this issue present arguments and counterarguments regarding the usefulness of the CRC in various clinical and research cases. But underlying this debate are two historical factors that help explain the seeming paradox of pediatric bioethicists' arguing against child's rights. First, the profession of clinical bioethics emerged in the 1970s as one component of modern medicine's focus on improving health through the application of technologically sophisticated treatments. The everyday work of U.S. bioethicists thus usually involves emerging technologies or practices in clinical or laboratory settings; the articles of the CRC, in contrast, seem better suited to addressing broad policy issues that affect the social determinants of health. Second, U.S. child health policy veered away from a more communitarian approach in the early 20th century for reasons of demography that were reinforced by ideology and concerns about immigration. The divide between clinical medicine and public health in the United States, as well as the relatively meager social safety net, are not based on a failure to recognize the rights of children. Indeed, there is some historical evidence to suggest that "rights language" has hindered progress on child health and well-being in the United States. In today's political climate, efforts to ensure that governments pledge to treat children in accordance with their status as human beings (a child right's perspective) are less likely to improve child health than robust advocacy on behalf of children's unique needs, especially as novel models of health-care financing emerge.

Following the Yellow Brick Road: Next Steps in the Synthesis of Pediatric Bioethics and Child Rights.

The Symposium on "The Interface of Child Rights and Pediatric Bioethics in the Clinical Setting" brought together a diverse group of pediatric bioethicists and child rights advocates to explore how the junction of these disciplines could inform their respective work. In retrospect, it is clear how the diversity of personal histories, professional disciplines, knowledge, experience, language, culture, and politics of the participants influenced the outcomes of the Symposium and provided both challenges and opportunities for further collaboration. Several themes emerged from the meeting, including the relevance of the U.N. Convention on the Rights of the Child (CRC), the role of the family, and consideration of the best interests of the child to complex medical decision-making; research ethics; and the applicability of the principles of bioethics and child rights to the social determinants of health. This essay poses questions related to each of these themes that can serve as a framework for further collaboration. It concludes with a statement by Da Silva and his coauthors that the CRC and the principles of child rights can provide "increased conceptual clarity and a widely endorsed language that can assist pediatric bioethicists in clinical, organizational, and international consultations, as well as in education and policy development."

Health Care Issues for Children and Adolescents in Foster Care and Kinship Care.

Children and adolescents who enter foster care often do so with complicated and serious medical, mental health, developmental, oral health, and psychosocial problems rooted in their history of childhood trauma. Ideally, health care for this population is provided in a pediatric medical home by physicians who are familiar with the sequelae of childhood trauma and adversity. As youth with special health care needs, children and adolescents in foster care require more frequent monitoring of their health status, and pediatricians have a critical role in ensuring the well-being of children in out-of-home care through the provision of high-quality pediatric health services, health care coordination, and advocacy on their behalves.