Child health care in primary health care: conflicts (bio)ethics

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.

Child; Pediatrics; Bioethics; Ethics; Primary health care; Family health

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.

Criança; Pediatria; Bioética; Ética; Atenção primária à saúde; Saúde da família

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.

Niño; Pediatría; Bioética; Ética; Atención primaria de salud; Salud de la familia

The 1960s witnessed a technological revolution in the field of health, with the development of dialysis machines, artificial ventilators, organ transplants and assisted reproduction techniques, among others. Considering these advances, in the 1970s, in works entitled Bioethics: bridge to the future and Bioethics: the science of survival , biochemist and oncology researcher Van Rensselaer Potter emphasized the need to reflect on the growing human capacity to change nature with these new technological discoveries.

In his texts, Potter presented bioethics as a bridge between biological science and ethics, defining it as “survival science,” that is, an interdisciplinary field of knowledge whose scope would be to ensure the preservation of the biosphere¹ . The goal was not to develop a code or set of precepts, but to improve the philosophical understanding of life and the meaning of being a person, as to propose public policies for establishing ethical limits to science¹ .

Also in the 1970s, the Belmont Report (1978) established respect for people, beneficence and justice as ethical principles to guide human research² . A year later, Beauchamp and Childress published Principles of biomedical ethics , considered a milestone in the emergence of the first bioethical approach: principlism. In this book, the authors used terms such as “respect for autonomy” and “non-maleficence,” introducing a new model for describing and analyzing ethical conflicts in health care³ .

A decade later, in Brazil, the 1988 Constitution universalized the health system by providing, in its article 196, that health is a right of all and a duty of the State ⁴ . This was the foundation for implementation of the Unified Health System (SUS) in the 1990s, whose principles are universality, equity, and integrality of care. Under SUS, primary health care (PHC) became the main gateway for users.

Later, the Family Health Strategy (ESF) – implemented following the creation of the Family Health Program (PSF) in 1994 – was essential to reorganize PHC. ESF’s decentralization of services, with promotion, prevention and care actions in priority areas, helped bring SUS closer to the population, favoring its consolidation⁵ . This care model led health professionals to adopt a new perspective, one focusing the user, rather than technical procedures⁶ .

In 2001, looking to contribute to the SUS consolidation in Brazil – given its goal of advising the training of health workers – the Ministry of Education (MEC) developed the National Curricular Guidelines for Health Courses, which encompassed 14 professions. These guidelines aim to train professionals with the necessary characteristics to work at SUS’s different levels of care⁷ .

Principlist bioethics, which had been exhaustively used as a theoretical tool to analyze ethical issues in the hospital setting, has not thrived similarly in PHC. This difference results mainly from the peculiarities of work in the PHC/ESF, in which (bio)ethical issues are often not even perceived by health professionals (or, if perceived, are usually considered of little relevance), in contrast to the evident conflicts of the hospital setting. PHC/ESF ethical issues can be quite complex, however, and, when they arise, require that the health professionals’ training be aligned with this model⁸ .

Vidal and collaborators⁹ , for example, point out that the invisibility of ethical issues at this level of care directly or indirectly compromises the SUS consolidation. Conducting research that helps establish strategies for students and health professionals to recognize such issues and know how to address them is thus paramount. Technical knowledge alone is insufficient to cover the conflicts that emerge in practice. Acquisition of competences geared towards integrality and responsibility, alongside the development of critical and reflective capacity to recognize and analyze such difficulties, must make up the daily routine of health professionals¹⁰ .

Such context involves especially vulnerable population groups such as children and adolescents, requiring from health professionals specific skills and competences in decision-making in the face of conflicts. Both children and adolescents are subjects of rights protected by professional ethics applied to pediatrics and adolescent medicine, which refers to a set of behaviors concerning labor practice, in terms of health care intended for these age groups, by means of disease prevention and care¹¹ .

In Brazil, the protection of children and adolescents is provided for in article 227 of the 1988 Constitution⁴ and in the Child and Adolescent Statute (ECA)¹² , which became the main legal instrument on the topic. In its article 4, ECA sates that it is the duty of the family, the community, society in general and the Government to ensure, with absolute priority, the implementation of the rights to life, health, food, education, sport, leisure, professionalization, culture, dignity, respect, freedom, and family and community life ¹² . Consequently, it is everyone’s duty to ensure the dignity of children and adolescents, protecting them from any inhuman, violent, terrifying, vexatious or embarrassing treatment ¹² .

Although Brazilian legislation has advanced in recent decades, the ECA, established by Law 8,069/1990¹² , is a true milestone in the understanding that children and adolescents are in a vulnerable situation and need protection from family, society and the State. In practice, however, we still have gaps that ensuring the rights of this population¹³ .

In this context, the professional activity in PHC stand out as a space that sees the emergence of several (bio)ethical issues regarding the care of children and adolescents, from the gestational period to 18 years of age, when the individual, according to the current legal system, reaches legal age. The topic, however, has little visibility in Brazil, hindering decision-making in the face of ethical conflicts that emerge in the everyday care of patients in this age group, whose complexity appears in different publications⁵ , ⁶ , ¹⁴ .

Based on the above, this literature review seeks to identify the main ethical conflicts related to child care in PHC.

Method

This literature review was conducted based on three groups of descriptors, determined from the controlled vocabulary Health Sciences Descriptors (DeCS) after consulting the Virtual Health Library (BVS). The first group comprised the terms child, children , and pediatrics ; the second the terms bioethics and ethics ; and the third the terms family health and primary health care . Using the boolean operator and , search strings were made with a descriptor from each group, totaling 12 strings that were applied to the SciELO Brasil and Saúde Pública, Lilacs, and PubMed databases.

Inclusion criteria consisted of papers published in Portuguese, Spanish or English, between 2009 and 2019, available in full and addressing bioethical conflicts involving the care of children and adolescents in PHC. Given the few results returned by the database searches, we decided to include articles addressing ethical conflicts in outpatient pediatrics and in child and adolescent primary health care.

Papers were selected in three steps ( Figure 1 ). The first step consisted in reading the title of the articles; the second, in reading the abstracts and discarding studies that did not fit the inclusion criteria; the third, in systematically reading of papers relevant to the review’s goal.

Figure 1
Article search strategy flowchart

Results

The database searches returned 2,857 results, of which 964 were duplicate articles and 1,721 were excluded by title. After analyzing the abstracts, we selected 23 manuscripts to compose the review sample and be read in full ( Table 1 ).

Table 1
Distribution of authors, year of publication, titles and conflicts observed

Author, year, title	Journal	Type of study and bioethical approach	Conflict in everyday outpatient clinical practice
Constantino; 201015, “Contracepção de emergência e adolescência: responsabilidade e ética”.	Revista Bioética	Descriptive, principlist approach.	Emergency contraception to prevent teenage pregnancy; secrecy; confidentiality.
García Mendiola and collaborators; 201016, “Dilemas éticos y bioéticos de la práctica pediátrica en la atención primaria de salud”.	Medisur	Descriptive, principlist approach.	Prenatal diagnosis (principle of respect for autonomy, as in the decision on birthing a child, even with diseases incompatible with life); immunization programs; care for children with disabilities (especially encephalopathy and congenital heart disease); children victims of abuse; care for children from religious families; drug indication, mainly for respiratory diseases.
Sarmiento; 201017, “Bioética e infancia: compromiso ético con el futuro”.	Persona y Bioética	Descriptive, principlist approach.	Protection of children in situations of social risk, such as poverty, maltreatment, labor exploitation and involvement in armed conflicts. Protection must be considered not only an ethical duty, but also a promoter of the child’s development into an adult capable of responsibly exercising autonomy.
Taquette; 201018, “Conduta ética no atendimento à saúde de adolescentes”.	Adolescência & Saúde	Literature review, principlist approach.	Ethical conflicts in disagreement with legislation, poverty, violence, sexual activity before 15 years of age, scientific research, relationship between physician and adolescent patient, autonomy, privacy, confidentiality and sexuality. Study sought to help health professionals make ethical decisions for the benefit of adolescents based on knowledge of the legislation.
Martínez Delgado, Rodríguez Prieto, Cuan Colina; 201111, “Aspectos éticos en pediatría”.	Revista Cubana de Pediatría	Bibliographic review, principlist approach.	Relationship between health professional, patient and family; informed consent; consent to the therapeutic act; communication and information.
Nulty; 201119, “Is it ethical for a medical practice to dismiss a family based on their decision not to have their child immunized?”	JONA’S Healthcare Law, Ethics, and Regulation	Case report, principlist approach.	A health care professional’s refusal to care for children whose family denies the necessary immunizations is contrary to the bioethical principles of respect for autonomy, beneficence, and justice. a family that refuses to have their child vaccinated should be given the same respect, support, and compassion as other patients.
Guedert, Grosseman; 201114, “Abordagem dos problemas éticos em pediatria: sugestões advindas da prática”.	Revista Brasileira de Educação Médica	Cross-sectional, descriptive, exploratory, qualitative, and quantitative study; principlist approach.	Physician-patient relationship (confidentiality, difficult personal relationships, and diagnostic disclosures); conduct of health professionals and related areas in the face of disagreement regarding therapeutic indications; and public health policies (especially those related to unfavorable socioeconomic conditions, inadequate health care network and work environment, and violence against children).
Madeira; 201120, “A bioética pediátrica e a autonomia da criança”.	Residência Pediátrica	Literature review, principlist approach.	Decision making must respect the patient’s family values and the principles of bioethics, but we must understand that the child is a moral being in development, and in this case the principle of respect for autonomy is relative, sine one has to consider the different stages of the infant’s cognitive and psychosocial development.
Guedert, Grosseman; 201221, “Ethical problems in pediatrics: what does the setting of care and education show us?”	BMC Medical Ethics	Study design of mixed approach: cross-sectional, observational, descriptive and inferential, qualitative and exploratory.	Physician-patient relationships; terminal patients; health professional conduct; weakness of the teaching-learning process; precariousness of the health care network.
Santos, Santos, Santos; 201222, “A confidencialidade médica na relação com o paciente adolescente: uma visão teórica”.	Revista Bioética	Nonsystematic literature review, principlist approach.	Emphasis on confidentiality in the relationship between physician and adolescent patient, having in mind that confidentiality is not an exclusive right of adults. It is a value also provided by law for the pediatric age group. Professionals must assess the adolescent’s development to progressively let them exercise their autonomy.
Barbosa, Guedert, Grosseman; 201323, “Problemas éticos relatados por internos com ênfase na saúde da criança”.	Revista Brasileira de Educação Médica	Study with a mixed approach: quantitative, cross-sectional and descriptive; qualitative-exploratory. Principlist approach.	Inappropriate professional attitudes; respect for autonomy, secrecy, and confidentiality; life-limiting situations; breaking bad news; physical or psychological violence; precariousness of the teaching-learning process; fragility of the health care network.
Moreira and collaborators; 201324, “Adolescência e sexualidade: uma reflexão com enfoque bioético”.	Adolescência & Saúde	Descriptive, qualitative research, principlist approach.	In adolescent care, attention to ethical, bioethical, legal and psychological aspects, as well as sexual counseling, aims to provide comprehensive care to developing individuals. Privacy and confidentiality are important factors for a preventive approach to maltreatment, sexual abuse, neglect, and violence.
Opel and collaborators; 201425, “A 6-month-old with vaccine-hesitant parents”.	Pediatrics	Case report, principlist approach.	Many primary care professionals consider the refusal of vaccination by parents one of the most contentious situations they face, given the effectiveness of immunization in reducing child mortality. Many pediatricians are legally liable for not attending children whose parents refuse vaccination. Some professionals even consider that the parents’ refusal justifies referral to child protection services. This situation illustrates the ethical conflict in public health: how to weigh values of an individual choice and the common good?
Almeida, Lins, Rocha; 201526, “Dilemas éticos e bioéticos na atenção à saúde do adolescente”.	Revista Bioética	Systematic literature review, principlist approach.	Secrecy and confidentiality in consultation; maltreatment; practice of illegal activities, such as abortion and drug use; sexual activity before the age of 14; health professionals who disclose information recorded in medical records; exploitation of the adolescent labor; and lack of government resources to purchase medication needed for health care. The authors reinforce the need for ethical, bioethical, and legal knowledge involved in child and adolescent health care.
Casado Blanco, Hurtado Sendin, Castellano Arroyo; 201527, “Dilemas legales y éticos en torno a la asistencia médica a los menores”.	Pediatría Atención Primaria	Descriptive, deontological approach.	Ethical conflicts are most evident in pediatric care, where the patient is a minor and, therefore, has an impeded or limited exercise of rights. The authors address the issue of minors emancipated for marriage. The article aims to advise pediatricians and general practitioners on legal, ethical, and deontological norms for decision-making in medical care.
Bow; 201528, “Singling out the double effect: sexual health advice and contraception are ethically distinct”.	London Journal of Primary Care	Descriptive, principlist approach.	In the UK, sexual intercourse with anyone under 16 is considered a crime. In light of St. Thomas Aquina’s “double effect,” which is based on the distinction between the intended and the foreseeable, the article discusses ethical and legal issues related to the work of professionals who provide contraceptives and sexual counseling to adolescents under 16 years of age. In conclusion, provision of contraceptives is not justified by the doctrine of double effect, and is therefore an illegal act.
Lantos; 201529, “The patient-parent- pediatrician relationship: everyday ethics in the office”.	Pediatrics in Review	Descriptive, principlist approach.	Home births; parents’ refusal to perform routine procedures or immunize healthy newborns; prescription of contraceptives for adolescents; maltreatment; secrecy and confidentiality about adopted children; and testing for drug use without the adolescent’s consent.
Block; 201530, “The pediatrician’s dilemma: refusing the refusers of infant vaccines”.	Journal of Law, Medicine & Ethics	Editorial note.	The article discusses ethical and legal issues related to attending parents who refuse to vaccinate their children. It concludes that the patient’s well-being should be the main motivating factor for care.
Moreno Villares; 201731, “Dilemas éticos en la práctica de la medicina infantil”.	Cuadernos de Bioética	Literature review of the last 20 years: 80 articles read thoroughly. Principlist approach.	Conflicts were divided into 13 orders of problems: disability; parental stress due to children’s treatment; health professionals’ lack of training in child psychology and communication; dilemmas related to child palliative care; impasses related to informed consent; indecisions regarding patient data; dilemmas related to prevention; hesitations related to surgery; doubts regarding organ donation; issues related to pediatric endocrinology, such as in cases of obesity; ethical dilemmas regarding divorced parents; child maltreatment; requesting unnecessary tests and treatments.
Lozano Vicente; 201732, “Bioética infantil: principios, cuestiones y problemas”.	Acta Bioethica	Descriptive, materialistic bioethics.	Bioethical reflection and practice must be adjusted to the developing individual. There must be synergy between bioethics, human rights, and socioenvironmental policies. Issues addressed were didactically divided into bioethics (autonomy, informed consent, secrecy, confidentiality), biomorals (child and adolescent sexuality, religious conflicts), and biopolitics (compulsory vaccination and education, legal issues related to child maltreatment).
Santos and collaborators; 201733, “Problemas éticos en la atención primaria: el contexto de la salud del niño”.	Bioética Complutense	Literature review.	Vaccination; child maltreatment; professional’s relationship with the patient’s family; socioeconomic issues in public health; and disorganization of care services.
Souza and collaborators; 201834, “Dilemas bioéticos na assistência médica às gestantes adolescentes”.	Revista Bioética	Integrative review, principlist approach.	Psychological conflicts due to induced abortion, usually clandestine and done dangerously; frictions related to privacy, confidentiality and autonomy; abortion in adolescence as an ethical problem in terms of public health.
Lozano Vicente; 201935, “Panorama da bioética infantil na América Latina”.	Revista Bioética	Review of the most relevant general indicators on health and social issues for children and public policies for protecting children, presenting a proposal to classify the main bioethical conflicts in Latin America.	The author discusses the main conflicts in children’s bioethics according to the standards involved, whether bioethical, biomoral, or biopolitical. According to Lozano Vicente, all bioethical issues concerning childhood are of great complexity, thus requiring interdisciplinary work that reconciles scientific, health, cultural, social, and ethical experiences.

Discussion

Most papers analyzed had the main goal of providing legal and ethical-deontological information to facilitate decision-making by health professionals, especially general practitioners and pediatricians. Among the different bioethical approaches used, the principlist one was the most frequent. After analyzing the issues discussed in the articles, we grouped them into four classes of problems ( Table 2 ).

Table 2
Classes of ethical issues

Ethical conflicts	Types
1. Related to patient versus patient’s parents/caregivers versus healthcare professionals	Inappropriate professional attitudes
	Communication to clarify treatments, procedures and examinations
2. Linked to the child’s limited exercise of their fundamental rights	Autonomy
	Privacy and confidentiality
	Use of contraceptives in adolescence
	Teenage sex education
	Teenage pregnancy
3. Related to situations of vulnerability	Child maltreatment
	Children with special needs
4. Associated with socioeconomic factors and public health policies	Parental refusal to vaccinate their children
	Poverty
	Child labor

Ethical conflicts

Caregivers versus health professionals

One of the most distinct and challenging characteristics of pediatric care is the fact that health teams deal not only with the patient, that is, the child²⁰ , ³⁶ , but also with parents or caregivers (most often grandparents or other relatives). Such care often involves a major affective and emotional burden due to parental stress, which hinders teamwork and even proper treatment³¹ .

Proper care in pediatric service is essential and involves an ethical stance, efficient listening, and a humanized perspective capable of recognizing and valuing the other people's demands without judgment, thus facilitating the building of bonds³⁷ . In pediatrics, professionals must consider the patient and their family, assuming the responsibility to provide – to the child and to the parents or caregivers – clear information that enables participation in therapeutic decisions. Good communication, besides reducing the anxiety of those involved, strengthens the bond with health professionals¹¹ .

Children’s limited exercise of their fundamental rights

Ethical problems are more acute in child and adolescent health care, since underage patients, according to the law, need a legal representative. Certain rights are achieved progressively, according to cognitive development, so the child or adolescent can understand, analyze and have their own values to judge what is best for them²² , ²⁷ . Accordingly, one of the main bioethical dilemmas in children and adolescent care in PHC refers to autonomy, that is, one’s capability to consciously determine the best therapeutic alternative according to their beliefs and values²⁰ .

As for children, decisions are centered on the family, considering that, legally, children – depending on their cognitive and psychosocial development – are considered incapable of opining on their own health²⁷ . According to Madeira²⁰ , pediatric care faces limits to the full exercise of rights, which prevents the full applicability of the principle of autonomy.

Respect for secrecy – the guarantee of confidentiality between the health professional and the patient ³⁸ –, for confidentiality – condition in which the patient shares information, and only they are able to authorize the breaking of this confession ³⁸ –, and for privacy – control that the individual has over access to their information ³⁸ – are fundamental rights inherent to the human person, provided by law and deliberate for all age groups, including adolescents⁴⁰ .

The Brazilian Society of Pediatrics³⁹ advises that care for these patients be done in three stages. First, the adolescent is attended with their family members. In the second stage, now alone with the patient, the health professional must clarify their rights to secrecy, confidentiality and privacy, emphasizing that the information covered during the consultation will not be passed on to their parents or guardians, as provided in article 74 of the Code of Medical Ethics⁴⁰ and in Chapter II, article 17, of the Child and Adolescent Statute¹² .

At this stage, the professional must also warn the patient about the circumstances in which secrecy can be broken, such as situations of violence, drug addiction, alcohol consumption, suicidal or homicidal ideations, self-injury, depressive states, diagnosis of serious illnesses, HIV serology, non-adherence to life-threatening treatments, pregnancy, and abortion. In this stage, the patient also receives guidance about their diagnosis and treatment.

In the third stage, with the adolescent’s consent, the professional talks only with the parents to clarify the diagnostic hypothesis and prepare the therapeutic plan¹⁸ , ³⁹ . To ensure secrecy, especially concerning treatment, health professionals should keep in mind the following particularities: 1) assess the patient’s maturity, considering their characteristics, severity of the adopted conduct and family factors; 2) recognize the legal aspects of the situation; and 3) discuss the cases with the team and carefully record the information. Compliance with these aspects is essential for the protection and safety of patients in this age group²² .

According to the Brazilian Society of Pediatrics, teenage pregnancy is highly prevalent in Brazil, totaling approximately 400,000 cases per year⁴¹ . Most girls who get pregnant end up dropping out of school, which has major long-term social impact, deeply influencing their life and making them more vulnerable to a cycle of poverty and social exclusion. For Constantino¹⁵ , teenage pregnancy is most often neither desired nor planned, and the “solutions” proposed for this situation (such as early marriage or abortion) are usually harmful to the adolescent, excluding both education and dialogue.

Emergency contraception could help resolve this conflict. For decision-making, health professionals must discuss scientific progress more comprehensively, so that these advances are used by society in accordance with the principle of justice, thus increasing their benefit and ensuring minor risk¹⁵ . Prescription of contraceptives for minors¹⁵ , ⁴⁰ is, however, an extremely conflictual situation. Article 217-A of the Brazilian Penal Code provides for the crime of rape against the vulnerable, including minors under 14 years of age and individuals who, for some reason, cannot defend themselves, such as those with certain illnesses or mental disabilities⁴² . In some countries, such as the UK, the age established by law is 16 years²⁸ .

Taquette¹⁸ points out that adolescents can decide about their sexual and reproductive life, and that access to educational information and contraception is a fundamental human right. Thus, according to the Brazilian Federation of Gynecology and Obstetrics Associations, prescribing contraceptives to minors under 15 years of age is not an illegal act as long as the professional carefully assesses the case, ruling out the possibility of rape. Situations such as this require a range of knowledge and a good decision-making skills from health professionals, given the difficulty – frequent in adolescent care – of reconciling ethical issues with legislation¹⁸ .

Situation of vulnerability

In the document A familiar face: violence in the lives of children and adolescents , the United Nations Children’s Fund (Unicef)⁴³ reports that, worldwide, around 300 million children aged 1 to 4 years – regardless of the country where they live, whether in poor or rich nations – are habitual victims of violence as a form of disciplining practiced by their caregivers. Six out of every 10 children in the world suffer physical punishment. Many, in addition to physical abuse, are victims of verbal or sexual abuse.

Globally, one in four children under the age of five (that is, 176 million children) lives with a mother who is also a victim of intimate partner violence. Around 1.1 billion caregivers (just over a quarter of the total) claims that physical punishment is necessary to properly raise or educate children. Only 60 countries have adopted any kind of legislation that completely prohibits the use of corporal punishment against children in the home. Thus, more than 600 million children under the age of 5 live in countries without legal protection. Violence against these children occurs at home, where it is perpetuated by those who should defend them, in institutions such as schools, and in other places such as the streets. Brazil is the fifth most violent nation in the world, reaching child homicide rates higher than in countries under armed conflict⁴³ .

Children with congenital diseases – such as cystic fibrosis or severe heart disease –, premature or with severe sequelae caused by infection or trauma, need technological support to maintain their lives. Known as “children with special needs,” they depend on specific, uninterrupted, long-term care that goes beyond the usual care, especially regarding health care.

In a descriptive and qualitative study based on patient and family-centered care, Dias and collaborators⁴⁴ concluded that the difficulty of access and follow-up in PHC services is the major challenge faced by caregivers of children with special needs. The study also emphasized the need to reflect on the practice of PHC professionals and qualify this class, through continuing education, to receive children with special needs and their families.

Socioeconomic factors and public health policies

In 2018, UNICEF published the document Well-Being and Multiple Deprivations in Childhood and Adolescence in Brazil ⁴⁵ , which addressed poverty based on Amartya Sen’s⁴⁶ perspective, emphasizing the deprivation of basic capacities, and not only the monetary issue, such as low income. The paper used data from the 2015 National Household Sample Survey (PNAD), which assessed non-monetary deprivations related to education, protection from child labor, basic sanitation, access to information, water, and housing. This survey found that in 2015, the Brazilian child population corresponded to 55 million people. Of these, 68% lived in the North and Northeast regions of the country, and 49.7% (27 million) were subject to at least one non-monetary deprivation.

Approximately 8.8 million children (19%) were subject to some deprivation related to education, such as not attending school or presenting a gap between chronological age and expected school grade. Around 2.5 million engaged in some type of economic activity, with girls (10.1%) being more affected than boys (2.5%). Two out of 10 children lacked adequate sanitation in their homes (an issue that affects mainly Northern Brazil).

Importantly, of the 27 million children and adolescents who suffer deprivation, 18 million are black, emphasizing the need for public policies that consider the skin color⁴⁵ . As Sarmiento¹⁷ points out, poverty threatens human rights, above all of children, as it deprives them of access to the necessary skills for adequate development and exposes them to other situations of vulnerability, such as violence and child labor. Public policies, whether in health or education, should aim to foster economic development to reduce inequities and enable social inclusion.

Social vulnerability also impacts immunization, one of the most relevant public health interventions, responsible for reducing infant mortality from vaccine-preventable diseases³⁰ . Given its importance, vaccination has been the object of lawmakers in several countries. In Brazil, its compulsory nature is established by article 14 of the ECA¹² . But even with the National Immunization Program, implemented in the 1970s, health professionals have been facing difficulties in maintaining adequate vaccination coverage. One reason is the excessive migratory movement in the country. As a result, in 2018 Brazil saw the spread of the measles virus, with an increase of more than 10,000 cases⁴⁷ .

False news of adverse effects and antivaccine mobilization have also escalated in Brazil, albeit to a lesser extent than in the United States. In this context, the ethical conflict involves balancing respect for parents’ autonomy and the impact on the collectivity. The situation is worrisome, since the increase in the incidence of vaccine-preventable diseases, besides exposing children to a major situation of vulnerability, results in risks to society³⁰ .

Final considerations

Bioethical conflicts in child and adolescent health care present peculiarities inherent to this age group. The limitation of this population as to the full exercise of their fundamental rights stands out, as does their situation of vulnerability, thus making it necessary to prioritize protection in decision-making. Such protection is crucial, since, as almost all the reviewed articles show, violence against children and adolescents is a major (bio)ethical conflict with devastating repercussions that go far beyond childhood.

Addressing these issues depends on the acquisition of competences that go beyond technical knowledge and must be perfected in the continuing education and training of health professionals. Analyzing the problems that emerge from the practice, in light of ethical and legal aspects – essential for the decision-making process – enables the provision of a comprehensive and effective care to those involved. Accordingly, adopting different decision support strategies – such as the computational approach with the use of artificial intelligence techniques⁴⁸ – may be useful for better managing (bio)ethical conflicts involving children and adolescents in the PHC setting.

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Publication Dates

• Publication in this collection
  18 Oct 2021
• Date of issue
  Jul-Sep 2021

History

• Received
  16 Oct 2020
• Reviewed
  1 June 2021
• Accepted
  2 Aug 2021