Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer (...) at 3 sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

BackgroundBariatric surgery for children and adolescents is becoming widespread. However, the evidence is still scarce and of poor quality, and many of the patients are too young to consent. This poses a series of moral challenges, which have to be addressed both when considering bariatric surgery introduced as a health care service and when deciding for treatment for young individuals. A question based (Socratic) approach is applied to reveal underlying moral issues that can be relevant to an open (...) and transparent decision making process.DiscussionA wide range of moral issues with bariatric surgery for children and adolescents is identified in the literature. There is a moral imperative to help obese minors avoiding serious health problems, but there is little high quality evidence on safety, outcomes, and cost-effectiveness for bariatric surgery in this group. Lack of maturity and family relations poses a series of challenges with autonomy, informed consent, assent, and assessing the best interest of children and adolescents. Social aspects of obesity, such as medicalization, prejudice, and discrimination, raise problems with justice and trust in health professionals. Conceptual issues, such as definition of obesity and treatment end-points, present moral problems. Hidden interests of patients, parents, professionals, industry, and society need to be revealed.SummaryPerforming bariatric surgery for obese children and adolescents in order to discipline their behavior warrants reflection and caution. More evidence on outcomes is needed to be able to balance benefits and risks, to provide information for a valid consent or assent, and to advise minors and parents. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify (...) studies on end-of-life decision making in pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

We systematically reviewed contemporary literature to create an evidence-informed framework for research studies involving children and adolescents who can assent to participate. We searched seven citation indices to locate peer-reviewed research published in English language journals between 2000 and 2012. After screening 1,231 titles and abstracts for relevance, we assessed levels of evidence, extracted information, and analysed content from 87 articles. Most articles narrowly focused on paediatric assent barriers and facilitators for decision-making about research participation. No (...) articles provided a single, comprehensive ethical framework to guide the development and review of research assent protocols. We developed a 6-step framework that provides guidance to: prepare the child for the assent process; assess the child’s readiness to engage in decision making; discuss the elements of informed consent to the greatest extent possible; seek an initial assent decision; monitor and affirm assent; and respect the child’s role as a research participant. The PAeDS-MoRe framework also supports the creation of process models that address the unique, developmental needs of paediatric sub-groups, and guides the operationalization of jurisdictional requirements for ethical research involving children who are unable to provide free, informed and ongoing consent. (shrink)

The case presented here is tragic, not just in the sense of being a sad story, but in the dramatic meaning of tragedy. It presents us with a situation where there is no clear path, where moral ambiguity exists, and where no possible solution could unequivocally be declared the right or good one. Ethical deliberation can help here, but only as a way of clarifying the issues and offering reasonable solutions. It cannot show us the one right way.Baby G has (...) profound medical conditions, including respiratory failure, a chest wall deformity that will require surgery, and profound neurodevelopmental disability. Even a best case scenario portends a shortened lifespan and.. (shrink)

The growing phenomenon of teenage pregnancy introduces the problem of who should serve as surrogate decision makers for the children of adolescent parents. The justifications which sanction society's grant of presumptive decision making authority for adult parents, and the rationales and empirical evidence supporting a central role for adolescents who wish to make medical decisions regarding their own care, together suggest that older adolescent parents should be viewed as the presumptive decision makers for their (...) children. There is, however, empirical evidence that adolescent parents lack the cognitive abilities of childless adolescents of the same age and that many exhibit lower levels of emotional stability, sensitivity to infant needs, and social adjustment. These deficiencies, where present, undermine the very justifications for allowing adolescents to make medical decisions for their children. These findings are strong enough to justify a greater level of watchfulness over the competency and decisions of those adolescents who wish to make decisions for their children, but not definitive enough to conclude that, as a group, they be presumed incapable of making those decisions. (shrink)

In Roper v. Simmons (2005) the United States Supreme Court announced a paradigm shift in jurisprudence. Drawing specifically on mounting scientific evidence that adolescents are qualitatively different from adults in their decision-making capacities, the Supreme Court recognized that adolescents are not adults in all but age. The Court concluded that the overwhelming weight of the psychological and neurophysiological data regarding brain maturation supports the conclusion that adolescents are qualitatively different types of agents than adult persons. (...) The Supreme Court further solidified its position regarding adolescents as less than fully mature and responsible decisionmakers in Graham v. Florida (2010) and Miller v. Alabama (2012). In each case, the Court concluded that the scientific evidence does not support the conclusion that children under 18 years of age possess adult capacities for personal agency, rationality, and mature choice. This study explores the implications of the Supreme Court decisions in Roper v. Simmons, Graham v. Florida, and Miller v. Alabama for the “mature minor” standard for medical decision making. It argues that the Supreme Court’s holdings in Roper, Graham, and Miller require no less than a radical reassessment of how healthcare institutions, courts of law, and public policy are obliged to regard minors as medical decisionmakers. The “mature minor” standard for medical decision making must be abandoned. (shrink)

Adolescence is a period of life during which peers play a pivotal role in decision-making. The narrative of social influence during adolescence often revolves around risky and maladaptive decisions, like driving under the influence, and using illegal substances. However, research has also shown that social influence can lead to increased prosocial behaviors and a reduction in risk-taking. While many studies support the notion that adolescents are more sensitive to peer influence than children or adults, the developmental (...) processes that underlie this sensitivity remain poorly understood. We argue that one important reason for this lack of understanding is the absence of precisely formulated models. To make a first step toward formal models of social influence during adolescence, we first identify three prominent verbal models of social influence in the literature: social motivation, reward sensitivity, and distraction. We then illustrate how these can be translated into formal models, and how such formal models can inform experimental design and help identify developmental processes. Finally, by applying our formal models to existing datasets, we demonstrate the usefulness of formalization by synthesizing different studies with seemingly disparate results. We conclude with a discussion on how formal modeling can be utilized to better investigate the development of peer influence in adolescence. (shrink)

For many years the prevailing paradigm for medical decision making for children has been the best interest standard. Recently, some authors have proposed that Mill’s “harm principle” should be used to mediate or to replace the best interest standard. This article critically examines the harm principle movement and identifies serious defects within the project of using Mill’s harm principle for medical decision making for children. While the harm principle proponents successfully highlight some difficulties in (...) present-day use of the best interest standard, the use of the harm principle suffers substantial normative and conceptual problems. A medical decision-making framework for children is suggested, grounded in the four principles. It draws on the best interest standard, incorporates concepts of harm, and provides two questions that can act as guide and limit in medical decision making for children. (shrink)

Background: With multiple options available today to become a parent, how does the matter of genetic relatedness factor into adolescent cancer patients’ fertility preservation decision making? This study reports on and normatively analyzes this aspect of FP decision making. Methods: A convenience sample of Israeli adolescent cancer survivors and their parents were invited to participate in individual, semi-structured interviews. Results: In discussing the importance of genetic relatedness to future children or grandchildren, participants repeatedly brought up (...) the interrelated issues of nature, normalcy, and personal identity. Regardless of preference or ambivalence for genetic relatedness, the majority of participants were aware of alternative parenting options and noted both their advantages and disadvantages. However, knowledge of alternative parenting options was not uniform. Conclusions: To ensure that adolescent patients and their parents make informed FP decisions that meet their personal goals and values, it is important for physicians to discuss alternative parenting options with them in a culturally sensitive manner. Greater credence also should be given to those who question the importance of genetic relatedness. (shrink)

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is increasing and (...) even predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the ‘AP‐physician‐family‐relationship’ and the dominant role Chinese families play in medical decision‐making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese (...) writers from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives ‘weak’ family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re‐interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its ‘parens patriae’ power to defend the defenseless in society and the integrity of the medical profession. (shrink)

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is increasing and (...) even predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the 'AP-physician-family-relationship' and the dominant role Chinese families play in medical decision-making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese (...) writers from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives 'weak' family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re-interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its 'parens patriae' power to defend the defenseless in society and the integrity of the medical profession. (shrink)

Forgiveness education has demonstrated psychological, social and academic benefits; however, it has not been discussed as a means of promoting character development for children and adolescents. In this paper, we discuss forgiveness as a moral concept and explain how forgiveness can contribute to current discussions of character education. After reviewing relevant literature we describe how a forgiveness programme can be an effective form of character education and attempt to clarify the contributions the forgiveness literature can make to the (...) field of character education. We argue that forgiveness provides those interested in character development with a programme that can enhance educational initiatives and advance the character education research agenda. (shrink)

ABSTRACT Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision‐making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision‐making. Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, (...) maturity in judgment, risk‐taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision‐making are surveyed by a 50‐item questionnaire on a five‐point Likert scale. Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision‐makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision‐making. Conclusion:‘14‐and‐above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision‐making in medically‐related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

The United Nations Convention on the Rights of the Child risks harm to adolescents insofar as it encourages not only poor decision making by adolescents but also parenting styles that will have an adverse impact on the development of mature decision-making capacities in them. The empirical psychological and neurophysiological data weigh against augmenting and expression of the rights of children. Indeed, the data suggest grounds for expanding parental authority, not limiting its scope. At (...) the very least, any adequate appreciation of the moral claims regarding the authority of parents with respect to the decision-making capacity of adolescents needs to be set within an understanding of the psychological and neurophysiological facts regarding the development of adolescent decision-making capacity. (shrink)

Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision-making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision-making.Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in (...) judgment, risk-taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision-making are surveyed by a 50-item questionnaire on a five-point Likert scale.Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision-makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision-making.Conclusion:‘14-and-above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision-making in medically-related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

Reports of children participating in hunger strikes while detained in offshore detention centres raise interrelated ethical issues and recognizable challenges for the medical decision-makers at these sites. A composite case study, informed by reports in the public domain, is employed to explore the unique challenges of consent and decision-making in these circumstances and the perennial issues inherent in adolescents’ developing capacity and autonomy. We present an amalgamated case of a fourteen-year-old adolescent who refused to consent (...) to medical reversal of her hunger strike protest. The medical team became the final arbiter when her parents, who were also in detention, could not agree with each other even after mediation. The case explores the complexity of evaluating the adolescent’s capacity to provide informed consent while influenced by the opinions of co-detainees in this extreme setting. We argue that the parents and the child had compromised decisional capacity due to the effects of detention. The challenges to the medical team are recognized and discussed. The team members faced a difficult dilemma and considered the competing values of the multiple cultural and ethical factors. Each team member integrated his or her own roles, duties, and discipline-specific professional guidelines with the primary goal of mitigating potential harms. (shrink)

BackgroundStreet-connected children and youth in low- and middle-income countries have multiple vulnerabilities in relation to participation in research. These require additional considerations that are responsive to their needs and the social, cultural, and economic context, while upholding core ethical principles of respect for persons, beneficence, and justice. The objective of this paper is to describe processes and outcomes of adapting ethical guidelines for SCCY’s specific vulnerabilities in LMIC.MethodsAs part of three interrelated research projects in western Kenya, we created procedures (...) to address SCCY’s vulnerabilities related to research participation within the local context. These consisted of identifying ethical considerations and solutions in relation to community engagement, equitable recruitment, informed consent, vulnerability to coercion, and responsibility to report.ResultsSubstantial community engagement provided input on SCCY’s participation in research, recruitment, and consent processes. We designed an assent process to support SCCY to make an informed decision regarding their participation in the research that respected their autonomy and their right to dissent, while safeguarding them in situations where their capacity to make an informed decision was diminished. To address issues related to coercion and access to care, we worked to reduce the unequal power dynamic through street outreach, and provided access to care regardless of research participation.ConclusionsAlthough a vulnerable population, the specific vulnerabilities of SCCY can to some extent be managed using innovative procedures. Engaging SCCY in ethical research is a matter of justice and will assist in reducing inequities and advancing their health and human dignity. (shrink)

ABSTRACT Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision‐making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision‐making. Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, (...) maturity in judgment, risk‐taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision‐making are surveyed by a 50‐item questionnaire on a five‐point Likert scale. Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision‐makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision‐making. Conclusion:‘14‐and‐above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision‐making in medically‐related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

The current study mainly explored the influence of fluid intelligence and emotional intelligence on affective decision-making from a developmental perspective, specifically, during the transition from childhood into early adolescence. Meanwhile, their age-related differences in affective decision-making were explored. A total of 198 participants aged 8–12 completed the Iowa Gambling Task, the Cattell’s Culture Fair Intelligence Test and the Trait Emotional Intelligence Questionnaire-Child Form. Based on the net scores of IGT, the development of affective decision-making (...) ability did not increase monotonically with age, and there was a developmental trend of an impaired IGT performance in early adolescence, especially in the early learning phase of the IGT. More importantly, IQ and EI played different roles for children and early adolescents: IQ and EI jointly predicted the IGT performance for 8–10 years old children, whereas only EI contributed to the IGT performance of 11–12 years old early adolescents. The present study extends the evidence how cognitive processing and emotional processing interact in affective decision-making from the developmental perspective. Furthermore, it provides insights of future research and intervention with early adolescents’ poor affective decision-making. (shrink)

Approximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child’s medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child’s biological parents should play in making serious medical decisions. (...) Here we highlight some of the ethical challenges inherent in making these decisions for children in foster care, as seen through the lenses of a child welfare provider, an inpatient care physician, and a primary care pediatrician. (shrink)

Whether adolescents should be allowed to make their own medical decisions has been a topic of discussion in bioethics for at least two decades now. Are adolescents sufficiently capacitated to make their own medical decisions? Is the mature-minor doctrine, an uncommon legal exception to the rule of parental decision-making authority, something we should expand or eliminate? Bioethicists have dealt with the curious liminality of adolescents—their being neither children nor adults—in a variety of ways. However, (...) recently there has been a trend to rely heavily, and often exclusively, on emerging neuroscientific and psychological data to answer these questions. Using data from magnetic resonance imaging and functional MRI studies on the adolescent brain, authors have argued both that the adolescent brain isn't sufficiently mature to broadly confer capacity on this population and that the adolescent brain is sufficiently mature to assume adolescent capacity. Scholars then accept these data as sufficient for concluding that adolescents should or should not have decision-making authority. Two critical mistakes are being made here. The first is the expectation that neuroscience or psychology is or will be able to answer all our questions about capacity. The second, and more concerning, mistake is the conflation of decision-making capacity with decision-making authority. (shrink)

International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income (...) countries, highlighting the need to take account of voices from more diverse contexts. Between January and March 2014, 56 community representatives and secondary school students were involved in eight group discussions to explore views on the acceptability of involving children and adolescents in research, and how these groups should be involved in decision-making about their own participation. Discussions were voice-recorded and transcriptions analyzed using Framework Analysis, combining deductive and inductive approaches. Across these discussions, the idea of involving children and adolescents in decision-making about research participation was strongly supported given similar levels of responsibility carried in everyday life; existing capacity that should be recognized; the opportunity for learning involved; varying levels of parental control; and generational shifts towards greater understanding of science for adolescents than their parents. Joint decision-making processes were supported for older children and adolescents, with parental control influenced by perceptions of the risks involved in participation. Moves towards more active involvement of children and adolescents in planning studies and in making decisions about their participation are supported by these findings from Kenya. Important emerging considerations include the need to take account of the nature of proposed studies and prevailing attitudes and understanding of research in identifying children’s and adolescents’ roles. More research is needed to expand diversity and develop approaches to joint assent and consent processes that would fairly represent children’s and adolescents’ wishes and interests, towards their long term benefit. (shrink)

This paper discusses the use of deep brain stimulation for the treatment of neurological and psychiatric disorders in children. At present, deep brain stimulation is used to treat movement disorders in children and a few cases of deep brain stimulation for psychiatric disorders in adolescents have been reported. Ethical guidelines on the use of deep brain stimulation in children are therefore urgently needed. This paper focuses on the decision-making process, and provides an ethical framework (...) for (future) treatment decisions in pediatric deep brain stimulation. I defend a shared decision-making model in case of deep brain stimulation for neurological and psychiatric disorders in children. To protect the vulnerable child patient, a dual consent process is needed where parents or parental guardians give their consent, and the child gives his/her assent. (shrink)

Medical practice should evolve alongside medical ethics. As our understanding of the ethical implications of physician-patient interactions becomes more nuanced, physicians should integrate those lessons into practice. As early as the 1930s, epidemiological studies began to identify that the rates of medical procedures varied significantly along geographic and socioeconomic lines. Dr. J. Alison Glover recognized that tonsillectomy rates in school children in certain school districts in England and Wales were in some cases eight times the rates of children (...) in other districts, with the only significant predictive factors being the current chief medical officer in the area and the socioeconomic well-being of the child's parents. Unfortunately, Dr. Glover's work revealed that the increase in tonsillectomies did not improve the health of adolescent patients and appeared to be performed “as a routine prophylactic ritual for no particular reason and with no particular result.”. (shrink)

Previous developmental research shows that young children display a preference for ingroup members when it comes to who they accept information from – even when that information is false. However, it is not clear how this ingroup bias develops into adolescence, and how it affects responses about peers who misinform in intergroup contexts, which is important to explore with growing numbers of young people on online platforms. Given that the developmental span from childhood to adolescence is when social groups (...) and group norms are particularly important, the present study took a Social Reasoning Developmental Approach. This study explored whether children and adolescents respond differently to a misinformer spreading false claims about a peer breaking COVID-19 rules, depending on the group membership of the misinformer and their target and whether the ingroup had a “critical” norm that values questioning information before believing it. 354 United Kingdom-based children and adolescents read about an intergroup scenario in which a peer spreads misinformation on WhatsApp about a competitor. Participants first made moral evaluations, which asked them to judge and decide whether or not to include the misinformer, with follow-up “Why?” questions to capture their reasoning. This was followed by asking them to attribute intentions to the misinformer. Results showed that ingroup preferences emerged both when participants morally evaluated the misinformer, and when they justified those responses. Participants were more likely to evaluate an ingroup compared to an outgroup misinformer positively, and more likely to accuse an outgroup misinformer of dishonesty. Adolescents attributed more positive intentions to the misinformer compared with children, with children more likely to believe an outgroup misinformer was deliberately misinforming. The critical norm condition resulted in children making more positive intentionality attributions toward an ingroup misinformer, but not an outgroup misinformer. This study’s findings highlight the importance of shared group identity with a misinformer when morally evaluating and reasoning about their actions, and the key role age plays in intentionality attributions surrounding a misinformer when their intentions are ambiguous. (shrink)

Death and grief in the ancient world -- Predictions and disability in Rome.

In the context of transgender health, most people are not comfortable with allowing a twelve‐year‐old child with gender dysphoria to elect to undergo gender reassignment surgery. The likelihood is too high that the child would be unable to fully comprehend the scope of a decision that carries significant, permanent consequences, particularly because the decision to surgically change gender is based upon a conception of gender that can fluctuate during adolescent years. Conversely, however, most people would not contend that (...) this fluidity is reason to wholly deny certain medical care such as hormonal treatments to transgender youth, a demographic with extremely high rates of violent behavior, self‐harm, and suicide. This paper will explore ethical considerations to this emerging debate of what therapeutic options should be offered to transgender children and adolescents.Pediatric endocrinologists have been treating gender dysphoric adolescents with puberty‐suppressing drugs and, to a lesser extent, with cross‐sex hormone therapies for more than twenty years. Clinicians and thought leaders have mentioned ethical components of this emerging practice in the few cohort studies and clinical review articles about the subject. However, ethics have generally been a secondary consideration in the medical academic literature. In this paper, I will provide a brief overview of the practice, summarize the current research on hormone treatment for transgender minors, and provide an ethical analysis of the practice. (shrink)

Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision-making triad (...) that also includes the parents or guardians. The multifactorial nature of these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient. (shrink)

BackgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach (...) class='Hi'>decision-making for a child with a life-limiting condition who is unable to participate in decision-making for his/herself.MethodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.ResultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to, analysis showed four distinct approaches: non-directed, joint, interpretative, and directed. In relation to, the common factors were: harm to the child, possible psychological harm to parents, parental preferences in decision-making, and resource allocation.ConclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.Trial registration: Not applicable. (shrink)

Dominic Wilkinson, a neonatal physician and medical ethicist, has written a searching, moving, and philosophically sophisticated book about the ethics of life and death decision making in the neonatal intensive care unit. Although I will devote much of this review to criticism, I want to say at the outset that Death or Disability represents interdisciplinary work at its very best. Wilkinson’s exposition is both rich in detail and uncompromising in its ethical analysis. He spares the reader none of (...) the clinical, psychological, and moral complexities and uncertainties of the decisions made daily in the neonatal intensive care unit.I especially recommend this book to moral philosophers and practical ethicists... (shrink)

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (...) (2) whether the guidelines conflict or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

Essays and articles in the November‐December 2022 issue of the Hastings Center Report explore the complexities of medical decision‐making. A case‐study essay, for example, argues that the dismaying decision to perform resuscitation efforts on a patient who had obviously been dead for some time can be understood in the context of the harmful practice of defensive medicine. A narrative essay concerns whether an adolescent with locked‐in syndrome should be asked her wishes about life‐sustaining interventions, and the articles (...) illuminate the ethical value of the parental role in pediatric decision‐making, an array of ways in which patient decision‐making is interdependent, and the limitations of measures designed to evaluate the quality of a patient's decision and decision‐making process. (shrink)

In recent years, increasing pressures have been brought to bear upon nurses and others more closely to inform, involve and support the rights of parents or guardians when crucial ‘life and death’ ethical decisions are made on behalf of their seriously ill child. Such decisions can be very painful for all involved, and may easily become deadlocked when there is an apparent clash of moral ideals or values between the medical team and the parents or guardians. This article examines a (...) growing number of such cases in New Zealand and analyses the moral parameters, processes, outcomes and ethical responses that must be considered when life and death ethical decisions involving children are made. The article concludes with a recommendation that nurses should be recognized as perhaps the most suitable of all health care personnel when careful mediation is needed to produce an acceptable moral outcome in difficult ethical situations. (shrink)

As more young people feel safe to outwardly identify as transgender or gender expansive (TGE), meaning that their gender identity does not align with the sex they were assigned at birth, an increasing number of youth who identify as TGE seek gender-affirming medical care (GAMC). GAMC raises a number of ethical questions, such as the capacity of a minor to assent or consent, the role of parents or legal guardians in decisions about treatment, and implications for equitable access to care (...) when differing parental or custodial viewpoints are present. These questions are further complicated by the difficulties in explaining the limits of long-term research in GAMC, with regard to the preservation of fertility, for example. We present two de-identified composite case studies to highlight dilemmas that may arise and offer recommendations to better support patient- and family-centered decision making for GAMC. These include employing a multidisciplinUniverary shared decision-making approach, disentangling informed consent and assent from chronological age, developing a consistent approach to the assessment of decisional capacity, and developing age-appropriate informational materials. (shrink)

The administration of electroconvulsive therapy (ECT) to children and adolescents remains an unresolved area of clinical debate for nurses. Thus, some nurses have refused to participate in the treatment of minors with ECT, invoking codes of conduct to justify their actions. Other nurses have supported the use of ECT with children and adolescents, via provision of technical assistance to medical colleagues. A cross-national comparison of ethical codes of conduct has confirmed that nurses should take decisive action (...) in the clinical arena when the needs or rights of vulnerable minors are compromised. The provision of clinical guidelines is suggested as one method to enshrine the rights of at-risk children and adolescents. (shrink)

Institutional guidelines for transgender children and adolescent minors fail to adequately address a critical juncture of care of this population: how to proceed if a minor and their parents have disagreements concerning their gender-affirming medical care. Through arguments based on ethical, paediatric, adolescent and transgender health research, we illustrate ethical dilemmas that may arise in treating transgender and gender diverse youth. We discuss three potential avenues for providing gender-affirming care over parental disagreement: legal carve-outs to parental consent, the mature (...) minor doctrine and state intervention for neglect. Our discussion approaches this parent–child disagreement in a manner that prioritises the developing autonomy of transgender youth in the decision-making process surrounding medically assisted gender affirmation. We base our arguments in the literature surrounding the risks and benefits of gender-affirming therapy in transgender children and the existing legal basis for recognising minors’ decision-making authority in certain medical situations. (shrink)

The article examines the need to increase an education toward the development of complex thinking in urban areas where there is a considerable amount of social unrest. The school often fails to bridge the gap between educator/education and learner and this happens in particular when it comes to kids ‘disadvantaged’. The P4C is a pedagogical method that can heal this divide, inter alia, through its dialogic practice. The practice of philosophy can became a way to bridge the sense of fragmentation (...) that the learner feels during his school track when he is having to do with a series of parceled knowledge, because it facilitate the cognitive access to them. The risk to which the student meets with the traditional education, as Freire says, is to undermine the faculty to make aware and to problematize his learning process. To built complex thinking opens the possibility of a 360-degree access to the real and increases the development of critical, creative and caring cognitive spheres. The P4C methodology application should be widespread in many school settings possible, but not only. The article continues with a brief description of some non-formal educational services offered to minors in situations of social disadvantage in Naples, focusing in particular on the Territorial Educational Laboratories. In one of these, L’Officina dei Sogni, an organization working in the territory of the 1st Municipality of the city, I carried out from October 2010 to June 2011 a P4C laboratory with children between 8 and 12 years old, driven by the reflection that this educational methodology can improve on cognitive skills in children and adolescents who are living in situations of high social problems and difficulties at school, in order to reduce for them the risk of social exclusion. The success encountered by the laboratory has had a positive effect also on the other daily Territorial Educational Laboratories activities. The aim of this article is to demonstrate that the use of this philosophical practice is not only possible but necessary in the educational fields that attend in urban areas where there is a strong presence of social problems. (shrink)

In the nearly one hundred years that have elapsed since Freud’s publication of his pioneering work with “Little Hans,” psychoanalysis has transformed not only our clinical work with children, but has immeasurably enriched our understanding of normal child and adolescent development as well as developmental deviations and derailments. We have gradually come to understand childhood and adolescence as a complex tapestry of developmental themes, conflicts, and crises; sometimes discontinuous or discrete, at other times, harmonious and integrated, yet always occurring (...) within a transactional matrix of environmental influences and internal experience. In this transdisciplinary anthology, eight authors explore the changing terrain of child and adolescent psychoanalysis and psychoanalytic therapy. The contributions, which reflect theoretical and clinical heterogeneity, are both innovative and varied, and range from the highly abstract and theoretical to those that consider very specific dimensions of clinical process. Collectively, they make a compelling case for the continued relevance of psychoanalytic ideas in the treatment of children and adolescents. With insightful contributions by expert psychoanalysts, clinical social workers, and clinical psychologists, Psychoanalytic Approaches to the Treatment of Children and Adolescents: Tradition and Transformation is essential reading for child and adolescent therapists. Psychoanalytic Approaches to the Treatment of Children and Adolescents will increase your knowledge of: the function of play in normal development--and within the treatment relationship psychoanalytic theories and research investigations linking early object loss to depression the nature of adolescent depression the theoretical and clinical dimensions of a two-systems approach to understanding psychopathology and the clinical process the dynamic meaning and clinical management of drug and alcohol abuse, promiscuity, eating disorders, violence, and other self-destructive behaviors the complexities of treating children with neuropsychological deficits. (shrink)

In this article, we explore alternative conflict resolution strategies to assist families and clinicians in cases of intractable dissent in paediatric health care decision-making. We focus on the ethical and legal landscape using cases from the Australian jurisdiction in New South Wales, while referencing some global sentinel cases. We highlight a range of alternative means of addressing conflict, including clinical ethics support, and contrast and contextualise facilitative or interest-based mediation, concluding that legal intervention via the courts can be (...) protracted and distressing and should be a ‘last resort’. We acknowledge many might view this as the current status quo, but we go further to recommend strategies optimal for all parties to recognise early signs of conflict and prevent its harmful escalation. While more empirical research is needed, we contend that interest-based mediation may be a valuable adjunctive method of conflict resolution. If judiciously distinguished from and utilised with clinical ethical support, it can be an effective tool to address dissent and its negative sequelae in paediatric healthcare decision-making. (shrink)

Decisions concerning children in the health care setting have engendered significant controversy and sparked ethics policies and statements, legal action, and guidelines regarding who ought to make decisions involving children and how such decisions ought to be made. Traditionally, parents have been the default decision-makers for children not only with regard to health care but with regard to other matters, such as religious practice and education. In recent decades, there has been a steady trend away from (...) the view that parents are in authority over their children and toward the view that children are rights-bearers who should be granted greater authority over themselves. The mature minor doctrine refers to the decision to grant mature minors the authority to make decisions traditionally reserved for their parents. This essay (1) documents the trend towards expanding the understanding of some minors as “mature” and hence as having the right and authority to give informed consent, (2) examines the reasons for which some commentators have a special interest in expanding the mature minor doctrine to the research setting and allowing minors to enroll in research without parental permission, and (3) defends the view that the mature minor doctrine, regardless of its application to clinical health care decisions, ought to be set aside in the research setting in favor of greater parental involvement. (shrink)