In order for children to receive the best possible medical treatment, it is essential that research is conducted to discover safe and effective interventions and dosages. This article focuses on the legal and ethical implications of recruiting into health-care research minors who are not competent to consent. It considers the role played by best interests in obtaining valid parental consent for the participation of children in research, both at common law and under the Regulations that govern (...) clinical trials of medicinal products. In doing so it questions the legality of parental consent to children's involvement in research, and identifies some inconsistencies in parental understandings of best interests in relation to medical research and treatment. (shrink)

Ethical issues about children’s rights in respect of matters concerning resource allocation or treatment opportunities are now a matter for public consumption and concern. Alongside this exists a long-frustrated desire by children’s nurses to promote children’s health. Long-held assumptions about the legal and moral status of children within the health care system in this country are now rightly scrutinized and challenged. Those of us who claim to represent children now possess an opportunity (...) to exploit public attention for the benefit of these children. This article will explore selected major relevant legal and moral concepts that relate to children with the aim of making transparent some of the important and often confusing information available. It is anticipated that debates about the legal and ethical status of children may be stimulated and fuelled from the following discussion. It is strongly recommended that entering into dialogue with families and children about their perceived needs will go a long way towards advancing thoughtful nursing care of individual children, their families and the general population. (shrink)

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. (...) Parents need the moral and legal space within which to make decisions that will facilitate their child's long‐term autonomy, not only her present‐day autonomy. Moreover, third‐party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making. (shrink)

The family, like so many other modern institutions, often looks more like an arena of competing wills than an ordered life in common. If we hope, therefore, to protect the special role that parents should have in relation to their children, and that the family in general should have in relation to its members, we will need a much more developed account of the goods that are at stake and why we think they are important enough to require authority, (...) even when members of the family oppose the decisions of that authority. This essay develops an older account of authority, one rooted in the thought of Aristotle and St. Thomas Aquinas, and applies this account to our present difficulties concerning the authority of the family over its members in health care decision making. (shrink)

A dearth of clinical research involving children has resulted in off-licence and sometimes inappropriate medications being prescribed to the paediatric population. In this environment, recent years have seen the introduction of a raft of regulation aimed at increasing the involvement of children in clinical trials research and generating evidence-based medicinal preparations for their use. However, this regulation pays scant attention to the autonomy of competent minors. In particular, it makes no provision for the ability of competent minors to (...) consent to participate in medical research and is therefore at odds with best ethical practice. This article explores the tensions between law and ethics in relation to clinical research involving minors and concludes that greater respect should be given to the autonomy of those minors who are competent to decide for themselves. (shrink)

Parents in the US and other societies are increasingly refusing to vaccinate their children, even though popular anti-vaccine myths – e.g. ‘vaccines cause autism’ – have been debunked. This book explains the epistemic and moral failures that lead some parents to refuse to vaccinate their children. First, some parents have good reasons not to defer to the expertise of physicians, and to rely instead upon their own judgments about how to care for their children. Unfortunately, epistemic (...) self-reliance systematically distorts beliefs in areas of inquiry in which expertise is required. Second, vaccine refusers and mainstream medical authorities are often committed to different values surrounding health and safety. For example, while vaccine advocates stress that vaccines have low rates of serious complications, vaccine refusers often resist vaccination because it is ‘unnatural’ and because they view vaccine-preventable diseases as a ‘natural’ part of childhood. Finally, parents who refuse vaccines rightly resist the utilitarian moral arguments – ‘for the greater good’ – that vaccine advocates sometimes make. Unfortunately, vaccine refusers also sometimes embrace a pernicious hyper-individualism that sanctions free-riding on herd immunity and that cultivates indifference to the interpersonal and social harms that unvaccinated persons may cause. (shrink)

On 27 September 2002, the Bush administration issued final rules allowing states to define a fetus as a child eligible for government‐subsidized health care under the Children's Health Insurance Program. CHIP does not cover any illegal immigrants and only covers legal immigrants who have been in the country for five years. Babies born in the United States, however, are citizens and therefore eligible for assistance. The response from women's groups and pro‐choice advocates was swift and unanimously (...) negative. (shrink)

The new South African constitution commits the government to guarantee "basic health services" for every child under 18. Primary health care for pregnant women and children under six and elements of essential primary health care have received priority. At present, there is little analysis of the moral considerations involved in making choices about more advanced or costly health care which may, arguably, also be "basic". This paper illustrates some of the tensions in (...) setting priorities for a just macro-allocation of children's health care, given the realities of need and scarce resources, and the commitment to equality of basic opportunities. (shrink)

Background: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes. Methods: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology centers. The interviews were analyzed using thematic coding. Results: Parenting styles, the child's personality, and maturity are factors that have a great (...) impact upon the inclusion of children in their health care processes. Children reported the desire to be heard and involved, but they did not want to dominate the decision-making process. Ensuring trust in the parent–child and physician–patient relationships and respecting the child as the affected person were important values determining children's involvement. These two considerations were closely connected with the concern that fantasies are often worse than reality. Seeking children's compliance with treatment was a practical but critical reason for informing them about their health care. The urge to protect them from upsetting news sometimes resulted in their (partial) exclusion. Conclusions: The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities. (shrink)

The future will be controlled by those nations which most intelligently allocate their resources. Our nation's capital is the stored flexibility needed by our children to meet the future. How we allocate our nation's limited resources and capital will dictate the kind of lives our children will lead. We are not correctly or intelligently allocating our nation's health care resources. There are serious internal contradictions in a society that no longer produces the radios, televisions, or video (...) recorders it invented, yet pays for all patients receiving lung transplants and artificial hearts. While moving our basic value-producing industries - steel and automobiles - abroad, we continue to manufacture MX missiles and artificial hearts. We give heart transplants to smokers, but we close our steel mills. We spend freely on military and medicine, yet we refuse to spend enough to succeed in international trade. We overtreat sick people but undertreat our sick economy. Like the fading southern family in William Faulkner novels that "takes sick," as a nation we are treating our illnesses at the expense of our livelihoods. (shrink)

A growing volume of research from global data demonstrates that institutional care under conditions of deprivation is profoundly damaging to children, particularly during the critical early years of development. However, how these individuals develop over a life course remains unclear. This study uses data from a survey on the health and development of 420 children mostly under the age of three, placed in 12 infant care institutions between 1958 and 1961 in Zurich, Switzerland. The (...) class='Hi'>children exhibited significant delays in cognitive, social, and motor development in the first years of life. Moreover, a follow-up of a subsample of 143 children about 10 years later revealed persistent difficulties, including depression, school related-problems, and stereotypies. Between 2019 and 2021, these formerly institutionalized study participants were located through the Swiss population registry and invited to participate once again in the research project. Now in their early sixties, they are studied for their health, further development, and life-course trajectories. A mixed-methods approach using questionnaires, neuropsychological assessments, and narrative biographical interviews was implemented by a multidisciplinary team. Combining prospective and retrospective data with standardized quantitative and biographical qualitative data allows a rich reconstruction of life histories. The availability of a community sample from the same geographic location, the 1954–1961 cohort of the Zurich Longitudinal Studies, described in detail in a paper in this issue, enables comparison with an unaffected cohort. This article describes the study design and study participants in detail and discusses the potential and limitations of a comparison with a community sample. It outlines a set of challenges and solutions encountered in the process of a lifespan longitudinal study from early childhood into the cusp of old age with a potentially vulnerable sample and summarizes the lessons learned along the way. (shrink)

A couple and their five‐year‐old daughter are in a car accident. The parents are not expected to survive. The child is transported to a children's hospital, and urgent treatment decisions must be made. Whom should the attending physician approach to make decisions for the child? When such cases arise in, for example, the hospitals where we work, the social worker or chaplain is instructed to use the Illinois Health Care Surrogacy Act as a guidepost to identify a (...) decision‐maker. But in our state and the country overall, the limitations of such statutes leave hospital workers to make a judgment call among friends, family, and clergy who may come forward. While surrogate decision‐making statutes comprehensively address surrogate decision‐makers for adults, a patchwork of laws—permanency statutes, kinship provider statutes, standby guardianship statutes, and, in some cases, surrogate decision‐making statutes—provide variable decision‐making pathways for children. (shrink)

IntroductionThere is a significant disparity in the United States between the health care received by children with special health care needs versus physically healthy children.ObjectiveThe objective of the paper is to show that children with special needs receive less than adequate health care overall. This disparity affects the quality of life for these children and influences their ability to live their lives to their full potential.MethodsResearch was conducted by examining multiple (...) studies with a focus on six major factors that play a role in creating this disparity.ResultsThe findings show an alarming trend in the access and delivery of health care to children with special health care needs.ConclusionsSolutions to correcting the disparities are possible, but it will take a full understanding of the issues, perseverance, dedication, and hard work on the part of families, physicians, legislators, and others genuinely interested in creating an equal health care system for all children. (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)

America's patchwork quilt of health care coverage is coming apart at the seams. The system, such as it is, is built upon an inherently problematic base: employment. By definition, an employment-based approach, by itself, will not assure universal coverage of the entire population. If an employment-based approach is to be the centerpiece of a system that provides universal coverage, special attention must be paid to all the categories of individuals who are not employees – children, unemployed spouses (...) or singles, the unemployable ill and disabled, persons between jobs, students, retirees, the elderly. Moreover, in a purely voluntary employment-based arrangement, some employers will not provide insurance at all, and others will provide inadequate coverage, necessitating other special provisions for coverage. As a consequence, about one out of six people now has no health coverage whatsoever, and even more have inadequate coverage. All the while, the rapidly-increasing transaction costs of sustaining this grossly inadequate pluralistic system eat up sufficient funds to provide basic benefits to the entire population. The time for systematic reforms has come and gone; what is now needed is action to prevent disaster, followed by a complete rebuilding of this country's health coverage system. Although perhaps more likely to be tried than more radical, completely nationalized, ones, stepwise reforms may not go far enough to cure the significant ills of the current employment-based system. Passage of inadequate reforms, then, could well set the stage for nationalized health care in the not too distant future. (shrink)

Primary research on HIV/AIDS in India has predominantly focused on known risk groups such as sex workers, STI clinic attendees and long-distance truck drivers, and has largely been undertaken in urban areas. There is evidence of HIV spreading to rural areas but very little is known about the context of the infection or about issues relating to health and social impact on people living with HIV/AIDS. In-depth interviews with nineteen men and women infected with HIV who live in rural (...) areas were used to collect experiences of testing and treatment, the social impacts of living with HIV and differential impacts on women and men. Eight focus group discussions with groups drawn from the general population in the four villages were used to provide an analysis of community level views about HIV/AIDS. While men reported contracting HIV from sex workers in the cities, women considered their husbands to be the source of their infection. Correct knowledge about HIV transmission co-existed with misconceptions. Men and women tested for HIV reported inadequate counselling and sought treatment from traditional healers as well as professionals. Owing to the general pattern of husbands being the first to contract HIV women faced a substantial burden, with few resources remaining for their own or their children’s care after meeting the needs of sick husbands. Stigma and social isolation following widowhood were common, with an enforced return to the natal home. Implications for potential educational and service interventions are discussed within the context of gender and social relations. (shrink)

Scholars increasingly point toward schools as meaningful contexts in which to provide psychosocial care for refugee children. Collaborative mental health care in school forms a particular practice of school-based mental health care provision. Developed in Canada and inspired by systemic intervention approaches, collaborative mental health care in schools involves the formation of an interdisciplinary care network, in which mental health care providers and school partners collaborate with each other and (...) the refugee family in a joint assessment of child development and mental health, as well as joint intervention planning and provision. It aims to move away from an individual perspective on refugee children’s development, toward an engagement with refugee families’ perspectives on their migration histories, cultural background and social condition in shaping assessment and intervention, as such fostering refugee empowerment, equality, and participation in the host society. Relating to the first stage of van Yperen’s four-stage model for establishing evidence-based youth care, this article aims to engage in an initial exploration of the effectiveness of a developing school-based collaborative mental health care practice in Leuven, Belgium. First, we propose a detailed description, co-developed through reflection on case documents, written process reflections, intervision, an initial identification of intervention themes, and articulating interconnections with scholarly literature on transcultural and systemic refugee trauma care. Second, we engage in an in-depth exploration of processes and working mechanisms, obtained through co-constructed clinical case analysis of case work collected through our practice in schools in Leuven, Belgium. Our descriptive analysis indicates the role of central processes that may operate as working mechanisms in school-based collaborative mental health care and points to how collaborative mental health care may mobilize the school and the family-school interaction as a vehicle of restoring safety and stability in the aftermath of cumulative traumatization. Our analysis furthermore forms an important starting point for reflections on future research opportunities, and central clinical dynamics touching upon power disparities and low-threshold access to mental health care for refugee families. (shrink)

One area in which children’s rights are rarely considered in the USA is that of autonomy over their bodies. This right is routinely ignored in the arena of health care decision making. Children are routinely excluded from expressing their opinions involving medical decisions that affect them. This article discusses the complex reasons why children’s voices are typically not heard in the USA, the consequences of their disempowerment, and the ethical obligations of health care (...) providers to advocate for the rights of children, even in the absence of a legal mandate to do so. (shrink)

One area in which children’s rights are rarely considered in the USA is that of autonomy over their bodies. This right is routinely ignored in the arena of health care decision making. Children are routinely excluded from expressing their opinions involving medical decisions that affect them. This article discusses the complex reasons why children’s voices are typically not heard in the USA, the consequences of their disempowerment, and the ethical obligations of health care (...) providers to advocate for the rights of children, even in the absence of a legal mandate to do so. (shrink)

Children themselves place a high value on their own spiritual care when in hospital. However, the spiritual care of children in hospital is often overlooked. Hospitalisation and medical procedures can be traumatic and overwhelming for children, they often see hospitalisation as punishment for something they did wrong and they can even experience spiritual distress during illness and suffering. The spiritual care of hospitalised children should thus be a priority to help these children (...) making sense of pain and suffering, and assisting them to connect with a loving and forgiving God. Spirituality namely influences a diverse range of human concerns such as beliefs about illness and health, fears, relationships with family and friends and the experience of pain and suffering. Unfortunately, children often harbour misconceptions precisely in these areas. This article will draw directly on the given that children are concrete thinkers, yet able to have an understanding of holiness and God as the Holy One, if they receive the right guidance. The study will explore children’s spirituality and the way in which they experience holiness in the healthcare environment from a nursing science perspective. (shrink)

Introduction: Schools have become a primary setting for providing mental health care to youths in the U.S. School-based interventions have proliferated, but their effects on mental health and academic outcomes remain understudied. In this study we will implement and evaluate the effects of a flexible multidiagnostic treatment called Modular Approach to Therapy for Children with Anxiety, Depression, Trauma, or Conduct Problems on students' mental health and academic outcomes.Methods and Analysis: This is an assessor-blind randomized controlled (...) effectiveness trial conducted across five school districts. School clinicians are randomized to either MATCH or usual care treatment conditions. The target sample includes 168 youths referred for mental health services and presenting with elevated symptoms of anxiety, depression, trauma, and/or conduct problems. Clinicians randomly assigned to MATCH or UC treat the youths who are assigned to them through normal school referral procedures. The project will evaluate the effectiveness of MATCH compared to UC on youths' mental health and school related outcomes and assess whether changes in school outcomes are mediated by changes in youth mental health.Ethics and Dissemination: This study was approved by the Harvard University Institutional Review Board. We plan to publish the findings in peer-reviewed journals and present them at academic conferences.Clinical Trial Registration:ClinicalTrials.gov ID: NCT02877875. Registered on August 24, 2016. (shrink)

Ten years ago, when I was president and chief executive officer of Rady Children's Hospital in San Diego, if you had asked me about our commitment to environmental sustainability or about the hospital's carbon footprint, I would have given you a blank look. The issues were simply not on my radar screen. And that was true of most health care leaders.The good news? Environmental sustainability is becoming a health care priority, and exciting progress is occurring. (...) In Greening Health Care: How Hospitals Can Heal the Planet, Kathy Gerwig eloquently relates how one leading large health care system, Kaiser Permanente, achieved remarkable results in responding to the environmental health challenge over the past several years. (shrink)