Assent is an important ethical and legal requirement of paediatric research. Unfortunately, there are significant differences between the guidelines on the details of assent.

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making to the extent (...) that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care. (shrink)

In a Norwegian study on how children aged 7-12 years cope during a period of serious illness within the family and on their quality of life at this time, several ethical questions became apparent. These were mainly concerned with the vulnerability of children during research, with their ability to make autonomous decisions, and with considerations regarding how to respect their right to confidentiality during the research process. In this article we approach these questions using our experience from this previous study, (...) discussing them within the framework of theories of ethics and relevant research ethical guidelines. Finally, we discuss our experience in the light of the overall purpose of this article: how to deal with the ethical dilemmas that may appear during research involving young children. (shrink)

The treatment of life-threatening illnesses in childhood is replete with ethical issues and with clinical issues that have ethical implications. The central issues are those involved with a child's participation in the decision-making process and with communication of information about the illness and treatments to children. This article examines the questions of patient autonomy and of parental responsibility and prerogative in the context of pediatric oncology. Included in this examination of the ethical dimensions of pediatric life-threatening illness is a discussion (...) of the many related aspects involved, including medical, cultural, psychosocial, legal, and developmental. A multidimensional approach that considers the ways in which these multiple aspects interact with one another, and which focuses on establishing a strong working alliance between the health care team and the pediatric patient's family, can help to avoid or resolve potential ethical and clinical conflicts. (shrink)

Background: The ability to consent promotes children’s access to health services. Healthcare providers should assess and arrive at a clinical judgement about the child’s maturity and mental capacity to obtain valid consent. Research objective: The objective of the study was to determine practices employed by South African healthcare providers to obtain consent for treatment from children. Research design: A qualitative, explorative, descriptive research design was used and the study was contextual. Participants and research context: In all, 24 healthcare providers (professional (...) nurses and medical practitioners) were purposively sampled from a hospital and primary health clinics. Semi-structured interviews were used. Ethical consideration: Ethical approval was obtained from the Institutional Review Board and gatekeepers. Written informed consent was obtained from each participant. Findings: Healthcare providers’ current practices in obtaining consent from children revealed inconsistency in implementation as well as the yardstick used to determine children’s mental capacity. Building trust with children, sharing information and assessment were interlinked in obtaining consent. Discussion: The inconsistent practice has implications for children’s access to healthcare services. Conclusion: Inconsistent practices in the implementation of consent laws have the potential to violate children’s rights to bodily and psychological integrity, access to health services and having their opinions heard and be taken into consideration. Through uncovering the current perceptions and practices and a literature review, guidelines intended for use by the Department of Health could be developed. (shrink)

Discharge planning for vulnerable infants and children is a collaborative, inter-disciplinary, decision-making activity that is grounded in the ethical complexities of clinical practice. Although it is a psychosocial intervention that frequently causes moral distress for professionals and has the potential to inflict harm on children and their families, the process has received little attention from ethicists. An ongoing study of the transition of technology-dependent children from hospital to home suggests that the ethical issues embedded in the discharge-planning process may be (...) concealed by dominant cultural values, institutional policies, clinical standards, historical precedents, and legal regulations. (shrink)

Re-assent of adolescent females enrolled in clinical research through the onset of puberty is necessary to respect their rights to access sexual and reproductive health information, their rights under HIPAA as well as assuring compliance with the Common Rule.