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In paediatrics, clinicians and parents sometimes disagree about the appropriate medical treatment for a child. Parents can prefer an option that differs from the clinician's recommendation. When should the parents' decision about their child's medical treatment be overridden?

This book explores ethical decision-making when clinicians and parents disagree about medical treatment for a child. It develops and explores a concept called the zone of parental discretion: an ethical tool that aims to balance children's wellbeing and parents' rights to make medical decisions for their children. Written by experienced clinical ethicists and paediatric clinicians, this book offers ethical analysis and practical guidance based on real-life clinical cases. It aims to assist doctors, nurses, allied health professionals and clinical ethics staff to deal with these ethically challenging situations.

The book is divided into five parts:
1. An ethical tool: the zone of parental discretion
2. Roles of doctors and parents in decision-making
3. Clinicians encountering parental refusals
4. Clinicians encountering parental requests for treatment
5. Clinicians encountering parental requests for interventions on healthy children

Considerable time and resources are invested in the ethics review process. We present qualitative data on how human research ethics committee members and health researchers perceive the role and function of the committee. The findings are based on interviews with 34 Australian ethics committee members and 54 health researchers. Although all participants agreed that the primary role of the ethics committee was to protect participants, there was disagreement regarding the additional roles undertaken by committees. Of particular concern were the perceptions from some ethics committee members and researchers that ethics committees were working to protect the institution's interests, as well as being over-protective toward research participants. This has the potential to lead to poor relations and mistrust between ethics committees and researchers.

There is little empirical evidence about what resources health researchers use in order to make decisions about the ethical conduct of human research. Undertaking an empirical examination of how researchers understand research ethics and how they address ethical issues in research practice can lead to a richer understanding of how researchers approach research ethics. Our findings are based on interviews with 54 Australian health researchers. We conclude that, despite the considerable time devoted to ethics review, ethics committees and research guidelines were not seen as valuable resources for researchers undertaking research in the field. Although researchers did not perceive ethics committees as a resource when faced with ethical issues in the field, they nevertheless perceived the process of ethics review as beneficial to them; this allowed them to clarify their research, make decisions about the ethical conduct of the research, as well as offering them a sense of protection when undertaking research. In the actual undertaking of research practice, it was their past professional experience and personal values that researchers considered most useful resources when encountering ethical problems.

AbstractPlanning for the preterm birth of a fetus with known anomalies can raise complex ethical issues. This is particularly true of multiple pregnancies, where the interests of each fetus and of the expectant parent(s) can conflict. In these complex situations, parental wishes and values can also conflict with the recommendations of treating clinicians. In this article, we consider the case of a dichorionic twin pregnancy complicated by the diagnosis of vein of Galen aneurysmal malformation (VGAM) in one of the twins at 28 weeks' gestation. Subsequent deterioration of the affected twin prompted the parents to request preterm delivery to prevent the imminent in-utero demise of the affected twin. However, given the associated risks of prematurity, complying with the parents' request may have disadvantaged the health and wellbeing of the unaffected twin. This article canvases the complex ethical issues raised when parents request preterm delivery of a multiple pregnancy complicated by a fetal anomaly in one twin, and the various ethical tools and frameworks that clinicians can draw on to guide their decision-making in such cases.

Trust in research is important but not well understood. We examine the ways that researchers understand and practice trust in research. Using a qualitative research design, we interviewed 19 researchers, including eight researchers involved in Australian Indigenous research. The project design focused on sensitive research including research involving vulnerable participants and sensitive research topics. Thematic analysis was used to analyze the data. We found that researchers' understanding of trust integrates both the conceptual and concrete; researchers understand trust in terms of how it relates to other similar concepts and how they practice trust in research. This provides a sound basis to better understand trust in research, as well as identifying mechanisms to regain trust when it is lost in research.

This study explored participants' experiences of randomized controlled trial (RCT) participation to examine their understanding of the trial design and whether their consent was indeed informed. A nested qualitative interview study was conducted with 38 participants from a sample of 282 who participated in a complex RCT evaluating the effectiveness of laser compared with needle acupuncture for chronic knee pain. Overall participants had a good understanding of the RCT, and concepts such as randomization and placebo. Their experiences of being in the trial were largely positive, even if they did not experience any knee pain improvement. Their responses to unblinding at the end of the study were accepting. Participants had a good functional understanding of the RCT, sufficient for valid informed consent.

Relationships of trust between research participants and researchers are often considered paramount to successful research; however, we know little about participants' perspectives. We examined whom research participants trusted when taking part in research. Using a qualitative approach, we interviewed 36 research participants, including eight Indigenous participants. Thematic analysis was used to analyze the data. This article focuses on findings related to non-Indigenous participants. In contrast to Indigenous participants, non-Indigenous participants placed their trust in research institutions because of their systems of research ethics, their reputation and prestige. Researchers working in non-Indigenous contexts need to be cognizant that the trust that participants place in them is closely connected with the trust that participants have in the institution.