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)

At the outset of an ethnographic inquiry, we navigated national and international resources to search for theoretical and practical guidance on obtaining parents and children’s informed consent/assent. While much theoretical guidance debating ethical issues to children’s participation in research was found, a paucity of published papers offering practical guidance on assent processes and/or visual representations of child assent forms and information sheets was discovered. The purpose of this article is to describe our experiences, both theoretically and practically, of negotiating the (...) process of obtaining informed consent and assent with parents and children for a non-therapeutic qualitative research study. We hope this article instigates a platform for others to explicate their experience and contributes to the construction of a coherent body of knowledge which will clearly delineate important elements that must be considered when negotiating children’s agreement to participate in research. (shrink)