Background In Canadian jurisdictions without specific legislation pertaining to research consent, the onus is placed on researchers to determine whether a child is capable of independently consenting to participate in a research study. Little, however, is known about how child health researchers are approaching consent and capacity assessment in practice. The aim of this study was to explore and describe researchers' current practices. Methods The study used a qualitative descriptive design consisting of 14 face-to-face interviews with child health researchers and (...) research assistants in Southern Ontario. Transcribed interviews were analysed for common themes. Results Procedures for assessing capacity varied considerably from the use of age cutoffs to in-depth engagement with each child. Three key issues emerged from the accounts: (1) requirements that consent be provided by a single person thwarted researchers' abilities to support family decision-making; (2) little practical distinction was made between assessing if a child was capable, versus determining if study information had been adequately explained by the researcher; and (3) participants' perceived that review boards' requirements may conflict with what they considered ethical consent practices. Conclusion The results suggest that researchers' consent and capacity knowledge and skills vary considerably. Perceived discrepancies between ethical practice and ethics boards' requirements suggest the need for dialogue, education and possibly ethics board reforms. Furthermore we propose, where appropriate, a ‘family decision-making’ model that allows parents and their children to consent together, thereby shifting the focus from separate assent and consent procedures to approaches that appropriately engage the child and family. (shrink)

Background Transcranial direct current stimulation (tDCS) is a brain stimulation technique currently being researched as an alternative or complimentary treatment for various neurological disorders. There is little knowledge about experiences of the participants of tDCS clinical research, especially from pediatric studies. Methods An interview study with typically developing minors (n = 19, mean age 13,66 years) participating in a tDCS study, and their parents (n = 18) was conducted to explore their views and experiences and inform the ethical analysis. Results (...) Children (10–13 years old) and adolescents (14–18 years old) reported good experiences with the stimulation. Next to financial incentives, main motives to participate in the study were curiosity and the possibility to help develop treatments for children affected by neurological disorders. They could also see a potential of using tDCS in a non-medical setting, especially regarding the provision of equal opportunity, e.g. in education. Parents also presented a positive attitude towards tDCS and their children participation in the basic research study. Nevertheless, their understanding of tDCS was rather poor. Even though many of them understood the techniques, they often did not see the link between the (current) lack of side effects and an absence of longitudinal studies. Parents were also cautious about using tDCS for non-medical/enhancement purposes. Conclusions The study findings show a need for more transparent information about the state of the art of tDCS, its function and what it might be able to offer, especially considering the good acceptability of tDCS. (shrink)