BackgroundThis study aimed to determine the elements and the extent of information that child participants and their parents would like to read in an informed assent form /informed consent form of a pediatric drug trial.MethodsA descriptive survey was conducted to determine the perceived importance of each element of the ICF content from child participants and their parents who underwent informed assent/consent of a multi-center pediatric drug trial. The respondents were asked to indicate the level of importance of each item in (...) a questionnaire, by giving a rating scale from 1 to 5.ResultsA total of 22 families, 17 child participants with the diagnosis of hematology or oncology diseases and 27 parents, were enrolled. Among 30 items, risk–benefit aspects were perceived to be of most concerning items from both child participants’ and parents’ viewpoint. None of the items were considered ‘slightly important’ or lower by more than 20% of the respondents.ConclusionsFor pediatric drug trials, risk–benefit information should be made a salient feature of an IAF/icf. This empirical data could help related stakeholders arrange essential information in order of importance and tailor an IAF/icf to better suit child participants’ and parents’ needs, particularly for pediatric drug trials involving children with the diagnosis of hematology or oncology diseases. (shrink)

Elite domination is recognized as a significant downside of “linking social capital,” but its remedies are under-theorized and scarcely documented. Addressing this gap, we argue that bonding or bridging ties characterized by strong reflexivity, awareness of the state’s symbolic violence, and rich cultural resources for cross-fertilization serve as countervailing mechanisms against unresponsive linking ties. If bonding and bridging ties lack these characteristics, even when those ties are numerous, they are unlikely to challenge unresponsive linking ties. Our theoretical argument is substantiated (...) through a three-village comparison in Taiwan during the post-Typhoon Morakot reconstruction period, where linking ties among most disaster areas, state agencies, and large NGOs were deployed to promote elite agendas. Based on forty-five in-depth interviews, our findings suggest that in Namaxia, where all three features identified in our framework were absent in bonding and bridging ties, grassroots resistance against unresponsive linking ties largely failed. In Jialan, bonding networks displayed strong social reflexivity, but neither bonding nor bridging ties cultivated awareness of the state’s symbolic violence or cultural resources for cross-fertilization. The village only partially succeeded in challenging unresponsive linking ties. In Ali, where local bonding and bridging networks developed all three features mentioned above, the village successfully transformed unresponsive linking ties. The conceptual delinking of network homogeneity/heterogeneity and exclusivity/inclusivity in this study bears broader implications for social capital theories. (shrink)

With the increasing number of human disasters in recent years, disaster service workers are faced with an ever-growing challenge of criticism concerning their professional competence. The workers also realize the limitation inherent in their practice, as well as bioethics problems regarding autonomy and heteronomy. Therefore, professionals and researchers of human service devote to the issue of post-disaster rehabilitation of the people so as to identify an effective way and practice to aid the post-disaster individual, family and community. This study explores (...) the effectiveness of rehabilitative function of disaster service workers through the action research of Typhoon Morakot and the 2014 Gas Explosion in Kaohsiung City, Taiwan. The case studies serves as a platform for thediscussion of principles of bioethics and the analysis of the process of self-discipline of the workers of human services in hope of ultimately establishing bioethical principles for heteronomy during disasters and work indicators for post-disaster community restoration. Discuss Issues are 1. How can self-discipline in bioethics be achieved for the human service workers during times of disaster? 2. In post-disaster reconstruction, how does the human service worker take into? account bioethical principles to serve and partake in the restoration of the postdisaster life of community residents? 3. During the process of a disaster research, what are the bioethical considerations to be taken into for the test subjects? Conclusion and suggestions: To formulate indicators for a post-disaster “community of health and wellness;” to establish bioethical principles of heteronomy for disaster service workers. (shrink)