The use of artistic forms as an alternative means for representing research findings is gaining acceptance in the research community. There are, however, important yet unresolved and even contentious issues arising from these new applications of the arts. These include concerns about the level of expertise required to effectively utilize the arts in research, the appropriateness of various methods of creating artworks and the desirability of identifying criteria for assessing arts-based contributions. Centring on the question of criteria for the creation and assessment of arts-based works, we note that there are, at present, few salient guidelines. Drawing upon our experience in conducting a pilot project employing arts-based methods of representing research findings, we propose a Guiding Arts-Based Research Assessment (GABRA) meta-framework for assessing the quality and effectiveness of utilizing the arts for knowledge dissemination. This overarching framework incorporates normative, substantive and performative aspects of arts-based methods of representing research findings.
TRUST IS FUNDAMENTAL in health research, yet there is little empirical evidence that explores the meaning of trust from the perspective of human subjects. The analysis presented here focuses on how human subjects talked about trust in the in-depth interviews. It emerged from the accounts that trust could not be assumed in the research setting, rather it was portrayed as a dynamic concept, built and easily broken, characterized by reciprocity and negotiation. Human subjects were ambivalent about who, when, what, and how much to trust in the research endeavor. This paper adds a fresh perspective to the literature on trust, and so offers a currently neglected, and little understood dimension to the discourse around health research ethics.
This study examines the process of communicating BRCA1/2 genetic test results to family members, and the factors influencing disclosure. Twenty-nine semi-structured telephone interviews with BRCA1/2 tested individuals, 4 to 9 years post-notification, were conducted. Our results suggest that individual, familial, relational and socio-medical factors influence the decision to disclose/not disclose genetic test results to family members. These factors are at play in all three communication phases: the Decision-making phase, in which the individual ponders various factors before deciding to disclose test results to family members; the Disclosure phase, in which communication per se takes place; and the Reaction phase, which shapes the participant's subsequent disclosure/non-disclosure decisions. We propose a guiding framework to assist in identifying and evaluating significant factors that might shape the course and outcome of the transmission of genetic information to family members.
This literature review seeks to examine knowledge dissemination interventions (KDIs) implemented in health research and gauge their effectiveness on three kinds of outcomes: (a) knowledge acquisition, (b) changes in attitudes, and (c) changes in practice. MEDLINE and Cumulative Index to Nursing and Allied Health Literature databases from 2006 to 2011 were searched. Nineteen articles were retrieved. Most of the KDIs that were evaluated had a positive impact on knowledge acquisition and changes in attitudes, but a limited one on practice. KDIs are diverse in terms of knowledge, actors, contexts, and dissemination methods. They cannot be readily applicable to other projects.
Use of online health information is positively associated with citizen knowledge, empowerment, selfcare, health outcomes, and quality of life. However, little is known about how mothers with incomes below the poverty threshold and with education levels of high school or less use and interact with the Internet as a key source of lay knowledge and skills for infant care and childrearing. Our objective in this study was to understand mothers' perceptions of their experience in using online information for these purposes. To obtain a rich and nuanced understanding of their experience, we used a qualitative study approach based on 40 individual semi-structured interviews with mothers. Adopting Freidson's concept of "lay referral system" to grasp mothers' experience with online parenting information, we found that they relied on this information source extensively. Our findings showed that Internet-based information and online interactions were part of their lay referral system and modified to some extent how they interacted with their lay consultants (family and friends). Three major themes emerged in relation to how the Internet functioned as a component of the mothers' lay referral systems: (1) strategic use of the Internet for better parenting; (2) critical stance towards the Internet; and (3) strengthening of autonomy, skills, and self-confidence. Mothers with spouses and an active social network were more likely to use online information to complement information obtained from their entourage or from professionals than were mothers with a less active social network or who were more socially isolated.
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