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When a study involves human participants, researchers need to ensure their safety and protect their identities. How do potential participants know what they are agreeing to contribute, and how and why the research is being conducted? Informed consent describes the process and agreements that answer such questions. Conventional consent protocols focused on preresearch discussions between the researcher and the potential participant, resulting in a signed document that verified the agreement. In research conducted with, on, or through social media, there are fewer opportunities for conversational explanations of formal documents. Simply posting legalistic documents is ineffective because Internet users typically do not read such materials before verifying agreement. Researchers need to understand communities, contexts, and communication styles of target participants and settings in order to provide information in familiar, user-friendly ways. Based on a review of literature about informed consent, and a study of current practices used by companies that need to verify agreements online, practical research suggestions are offered. Qualitative researchers who want to collect data through active interactions with human participants will find these examples and recommendations of use when designing their studies.

Encouraging patient involvement is a cornerstone of many healthcare interventions and decision-making models to ensure that treatment decisions reflect the needs, values, and desires of patients. Involved patients are thought to be empowered patients who feel a sense of efficacy in regards to their own health. However, there is a lack of understanding of how patients relate to empowerment and involvement and, most importantly, how these constructs relate to one another in patients’ decision-making experiences.

Through an inductive analysis, this chapter draws on qualitative interviews of women diagnosed with breast cancer prior to 40 years of age (n = 69).

By examining the intersection of how patients define their own involvement in treatment decisions and their sense of empowerment, we find four orientations to decision-making (Advocates, Bystanders, Co-Pilots, and Downplayers) with involvement and empowerment being coupled for some respondents, but decoupled for others.

Our findings suggest expanding what it means to be an “active” patient as respondents had multiple ways of characterizing involvement, including being informed or following their doctor’s advice. Our findings also suggest a more critical examination of the origins and potential downsides of patient empowerment as some respondents reported feeling overwhelmed or pushed into advocacy roles. The sample was disproportionately higher socioeconomic status with limited racial/ethnic diversity. Empowerment and involvement may be enacted differently for other social groups and other medical conditions.

By examining first-person patient narratives, we conclude that patients’ experience may not fully align with current academic or clinical discussions of patient involvement or empowerment.

Despite the existence of a variety of approaches to the understanding of behavioral and managerial ethics in organizations and business relationships generally, knowledge of organizing systems for fidelity remains in its infancy. We use halakha, or Jewish law, as a model, together with the literature in sociology, economic anthropology, and economics on what it termed “middleman minorities,” and on what we have termed the Landa Problem, the problem of identifying a trustworthy economic exchange partner, to explore this issue.

The article contrasts the differing explanations for trustworthy behavior in these literatures, focusing on the widely referenced work of Avner Greif on the Jewish Maghribi merchants of the eleventh century. We challenge Greif’s argument that cheating among the Magribi was managed chiefly via a rational, self-interested reputational sanctioning system in the closed group of traders. Greif largely ignores a more compelling if potentially complementary argument, which we believe also finds support among the documentary evidence of the Cairo Geniza as reported by Goitein: that the behavior of the Maghribi reflected their deep beliefs and commitment to Jewish law, halakha.

Applying insights from this analysis, we present an explicit theory of heroic marginality, the production of extreme precautionary behaviors to ensure service to the principal.

Generalizing from the case of halakha, the article proposes the construct of a deep code, identifying five defining characteristics of such a code, and suggests that deep codes may act as facilitators of compliance. We also offer speculation on design features employing deep codes that may increase the likelihood of production of behaviors consistent with terminal values of the community.

This chapter discusses the relationships between researchers and parent participants in a project that aimed to empower parents to support their children's informal mathematics learning. The Everyday Maths project used a parent-centred approach to empower parents in supporting their children's maths learning at home, through a series of workshops that took place in primary schools. In particular, we focus on relational issues between us (as researchers), parents, and schools – specifically, the way in which those relationships enabled both researchers and participants to develop new ways of thinking about their roles and positions, as well as develop their understanding about mathematics and about research. Relational agency (Edwards, 2010, 2017a) is used to understand the way in which these relationships played out. We also consider the way in which schools, as hosts of the project, impacted on this thinking. We reflect on schools' positions in the dynamics: they welcomed and supported our project, but as the project evolved, we questioned the way that schools positioned parents in relation to supporting children's learning, and encouraged parents to rethink their role. The potential for such disruption of relationships will be considered from an ethical stance. As researchers, we explore the ways in which we came to recognise each other's perspectives and develop a set of common understandings that were fundamental to our methodological approaches in this study.