'You give us rangoli, we give you talk': using an art-based activity to elicit data from a seldom heard group

<p>Abstract</p> <p>Background</p> <p>The exclusion from health research of groups most affected by poor health is an issue not only of poor science, but also of ethics and social justice. Even if exclusion is inadvertent and unplanned, policy makers will be uninformed by the data and experiences of these groups. The effect on the allocation of resources is likely to be an exacerbation of health inequalities.</p> <p>Discussion</p> <p>We subject to critical analysis the notion that certain groups, by virtue of sharing a particular identity, are inaccessible to researchers - a phenomenon often problematically referred to as 'hard to reach'. We use the term 'seldom heard' to move the emphasis from a perceived innate characteristic of these groups to a consideration of the methods we choose as researchers. Drawing on a study exploring the intersections of faith, culture, health and food, we describe a process of recruitment, data collection and analysis in which we sought to overcome barriers to participation. As we were interested in the voices of South Asian women, many of whom are largely invisible in public life, we adopted an approach to data collection which was culturally in tune with the women's lives and values. A collaborative activity mirroring food preparation provided a focus for talk and created an environment conducive to data collection. We discuss the importance of what we term 'shoe leather research' which involves visiting the local area, meeting potential gatekeepers, and attending public events in order to develop our profile as researchers in the community. We examine issues of ethics, data quality, management and analysis which were raised by our choice of method.</p> <p>Summary</p> <p>In order to work towards a more theoretical understanding of how material, social and cultural factors are connected and influence each other in ways that have effects on health, researchers must attend to the quality of the data they collect to generate finely grained and contextually relevant findings. This in turn will inform the design of culturally sensitive health care services. To achieve this, researchers need to consider methods of recruitment; the makeup of the research team; issues of gender, faith and culture; and data quality, management and analysis.</p

Cambridge Quarterly of Healthcare Ethics

2139-1401

Developing and applying a deductive coding framework to assess the goals of Citizen/Community Jury deliberations

Background: Public participation in health policy decision making is thought to improve the quality of the decisions and enhance their legitimacy. Citizen/Community Juries (CJs) are a form of public participation that aims to elicit an informed community perspective on controversial topics. Reporting standards for CJ processes have already been proposed. However, less clarity exists about the standards for what constitutes a good quality CJ deliberation-we aim to begin to address this gap here. Methods: We identified the goals that underlie CJs and searched the literature to identify existing frameworks assessing the quality of CJ deliberations. We then mapped the items constituting these frameworks onto the CJ goals; where none of the frameworks addressed one of the CJ goals, we generated additional items that did map onto the goal. Results: This yielded a single operationalized deductive coding framework, consisting of four deliberation elements and four recommendation elements. The deliberation elements focus on the following: jurors\u27 preferences and values, engagement with each other, referencing expert information and enrichment of the deliberation. The recommendation elements focus on the following: reaching a clear and identifiable recommendation, whether the recommendation directly addresses the CJ question, justification for the recommendation and adoption of societal (rather than individual) perspective. To explore the alignment between this framework and the goals underlying CJs, we mapped the operationalized framework onto the transcripts of a CJ. Conclusion: Results suggest that framework items map well onto what transpires in an actual CJ deliberation. Further testing of the validity, generalizability and reliability of the framework is planned

Public Deliberation in Health Policy and Bioethics: Mapping an emerging, interdisciplinary field

For over two decades, the “deliberative turn” has rooted itself in the fields of health policy and bioethics, producing a growing body of deliberation in action and associated academic scholarship. With this growing use and study of citizen deliberation processes in the health sector, we set out to map this dynamic field to highlight its diversity, interdisciplinarity, stated and implicit goals and early contributions. More specifically, we explored how public deliberation (PD) is being experimented with in real-world health settings, with a view to assessing how well it is meeting current definitions and common features of PD. Our review provides an informative and up-to-date set of reflections on the relatively short but rich history of public deliberation in the health sector. This emerging, interdisciplinary field is characterized by an active community of scholars and practitioners working diligently to address a range of bioethics and health policy challenges, guided by a common but loosely interpreted set of core features. Current definitions and conceptualizations of public deliberation’s core features would benefit from expansion and refinement to both guide and respond to practice developments. Opportunities for more frequent cross-disciplinary and theory-practice exchange would also strengthen this field.</jats:p

Ethics Rounds: Death After Pediatric Dental Anesthesia: An Avoidable Tragedy?

Early childhood caries (ECC) is the single most common chronic childhood disease. In the treatment of ECC, children are often given moderate sedation or general anesthesia. An estimated 100 000 to 250 000 pediatric dental sedations are performed annually in the United States. The most common medications are benzodiazepines, opioids, local anesthetics, and nitrous oxide. All are associated with serious adverse events, including hypoxemia, respiratory depression, airway obstruction, and death. There is no mandated reporting of adverse events or deaths, so we don’t know how often these occur. In this article, we present a case of a death after dental anesthesia and ask experts to speculate on how to improve the quality and safety of both the prevention and treatment of ECC.</jats:p

Public Deliberation in Health Policy and Bioethics: Mapping an emerging, interdisciplinary field

For over two decades, the deliberative turn has rooted itself in the fields of health policy and bioethics, producing a growing body of deliberation in action and associated academic scholarship. With this growing use and study of citizen deliberation processes in the health sector, we set out to map this dynamic field to highlight its diversity, interdisciplinarity, stated and implicit goals and early contributions. More specifically, we explored how public deliberation (PD) is being experimented with in real-world health settings, with a view to assessing how well it is meeting current definitions and common features of PD. Our review provides an informative and up-to-date set of reflections on the relatively short but rich history of public deliberation in the health sector. This emerging, interdisciplinary field is characterized by an active community of scholars and practitioners working diligently to address a range of bioethics and health policy challenges, guided by a common but loosely interpreted set of core features. Current definitions and conceptualizations of public deliberation’s core features would benefit from expansion and refinement to both guide and respond to practice developments. Opportunities for more frequent cross-disciplinary and theory-practice exchange would also strengthen this field

Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation

Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement. </jats:p