Tineke Broer

Opening the black box of quality improvement collaboratives: An Actor-Network theory approach

BackgroundQuality improvement collaboratives are often labeled as black boxes because effect studies usually do not describe exactly how the results were obtained. In this article we propose a way of opening such a black box, by taking up a dynamic perspective based on Actor-Network Theory. We thereby analyze how the problematisation process and the measurement practices are constructed. Findings from this analysis may have consequences for future evaluation studies of collaboratives.MethodsIn an ethnographic design we probed two projects within a larger quality improvement collaborative on long term mental health care and care for the intellectually disabled. Ethnographic observations were made at nine national conferences. Furthermore we conducted six case studies involving participating teams. Additionally, we interviewed the two program leaders of the overall projects.ResultsIn one project the problematisation seemed to undergo a shift of focus away from the one suggested by the project leaders. In the other we observed multiple roles of the measurement instrument used. The instrument did not only measure effects of the improvement actions but also changed these actions and affected the actors involved.ConclusionsEffectiveness statistics ideally should be complemented with an analysis of the construction of the collaborative and the improvement practices. Effect studies of collaboratives could benefit from a mixed methods research design that combines quantitative and qualitative methods.

Mutual powerlessness in client participation practices in mental health care

Background  Client participation has become a dominant policy goal in many countries including the Netherlands and is a topic much discussed in the literature. The success of client participation is usually measured in terms of the extent to which clients have a say in the participation process. Many articles have concluded that client participation is limited; professionals often still control the participation process and outcomes.

Proud2Bme: Exploratory research on care and control in young women’s online eating disorder narratives

Illness narratives have been studied to understand the patient’s point of view. These narratives are becoming more prolific, accessible, and specialized, thanks to the improved Internet access and the growth of health-specific online communities. This article analyses illness narratives posted on a Dutch eating disorder website hosted by a treatment centre. Specifically, we look at ‘care of the self’ and ‘control’. The young women wrote about controlling situations with disordered eating as a self-care tool, about being controlled by the disorder and about regaining control over the disorder. The website, with the opportunity for constant, unseen supervision, coercion through comments, and steering through edits and comments, revealed various modalities of control. While issues of control and eating disorders have been explored by others, little work has been done on how the control experienced by the young women (coercion on the individual, the body as the object of control, and the modality of pressure and supervision) interact, how control is presented in stories for a recovery-focused, monitored website, and how the website directs the content. As recovery-focused, therapist-led website is likely to continue growing, understanding how and why young women talk about care and control in the context of such websites is an important topic.

The Movement of Research from the Laboratory to the Living Room: a Case Study of Public Engagement with Cognitive Science

Media reporting of science has consequences for public debates on the ethics of research. Accordingly, it is crucial to understand how the sciences of the brain and the mind are covered in the media, and how coverage is received and negotiated. The authors report here their sociological findings from a case study of media coverage and associated reader comments of an article (‘Does bilingualism influence cognitive aging?’) from Annals of Neurology. The media attention attracted by the article was high for cognitive science; further, as associates/members of the Centre where it was produced, the authors of the research reported here had rare insight into how the scientists responsible for the Annals of Neurology article interacted with the media. The data corpus included 37 news items and 228 readers’ comments, examined via qualitative thematic analysis. Media coverage of the article was largely accurate, without merely copying the press release. Analysis of reader comments showed these to be an important resource for considering issues of import to neuroethics scholars, as well as to scientists themselves (including how science communication shapes and is shaped by ethical, epistemic, and popular discourse). In particular, the findings demonstrate how personal experiences were vital in shaping readers’ accounts of their (dis)agreements with the scientific article. Furthermore, the data show how scientific research can catalyse political discussions in ways likely unanticipated by scientists. The analysis indicates the importance of dialogue between journalists, laboratory scientists and social scientists in order to support the communication of the messages researchers intend.

Prudence, Pleasure, and Cognitive Ageing: Configurations of the Uses and Users of Brain Training Games within UK Media, 2005-2015

The use of ‘brain training’ games is often regarded as relating to wider ideals of self-improvement and youthfulness. Hence, use is intertwined with discourses of ‘active’ ageing. This paper analyzes how the use and users of brain training games were configured in the UK media, from 2005 to 2015, and examines how notions of active ageing relate to these representations. Game users were rarely constructed solely as gamers, and were more often presented as prudent individuals focused on a serious goal. This configuration related to assumed and enjoined motivations for brain training; specifically, users were commonly framed as seeking to enhance cognition and limit/delay cognitive decline. Scientific evidence about brain training was often deployed to explain how games might work; sometimes, however, it was used to undermine the utility of games and assert the significance and cognitive health-benefits of other activities. A minority of texts explicitly critiqued ideals of self-improvement, arguing that game playing was important for its own sake. Yet, even the pleasure associated with gaming was occasionally instrumentalized as a mechanism for ensuring prudent life choices. The analysis casts fresh light on how debates around health, ageing, and science correspond to configurations of technology uses and users. It presents evidence of the widespread cultural circulation of enjoiners regarding self-care and healthy ageing within British society. However, the paper also provides indications of the limits to such imperatives: discourses of pleasure co-exist with and perhaps supplant logics of prudence in (accounts of) practices ostensibly aimed at ageing ‘well’.

Identity, community and care in online accounts of hereditary colorectal cancer syndrome

Sociological literature has explored how shifts in the point at which individuals may be designated as diseased impact upon experiences of ill health. Research has shown that experiences of being genetically “at risk” are shaped by and shape familial relations, coping strategies, and new forms of biosociality. Less is known about how living with genetic risk is negotiated in the everyday and over time, and the wider forms of identity, communities and care this involves. This article explores these arrangements drawing on online bloggers’ accounts of Familial Adenomatous Polyposis (FAP). We show how accounts of genetic risk co-exist with more palpable experiences of FAP in everyday life, notably the consequences of prophylactic surgeries. We consider how the act of blogging represents but also constitutes everyday experiences of hereditary cancer syndrome as simultaneously ordinary and exceptional, and reflect on the implications of our analysis for understanding experiences of genetic cancer risk.

Book review essay: anthropologies of addiction

Social scientific perspectives have a long history of offering unique and important insights into the social, cultural and economic features which shape understandings, meanings and practices relat...

Putting a name to it: diagnosis in contemporary society

reviewer detected just the slightest note of skepticism (or even cynicism) regarding the claims made by regulators as to how well their shiny new systems are working, and the interventions of various (self-)interested parties, whether they be the regulated entities or even foreign governments. Readers of this journal may be particularly interested in how the authors handle the question of DNA databases and the legal system. While the important decision of the European Court of Human Rights in S & Marper v United Kingdom ([2008] ECHR 1581) is the subject of due analysis throughout the book, the final chapter uses the political response to it, including the Protection of Freedoms Act 2012, as a case study of regulatory negotiation and change. A wide range of extracts are included in the book. It could have been more userfriendly to highlight these more carefully (e.g. through typography or formatting), and a comprehensive list of the extracts included (rather than just those that were the subject of formal permission for copyright reasons) would also have assisted the reader. However, these quibbles should not take away from the achievements of the authors in assembling a body of material that includes cases, statutes, international treaties, academic articles, official reports, and more. As someone whose research and teaching mostly relates to computers and the Internet, the amount of material in this book that stems from the links between law and chemistry or law and biology is a very helpful reminder that the cyber lawyers do not and should not have a monopoly on the “law and 21st century technologies” label. Although some institutions may not (yet?) have courses for which this book would be a perfect fit, much of the value in this particular publication comes from the juxtaposition of work by scholars who may not have cited or even considered each other. It appears that most of the work cited is drawn from the disciplines of law, political science and related fields. However, scientific and legal readers alike should find this new publication an engaging and provocative take on the question of regulation, which ultimately is what the authors are concerned with.