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Abstract: This paper reports on a qualitative study examining everyday practices of healthy living (HL). Forty-four semi-structured interviews were undertaken with Canadian and UK citizens, aged 45 – 70, in April–May 2010. The research sits within the now substantial literature concerned with how health information is mediated, both by people and technologies, and employed in the context of ‘good’ health citizenship. Throughout this work, notions of ‘choice’ and ‘empowerment’ have been interrogated, theoretically and empirically, to reveal both the knowledge/power relationships integral to ‘informing’ processes and the shifting relationship between information and care in contemporary health encounters. In this paper, we analyse how people make sense of what it means to live healthily and how they know if they are doing so by focussing on three ways in which study participants become informed about healthy living: through their engagement with universal HL messages, through their own information searches, and through their attempts to measure their ‘healthiness’. Following critique of the “logic of choice” in contemporary healthcare, we understand healthy living as a “situation of choice” where complex problems are framed as simple matters of choice and where information and technologies are understood as neutral aids to decision-making in support of ‘correct’ choices. Our analysis builds on and extends Mol’s work by exploring how participants negotiate between this “logic of choice” and her alternative “logic of care” in their accounts of everyday HL informing practices and how the two logics “interfere” with one another. These accounts show resistance to the logic of choice through ‘calls for care’ but they also show clearly how the disciplining logic of choice works to (re)present such calls for care as failed attempts at healthy living, undermining the very practices the logic of choice seeks to encourage. [Copyright &y& Elsevier]

Rationale Living with a chronic illness poses many challenges, especially during the adolescent stage of development. Few studies have explored young people’s experiences of talking about their illness and how they go about deciding if and when they should tell others about their condition. Objective Our study sought the perspectives of Canadian children and adolescents living with inflammatory bowel disease (IBD) to determine how they go about deciding if and when to tell others about their illness. Methods Twenty-five participants with IBD, ranging in age from 10 to 17 years old, were interviewed about their experiences. Results Our participants highlighted that they generally preferred to conceal their illness. However, when they did disclose, they drew on a diverse range of contextual factors such as their knowledge of the illness as well as the severity of their illness, to make the decision. They also highlighted that one of the main challenges they experience is dealing with negative reactions to the news of their illness. This paper presents a decision-making model describing how children decide whether to disclose or conceal their IBD. Conclusion Our study illustrates that for children and adolescents, managing others’ knowledge about their illness has important implications for illness identity management. We argue that knowledge of how children with IBD make disclosure decisions is an important part of understanding the social experience of having IBD, and in creating environments that allow them to adapt to life with IBD. Our study clearly highlights the need for specific programs to be implemented to normalize IBD and to create supportive environments for children and adolescents diagnosed with IBD. [ABSTRACT FROM AUTHOR]

Abstract: Attempts to evaluate public consultations, participatory technology assessment, and deliberative democracy have typically considered impacts on either policy or participants. The determination of impacts on policy institutions has been limited due to the challenges of tracing effects through the policy process, or penetrating bureaucratic walls. This paper presents findings from a retrospective study exploring the institutional lessons learned from a 2001 Canadian national public consultation on xenotransplantation. The consultation was conducted through an arm’s-length process and involved the use of citizen juries in six regional sites. We conducted in-depth interviews of regulatory and policy actors who were engaged in early policy discussions and the consultation process. We reviewed evaluations of this process, both internal and external, which gave us richer insights into what institutional actors saw as the impacts of this consultative experience on their policy environment. Participants in our research identified a broader shift toward openness in policy culture which they linked specifically to the innovative consultation process employed for xenotransplantation. We argue that beyond input into policy decisions, a consultation may have an impact in terms of its contribution to overall shifts in institutional culture (related to institutional learning), such as an “opening” of technological decision processes to a broader range of actors, knowledge, and values. [Copyright &y& Elsevier]