This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.
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This paper introduces the design principle of legibility as means to examine the epistemic and ethical conditions of sensing technologies. Emerging sensing technologies create new possibilities regarding what to measure, as well as how to analyze, interpret, and communicate said measurements. In doing so, they create ethical challenges for designers to navigate, specifically how the interpretation and communication of complex data affect moral values such as (user) autonomy. Contemporary sensing technologies require layers of mediation and exposition to render what they sense as intelligible and constructive to the end user, which is a value-laden design act. Legibility is positioned as both an evaluative lens and a design criterion, making it complimentary to existing frameworks such as value sensitive design. To concretize the notion of legibility, and understand how it could be utilized in both evaluative and anticipatory contexts, the case study of a vest embedded with sensors and an accompanying app for patients with chronic obstructive pulmonary disease is analyzed.
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This paper investigates the prospective application of arbitration by Transnational Private Regulation (TPR). It builds on the study of TPR developed by Fabrizio Cafaggi et al. TPR addresses the ever-increasing transfer of regulatory power from national to global levels, and from public to private regulators. TPR entails private regulatory co-operation be-yond the jurisdictional boundaries of States through voluntary standards. The regimes of TPR are built by a variety of actors, such as companies, NGOs, independent experts, and epistemic communities. Examples of TPR can be found in food safety, forestry management, trade, and derivatives, among other fields. More specifically, they concern private actors engaging in transnational coordination of standard setting such as the Forest Stewardship Council (FSC) that was developed to foster responsible management of the world’s forests. There are four main characteristics of TPR: legitimacy, quality, effectiveness, and enforcement. I will describe those four characteristics in brief here. First, the legitimacy of TPR is built around consent through voluntary entry, participation, and exit of regulated entities. Important to this contribution is that the legitimacy of TPR goes beyond its legal dimension, measured by purely legal standards. Hence, the legitimacy of TPR is largely determined by standards developed by social and economic institutions relevant to specific TPR regimes. The role of those institutions in standard settings is higher in private TPR regimes than private-public TPR regimes, where some forms of compliance are mandatory. Second, the quality of TPR corresponds to the ex ante and ex post evaluation cycle of regulatory processes. It is also linked with the transparency of TPR. Third, the effectiveness of TPR is measured according to the extent to which the objectives of TPR (or selected TPR regimes) are met. And finally, enforcement of TPRis understood as ‘ensuring compliance with commitments’. Enforcement of TPR can take place through courts, administrative agencies, and private dispute resolution—including the arbitration at the core of this contribution. Cafaggi’s study identified rather selective use of arbitration in TPR, but also recommended changes to make arbitration law more adaptable to TPR. Furthermore, the study recommended that more specialized dispute resolution institutions are created to exclusively serve TPR. Against this background, I shift the main focus of analysis from TPR to arbitration. Whereas Cafaggi argued that arbitration may be suitable for TPR as a means of private enforcement, in this paper I go even further, arguing that arbitration as a means of informal, out-of-court dispute resolution is well suited to strengthen the normativity of TPR. This is so because private arbitration actors (including, inter alia, arbitrators and arbitral institutions) are already equipped with the tools necessary to facilitate cross-border TPR, which is done through informal standards and procedures with origins in the communitarian values and reputational mechanisms used by different communities before the development of modern States. The roots of most private justice regimes—including arbitration—are informed by communitarian values such as collaboration, participation, and personal trust. Those values, together with other core characteristics of arbitration correspond to all core characteristics of TPR, making both systems comparable and complementary. The analytical framework incorporated in this paper follows the four core characteristics of TPR. Hence, the paper is organized into five sections. The first section contains the introduction. In the second section, I analyze the legitimacy of arbitration vis-à-vis the legitimacy of TPR. In the third section, I investigate the accountability of arbitration as a means of quality signaling vis-à-vis TPR. In the fourth section, I focus on the remedies available to arbitrators in a view of TPR’s effectiveness. Finally, in the fifth section, I analyze enforcement through arbitration and its impact on the exclusiveness versus complementarity of TPR regimes. Conclusions follow, including recommendations for future research. Part of topic "The blurring distinction between public and private in international dispute resolution"
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