Background: Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim: In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate possible adjustments. Design: This study is embedded in empirical bioethics, an interdisciplinary approach integrating empirical data with ethical reasoning to formulate normative conclusions regarding a practice. For the empirical social scientific part, a cross-sectional qualitative study will be conducted; for the ethical reflection the Reflective Equilibrium will be used to develop a coherent view on the application of SDM among ethnic minorities in oncology. Method: Semi-structured interviews combined with visual methods (timelines and relational maps) will be held with healthcare professionals (HCPs), ethnic minority patients, and their relatives to identify values steering the behavior of these actors in SDM. In addition, focus groups (FGs) will be held with ethnic minority community members to identify value structures at the group level. Respondents will be recruited through organizations with access to ethnic minorities and collaborating hospitals. Data will be analyzed using a reflexive thematic analysis through the lens of Schwartz’s value theory. The results of the empirical phase will be included in the RE to formulate possible adjustments of the SDM model, if needed. Discussion: The integration of empirical data with ethical reflection is an innovative method in decision-making. This method enables a systematic and profound assessment of the need for adaptation of SDM and the formulation of theoretically and empirically based suggestions for adaptations of the model. Findings of this study may enrich the SDM model.
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Optimizing protein intake is a novel strategy to prevent age associated loss of muscle mass and strength in older adults. Such a strategy is still missing for older adults from ethnic minority populations. Protein intake in these populations is expected to be different in comparison to the majority of the population due to several socio-cultural factors. Therefore, the present study examined the dietary protein intake and underlying behavioral and environmental factors affecting protein intake among older adults from ethnic minorities in the Netherlands. We analyzed frequency questionnaire (FFQ) data from the Healthy Life in an Urban Setting (HELIUS) cohort using ANCOVA to describe dietary protein intake in older adults from ethnic minorities in the Netherlands (N = 1415, aged >55 years, African Surinamese, South Asian Surinamese, Moroccan, and Turkish). Additionally, we performed focus groups among older adults from the same ethnic minority populations (N = 69) to discover behavioral and environmental factors affecting protein intake; 40-60% of the subjects did not reach minimal dietary protein recommendations needed to maintain muscle mass (1.0 g/kg bodyweight per day (BW/day)), except for Turkish men (where it was 91%). The major sources of protein originated from animal products and were ethnic specific. Participants in the focus groups showed little knowledge and awareness about protein and its role in aging. The amount of dietary protein and irregular eating patterns seemed to be the major concern in these populations. Optimizing protein intake in these groups requires a culturally sensitive approach, which accounts for specific protein product types and sociocultural factors.
GAMING HORIZONS is a multidisciplinary project that aims to expand the research and innovation agenda on serious gaming and gamification. The project is particularly interested in the use of games for learning and cultural development. Gamification - and gaming more broadly – are very important from a socio-economic point of view, but over the past few years they have been at the centre of critical and challenging debates, which highlighted issues such as gender and minority representation, and exploitative game mechanics. Our project’s key contention is that it is important for the European ICT community to engage with design trends and social themes that have affected profoundly the mainstream and ‘independent’ game development cultures over the past few years, especially because the boundaries between leisure and serious games are increasingly blurred. GAMING HORIZONS is a direct response to the official recognition by the H2020 programme of work that multidisciplinary research can help to advance the integration between Responsible Research and Innovation (RRI) and the Social Sciences and the Humanities (SSH). The project’s objective is to enable a higher uptake of socially responsible ICT-related research in relation to gaming. This objective will be achieved through a research-based exchange between communities of developers, policy makers, users and researchers. The methodology will involve innovative data collection activities and consultations with a range of stakeholders over a period of 14 months. We will interrogate the official ‘H2020 discourse’ on gamification – with a particular focus on ‘gamified learning’ - whilst engaging with experts, developers and critical commentators through interviews, events, workshops and systematic dialogue with an Advisory Board. Ultimately, GAMING HORIZONS will help identify future directions at the intersection of ethics, social research, and both the digital entertainment and serious games industries.EU FundingThe 14-month research project 'Gaming Horizons' was funded by the European Commission through the Horizon 2020 research and innovation programme.
phōnē – Giving Minority Languages a Voice is a project application to safeguards and promotes cultural and linguistic diversity in Europe. We will connect people who belong to a language minority in their countries with European values across language and cultural borders. 10 institutions will cooperate for the first time, breaking new ground for the RML theatre sector and improving their standing nationallyand internationally. phōnē will be the first ever major international collaboration between theatres working for minority languages.“Languages are vehicles of our cultures, collective memory and values. They are an essential component of our identities, and a building block of our diversity and living heritage.”The loss of a language means not only the loss of a basic element of communication, but also of a complete system of knowledge developed over time. The disappearance of a language also means the loss of a unique, unrecoverable universe associated with a particular environment. It means the loss of diversity.Phōnē wants to make an active contribution to the vitalisation of endangered minority languages. In order to keep endangered languages alive, theatre is one of the most suitable media because it provides a space for language, but also because it uses non-language-based forms of communication. In this way, theatre in particular makes it easier for people who do not yet have a confident knowledge of theminority language to get started. This will safeguard cultural and linguistic diversity in Europe. Strengthening the cultures and their languages will also strengthen the economic basis of the theatres working in these minority languages.phōnē is aiming for three main objectives to strengthen theatre in its role of vitalising endangered minority languages.A – Giving Minority Languages a voiceTogether we will search for narratives that tell about the people in their minority language region. Thestories are about and from people who live and work in remote regions of Europe and are written anddeveloped in the respective minority language.B – Giving Minority Languages a European stageThe developed texts need a stage to reach the widest possible audience. As different as the expectednarratives will be, so different will be the stages (outreach / site-specific / digital) on which they are presented.Different formats support the goal of addressing the broadest possible audience in the communitiesand involving them both passively and actively in the use of their minority language.
