This dissertation describes a research project about the communication between communication vulnerable people and health care professionals in long-term care settings. Communication vulnerable people experience functional communication difficulties in particular situations, due to medical conditions. They experience difficulties expressing themselves or understanding professionals, and/or professionals experience difficulties understanding these clients. Dialogue conversations between clients and professionals in healthcare, which for example concern health-related goals, activity and participation choices, diagnostics, treatment options, and treatment evaluation, are, however, crucial for successful client-centred care and shared decision making. Dialogue conversations facilitate essential exchanges between clients and healthcare professionals, and both clients and professionals should play a significant role in the conversation. It is unknown how communication vulnerable people and their healthcare professionals experience dialogue conversations and what can be done to support successful communication in these conversations. The aim of this research is to explore how communication vulnerable clients and professionals experience their communication in dialogue conversations in long-term care and how they can best be supported in improving their communication in these conversations.
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This article describes a European project which was aimed at improving the situation of persons with psychiatric or learning disabilities with regard to social participation and citizenship. The project took place in three countries (Estonia, Hungary and the Netherlands) and four cities (Tallinn, Budapest, Amersfoort and Maastricht). The project included research and actions at the policy level, the organizational level and the practice level. At the policy level, the framework of the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006) and the European Disability Strategy (European Commission, 2010) were used to look at national and local policies, at the reality of the lives of those with disabilities and at the support that professional services offer with regard to participation and inclusion. The project generated a number of insights, recommendations and methods by which to improve the quality of services and increase the number of opportunities for community engagement. In this article, we present some of the lessons learned from the meta-analysis. Although the circumstances in each country are quite different with regard to policy, culture and service systems, it is remarkable that people with disabilities face many of the same problems. The study shows that in all three countries, access to services could be improved. Barriers include bureaucratic procedures and a lack of services. The research identified that in every country and city there are considerable barriers regarding equal participation in the field of housing, work and leisure activities. In addition to financial barriers, there are the barriers of stigma and self-stigmatization. Marginalization keeps people in an unequal position and hinders their recovery and participation. In all countries, professionals need to develop a stronger focus on supporting the participation of their clients in public life and in the development of different roles pertaining to citizenship
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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This thesis is about dilemmas, discretionary space and ethics in public welfare. In my position as a lecturer of ethics in socio-legal practices I am concerned with the way in which these practices open up to an ethical development of their professionals. Thus, this thesis is a search for the most fundamental themes and issues in understanding and judging public welfare as a, perhaps, ethical socio-legal practice. In the field of public services professionals function as the intermediary between government and citizen. In their daily work public welfare professionals take care of the important societal task and goal of poverty alleviation. During the last decades, public welfare has developed into a civil right that involves many obligations on the part of the client in return. The requirement to see to it that the client fulfils these obligations has complicated the public welfare professional’s task of helping citizens in need.
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Recent years have seen a massive growth in ethical and legal frameworks to govern data science practices. Yet one of the core questions associated with ethical and legal frameworks is the extent to which they are implemented in practice. A particularly interesting case in this context comes to public officials, for whom higher standards typically exist. We are thus trying to understand how ethical and legal frameworks influence the everyday practices on data and algorithms of public sector data professionals. The following paper looks at two cases: public sector data professionals (1) at municipalities in the Netherlands and (2) at the Netherlands Police. We compare these two cases based on an analytical research framework we develop in this article to help understanding of everyday professional practices. We conclude that there is a wide gap between legal and ethical governance rules and the everyday practices.
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Municipalities increasingly seek to include citizens in decision-making processes regarding local issues, such as urban planning. This paper presents a case study on using Virtual Reality (VR) in a process of civic participation in the redesign of a public park. The municipality included citizens in intensive co-design activities to create three designs for the park and engaged the neighbourhood community in co-decision, in the form of a ballot. Through the civic participatory process, we studied the effectiveness of using VR technology to engage the community in participating in the co-decision process. The three designs were presented using highly realistic 360˚ visualisations and the effects on engagement were compared between various devices: VR headsets, smartphones, tablets, and computers. Viewing the designs in 2D paper plans was also included in the comparison. The study included over 1300 respondents that participated in the ballot. A statistical analysis of the collected data shows that participants viewing the 360˚ rendered images with VR technology expressed a significantly higher engagement in the co-decision process than those using their computer at home or viewing 2D paper plans. The paper describes the complete participatory design process and the impact of the e-governance used on the target group as well as on the actors organizing the e-governance process. We discuss how the use of new technology and active presence of a voting-support team inspired citizens to participate in the co-creation process and how the investment in this procedure helped the local authorities to generate support for the plans and strengthen its relationship with the community. The use of realistic visualisations that can be easily assessed by citizens through user-friendly technology, enabled a large and diverse audience to participate. This resulted in greater visibility of municipal efforts to enhance the living environment of citizens and is therefore an important step in increased civic engagement in municipal policy-making and implementation.
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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school. Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure. Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported. Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.
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The vast literature on accountability in the public sector (usually called ‘public accountability’originating from political science and public administration tends to emphasize the positive dimension of holding authorities to account. As formulated by one prominent scholar in the field, ‘[a]ccountability has become an icon for good governance’: it is perceived as ‘a Good Thing, and, so it seems, we can’t have enough of it’ (Bovens, 2005: 182, 183). Accountability has, thus, become one of the central values of democratic rule – varying on a well-known American slogan one could phrase this as ‘no public responsi bility without accountability’.
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Background: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. Objective: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings: The programme comprised a kick-off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor-made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.
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This project builds upon a collaboration which has been established since 15 years in the field of social work between teachers and lecturers of Zuyd University, HU University and Elte University. Another network joining this project was CARe Europe, an NGO aimed at improving community care throughout Europe. Before the start of the project already HU University, Tallinn Mental Health Centre and Kwintes were participating in this network. In the course of several international meetings (e.g. CARe Europe conference in Prague in 2005, ENSACT conferences in Dubrovnik in 2009, and Brussels in April 2011, ESN conference in Brussels in March 2011), and many local meetings, it became clear that professionals in the social sector have difficulties to change current practices. There is a great need to develop new methods, which professionals can use to create community care.
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