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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Abstract: In this article I will reconstruct the Dutch debate on citizenship against the developing thinking about social citizenship in the context of globalization. I will show that the confusion around citizenship in the Netherlands can be seen as a result from a split between an unanimous negative valuation of Dutch citizen participation and the practice in which the participation of Dutch population is high. Recent theory on citizenship and participation localizes citizen participation, through membership, in the heart of citizenship practices (B.S. Turner). This can be understood as that all kinds of practices and activities can be viewed as citizenship practices and citizenship activities. From this perspective it becomes clear that in the Netherlands, due to the nation-state conceptualisation of citizenship social participation is not acknowledged as part of citizenship. In reverse, the case study learns about the theory of citizenship in practices that that theory functions as a framework that visualises different - sometimes conflicting - notions and practices of citizenship and thereby recognises all these as part of citizenship.
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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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Purpose (1) To investigate the differences in the course of participation up to one year after stroke between distinct movement behavior patterns identified directly after discharge to the home setting, and (2) to investigate the longitudinal association between the development of movement behavior patterns over time and participation after stroke. Materials and methods 200 individuals with a first-ever stroke were assessed directly after discharge to the home setting, at six months and at one year. The Participation domain of the Stroke Impact Scale 3.0 was used to measure participation. Movement behavior was objectified using accelerometry for 14 days. Participants were categorized into three distinct movement behavior patterns: sedentary exercisers, sedentary movers and sedentary prolongers. Generalized estimating equations (GEE) were performed. Results People who were classified as sedentary prolongers directly after discharge was associated with a worse course of participation up to one year after stroke. The development of sedentary prolongers over time was also associated with worse participation compared to sedentary exercisers. Conclusions The course of participation after stroke differs across distinct movement behavior patterns after discharge to the home setting. Highly sedentary and inactive people with stroke are at risk for restrictions in participation over time. Implications for rehabilitation The course of participation in people with a first-ever stroke up to one year after discharge to the home setting differed based on three distinct movement behavior patterns, i.e., sedentary exercisers, sedentary movers and sedentary prolongers. Early identification of highly sedentary and inactive people with stroke after discharge to the home setting is important, as sedentary prolongers are at risk for restrictions in participation over time. Supporting people with stroke to adapt and maintain a healthy movement behavior after discharge to the home setting could prevent potential long-term restrictions in participation.
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In this paper, we explore the design of web-based advice robots to enhance users' confidence in acting upon the provided advice. Drawing from research on algorithm acceptance and explainable AI, we hypothesise four design principles that may encourage interactivity and exploration, thus fostering users' confidence to act. Through a value-oriented prototype experiment and value-oriented semi-structured interviews, we tested these principles, confirming three of them and identifying an additional principle. The four resulting principles: (1) put context questions and resulting advice on one page and allow live, iterative exploration, (2) use action or change oriented questions to adjust the input parameters, (3) actively offer alternative scenarios based on counterfactuals, and (4) show all options instead of only the recommended one(s), appear to contribute to the values of agency and trust. Our study integrates the Design Science Research approach with a Value Sensitive Design approach.
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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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Background: We investigated the effects of the “Care for Participation+” (CFP+) intervention on direct support professionals’ (DSPs’) attitudes regarding the participation of adults with visual and severe or profound intellectual disabilities (VSPID).Methods: We implemented a pilot non-randomized controlled trial with two control groups to compare DSPs’ attitudes towards CFP+ using the Attitudes towards Participation Questionnaire (APQ) and DSPs’ written profiles of adults with VSPID.Results: CPP+ and the Participation Mind Map control group showed a positive trend for the “leisure/recreation,” “social relations,” and “ability to act” APQ domains compared to the usual care control group. The CFP+ group described significantly fewer disabilities at 6 months, reflecting a more positive attitude than controls.Conclusion: CFP+ had positive effects on DSPs’ attitudes towards the participation of adults with VSPID. The small sample size, ceiling effects, measurement instruments used, and implementation difficulties may have hampered understanding the full potential of CFP+.
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Currently, the engagement of local communities in Health Impact Assessment is becoming more and more important. A scoping review was performed to take stock of visions, methods and experiences in this field.A combined Scopus and Medline search yielded 100 articles in scientific journals. The final selection consisted of 43 papers, including case studies, evaluation studies, reviews, and opinion papers. After analysis, consultation of four experts was performed to check preliminary study outcomes. A grey literature web search was performed to check and complement the results.Results show that community participation is generally considered a core element in HIA. Views as expressed in the papers concern, firstly, the need for and value of local knowledge, secondly, the adherence to or application of democratic values and, thirdly, empowerment of communities. Three categories of methods are used in relation to community participation, often in combination: methods to facilitate knowledge elicitation, to ensure the inclusion of communities in the HIA process, and to build community capacity to participate in policy development. However, the theoretical or practical underpinning of the choice for specific methods is mostly not presented. The experiences described in the papers mainly focus on the access to local knowledge and its usability as a source of evidence in the HIA process. Described effects of community participation are (improved) relations between communities and local agencies, policy makers and professionals and the empowerment of community members. Although these effects are ascribed to community participation, many papers do not provide support for this conclusion beyond the retrospective perception of participants. Expert consultation and additional analysis of the grey literature supported the results derived from the scientific literature and provided more in-depth knowledge. In the grey literature theoretical frameworks, methods and tools for community participation in HIA were more extensively reported as compared to the scientific literature.We conclude that the visions, methods and experiences concerning community participation show that a participative approach may contribute to better, context specific knowledge. It appears that participative HIA has health promotion potential as it helps develop responsive policies.To accomplish this, HIA should, firstly, be better embedded in broader health promotion programmes. Secondly, the methods and approaches for community participation applied in HIA should be theory-informed and well described. The grey literature offers entry points. Finally, more robust and systematic evaluation and research is needed to assess the impact of HIAs on communities and policies.
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Summary (English):Current planning policies place great expectations on citizen participation to resolve complex societal and spatial challenges such as urban renewal and housing development. This essay explores what transitions in citizen participation have taken place on this issue in the Netherlands and to what extent citizen participation in its current form can address the complex socio-spatial challenge of providing affordable housing in cities.The essay introduces a paradox of the transition in participation in housing development in the Netherlands as part of broader transformations in Dutch spatial planning and development: in spite of increased institutionalization of participation, the actual citizens seem to have been served less and less. There is potential for the inclusion of citizen participation in the planning processes to encourage acceptance where resource distribution creates conflicts (i.e. affordable housing markets and lack of supply) for more effective cooperation during implementation. However, giving citizens more say in small parcels of spatial development does not disguise and overrule the structural forces in policy and real estate market trends that have grown in the last decades and push out lower and middle income groups from the city.This essay reviews state-of-the-art literature on the evolution of citizen participation, co-creation, and decision-making structures and processes in spatial planning and housing, and discusses participation trajectories in urban developments with housing functions in Amsterdam (Havenstraatterrein, Marineterrein) and Groningen (Suikerunie, Ebbinge), and Almere (Oosterwold) to showcase the paradoxical transition.__Summary (Dutch):Participatie krijgt een steeds prominentere rol in het oplossen van complexe maatschappelijke en ruimtelijke uitdagingen, zoals stedelijke vernieuwing en de ontwikkeling van woningen. Dit essay verkent welke veranderingen zich hebben voorgedaan in de rol die burgers spelen in woningontwikkeling in Nederland en in hoeverre participatie in de huidige vorm helpt om voldoende betaalbare woonruimte te ontwikkelen in de stad.Het essay schetst een paradoxale transitie op het gebied van participatie in de woningbouw in Nederland. De transitie is onderdeel is van grotere veranderingen in ruimtelijke ordening en ruimtelijke ontwikkeling in Nederland. Ondanks toenemende aandacht voor en institutionalisering van participatie in plan- en ontwikkelingsprocessen, lijkt het erop dat de burger die het meest de hulp van de overheid nodig heeft om passende woonruimte te vinden, steeds meer het nakijken heeft gekregen. Burgers een grotere rol geven in de planprocesen en planuitvoering kan helpen de acceptatie van plannen waarin schaarse middelen worden verdeeld, te vergroten. Tot nu toe echter blijft de inspraak van burgers beperkt tot kleine, specifieke gebieden. Deze uitzonderingen bieden onvoldoende tegenwicht aan de structurele krachten in beleid, grond- en vastgoedmarkten die midden- en lagere inkomens de afgelopen jaren steeds verder de stad uit hebben gedreven.Dit essay schetst op basis van literatuurstudie de grote lijnen in de ontwikkeling van woningontwikkeling en participatie sinds de Tweede Wereldoorlog. Op basis daarvan beschouwt het essay de ontwikkeling van participatie, co-creatie en besluitvorming in gebiedsontwikkeling in Amsterdam (Havenstraatterrein, Marineterrein), Groningen (Suikerunie, Ebbinge) en Almere (Oosterwold) om de paradoxale transitie die plaatsvindt in participatie in gebiedsontwikkeling en woningbouw te illustreren.
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Citizen participation in local renewable energy projects is often promoted as many suppose it to be a panacea for the difficulties that are involved in the energy transition process. Quite evidently, it is not; there is a wide variety of visions, ideologies and interests related to an ‘energy transition’. Such a variety is actually a precondition for a stakeholder participation process, as stakeholder participation only makes sense if there is ‘something at stake’. Conflicting viewpoints, interests and debates are the essence of participation. The success of stakeholder participation implies that these differences are acknowledged, and discussed, and that this has created mutual understanding among stakeholders. It does not necessarily create ‘acceptance’. Renewable energy projects often give rise to local conflict. The successful implementation of local renewable energy systems depends on the support of the local social fabric. While at one hand decisions to construct wind turbines in specific regions trigger local resistance, the opposite also occurs! Solar parks sometimes create a similar variation: Various communities try to prevent the construction of solar parks in their vicinity, while other communities proudly present their parks. Altogether, local renewable energy initiatives create a rather chaotic picture, if regarded from the perspective of government planning. However, if we regard the successes, it appears the top down initiatives are most successful in areas with a weak social fabric, like industrial areas, or rather recently reclaimed land. Deeply rooted communities, virtually only have successful renewable energy projects that are more or less bottom up initiatives. This paper will first sketch why participation is important, and present a categorisation of processes and procedures that could be applied. It also sketches a number of myths and paradoxes that might occur in participation processes. ‘Compensating’ individuals and/or communities to accept wind turbines or solar parks is not sufficient to gain ‘acceptance’. A basic feature of many debates on local renewable energy projects is about ‘fairness’. The implication is that decision-making is neither on pros and cons of various renewable energy technologies as such, nor on what citizens are obliged to accept, but on a fair distribution of costs and benefits. Such discussions on fairness cannot be short cut by referring to legal rules, scientific evidence, or to standard financial compensations. History plays a role as old feelings of being disadvantaged, both at individual and at group level, might re-emerge in such debates. The paper will provide an overview of various local controversies on renewable energy initiatives in the Netherlands. It will argue that an open citizen participation process can be organized to work towards fair decisions, and that citizens should not be addressed as greedy subjects, trying to optimise their own private interests, but as responsible persons.
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