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 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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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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IssueIn the Netherlands, the National Public Health Foresight Study (PHF) is published every 4 years, as starting point for national and local public health policy development. As these policies impact citizens’ health and lives, it is important to include their voices. We piloted an approach to strengthen this engagement to learn and to inspire PHF in other (country) settings.Problem descriptionPHF is usually expert-based. Citizen engagement, beyond consultation, is not yet common practice. In the Dutch PHF-2024, we engage citizens both as advisors (citizen council, N = 30 and panel, N = 500) and as target group (focusgroups N = 40). Intentionally the scope is diffuse, allowing for unexpected input. What can we learn from this approach, and how do the citizens contribute to the PHF?Results- Citizens of all ages, backgrounds and education types are well able to discuss health (determinants), data and indicators;- They have intrinsic motivation to contribute to better knowledge, feel responsible for effective engagement and are eager to engage across different backgrounds and population groups;- Integration of outcome into the PHF process is valuable, enriching scientific with experiential knowledge and facilitating results communication;- Fundamental questions, e.g., about foresight time frames (“why look so far ahead as the world is in crisis right now!”) are raised by the citizens, showing that these need to be better addressed in order to make PHF relevant for a broader public.Lessons- More permanent engagement of the citizens is needed to enable learning and development;- earlier engagement in the PHF process may enable joint development of core questions and issues to be addressed;- The results are highly encouraging; piloting this approach in other foresight types and in various contexts is therefore needed to refine and further develop it.Key messages• Citizen engagement can and should be strengthened to include citizen voices in the PHF process, informing policies that impact on their lives.• Citizens of all backgrounds, with their experiential knowledge, can be valuable partners in PHF, that provide important input.
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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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Can audience embarrassment be used to shape interactions in public settings? Is this the threshold for an audience to step in and / or out of the interaction in performative interactions in public space? The proliferation of mobile and ubiquitous devices has shifted the attention to the design of interactive systems for use in public settings. This design applies the notion of performance to attract and engage audiences. Because performance becomes such a core part of the interaction, the success of those interactive systems heavily depends upon the physical, social and emotional context in which they are to be used. Indeed, strangers around a potential user may hinder or encourage that individual's participation in the interaction. Similarly, the physical space in which the interaction takes place, public or semipublic space may as well facilitate audience participation or prevent it. This paper investigates what characteristics of this setting (perceived / felt) can trigger audience participation in the interaction. A model based on the notion of performance and entailing some degree of felt embarrassment is applied to two cases to explain how the potential embarrassment implicit in any interaction in public space can be used to encourage users’ participation in it.
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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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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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In this paper we present visual methodologies attuned to the networked nature of digital images. First, we describe approaches to image research in which images are not separated from their network, but rather studied 'en groupe'. Here, we contrast approaches that treat images as data, and those that regard images as content. Second, we focus on the production of images for digital research, presenting three of their functions: a) the creation of diagrams that facilitate collaboration in interdisciplinary research teams; b) the use of visualizations for cross-platform image analysis; and c) designing images for public participation. Most importantly, such visualizations are not used to form the esthetic culmination of analytical work, but are rather functional tools for digital research that serve parts of the entire research process, from its formulation and operationalization to the engagement of a broader public.
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BackgroundWe report development of the SPQ (School Participation Questionnaire) a teacher-completed measure of participation related constructs for schools. The SPQ was developed to support participation-related assessment, interventions, and research in the inclusive school context.MethodsSeveral iterative steps were undertaken. An international panel of experts reviewed content validity. A 66-item pilot questionnaire was administered in schools. Mokken and Rasch model analysis were applied. Internal consistency was assessed using Cronbach’s alpha. Analyses were conducted on associations with teacher and child demographic variables. Feedback was sourced from users. Participants were teachers of 101 children (5−12 years old) with a range of disabilities, including intellectual disability, autism spectrum disorder and learning difficulties.ResultsFour participation-related dimensions of the SPQ were confirmed. Rasch person and item reliability were good, and 2–4 strata were confirmed per scale. Internal consistency was good (all scales, Cronbach α > 0.8). Mean administration time was 11.7 min. Mean SPQ scores were independent of teacher characteristics. A significant effect of school support level, eligibility for free school meals and gender was found. Through synthesising analytic results and feedback, a new 46-item tool was obtained.ConclusionThe results of this study provide evidence of acceptability, practicality and validity. The SPQ is the first tool developed to assess participation related constructs in schools, and it contains novel information not given by other assessments. The SPQ may be used by practitioners and researchers to understand and improve the participation of children with a range of disabilities in schools.
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