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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Introduction: Fall rates and fall-related injuries among community-dwelling older adults (≥65 years) are expected to increase rapidly, due to the aging population worldwide. Fall prevention programs (FPPs), consisting of strength and balance exercises, have been proven effective in reducing fall rates among older adults. However, these FPPs have not reached their full potential as most programs are under-enrolled. Therefore, this study aims to identify promising strategies that promote participation in FPPs among community-dwelling older adults. Methods: This is an exploratory qualitative study. Previously, barriers and facilitators for participation in FPPs by older adults had been identified. Next, six strategies had been designed using the Intervention Mapping approach: (1) reframing; (2) informing about benefits; (3) raising awareness of risks; (4) involving social environment; (5) offering tailored intervention; (6) arranging practicalities. Strategies were validated during semi-structured interviews with communitydwelling older adults (n = 12) at risk of falling. Interviews were audio-recorded, transcribed, and analyzed following a qualitative thematic methodology, with a hybrid approach. Results: All strategies were considered important by at least some of the respondents. However, two strategies stood out: (1) reframing ‘aging’ and ‘fall prevention’: respondents preferred to be approached differently, taking a ‘life course’ perspective about falls, and avoiding confronting words; and (2) ‘informing about benefits’ (e.g., ‘living independently for longer’); which was mentioned to improve the understanding of the relevance of participating in FPPs. Other strategies were considered important to take into account too, but opinions varied more strongly. Discussion: This study provides insight into potential strategies to stimulate older adults to participate in FPPs. Results suggest that reframing ‘aging’ and ‘fall prevention’ may facilitate the dialogue about fall prevention, by communicating differently about the topic, for example ‘staying fit and healthy’, while focusing on the benefits of participating in FPPs. Gaining insight into the strategies’ effectiveness and working mechanisms is an area for future research. This could lead to practical recommendations and help professionals to enhance older adults’ participation in FPPs. Currently, the strategies are further developed to be applied and evaluated for effectiveness in multiple field labs in a central Dutch region (Utrecht).
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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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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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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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BACKGROUND: Patient participation in nursing documentation has several benefits like including patients' personal wishes in tailor-made care plans and facilitating shared decision-making. However, the rise of electronic health records may not automatically lead to greater patient participation in nursing documentation. This study aims to gain insight into community nurses' experiences regarding patient participation in electronic nursing documentation, and to explore the challenges nurses face and the strategies they use for dealing with challenges regarding patient participation in electronic nursing documentation.METHODS: A qualitative descriptive design was used, based on the principles of reflexive thematic analysis. Nineteen community nurses working in home care and using electronic health records were recruited using purposive sampling. Interviews guided by an interview guide were conducted face-to-face or by phone in 2019. The interviews were inductively analysed in an iterative process of data collection-data analysis-more data collection until data saturation was achieved. The steps of thematic analysis were followed, namely familiarization with data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and reporting.RESULTS: Community nurses believed patient participation in nursing documentation has to be tailored to each patient. Actual participation depended on the phase of the nursing process that was being documented and was facilitated by patients' trust in the accuracy of the documentation. Nurses came across challenges in three domains: those related to electronic health records (i.e. technical problems), to work (e.g. time pressure) and to the patients (e.g. the medical condition). Because of these challenges, nurses frequently did the documentation outside the patient's home. Nurses still tried to achieve patient participation by verbally discussing patients' views on the nursing care provided and then documenting those views at a later moment.CONCLUSIONS: Although community nurses consider patient participation in electronic nursing documentation important, they perceive various challenges relating to electronic health records, work and the patients to realize patient participation. In dealing with these challenges, nurses often fall back on verbal communication about the documentation. These insights can help nurses and policy makers improve electronic health records and develop efficient strategies for improving patient participation in electronic nursing documentation.
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Adaptive governance describes the purposeful collective actions to resist, adapt, or transform when faced with shocks. As governments are reluctant to intervene in informal settlements, community based organisations (CBOs) self-organize and take he lead. This study explores under what conditions CBOs in Mathare informal settlement, Nairobi initiate and sustain resilience activities during Covid-19. Study findings show that CBOs engage in multiple resilience activities, varying from maladaptive and unsustainable to adaptive, and transformative. Two conditions enable CBOs to initiate resilience activities: bonding within the community and coordination with other actors. To sustain these activities over 2.5 years of Covid-19, CBOs also require leadership, resources, organisational capacity, and network capacity. The same conditions appear to enable CBOs to engage in transformative activities. How-ever, CBOs cannot transform urban systems on their own. An additional condition, not met in Mathare, is that governments, NGOs, and donor agencies facilitate, support, and build community capacities. This is the peer reviewed version of the following article: Adaptive governance by community-based organisations: Community resilience initiatives during Covid‐19 in Mathare, Nairobi. which has been published in final form at doi/10.1002/sd.2682. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions
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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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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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For environmental governance to be more effective and transformative, it needs to enhance the presence of experimental and innovative approaches for participation. This enhancement requires a transformation of environmental governance, as too often the (public) participation process is set up as a formal obligation in the development of a proposed intervention. This article, in search of alternatives, and in support of this transformation elaborates on spaces where participatory and deliberative governance processes have been deployed. Experiences with two mediated participation methodologies – community art and visual problem appraisal – allow a demonstration of their potential, relevance and attractiveness. Additionally, the article analyzes the challenges that result from the nature of these arts-based methodologies, from the confrontational aspects of voices overlooked in conventional approaches, and from the need to rethink professionals’ competences. Considering current environmental urgencies, mediated participation and social imaginaries still demonstrate capacities to open new avenues for action and reflection.
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