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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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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• The combination of coping with mental health problems and caring for children makes parents vulnerable.• Family-centred practice can help to maintain and strengthen important family relationships, and to identify and enhance the strengths of parents with a mental illness, thus contributing to their recovery.• Parents with mental illness find strength for parenting in several ways. They feel responsible, and this helps them to stay alert while parenting; parenthood also offers a basis for social participation.• Dedication to the parental role provides a focus; parents develop strengths and skills as they find a balance between attending to their own lives and caring for their children, and parenting prompts them to find adequate sources of support and leads to a valued identity.• Practitioners can support parents with mental health problems to set and address parenting related goals.
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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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It is estimated that visual and severe or profound intellectual disabilities affect 10,000 to 15,000 adults in the Netherlands, which is approximately 0.05-0.08% of the Dutch population. These adults have an intelligence quotient of less than 35 points, and their visual acuity is less than 6/18. Comorbidity is very common in these adults, i.e., they often experience other physical impairments, sensory impairments, or medical problems.People with severe or profound intellectual disabilities and visual impairment (MDVI) encounter numerous physical health problems simultaneously. In addition, they have lower physical activity and physical fitness levels compared to the general population. As a consequence, their ability to perform activities of daily living is decreased. Last but not least, persons with MDVI appear to be at risk of decreased participation. Royal Dutch Visio and the Hanze University closely collaborate with the Research Centre on Profound Intellectual and Multiple Disability of the Rijksuniversiteit Groningen to perform research in persons with MDVI. In this symposium, their research and that of international research groups will be presented concerning the following topics: participation, physical health problems, optometric issues, motor activation, and measuring muscle strength of persons
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Communicative participation is the primary outcome of speech and language therapy for people with communication disorders. However, there are no instruments that measure communicative participation from the perspective of adolescents and young adults. Moreover, little research has been conducted in which adolescents and young adults with various communication problems were asked about relevant participation situations in which they need to communicate. Before a new measurement instrument can be developed, it is necessary to explore adolescents’ and young adults’ views on their communicative participation.
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There is a need to assess communication in daily life situations for people with speech and language disorders. Although language proficiency and communication in daily life are correlated, their relationship is far from linear or straightforward. This paper aims to demonstrate the usefulness of the construct of communicative participation by unravelling the relationship and overlap between participation and communication. We explored the relationship between communication, participation, and communicative participation by reviewing common definitions mentioned in the literature. Next, we evaluated to what extent communication plays a role in each of the World Health Organization’s International Classification of Functioning (ICF) “Activity and Participation” chapters by counting how many items in each chapter should be considered for describing communicative participation.
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Hematological malignancies and treatment with hematopoietic SCT are known to affect patients’ quality of life. The problem profile and care needs of this patient group need clarification, however. This study aimed to assess distress, problems and care needs after allo- or auto-SCT, and to identify risk factors for distress, problems or care needs. In this cross-sectional study, patients treated with allo-SCT or auto-SCT for hematological malignancies completed the Distress Thermometer and Problem List. Three patient groups were created: 0–1, 1–2.5 and 2.5–5.5 years after transplantation. After allo-SCT, distress and the number of problems tended to be lower with longer follow-up. After auto-SCT, distress was highest at 1–2.5 year(s). Patients mainly reported physical problems, followed by cognitive-emotional and practical problems. A minority reported care needs. Risk factors for distress as well as problems after allo-SCT included younger age, shorter time after transplantation and GVHD. A risk factor for distress as well as problems after auto-SCT was the presence of comorbid diseases. Up to 5 years after auto-SCT or allo-SCT, patients continue to experience distress and problems. Judged by prevalence, physical problems are first priority in supportive care, followed by cognitive-emotional and practical problems.
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Background: Art therapy (AT) is frequently offered to children and adolescents with psychosocial problems. AT is an experiential form of treatment in which the use of art materials, the process of creation in the presence and guidance of an art therapist, and the resulting artwork are assumed to contribute to the reduction of psychosocial problems. Although previous research reports positive effects, there is a lack of knowledge on which (combination of) art therapeutic components contribute to the reduction of psychosocial problems in children and adolescents. Method: A systematic narrative review was conducted to give an overview of AT interventions for children and adolescents with psychosocial problems. Fourteen databases and four electronic journals up to January 2020 were systematically searched. The applied means and forms of expression, therapist behavior, supposed mechanisms of change, and effects were extracted and coded. Results: Thirty-seven studies out of 1,299 studies met the inclusion criteria. This concerned 16 randomized controlled trials, eight controlled trials, and 13 single-group pre–post design studies. AT interventions for children and adolescents are characterized by a variety of materials/techniques, forms of structure such as giving topics or assignments, and the use of language. Three forms of therapist behavior were seen: non-directive, directive, and eclectic. All three forms of therapist behavior, in combination with a variety of means and forms of expression, showed significant effects on psychosocial problems. Conclusions: The results showed that the use of means and forms of expression and therapist behavior is applied flexibly. This suggests the responsiveness of AT, in which means and forms of expression and therapist behavior are applied to respond to the client's needs and circumstances, thereby giving positive results for psychosocial outcomes. For future studies, presenting detailed information on the potential beneficial effects of used therapeutic perspectives, means, art techniques, and therapist behavior is recommended to get a better insight into (un)successful art therapeutic elements.
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