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.
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
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.
MULTIFILE
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
aphasia, speech apraxia, blended careDeze aanvraag is onderdeel van een structureel samenwerkingsverband van het UMCG Centrum voor Revalidatie met de Hanzehogeschool, afdeling Logopedie en de RUG, afdeling Taalwetenschappen, University College of Groningen en Universitair Ziekenhuis Gent. Het project heeft ten doel het verbeteren van de kwaliteit van de logopedische behandeling van spraak- en taalstoornissen na hersenletsel. Hierbij staat telkens het verbinden van theoretische inzichten uit de literatuur met klinisch opgedane inzichten voorop.
The HAS professorship Future Food Systems is performing applied research with students and external partners to transform our food system towards a more sustainable state. In this research it is not only a question of what is needed to achieve this, but also how and with whom. The governance of our food system needs rethinking to get the transformative momentum going in a democratic and constructive manner. Building on the professorship’s research agenda and involvement in the transdisciplinary NWA research project, the postdoc will explore collective ownership and inclusive participation as two key governance concepts for food system transformation. This will be done in a participatory manner, by learning from and with innovative bottom-up initiatives and practitioners from the field. By doing so, the postdoc will gain valuable practical insights that can aid to new approaches and (policy) interventions which foster a sustainable and just food system in the Netherlands and beyond. A strong connection between research and education is created via the active research involvement of students from different study programs, supervised by the postdoc (Dr. B. van Helvoirt). The acquired knowledge is embedded in education by the postdoc by incorporating it into HAS study program curricula and courses. In addition, it will contribute to the further professional development of qualitative research skills among HAS students and staff. Through scientific, policy and popular publications, participation in (inter)national conferences and meetings with experts and practitioners, the exposure and network of the postdoc and HAS in the field of food systems and governance will be expanded. This will allow for the setting up of a continuous research effort on this topic within the professorship via follow-up research with knowledge institutes, civic society groups and partners from the professional field.
