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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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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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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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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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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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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Background: Differences in professional practice might hinder initiation of student participation during international placements, and thereby limit workplace learning. This study explores how healthcare students overcome differences in professional practice during initiation of international placements. Methods: Twelve first-year physiotherapy students recorded individual audio diaries during the first month of international clinical placement. Recordings were transcribed, anonymized, and analyzed following a template analysis approach. Team discussions focused on thematic interpretation of results. Results: Students described tackling differences in professional practice via ongoing negotiations of practice between them, local professionals, and peers. Three themes were identified as the focus of students’ orientation and adjustment efforts: professional practice, educational context, and individual approaches to learning. Healthcare students’ initiation during international placements involved a cyclical process of orientation and adjustment, supported by active participation, professional dialogue, and self-regulated learning strategies.Conclusions: Initiation of student participation during international placements can be supported by establishing a continuous dialogue between student and healthcare professionals. This dialogue helps align mutual expectations regarding scope of practice, and increase understanding of professional and educational practices. Better understanding, in turn, creates trust and favors meaningful students’ contribution to practice and patient care.
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Students’ health profession education includes learning at the workplace through placements. For students, participating in daily work activities in interaction with supervisors, co-workers and peers is a valuable practice to learn the expertise that is needed to become a health care professional. To contribute to the understanding of HPE-students’ workplace learning, the focus of this study is to identify affordances and characterise student’s participation during placements. We applied a research design based on observations. Three student-physiotherapists and four student-nurses were shadowed during two of their placement days. A categorisation of affordances is provided, in terms of students’ participation in activities, direct interactions and indirect interactions. Students’ daily participation in placements is discussed through unique combinations and sequences of the identified affordances reflecting changing patterns over time, and differences in the degree of presence or absence of supervisors, co-workers and peers.
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Social changes have been influencing determinants for sports participation since the introduction of the Sport for All ideology in the early 1970s. Consistent with Crum’s sportisation theory, today’s modes of sports practices, as well as the network of sport services, have diversified and de-traditionalised. As part of a research tradition, this contribution aims at analysing changes in sports participation styles in kinesiology students in Belgium during the past four decades (1972–2009). The distinct target group was supposed to fulfil a trend-setting role in the area of active sports participation. Data were obtained from a standardised retrospective questionnaire on leisure-time sports participation. Using standardised methods, Principal Component Analysis was used to identify patterns of sports participation. The results show a diversification of sports participation styles until the 1980s, followed by an intensification of basic style components since the 1990s. Sports participation styles between 1999 and 2009 are subdivided into multiple distinct traditional and non-traditional components, with growing emphasis on non-traditional, alternative practices. Newly observed components in 2009 are discussed in relation to previous time intervals and trends in sports participation.
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BACKGROUND:Knowledge on long-term participation is scarce for patients with paid employment at the time of stroke. OBJECTIVE:Describe the characteristics and the course of participation (paid employment and overall participation) in patients who did and did not remain in paid employment. METHODS:Patients with paid employment at the time of stroke completed questions on work up to 30 months after starting rehabilitation, and the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P, Frequency, Restrictions and Satisfaction scales) up to 24 months. Baseline characteristics of patients with and without paid employment at 30 months were compared using Fisher’s Exact Tests and Mann-Whitney U Tests. USER-P scores over time were analysed using Linear Mixed Models. RESULTS:Of the 170 included patients (median age 54.2 interquartile range 11.2 years; 40% women) 50.6% reported paid employment at 30 months. Those returning to work reported at baseline more working hours, better quality of life and communication, were more often self-employed and in an office job. The USER-P scores did not change statistically significantly over time. CONCLUSION:About half of the stroke patients remained in paid employment. Optimizing interventions for returning to work and achieving meaningful participation outside of employment seem desirable.
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