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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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 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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communicative participation, language disordersOBJECTIVE(S)/RESEARCH QUESTION(S) Speech and language therapists (SLTs) are the primary care professionals to treat language and communication disorders. Their treatment is informed by a variety of outcome measures. At present, diagnosis, monitoring of progress and evaluation are often based on performance-based and clinician-reported outcomes such as results of standardized speech, language, voice, or communication tests. These tests typically aim to capture how well the person can produce or understand language in a controlled situation, and therefore only provide limited insight in the person’s challenges in life. Performance measures do not incorporate the unobservable feelings such as a patient's effort, social embarrassment, difficulty, or confidence in communication. Nor do they address language and communication difficulties experienced by the person themselves, the impact on daily life or allow patients to set goals related to their own needs and wishes. The aim of our study is give our patients a voice and empower SLTs to incorporate their patient's perspective in planning therapy. We will Aangemaakt door ProjectNet / Generated by ProjectNet: 08-12-2020 12:072Subsidieaanvraag_digitaal / Grant Application_digitaalDossier nummer / Dossier number: 80-86900-98-041DEFINITIEFdevelop a valid and reliable patient-reported outcome measure that provides information on communicative participation of people with communication disorders and integrate this item bank in patient specific goal setting in speech and language therapy. Both the item bank and the goal setting method will be adapted in cocreation with patients to enable access for people with communication difficulties.STUDY DESIGN Mixed methods research design following the MRC guidance for process evaluation of complex interventions, using PROMIS methodology including psychometric evaluation and an iterative user-centered design with qualitative co-creation methods to develop accessible items and the goal setting method.RESEARCH POPULATION Children, adolescents and adults with speech, language, hearing, and voice disorders.OUTCOME MEASURES An online patient-reported outcome measure on communicative participation, the Communicative Participation Item Bank (CPIB), CPIB items that are accessible for people with language understanding difficulties, a communicative-participation person-specific goal setting method developed with speech and language therapists and patients and tested on usability and feasibility in clinical practice, and a course for SLTs explaining the use of the goal-setting method in their clinical reasoning process.RELEVANCE This study answers one of the prioritized questions in the call for SLTs to systematically and reliably incorporate the clients’ perspective in their daily practice to improve the quality of SLT services. At present patient reported outcomes play only a small role in speech and language therapy because 1) measures (PROMS) are often invalid, not implemented and unsuitable for clinical practice and 2) there is a knowledge gap in how to capture and interpret outcomes from persons with language disorders.
