Reference:
57000005
Abstract:
This is a summary of the request. The Governor Kremers Centre (GKC) started in 2002 as a corporate initiative of service providers and the academic chair on intellectual disability at Maastricht University. It is now aiming at extending and consolidating its activities as a consortium of Maastricht University, major service providers and NIVEL. The GKC main goal is promoting applied research in Intellectual Disabilities (ID) to enhance professional knowledge and competence in practice. Its mission is to support the quality of life of persons with ID and their families. The GKC therefore organises and facilitates research as well as academic education with respect to ID. All projects are defined and conducted in close collaboration with persons with ID and their families as well as with professional service providers.The central theme of the GKC research projects is ﾑIntellectual Disability: a life cycle approach to valuing peopleﾒ. Projects are a structural part of the Maastricht University Care and Public Health Research Institute (CAPHRI) and the Research Institute Growth and Development (GROW). These research institutes are recognized by the Royal Netherlands Academy of Arts and Sciences (KNAW). The GKC ZONMw projects fit into the activities and structure of the GKC. The proposal compromises three PhD studies together with a client participation project and the development of a training module for physicians. The PhD projects are: 1. Ageing in persons with specific syndromes and ID. The low prevalence of people with ID due to specific syndromes gives them the status of orphan diseases. Since the morbidity found in persons with ID is only partly inherent to the disabilities itself, the goal is to develop health and support monitoring systems. 2. Community participation. This project focuses at changes due to age in participation needs and resources. Deceased parents and lacking offspring, as well as smaller numbers of friends threaten the already limited social networks of older people with ID in the community. How to improve quality of life given these circumstances? 3. End-of-life care for people with ID. The goal and challenge of this study is to take account of consumer preferences, e.g. focussing on care from the perspective of families and people with ID themselves, and to contribute to guideline development on (medical) issues at the end of life. Guiding principle for all the proposed projects is that people with ID must be involved in research given the substantial value of their experiential knowledge and the normative imperative that those whose interests are at stake should have a say. All to often the voice of people with ID remains unheard when it comes to choices in health care and health research. Therefore people with ID will be involved as participants, as advisors and as research partners. The three levels of participation must ensure that the projects meet the needs and includes the perspectives of the persons with ID and that people with ID are given a voice in science. The PhD students will receive their training within the GKC programme ﾑIntellectual Disability: a life cycle approach to valuing peopleﾒ within Maastricht University research institutes CAPHRI and GROW. Embedding the projects within the GKC not only guarantees a basis for combining resources of the academic and professional clinical field but also for implementation and including the participantsﾒ perspective.
PROJECT DETAILS
beginning: 2008.
end: 2012.
Country of research: Netherlands
Counry of funding source: Netherlands
Funding organization: Netherlands Organisation for Health Research and Development
Financing: NATIONAL FUNDINGS – 560 000 €