 | Marjolein Gysels Dr, Senior researcher - University of Amsterdam |
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02.02.2015-30.04.2015
The ethical implications and attitudes towards dementia research
The aim of the project is to conduct 1) a systematic review of the literature on stakeholders’ attitudes towards involvement in dementia research, and 2) a systematic review on the ethical issues associated with research on dementia. 1. The paper focusing on the empirical evidence regarding attitudes towards research has the following objectives: • Which stakeholders’ views regarding involvement in research are represented in the evidence and what are these? • Are patients and other stakeholders willing to participate in research on dementia? • How is participation in dementia research experienced? • What are the methodological obstacles and facilitating factors to participation in dementia research? • What are best practices to involve patients in research? 2. The paper which will focus on the main ethical issues in the debates on participation in dementia research has the following objectives: • To identify the central ethical issues and arguments characterising research on dementia. • To describe and appraise the origin and characteristics of the primary studies. • To assess the suitability of the evidence to guide research governance in dementia research.
Marjolein Gysels is anthropologist at the University of Amsterdam with 29 years of research experience. She has always worked in international projects and lived in diverse parts of the world. Her early work involved ethnographic research on an undocumented oral narrative tradition in Lubumbashi, Democratic Republic Congo. Later, she conducted research in several public health projects during the HIV/AIDS epidemic in Tanzania and Uganda.
Since 2001, she developed expertise in palliative care, long-term care, care for older people, and people with dementia. This covers diverging fields as the distressing but neglected symptom of breathlessness, diversity and cultural issues in ageing, the global construction and development of the palliative care movement, research synthesis methodology, ethics in end-of life-care-research, on which she has 79 peer-reviewed scientific publications. Currently her main research line is participative art for older people – with and without dementia.
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