How do dementia researchers view support tools for informed consent procedures of persons with dementia?
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Gerontologie+Geriatrie Original Contributions Z Gerontol Geriat https://doi.org/10.1007/s00391-020-01779-2 Received: 30 May 2020 Accepted: 19 August 2020 © The Author(s) 2020
Theresa S. Wied3 for ENSURE Consortium · Aoife Poth2 · Johannes Pantel3 for ENSURE Consortium · Frank Oswald2 for ENSURE Consortium · Julia Haberstroh1 for ENSURE Consortium 1
Psychological Aging Research (PAR), Faculty II—Education, Architecture, Arts, University of Siegen, Siegen, Germany 2 Interdisciplinary Ageing Research (IAW), Goethe University Frankfurt, Frankfurt, Germany 3 Institute of General Practice in Frankfurt am Main, Goethe University Frankfurt, Frankfurt, Germany
How do dementia researchers view support tools for informed consent procedures of persons with dementia? Introduction and background Informed consent (IC) has to be obtained before patients can receive medical treatment or participate in research. Such IC has to meet three criteria: 1) a person with decision-making capacity 2) makes a free choice 3) following adequate information disclosure [1]. In order to be found competent, certain abilities, which can be impaired in persons with dementia (PwD), are required: understanding, appreciation, reasoning, and expression of a choice [1]. To assess whether the criteria required for IC are met, the focus is generally placed on the cognitive deficits and abilities that are impaired in PwD. As this approach does not correspond to the right to autonomy and equal legal capacity granted to PwD under the UN Convention on the Rights of Persons with Disabilities (UN-CRPD, in particular Article 12), it often ends in PwD’s having their autonomy taken away [3]; howTheresa S. Wied and Aoife Poth contributed equally to this work. The ENSURE Consortium is a transnational project team of interdisciplinary researchers: Goethe University Frankfurt (Julia Haberstroh, Frank Oswald, Johannes Pantel, Theresa Wied), Ruhr-Universität Bochum (Jakov Gather, Matthé Scholten, Jochen Vollmann), Universidade da Coruña (Nathalia Álvarez Lata, José-Antonio Seoane), Universidade Católica Portuguesa (Ana Sofia Carvalho, Pablo Hernández Marrero).
ever, efforts to use a resource-oriented approach to support and treat PwD exist [2–5]. This approach attempts to identify the deficits and resources of PwD and to focus on remaining abilities in order to enhance their communication and decision-making abilities. A systematic review of supported decision-making in PwD [10] demonstrated that it is neglected in treatment and research decisions, and only rarely applied in care and everyday contexts. Tools to enhance the informed consent process for PwD, so-called enhanced consent procedures [6], have yet to be evaluated and implemented. The present study was conducted as part of the transnational ENSURE project (Enhancing the Informed Consent Process: Supported decision-making and capacity assessment in clinical dementia research), which, among other goals has defined, implemented and evaluated tools to improve IC for PwD. In the following, by the term ‘tools’ we mean bo
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