Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture
The right to make autonomous decisions is enshrined in law. However, the question how persons with cognitive deficits can be enabled to make autonomous decisions has not been satisfactorily addressed. In particular, the concept of supported decision-making and its implementation into practice has be...
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Frontiers Media S.A.
2021
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oai:doaj.org-article:83d724ee8ae948c0b5cedb030378f9782021-11-16T07:29:49ZSupported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture1664-064010.3389/fpsyt.2021.780276https://doaj.org/article/83d724ee8ae948c0b5cedb030378f9782021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fpsyt.2021.780276/fullhttps://doaj.org/toc/1664-0640The right to make autonomous decisions is enshrined in law. However, the question how persons with cognitive deficits can be enabled to make autonomous decisions has not been satisfactorily addressed. In particular, the concept of supported decision-making and its implementation into practice has been poorly explored for persons with dementia (PwD).This article describes the empirical development and implementation of support tools to enhance informed consent processes (so called enhanced consent procedures/ECP) for PwD on whether to undergo lumbar puncture. In the end of the process of pilot testing and further development of the tools, the following tools were defined: (1) Standardized Interview Structure, (2) Elaborated Plain Language, (3) Ambience and Room Design, (4) Keyword Lists, (5) Priority Cards, (6) Visualization, and (7) Simplified Written Informed Consent (Patient Information), as well as the general attitude (8) Person-Centered Attitude of the facilitator. As the development, implementation and evaluation of ECP tools is one objective of the transnational ENSURE project, we also include an overview of future empirical procedures. So far, our findings can serve as a selection of possibilities to support PwD in decision-making and help practitioners achieve an appropriate balance between the autonomy and protection of PwD in complex decision-making situation. Future studies should address the question if the proposed set of tools is effective to enhance informed consent processes in PwD.Theresa S. WiedJulia HaberstrohJakov GatherJakov GatherTarik KarakayaFrank OswaldMishal QubadMatthé ScholtenJochen VollmannJohannes PantelThe ENSURE ConsortiumJulia HaberstrohFrank OswaldJohannes PantelTheresa WiedJakov GatherMatthé ScholtenJochen VollmannNathalia Álvarez LataJosé-Antonio SeoaneAna Sofia CarvalhoPablo Hernández MarreroFrontiers Media S.A.articledementiasupported decision-makinginformed consentautonomylumbar puncturePsychiatryRC435-571ENFrontiers in Psychiatry, Vol 12 (2021) |
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| topic |
dementia supported decision-making informed consent autonomy lumbar puncture Psychiatry RC435-571 |
| spellingShingle |
dementia supported decision-making informed consent autonomy lumbar puncture Psychiatry RC435-571 Theresa S. Wied Julia Haberstroh Jakov Gather Jakov Gather Tarik Karakaya Frank Oswald Mishal Qubad Matthé Scholten Jochen Vollmann Johannes Pantel The ENSURE Consortium Julia Haberstroh Frank Oswald Johannes Pantel Theresa Wied Jakov Gather Matthé Scholten Jochen Vollmann Nathalia Álvarez Lata José-Antonio Seoane Ana Sofia Carvalho Pablo Hernández Marrero Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture |
| description |
The right to make autonomous decisions is enshrined in law. However, the question how persons with cognitive deficits can be enabled to make autonomous decisions has not been satisfactorily addressed. In particular, the concept of supported decision-making and its implementation into practice has been poorly explored for persons with dementia (PwD).This article describes the empirical development and implementation of support tools to enhance informed consent processes (so called enhanced consent procedures/ECP) for PwD on whether to undergo lumbar puncture. In the end of the process of pilot testing and further development of the tools, the following tools were defined: (1) Standardized Interview Structure, (2) Elaborated Plain Language, (3) Ambience and Room Design, (4) Keyword Lists, (5) Priority Cards, (6) Visualization, and (7) Simplified Written Informed Consent (Patient Information), as well as the general attitude (8) Person-Centered Attitude of the facilitator. As the development, implementation and evaluation of ECP tools is one objective of the transnational ENSURE project, we also include an overview of future empirical procedures. So far, our findings can serve as a selection of possibilities to support PwD in decision-making and help practitioners achieve an appropriate balance between the autonomy and protection of PwD in complex decision-making situation. Future studies should address the question if the proposed set of tools is effective to enhance informed consent processes in PwD. |
| format |
article |
| author |
Theresa S. Wied Julia Haberstroh Jakov Gather Jakov Gather Tarik Karakaya Frank Oswald Mishal Qubad Matthé Scholten Jochen Vollmann Johannes Pantel The ENSURE Consortium Julia Haberstroh Frank Oswald Johannes Pantel Theresa Wied Jakov Gather Matthé Scholten Jochen Vollmann Nathalia Álvarez Lata José-Antonio Seoane Ana Sofia Carvalho Pablo Hernández Marrero |
| author_facet |
Theresa S. Wied Julia Haberstroh Jakov Gather Jakov Gather Tarik Karakaya Frank Oswald Mishal Qubad Matthé Scholten Jochen Vollmann Johannes Pantel The ENSURE Consortium Julia Haberstroh Frank Oswald Johannes Pantel Theresa Wied Jakov Gather Matthé Scholten Jochen Vollmann Nathalia Álvarez Lata José-Antonio Seoane Ana Sofia Carvalho Pablo Hernández Marrero |
| author_sort |
Theresa S. Wied |
| title |
Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture |
| title_short |
Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture |
| title_full |
Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture |
| title_fullStr |
Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture |
| title_full_unstemmed |
Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture |
| title_sort |
supported decision-making in persons with dementia: development of an enhanced consent procedure for lumbar puncture |
| publisher |
Frontiers Media S.A. |
| publishDate |
2021 |
| url |
https://doaj.org/article/83d724ee8ae948c0b5cedb030378f978 |
| work_keys_str_mv |
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