Dataset Information

Inclusion of ethical issues in dementia guidelines: a thematic text analysis.

ABSTRACT:

Background

Clinical practice guidelines (CPGs) aim to improve professionalism in health care. However, current CPG development manuals fail to address how to include ethical issues in a systematic and transparent manner. The objective of this study was to assess the representation of ethical issues in general CPGs on dementia care.

Methods and findings

To identify national CPGs on dementia care, five databases of guidelines were searched and national psychiatric associations were contacted in August 2011 and in June 2013. A framework for the assessment of the identified CPGs' ethical content was developed on the basis of a prior systematic review of ethical issues in dementia care. Thematic text analysis and a 4-point rating score were employed to assess how ethical issues were addressed in the identified CPGs. Twelve national CPGs were included. Thirty-one ethical issues in dementia care were identified by the prior systematic review. The proportion of these 31 ethical issues that were explicitly addressed by each CPG ranged from 22% to 77%, with a median of 49.5%. National guidelines differed substantially with respect to (a) which ethical issues were represented, (b) whether ethical recommendations were included, (c) whether justifications or citations were provided to support recommendations, and (d) to what extent the ethical issues were explained.

Conclusions

Ethical issues were inconsistently addressed in national dementia guidelines, with some guidelines including most and some including few ethical issues. Guidelines should address ethical issues and how to deal with them to help the medical profession understand how to approach care of patients with dementia, and for patients, their relatives, and the general public, all of whom might seek information and advice in national guidelines. There is a need for further research to specify how detailed ethical issues and their respective recommendations can and should be addressed in dementia guidelines. Please see later in the article for the Editors' Summary.

SUBMITTER: Knuppel H

PROVIDER: S-EPMC3742442 | biostudies-literature | 2013 Aug

REPOSITORIES: biostudies-literature

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Publications

Inclusion of ethical issues in dementia guidelines: a thematic text analysis.

Knüppel Hannes H Mertz Marcel M Schmidhuber Martina M Neitzke Gerald G Strech Daniel D

PLoS medicine 20130813 8

<h4>Background</h4>Clinical practice guidelines (CPGs) aim to improve professionalism in health care. However, current CPG development manuals fail to address how to include ethical issues in a systematic and transparent manner. The objective of this study was to assess the representation of ethical issues in general CPGs on dementia care.<h4>Methods and findings</h4>To identify national CPGs on dementia care, five databases of guidelines were searched and national psychiatric associations were ...[more]

PMID: 23966839

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Project description:BackgroundWhen including participants with dementia in research, various ethical issues arise. At present, there are only a few existing dementia-specific research guidelines (Committee for Medicinal Products for Human Use in Clinical investigation of medicines for the treatment Alzheimer's disease (Internet). https://www.ema.europa.eu/en/clinical-investigation-medicines-treatment-alzheimers-disease ; Food and Drug Administration, Early Alzheimer's Disease: Developing Drugs for Treatment Guidance for Industry [Internet]. http://www.fda.gov/regulatory-information/search-fda-guidance-documents/alzheimers-disease-developing-drugs-treatment-guidance-industy ), necessitating a more systematic and comprehensive approach to this topic to help researchers and stakeholders address dementia-specific ethical issues in research. A systematic literature review provides information on the ethical issues in dementia-related research and might therefore serve as a basis to improve the ethical conduct of this research. This systematic review aims to provide a broad and unbiased overview of ethical issues in dementia research by reviewing, analysing, and coding the latest literature on the topic.MethodsWe conducted a systematic review in PubMed and Google Scholar (publications in English between 2007 and 2020, no restrictions on the type of publication) of literature on research ethics in dementia research. Ethical issues in research were identified by qualitative text analysis and normative analysis.ResultsThe literature review retrieved 110 references that together mentioned 105 ethical issues in dementia research. This set of ethical issues was structured into a matrix based on the eight major principles from a pre-existing framework on biomedical ethics (Emanuel et al. An Ethical Framework for Biomedical Research. in The Oxford textbook of clinical research ethics, Oxford University Press, Oxford, 2008). Consequently, subcategories were created and further categorized into dementia stages and study phases.ConclusionsThe systematically derived matrix helps raise awareness and understanding of the complex topic of ethical issues in dementia research. The matrix can be used as a basis for researchers, policy makers and other stakeholders when planning, conducting and monitoring research, making decisions on the legal background of the topic, and creating research practice guidelines.

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Project description:BackgroundAs the world's population rapidly ages, the number of older adults with cognitive impairment will also increase. Several studies have identified numerous complex needs of people with dementia, which assistive technologies still fail to support. Recent trends have led to an increasing focus on the use of embodied conversational agents (ECAs) as virtual entities able to interact with a person through natural and familiar verbal and nonverbal communication. The use of ECAs could improve the accessibility and acceptance of assistive technologies matching those high-level needs that are not well covered to date.ObjectiveThe aim of this thematic literature analysis was to map current studies in the field of designing ECAs for patients with dementia in order to identify the existing research trend and possible gaps that need to be covered in the near future. The review questions in this study were as follows: (1) what research frameworks are used to study the interaction between patients with dementia and ECAs? (2) what are the findings? and (3) what are the barriers reported in these studies?MethodsSeparate literature searches were conducted in PubMed, Web of Science, Scopus, and Embase databases by using specific umbrella phrases to target the population (patients with dementia) and the technology-based intervention (embodied conversational agent). Studies that met the inclusion criteria were appraised through the Mixed Methods Appraisal Tool and then discussed in a thematic analysis.ResultsThe search process identified 115 records from the databases and study references. After duplicates (n=45) were removed, 70 papers remained for the initial screening. A total of 7 studies were finally included in the qualitative synthesis. A thematic analysis of the reviewed studies identified major themes and subthemes: the research frameworks used to gather users' perspectives on ECAs (theme 1), the insights shared by the 7 studies as well as the value of user involvement in the development phases and the challenge of matching the system functionalities with the users' needs (theme 2), and the main methodological and technical problems faced by each study team (theme 3).ConclusionsOur thematic literature analysis shows that the field of ECAs is novel and poorly discussed in the scientific community and that more sophisticated study designs and proofs of efficacy of the approach are required. Therefore, by analyzing the main topic of the narrative review, this study underscores the challenge of synchronizing and harmonizing knowledge, efforts, and challenges in the dementia care field and its person-centered paradigm through the user-centered design approach. Enabling strict collaboration between interdisciplinary research networks, medical scientists, technology developers, patients, and their formal and informal caregivers is still a great challenge in the field of technologies for older adults.

Dataset Information

Inclusion of ethical issues in dementia guidelines: a thematic text analysis.

Background

Methods and findings

Conclusions

Publications

Inclusion of ethical issues in dementia guidelines: a thematic text analysis.

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