scholarly journals Older Persons’ and Their Caregivers’ Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review

2020 ◽  
Author(s):  
Annmarie Hosie ◽  
Slavica Kochovska ◽  
Nola Ries ◽  
Imelda Gilmore ◽  
Deborah Parker ◽  
...  
Keyword(s):  
Decision Making ◽  
Cognitive Impairment ◽  
Scoping Review ◽  
Older Persons ◽  
English Language ◽  
Research Participation ◽  
Proxy Consent ◽  
Willingness To Participate ◽  
Decision Making Capacity ◽  
Scoping Reviews

Abstract Background and Objectives Human research ethics statements support equitable inclusion of diverse groups. Yet older people are under-represented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Research Design and Methods Scoping review of literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. Results From 4171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods and foci, with hypothetical scenarios, quantitative analyses and examination of proxy consent predominating. Participants (n=7331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%) and older persons with dementia/cognitive impairment (6%). Synthesis identified two themes: willingness to participate and decision-making approaches. Discussion and Implications Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons’ and caregivers’ perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.

Ongoing Consent in Situations of Cognitive Vulnerability

2019 ◽  
pp. 3-14 ◽  
Author(s):  
Lauren R. Sankary ◽  
Paul J. Ford
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Ethical Issues ◽  
Cognitive Vulnerability ◽  
Research Participation ◽  
Proxy Consent ◽  
Decision Making Capacity ◽  
Research Oversight ◽  
Vulnerable Patient ◽  
Study Participants

This chapter explores ethical issues in obtaining ongoing consent for clinical research involving cognitively vulnerable patient populations. Stakeholders in these challenges include researchers, sponsors, study participants, caregivers and other legally authorized representatives, and research oversight boards. First, this chapter examines existing conceptual frameworks and proposed safeguards for the protection of cognitively vulnerable research participants, including double consent, proxy consent with participant assent, advance consent, and process consent. This chapter then proposes an inclusionary approach to obtaining ongoing consent to research participation when cognition could fluctuate over the course of research participation. Proposed safeguards and modifications to the consent process should address duration of research participation, the nature and timing of research-related risks, expected and unexpected fluctuations in decision-making capacity, and the process of exiting a clinical trial. The proposed framework is then applied to the specific context of implanted neural device trials, with special attention to considerations for device explant.

Decision-making capacity for research participation among individuals in the CATIE schizophrenia trial

2005 ◽  
Vol 80 (1) ◽  
pp. 1-8 ◽  
Author(s):  
Scott Stroup ◽  
Paul Appelbaum ◽  
Marvin Swartz ◽  
Mukesh Patel ◽  
Sonia Davis ◽  
...  
Keyword(s):  
Decision Making ◽  
Research Participation ◽  
Decision Making Capacity

Irritant-Induced Chronic Cough Triggers: A Scoping Review and Clinical Checklist

2021 ◽  
pp. 1-31
Author(s):  
Mary J. Sandage ◽  
Elizabeth S. Ostwalt ◽  
Lauren H. Allison ◽  
Grace M. Cutchin ◽  
Mariah E. Morton ◽  
...  
Keyword(s):  
Scoping Review ◽  
Full Text ◽  
Chronic Cough ◽  
English Language ◽  
Meta Analysis ◽  
Occupational Exposures ◽  
Unique Contribution ◽  
International Scope ◽  
Scoping Reviews ◽  
Full Text Review

Purpose The primary aim of this review was to identify environmental irritants known to trigger chronic cough through the life span and develop a comprehensive clinically useful irritant checklist. Method A scoping review was conducted using the Preferred Reporting Items for Systematic Review and Meta-Analysis Extension for Scoping Reviews, checklist, and explanation. English-language, full-text resources were identified through Medline, PsycINFO, SPORTDiscus, Web of Science, and ProQuest Dissertations and Theses Global. Results A total of 1,072 sources were retrieved; of these, 109 were duplicates. Titles of abstracts of 963 articles were screened, with 295 selected for full-text review. Using the exclusion and inclusion criteria listed, 236 articles were considered eligible and 214 different triggers were identified. Triggers were identified from North America, Europe, Africa, Asia, and Australia. Occupational exposures were also delineated. Conclusions A clinically useful checklist of both frequently encountered triggers and idiosyncratic or rare triggers was developed. The clinical checklist provides a unique contribution to streamline and standardize clinical assessment of irritant-induced chronic cough. The international scope of this review extends the usefulness of the clinical checklist to clinicians on most continents.

Technology use to improve everyday occupations in older persons with mild dementia or mild cognitive impairment: A scoping review

2018 ◽  
Vol 81 (10) ◽  
pp. 555-565 ◽  
Author(s):  
Ann-Helen Patomella ◽  
Meryl Lovarini ◽  
Eva Lindqvist ◽  
Anders Kottorp ◽  
Louise Nygård
Keyword(s):  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Scoping Review ◽  
Technology Use ◽  
Older Persons ◽  
Mild Dementia

scholarly journals Everyday Decision-Making Ability in Older Persons With Cognitive Impairment

2008 ◽  
Vol 16 (8) ◽  
pp. 693-696 ◽  
Author(s):  
James M. Lai ◽  
Thomas M. Gill ◽  
Leo M. Cooney ◽  
Elizabeth H. Bradley ◽  
Keith A. Hawkins ◽  
...  
Keyword(s):  
Decision Making ◽  
Cognitive Impairment ◽  
Older Persons

scholarly journals Diversity or disarray? A systematic review of decision-making capacity for treatment and research in schizophrenia and other non-affective psychoses

2017 ◽  
Vol 47 (11) ◽  
pp. 1906-1922 ◽  
Author(s):  
B. W. J. Spencer ◽  
G. Shields ◽  
T. Gergel ◽  
M. Hotopf ◽  
G. S. Owen
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Wide Spectrum ◽  
Meta Analysis ◽  
Research Participation ◽  
Demographic Factors ◽  
Neurocognitive Deficits ◽  
Ovid Medline ◽  
Decision Making Capacity ◽  
Socio Demographic Factors

BackgroundValid consent for treatment or research participation requires that an individual has decision-making capacity (DMC), which is the ability to make a specific decision. There is evidence that the psychopathology of schizophrenia can compromise DMC. The objective of this review was to examine the presence or absence of DMC in schizophrenia and the socio-demographic/psychopathological factors associated.MethodsWe searched three databases Embase, Ovid MEDLINE(R), and PsycINFO for studies reporting data on the proportion of DMC for treatment and research (DMC-T and DMC-R), and/or socio-demographic/psychopathological associations with ability to make such decisions, in people with schizophrenia and related illnesses.ResultsA total of 40 studies were identified. While high levels of heterogeneity limited direct comparison, meta-analysis of inpatient data showed that DMC-T was present in 48% of people. Insight was strongly associated with DMC-T. Neurocognitive deficits were strongly associated with lack of DMC-R and to a lesser extent DMC-T. With the exception of years of education, there was no evidence for an association with socio-demographic factors.ConclusionsInsight and neurocognitive deficits are most closely associated with DMC in schizophrenia. The lack of an association with socio-demographic factors dispels common misperceptions regarding DMC and characteristics such as age. Although our results reveal a wide spectrum of DMC-T and DMC-R in schizophrenia, this could be partly due to the complexity of the DMC construct and the heterogeneity of existing studies. To facilitate systematic review research, there is a need for improvement within research study design and increased consistency of concepts and tools.

Medical decision-making capacity in patients with mild cognitive impairment

Neurology ◽  
2007 ◽  
Vol 69 (15) ◽  
pp. 1528-1535 ◽  
Author(s):  
O. Okonkwo ◽  
H. R. Griffith ◽  
K. Belue ◽  
S. Lanza ◽  
E. Y. Zamrini ◽  
...  
Keyword(s):  
Decision Making ◽  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Medical Decision Making ◽  
Medical Decision ◽  
Decision Making Capacity
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