Consent and Inclusion of People Living with Dementia (PLWD) in Research: Establishing a Canadian Agenda for Inclusive Rights-Based Practices.

IF 1.7 4区医学 Q3 GERONTOLOGY

Canadian Journal on Aging-Revue Canadienne Du Vieillissement Pub Date : 2024-12-01 Epub Date: 2024-05-20 DOI:10.1017/S0714980824000217

Amanda Grenier, Deborah O'Connor, Krista James, Daphne Imahori, Daniella Minchopoulos, Nicole Velev, Laura Tamblyn-Watts, Jim Mann

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引用次数: 0

Abstract

Background: People living with dementia (PLWD) may want to participate in research, but the guidelines and processes enacted across various contexts may prohibit this from happening.

Objective: Understanding the experiences of people with lived experiences of dementia requires meaningful inclusion in research, as is consistent with rights-based perspectives. Currently, the inclusion of PLWD in Canadian research is complex, and guidelines and conceptual frameworks have not been fully developed.

Methods: This research note outlines a three-year proof-of-concept grant on the inclusion and consent of PLWD in research.

Findings: It presents a brief report on some of the contradictions and challenges that exist in legislation, research guidelines, and research practices and raises a series of questions as part of an agenda on rights and inclusion of PLWD in research.

Discussion: It suggests conceptual, legal, and policy issues that need to be addressed and invites Canadian researchers to re-envision research practices and to advocate for law and policy reform that enables dementia research to align and respect the rights and personhood of PLWD.

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痴呆症患者（PLWD）同意并参与研究：为基于权利的包容性实践制定加拿大议程》。

背景：痴呆症患者（PLWD）可能希望参与研究，但各种情况下制定的指导方针和程序可能会禁止他们参与研究：目的：要了解痴呆症患者的经历，就必须让他们切实参与研究，这与基于权利的观点是一致的。目前，将 PLWD 纳入加拿大的研究工作十分复杂，指导方针和概念框架尚未完全制定：本研究说明概述了一项为期三年的概念验证补助金，内容涉及将 PLWD 纳入研究并征得其同意：研究结果：它简要报告了在立法、研究指南和研究实践中存在的一些矛盾和挑战，并提出了一系列问题，作为有关 PLWD 在研究中的权利和融入议程的一部分：讨论：本报告提出了需要解决的概念、法律和政策问题，并邀请加拿大研究人员重新审视研究实践，倡导法律和政策改革，使痴呆症研究与 PLWD 的权利和人格保持一致并尊重 PLWD 的权利和人格。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Canadian Journal on Aging-Revue Canadienne Du Vieillissement GERONTOLOGY-

CiteScore

3.40

自引率

5.30%

发文量

109

期刊介绍： The Canadian Journal on Aging/La Revue canadienne du vieillissement (CJA/RCV) promotes excellence in research and disseminates the latest work of researchers in the social sciences, humanities, health and biological sciences who study the older population of Canada and other countries; informs policy debates relevant to aging through the publication of the highest quality research; seeks to improve the quality of life for Canada"s older population and for older populations in other parts of the world through the publication of research that focuses on the broad range of relevant issues from income security to family relationships to service delivery and best practices.