为什么我们在糖尿病研究和教育中继续排斥社会中最脆弱的群体?应对智障人士带来的挑战

IF 0.5 Q4 ENDOCRINOLOGY & METABOLISM
Laurence Taggart
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引用次数: 0

摘要

智障人士比非智障人士更容易患糖尿病。智障人士被排斥在糖尿病研究和教育之外已有一段历史:我们现在必须从人权的角度对这一现象提出挑战。在挑战这些观念的过程中,我们必须找出排斥的道德和方法原因,并针对这些挑战提出切实可行的解决方案。首先,与残疾人有关的个人因素(残疾人能否做出知情同意、能否读/写、能否完成自我报告措施?)第二,与研究方法和研究设计有关的因素(研究能否招募到所需的人数,智障人士能否理解/接受随机化?)第三,系统/组织因素,这些因素涉及参与和完成研究的有利因素/障碍(高级管理人员的认同、作为把关人的员工、把关人持有的母性态度、干预实施的忠实性)。珍妮特-金森的这篇论文将探讨这些有意和无意的排除标准,这些标准在研究试验中经常被应用于智障人士。本文将消除人们的误解,并提出将智障人士纳入糖尿病研究和教育的解决方案。本文将利用英国国家糖尿病结构化教育计划 DESMOND,重点介绍可以进行哪些类型的合理调整,以使该计划适合智障成人:即 DESMOND-ID。本文将展示如何通过合理调整,在英国国家健康与护理研究所的临床随机对照试验中测试新改编的 DESMOND-ID 教育计划,以调查该计划的临床和成本效益。版权所有 © 2024 约翰威利父子公司。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Why do we continue to exclude the most vulnerable in our society in diabetes research and education? Addressing the challenges presented by people with intellectual disability
People with an intellectual disability are more likely to develop diabetes compared to their non‐disabled peers. There has been a history of exclusion of people with an intellectual disability from diabetes research and education: we must now challenge this from a human rights perspective. In challenging these perceptions, we must identify the ethical and methodological reasons for exclusion and offer practical solutions to these challenges.These barriers to inclusion focus on three core areas. Firstly, individual factors concerning the person with the disability (can the person give their own informed consent, can the person read/write, completion of self‐report measures?). Secondly, factors concerning the methodology and design of the research study (can studies recruit the numbers needed, can people with intellectual disability understand/accept randomisation?). And, thirdly, system/organisational factors pertaining to the enablers/barriers to engaging in and completing research studies (buy‐in from senior managers, staff acting as gatekeepers, maternalistic attitudes held by gatekeepers, fidelity of intervention delivery).This Janet Kinson paper will explore these intentional and unintentional exclusion criteria that are so often applied to people with an intellectual disability in research trial studies. This paper will dispel the myths and offer solutions for including people with an intellectual disability in diabetes research and education. Using the UK national diabetes structured education programme, DESMOND, this paper will highlight the types of reasonable adjustments that can be made to adapt this programme suitable for adults with an intellectual disability: called DESMOND‐ID. This paper will demonstrate how, with reasonable adjustments, this newly‐adapted DESMOND‐ID education programme then can be tested within a National Institute for Health and Care Research clinical randomised control trial across the UK investigating the programme's clinical and cost‐effectiveness. Copyright © 2024 John Wiley & Sons.
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来源期刊
Practical Diabetes
Practical Diabetes ENDOCRINOLOGY & METABOLISM-
CiteScore
1.10
自引率
16.70%
发文量
54
期刊介绍: Practical Diabetes concerns itself with all aspects of the worldwide clinical science and practice of diabetes medicine. The journal recognises the importance of each member of the healthcare team in the delivery of diabetes care, and reflects this diversity of professional interest in its editorial contents. The Editors welcome original papers, case reports, practice points, audit articles and letters on any aspect of clinical diabetes care from any part of the world. The journal also publishes commissioned leaders, review articles and educational and training series, for which an honorarium normally is paid. All articles submitted to Practical Diabetes are independently peer reviewed. They must not have been published or be under submission currently elsewhere. Enquiries from prospective authors are welcomed and the Editors will be pleased, if asked, to advise on preparation and submission of articles. All articles and enquiries should be directed to the Editors at the publishing address below. The journal is published nine times a year, and currently the average waiting time for acceptance of articles is eight weeks, and for subsequent publication sixteen weeks. Practical Diabetes is independent of any commercial or vested interest.
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