Modifications to consent documentation with adults with communication disorders following brain injury: An exploratory study.

IF 0.9 3区哲学 Q3 ETHICS

Developing World Bioethics Pub Date : 2024-07-14 DOI:10.1111/dewb.12458

Jennifer Watermeyer, Chiara Aylward

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引用次数: 0

Abstract

Consent documentation for research studies is often inaccessible to people with neurogenic communication disorders following brain injury and there is limited literature on specific modifications for informed consent. This exploratory study aimed to identify effective strategies and modifications to consent processes for adults with brain injury. Using a fictitious research study, we developed a set of Participant Information Sheets (PISs) varying in complexity, presentation format, and communication modality. Evaluations were conducted with eight participants. Findings indicated diverse participant preferences for PIS modifications, suggesting simplified vocabulary, reduced text, carefully selected images, and an interactive presentation modality as helpful strategies. Building on previous literature, we present refined guidelines for consent modifications for adults with neurogenic communication disorder after brain injury. These guidelines can promote more appropriate inclusion of communicatively impaired populations in research and assist ethics committees and researchers in preparing modified consent documents.

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修改脑损伤后有交流障碍的成人的同意文件：一项探索性研究。

脑损伤后有神经源性交流障碍的人通常无法获得研究项目的同意文件，而关于知情同意的具体修改方法的文献也很有限。这项探索性研究旨在确定针对脑损伤成人的同意程序的有效策略和修改方法。通过一项虚构的研究，我们开发了一套参与者信息表 (PIS)，其复杂程度、展示形式和交流方式各不相同。我们对八名参与者进行了评估。评估结果表明，不同的参与者对 PIS 的修改有不同的偏好，建议将简化词汇、减少文字、精心挑选的图片和互动演示模式作为有用的策略。在以往文献的基础上，我们提出了针对脑损伤后神经源性交流障碍成人的同意书修改指南。这些指南可以促进将有交流障碍的人群更适当地纳入研究，并帮助伦理委员会和研究人员准备修改后的同意书文件。

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来源期刊

Developing World Bioethics 医学-医学：伦理

CiteScore

4.50

自引率

4.50%

发文量

审稿时长

>12 weeks

期刊介绍： Developing World Bioethics provides long needed case studies, teaching materials, news in brief, and legal backgrounds to bioethics scholars and students in developing and developed countries alike. This companion journal to Bioethics also features high-quality peer reviewed original articles. It is edited by well-known bioethicists who are working in developing countries, yet it will also be open to contributions and commentary from developed countries'' authors. Developing World Bioethics is the only journal in the field dedicated exclusively to developing countries'' bioethics issues. The journal is an essential resource for all those concerned about bioethical issues in the developing world. Members of Ethics Committees in developing countries will highly value a special section dedicated to their work.