'It's not making a decision, it's prompting the discussions': a qualitative study exploring stakeholders' views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE).

IF 3 1区 哲学 Q1 ETHICS
Victoria Shepherd, Kerenza Hood, Fiona Wood
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引用次数: 0

Abstract

Background: Health and care research involving people who lack capacity to consent requires an alternative decision maker to decide whether they participate or not based on their 'presumed will'. However, this is often unknown. Advance research planning (ARP) is a process for people who anticipate periods of impaired capacity to prospectively express their preferences about research participation and identify who they wish to be involved in future decisions. This may help to extend individuals' autonomy by ensuring that proxy decisions are based on their actual wishes. This qualitative study aimed to explore stakeholders' views about the acceptability and feasibility of ARP and identify barriers and facilitators to its implementation in the UK.

Methods: We conducted semi-structured interviews with 27 researchers, practitioners, and members of the public who had participated in a preceding survey. Interviews were conducted remotely between April and November 2023. Data were analysed thematically.

Results: Participants were supportive of the concept of ARP, with differing amounts of support for the range of possible ARP activities depending on the context. Six main themes were identified: (1) Planting a seed - creating opportunities to initiate/engage with ARP; (2) A missing part of the puzzle - how preferences expressed through ARP could help inform decisions; (3) Finding the sweet spot - optimising the timing of ARP; (4) More than a piece of paper - finding the best mode for recording preferences; (5) Keeping the door open to future opportunities - minimising the risk of unintended consequences; and (6) Navigating with a compass - principles underpinning ARP to ensure safeguarding and help address inequalities. Participants also identified a number of implementation challenges, and proposed facilitative strategies that might overcome them which included embedding advance research planning in existing future planning processes and research-focused activities.

Conclusions: This study provides a routemap to implementing ARP in the UK to enable people anticipating impaired capacity to express their preferences about research, thus ensuring greater opportunities for inclusion of this under-served group, and addressing the decisional burden experienced by some family members acting as proxies. Development of interventions and guidance to support ARP is needed, with a focus on ensuring accessibility.

这不是做决定,而是引发讨论":一项定性研究,探讨利益相关者对预先研究规划(CONSULT-ADVANCE)的可接受性和可行性的看法。
背景:涉及缺乏同意能力者的健康和护理研究需要有一个替代决策者,根据他们的 "推定意愿 "决定是否参与。然而,这往往是未知的。预先研究规划 (ARP) 是一种程序,让预计能力受损的人预先表达他们对参与研究的偏好,并确定他们希望谁参与未来的决策。通过确保代理决定基于个人的实际意愿,这可能有助于扩大个人的自主权。本定性研究旨在探讨利益相关者对 ARP 可接受性和可行性的看法,并确定在英国实施 ARP 的障碍和促进因素:我们对 27 名研究人员、从业人员以及参与过之前调查的公众进行了半结构化访谈。访谈于 2023 年 4 月至 11 月间远程进行。对数据进行了专题分析:结果:参与者对 ARP 概念表示支持,但对 ARP 可能开展的一系列活动的支持程度因情况而异。确定了六大主题:(1) 播下一粒种子--创造机会启动/参与评估与研究计划;(2) 拼图中缺失的部分--通过评估与研究计划表达的偏好如何有助于为决策提供信息;(3) 找到最佳点--优化评估与研究计划的时机;(4) 不仅仅是一张纸--找到记录偏好的最佳模式;(5) 为未来的机会敞开大门--最大限度地降低意外后果的风险;(6) 用指南针导航--评估与研究计划的基本原则,以确保安全并帮助解决不平等问题。与会者还确定了一些实施挑战,并提出了可能克服这些挑战的促进战略,其中包括将预先研究规划纳入现有的未来规划流程和以研究为重点的活动:本研究提供了在英国实施预先研究规划的路线图,使预期能力受损的人能够表达他们对研究的偏好,从而确保这一服务不足的群体有更多机会参与其中,并解决一些作为代理人的家庭成员所经历的决策负担。需要制定支持 ARP 的干预措施和指南,重点是确保无障碍性。
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
BMC Medical Ethics
BMC Medical Ethics MEDICAL ETHICS-
CiteScore
5.20
自引率
7.40%
发文量
108
审稿时长
>12 weeks
期刊介绍: BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies.
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