卒中研究公众患者参与小组的发展与评估。

HRB open research Pub Date : 2025-04-07 eCollection Date: 2024-01-01 DOI:10.12688/hrbopenres.13838.2
Siobhán O'Reilly, Aoife Whiston, Aine Cronin, Eva Corbett, Amy O'Mahony, Molly X Manning, Pauline Boland, Katie Robinson, Rose Galvin, Joanna M Allardyce, Mike Butler, Jim Bradley, Jon Salsberg, Margaret O'Connor, Patricia Pond, Eva Murphy, Liam G Glynn, Nora Cunningham, Edel Hennessy, Sara Hayes
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引用次数: 0

摘要

背景:公众和患者参与(PPI)在卒中研究中很重要,以确保所进行的研究反映卒中后患者的优先事项和需求。有几个因素影响PPI,包括研究地点和参与的时间要求。中风的发病率正在上升,并可导致疲劳、抑郁和身体/认知障碍等症状。目的:1)描述脑卒中康复研究的PPI小组和医疗保健专业小组的发展;2)探讨PPI小组成员参与研究过程的观点。方法:一个由多达20名中风患者、公众成员和医疗保健专业人员组成的利益相关者小组将成立。使用滚雪球抽样的实用目的抽样技术将用于招募成员。PPI小组将召开四次会议,并将由参与框架制定的指南提供支持。PPI小组将作为共同研究人员参与未来中风康复研究的概念化、此类研究的交付、研究结果的分析和传播。随着小组的发展,我们将进行半结构化的焦点小组,以收集定性数据,研究成员的观点。使用Braun和Clarke的反身性主题分析对数据进行转录和分析。这将产生一组主题和副主题,描述参与者在卒中康复研究中作为PPI小组的意见和经验。结论:PPI是脑卒中研究的重要组成部分。利益相关者可以为研究过程提供关键的见解。这一定性研究的结果将提供深入了解障碍和推动他们参与脑卒中康复研究的PPI。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Development and evaluation of a stroke research Public Patient Involvement Panel.

Background: Public and patient involvement (PPI) is important in stroke research to ensure that research conducted reflects the priorities and needs of people after stroke. Several factors have been found to affect PPI, including location of the research and time requirements for participation. The incidence of stroke is rising, and can result in symptoms including fatigue, depression, and physical/cognitive impairments.

Aims: 1) Describe the development of a PPI panelpanel and a healthcare professional panelpanel for stroke rehabilitation research and 2) to explore the perspectives of the members of the PPI groups on being involved in the research process.

Methods: A stakeholder panel consisting of up to 20 people with stroke, members of the public and healthcare professionals will be formed. A pragmatic purposive sampling technique using snowball sampling will be used to recruit members. The PPI panel will meet four times and will be supported by the guidelines developed from the INVOLVE framework. The PPI panel will be involved as co-researchers in the conceptualisation of future stroke rehabilitation research, the delivery of such studies, the analysis and dissemination of findings. Following the development of the panel, we will conduct a semi-structured focus groups to collect qualitative data, examining the perspectives of members. Data will be transcribed and analysed using Braun and Clarke's Reflexive Thematic Analysis. This will result in a set of themes and subthemes describing participants' opinions and experience of being on a PPI panel in stroke rehabilitation research.

Conclusions: PPI is an essential part of research in stroke. Stakeholders can provide key insights into the research processes. The results of this qualitative study will provide insight into the barriers and enablers of their participation in PPI in stroke rehabilitation research.

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