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中风研究公众患者参与小组的开发与评估

Development and evaluation of a stroke research Public Patient Involvement Panel.

作者信息

O'Reilly Siobhán, Whiston Aoife, Cronin Aine, Corbett Eva, O'Mahony Amy, Manning Molly X, Boland Pauline, Robinson Katie, Galvin Rose, Allardyce Joanna M, Butler Mike, Bradley Jim, Salsberg Jon, O'Connor Margaret, Pond Patricia, Murphy Eva, Glynn Liam G, Cunningham Nora, Hennessy Edel, Hayes Sara

机构信息

School of Allied Health, University of Limerick, Limerick, County Limerick, Ireland.

Health Research Institute, University of Limerick, Limerick, County Limerick, Ireland.

出版信息

HRB Open Res. 2025 Apr 7;7:22. doi: 10.12688/hrbopenres.13838.2. eCollection 2024.

Abstract

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.

摘要

背景

公众和患者参与(PPI)在中风研究中很重要,以确保所开展的研究反映中风患者的优先事项和需求。已发现若干因素会影响公众和患者参与,包括研究地点和参与所需时间。中风发病率正在上升,可导致疲劳、抑郁以及身体/认知障碍等症状。

目的

1)描述用于中风康复研究的公众和患者参与小组以及医疗专业人员小组的组建情况,2)探讨公众和患者参与小组的成员对参与研究过程的看法。

方法

将组建一个由多达20名中风患者、公众成员和医疗专业人员组成的利益相关者小组。将采用雪球抽样的务实目的抽样技术招募成员。公众和患者参与小组将召开四次会议,并将得到根据“参与”框架制定的指南的支持。公众和患者参与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、此类研究的开展、结果分析和传播。在小组组建完成后,我们将开展半结构化焦点小组以收集定性数据,审视成员的看法。数据将进行转录,并使用布劳恩和克拉克的反思性主题分析法进行分析。这将得出一组主题和子主题,描述参与者在中风康复研究中参与公众和患者参与小组的意见和经历。

结论

公众和患者参与是中风研究的重要组成部分。利益相关者可为研究过程提供关键见解。这项定性研究的结果将深入了解他们参与中风康复研究中公众和患者参与的障碍和促进因素。

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