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脑瘫患者全生命周期的支持性移动设备:一项用于确定利益相关者研究重点的改良德尔菲研究

Supportive mobility devices across the lifespan in Cerebral Palsy: a modified Delphi study to establish stakeholder research priorities.

作者信息

Feldner Heather A, Gaebler-Spira Deborah, Awasthi Varun, Bjornson Kristie K

机构信息

Department of Rehabilitation Medicine, University of WA, Seattle, WA, USA.

Shirley Ryan Ability Lab, Chicago, IL, USA.

出版信息

Disabil Rehabil Assist Technol. 2024 May;19(4):1739-1747. doi: 10.1080/17483107.2023.2233564. Epub 2023 Jul 15.

Abstract

PURPOSE

The aim of this study was to co-develop research priorities and identify meaningful research questions with a diverse group of stakeholders representing the CP community for implementation in subsequent research activities. The overarching aim of this research was to 1) Understand the mobility experiences, supported mobility device (SMD) use, and desired participation outcomes of people with cerebral palsy (CP) across the lifespan; and 2) Describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes.

MATERIALS AND METHODS

A three-round modified Delphi consensus study was conducted with a stakeholder advisory panel consisting of three adults with CP, two parents of children with CP, and four SMD providers.

RESULTS

The advisory panel identified 11 unique topical categories focused on SMD selection and use, stratified by age group and stakeholder role. Questions or statements within each category were ranked, and top consensus and concordance statements were retained, reviewed, and refined for use in a co-developed focus group guide. Priorities were identified in three main groupings: (1) Age/GMFCS level/Environment-related; (2) Individual with CP/Caregiver need-related; and (3) Clinician/provider partnership-related.

DISCUSSION

A modified Delphi process was a useful tool for stakeholders in co-developing research priorities related to SMD use across the lifespan. Drawing on the lived expertise of stakeholders is important in facilitating improved research translation in the CP community.

摘要

目的

本研究的目的是与代表脑瘫群体的不同利益相关者共同制定研究重点,并确定有意义的研究问题,以便在后续研究活动中实施。本研究的总体目标是:1)了解脑瘫患者在整个生命周期中的移动体验、辅助移动设备(SMD)的使用情况以及期望的参与结果;2)描述康复护理和专业资源的观点如何影响移动决策过程和结果。

材料与方法

对一个由三名成年脑瘫患者、两名脑瘫儿童的父母以及四名SMD供应商组成的利益相关者咨询小组进行了三轮改良德尔菲共识研究。

结果

咨询小组确定了11个独特的主题类别,重点是SMD的选择和使用,按年龄组和利益相关者角色进行分层。对每个类别中的问题或陈述进行了排名,并保留了最高共识和一致性陈述,进行审查和完善,以用于共同制定的焦点小组指南。在三个主要分组中确定了重点:(1)年龄/粗大运动功能分级系统(GMFCS)水平/环境相关;(2)脑瘫患者/照顾者需求相关;(3)临床医生/供应商伙伴关系相关。

讨论

改良德尔菲法是利益相关者共同制定与整个生命周期中SMD使用相关研究重点的有用工具。借鉴利益相关者的实际专业知识对于促进脑瘫群体中更好的研究转化很重要。

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