PDF(Pubmed)
Abstract：
BACKGROUND: The role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient-led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi-CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi-CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi-CI programme was supported by a consortium of professionals in CI rehabilitation and research. The aim of this paper is to describe and evaluate the Musi-CI programme development process and its impact on professional CI rehabilitation and research.
METHODS: Programme development was described using a 3-layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video-recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis.
RESULTS: The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI-rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift.
CONCLUSIONS: Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research.
UNASSIGNED: The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write-up of the results, and co-authored this paper.
METHODS: Programme development was described using a 3-layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video-recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis.
RESULTS: The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI-rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift.
CONCLUSIONS: Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research.
UNASSIGNED: The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write-up of the results, and co-authored this paper.
摘要：
背景：患者在医疗保健研究中的作用正在缓慢发展，尽管患者在研究过程中的角色是有限的。本文报道了一个由患者主导的研究项目，旨在为人工耳蜗（CI）患者开发音乐听觉训练计划：Musi-CI计划。ACI是一种内耳假体，可让严重听力损失的人听到。然而,虽然言语可以被理解，CI用户无法充分享受音乐或对音乐感到厌恶。Musi-CI计划旨在减少这种音乐厌恶情绪，最终改善音乐享受和社会参与。Musi-CI计划的开发得到了CI康复和研究专业人员联盟的支持。本文的目的是描述和评估Musi-CI计划的开发过程及其对专业CI康复和研究的影响。
方法：使用行动研究的3层过程模型描述了程序开发，区分CI用户流程，医疗保健专业过程和研究过程。评估对方案制定过程的看法，联盟合作伙伴提供了书面意见，并参加了视频记录的反身评估会议。反思评估旨在集体学习和加强参与者之间的合作。使用模板分析对书面评论和视频数据进行分析。
结果：经验专家的参与被认为是具有挑战性的，但对所有联盟合作伙伴来说都是有益的。开拓CI-康复实践和研究的新视角。数据分析揭示了关于方案制定过程的两个主题，专业空间和认可，以及关于CI康复和研究结果的两个主题：批判性反思和范式转变。
结论：经验专家代表了一个不同的知识领域，可能有助于康复和研究的变化。
■该计划的开发是由专业音乐家和CI用户发起的，他们组织了资金，在整个研究过程中发挥了主导作用，包括结果的书写，并共同撰写了这篇论文。
方法：使用行动研究的3层过程模型描述了程序开发，区分CI用户流程，医疗保健专业过程和研究过程。评估对方案制定过程的看法，联盟合作伙伴提供了书面意见，并参加了视频记录的反身评估会议。反思评估旨在集体学习和加强参与者之间的合作。使用模板分析对书面评论和视频数据进行分析。
结果：经验专家的参与被认为是具有挑战性的，但对所有联盟合作伙伴来说都是有益的。开拓CI-康复实践和研究的新视角。数据分析揭示了关于方案制定过程的两个主题，专业空间和认可，以及关于CI康复和研究结果的两个主题：批判性反思和范式转变。
结论：经验专家代表了一个不同的知识领域，可能有助于康复和研究的变化。
■该计划的开发是由专业音乐家和CI用户发起的，他们组织了资金，在整个研究过程中发挥了主导作用，包括结果的书写，并共同撰写了这篇论文。
