Kessler Dorothy, Hatch Stacey, Alexander Libby, Grimes David, Côté Diane, Liddy Clare, Mestre Tiago
School of Rehabilitation Therapy, 31 George Street, Queen's University, Kingston, Ontario, K7L 3N6, Canada; C.T. Lamont Primary Health Care Research Centre, Bruyère Research Institute, 43 Bruyère Street, Annex E, Ottawa, ON, K1N 5C8, Canada.
School of Rehabilitation Therapy, 31 George Street, Queen's University, Kingston, Ontario, K7L 3N6, Canada.
Patient Educ Couns. 2021 Jan;104(1):136-142. doi: 10.1016/j.pec.2020.07.002. Epub 2020 Jul 8.
To evaluate the acceptability of the Integrated Parkinson's disease Care Network (IPCN) from the perspectives of persons with Parkinson's disease (PD), their care partners and healthcare providers, including identification of important components and areas for improvement.
We used a descriptive qualitative approach with interviews (n = 15) and focus groups (n = 31) with persons with PD who were newly diagnosed and those with advanced PD, care partners and healthcare providers. Questions were designed to gather feedback on each component of the IPCN.
Four overarching categories emerged: CCI support, New knowledge, Goal identification and achievement, and Readiness for self-management. These represent important aspects of participants' experiences of the IPCN.
Most participants experienced the IPCN as helpful for managing living with PD and accessing resources. The relationship with the CCI was a critical component; the CCI was perceived to be knowledgeable, accessible, and responsive.
The IPCN is a model to promote coordinated care and self-management. This study supports the key components of the IPCN as important for supporting patients in managing their lives with PD. Incorporation of other strategies to support self-management may enhance the model. Availability of and access to community resources was identified as an ongoing challenge.
从帕金森病（PD）患者、他们的照护伙伴以及医疗服务提供者的角度，评估帕金森病综合照护网络（IPCN）的可接受性，包括确定重要组成部分和改进领域。
我们采用描述性定性方法，对新诊断的PD患者、晚期PD患者、照护伙伴以及医疗服务提供者进行访谈（n = 15）和焦点小组讨论（n = 31）。问题旨在收集对IPCN每个组成部分的反馈。
出现了四个总体类别：慢性病综合管理（CCI）支持、新知识、目标确定与实现以及自我管理准备情况。这些代表了参与者在IPCN体验中的重要方面。
大多数参与者认为IPCN有助于管理PD生活并获取资源。与CCI的关系是一个关键组成部分；CCI被认为知识渊博、易于联系且响应迅速。
IPCN是促进协调照护和自我管理的一种模式。本研究支持IPCN的关键组成部分对支持患者管理PD生活很重要。纳入其他支持自我管理的策略可能会增强该模式。社区资源的可用性和获取被确定为一个持续存在的挑战。
