Gauthier-Beaupré Amélie, Poitras Emely, Grosjean Sylvie, Mestre Tiago A
Faculty of Health Sciences, University of Ottawa, Ottawa, ON K1N 6N5, Canada.
Department of Communication, University of Ottawa, Ottawa, ON K1N 6N5, Canada.
J Pers Med. 2022 Jun 19;12(6):1001. doi: 10.3390/jpm12061001.
As part of the iCARE-PD project, a multinational and multidisciplinary research endeavour to address complex care in Parkinson's disease, a Canadian case study focused on gaining a better understanding of people living with Parkinson's disease (PwP) experiences with health and medical services, particularly their vision for a sustainable, tailored and integrated care delivery network. The multifaceted nature of the condition means that PwP must continuously adapt and adjust to every aspect of their lives, and progressively rely on support from care partners (CP) and various health care professionals (HCP). To envision the integrated care delivery network from the perspective of PwP, the study consisted of designing scenarios for an integrated care delivery network with patients, their CP and their HCP, as well as identifying key requirements for designing an integrated care delivery network. The results demonstrate that numerous networks interact, representing specific inscriptions, actors and mediators who meet at specific crossing points. This resulted in the creation of a roadmap and toolkit that takes into consideration the unique challenges faced by PwP, and the necessity for an integrated care delivery network that can be personalized and malleable so as to adapt to evolving and changing needs over time.
作为iCARE-PD项目的一部分，这是一项旨在解决帕金森病复杂护理问题的跨国多学科研究工作，一项加拿大案例研究专注于更好地了解帕金森病患者（PwP）在健康和医疗服务方面的经历，特别是他们对可持续、量身定制和综合护理服务网络的愿景。该疾病的多面性意味着帕金森病患者必须不断适应和调整生活的方方面面，并逐渐依赖护理伙伴（CP）和各类医疗保健专业人员（HCP）的支持。为了从帕金森病患者的角度设想综合护理服务网络，该研究包括与患者、他们的护理伙伴和医疗保健专业人员一起设计综合护理服务网络的方案，以及确定设计综合护理服务网络的关键要求。结果表明，众多网络相互作用，代表了在特定交叉点相遇的特定印记、参与者和调解者。这导致创建了一个路线图和工具包，其中考虑到了帕金森病患者面临的独特挑战，以及建立一个能够个性化且具有可塑性的综合护理服务网络的必要性，以便随着时间的推移适应不断演变和变化的需求。
