■获取帕金森病(PwPD)患者及其护理伙伴(CP)对帕金森病(PD)生活经历的看法,以表征满足其生物心理社会和医疗保健需求的新护理模式。
■这项现象学研究包括半结构化焦点小组,探索PD诊断/护理经验以及PwPD和CP之间理想护理模型的概念化。通过主题分析对数据进行分析。
■25个人(PwPD,n=18;CP,n=7)参加了四个焦点小组。研究人员开发了四个主题来描述参与者的生活经验,障碍,需要警方的护理。这些主题将护理的关键希望描述为:1)以人为本,(2)协调,3)提供教育和信息,4)建立在社区利益的基础上。
■与会者强调,除了临床互动和以诊断为中心的对话,他们希望整体医疗保健,承认他们与PD的生活大局。PwPD的理想护理模式应以以人为本为目标,最大化跨多个学科的协作和协调,提供对广泛信息和资源的访问,指社区中心和支持团体,并在设计时考虑到导航的便利性。
卫生专业人员需要询问个人的生活经验,并采用以个人为中心并个性化其护理的策略,同时还要整合协调的跨学科方法。理想的护理模式需要将医疗保健专业人员整合为包括帕金森病患者在内的更大护理团队的一部分,并促进与这些团队成员的沟通和计划。理想的护理模式需要整合更大的社区,并寻求与卫生专业人员的转诊和建立关系,组织,和非医疗提供者,将促进整体护理和倡导帕金森病患者。
UNASSIGNED: Obtain the perspectives of people with Parkinson\'s disease (PwPD) and their care partners (CPs) about their lived experiences with Parkinson\'s Disease (PD) to characterize a new model of care that meets their biopsychosocial and healthcare needs.
UNASSIGNED: This phenomenological study included semi-structured focus groups exploring PD diagnosis/care experiences and conceptualizations of an ideal model of care among PwPD and CPs. Data were analyzed via thematic analysis.
UNASSIGNED: Twenty-five individuals (PwPD, n = 18; CPs, n = 7) participated across four focus groups. Researchers developed four themes to describe participants\' lived experience with, barriers to, and needs for PD care. These themes characterize key hopes for care as: 1) person-centered, 2) coordinated, 3) provides access to education and information, and 4) builds on the benefits of community.
UNASSIGNED: Participants emphasized that, beyond clinical interactions and diagnosis-centered conversations, they wished for holistic healthcare that acknowledged the larger picture of their life with PD. An ideal model of care for PwPD should aim to be person centered, maximize collaboration and coordination across multiple disciplines, provide access to a wide range of information and resources, refer to community centers and support groups, and be designed with ease of navigation in mind.
Health professionals need to inquire about an individual’s lived experience and employ strategies that center the person and personalizes their care while also integrating a coordinated interdisciplinary approach.An ideal model of care needs to integrate healthcare professionals as part of a larger care team that includes the person with Parkinson’s disease, and facilitates communication and planning with those team membersAn ideal model of care needs to integrate the larger community and seek to refer and build relationships with health professionals, organizations, and non-medical providers that will facilitate holistic care and advocate for people with Parkinson’s disease.