PDF(Pubmed)
Abstract：
BACKGROUND: Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson\'s disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health-related quality of life (QoL) in PD.
OBJECTIVE: The aim of this study was to gain insights into the experience of living with the NMS of PD in real-time using participatory action methodology.
METHODS: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach.
RESULTS: Four interrelated themes were identified. Emotional well-being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self-esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood.
CONCLUSIONS: Findings demonstrated the far-reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person-centred and comprehensive approaches to care.
UNASSIGNED: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development.
OBJECTIVE: The aim of this study was to gain insights into the experience of living with the NMS of PD in real-time using participatory action methodology.
METHODS: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach.
RESULTS: Four interrelated themes were identified. Emotional well-being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self-esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood.
CONCLUSIONS: Findings demonstrated the far-reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person-centred and comprehensive approaches to care.
UNASSIGNED: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development.
摘要：
背景：非运动症状（NMS）是帕金森病（PD）患者经常经历的症状，通常被认为是他们最麻烦的症状。然而,在临床管理欠佳的情况下,我们仍然对这些问题知之甚少.这些未满足的需求是PD中与健康相关的生活质量（QoL）的重要决定因素。
目的：本研究的目的是使用参与式行动方法实时了解与PD的NMS一起生活的经验。
方法：使用photovoice方法，有14名PD的人拍摄了照片，以记录他们与PDNMS一起生活的经历。他们撰写了相应的书面叙述，以捕捉NMS对其日常活动和QoL的影响。总的来说,152张照片和相应的叙述进行了分析，使用主题分析与归纳法。
结果：确定了四个相互关联的主题。情绪幸福感和自我意识包含了适应与PD生活的过程。从事有价值的活动，采取积极的心态和利用应对策略被认为可以增强信心和自尊。社会支持和社会意识强调了支持关系和社交对帮助参与和避免孤立的重要性。社会参与的障碍包括NMS的不可预测性和不可见的NMS被忽视或误解。
结论：研究结果表明，PD的非运动方面对情绪，职业和社会层面。这些需求可以通过以人为本和全面的护理方法来解决。
■这项研究采用了参与式研究方法，允许参与者选择对他们重要的主题以及如何展示他们的结果。此外,与PD的人一起举行了一个小组研讨会，他们的家庭成员和医疗保健专业人员指导主题发展。
目的：本研究的目的是使用参与式行动方法实时了解与PD的NMS一起生活的经验。
方法：使用photovoice方法，有14名PD的人拍摄了照片，以记录他们与PDNMS一起生活的经历。他们撰写了相应的书面叙述，以捕捉NMS对其日常活动和QoL的影响。总的来说,152张照片和相应的叙述进行了分析，使用主题分析与归纳法。
结果：确定了四个相互关联的主题。情绪幸福感和自我意识包含了适应与PD生活的过程。从事有价值的活动，采取积极的心态和利用应对策略被认为可以增强信心和自尊。社会支持和社会意识强调了支持关系和社交对帮助参与和避免孤立的重要性。社会参与的障碍包括NMS的不可预测性和不可见的NMS被忽视或误解。
结论：研究结果表明，PD的非运动方面对情绪，职业和社会层面。这些需求可以通过以人为本和全面的护理方法来解决。
■这项研究采用了参与式研究方法，允许参与者选择对他们重要的主题以及如何展示他们的结果。此外,与PD的人一起举行了一个小组研讨会，他们的家庭成员和医疗保健专业人员指导主题发展。
