Emergence and evolution of social self-management of Parkinsons disease

描述(申请人提供)：帕金森氏病(PD)，最常见的与年龄相关的神经退行性疾病之一，影响面部、声带和躯干肌肉。当这种渐进性下降发生时，一个富有表现力的面具就会下降，限制了这个人与他人沟通情绪和意图的能力，这可能会给人一种冷漠、冷漠或冷漠的印象。因此，帕金森氏症患者的寿命更长，在家中居住的时间更长，照顾的负担不会因为一个善于表达的个人提供的社会和情感回报而减轻。虽然这种残疾在文献中已经被讨论过，但对于患有慢性身体疾病(如帕金森病)的成年人如何管理他们的社交生活，以及无法在情感上表达如何影响社会关系，我们知之甚少。由于社交网络已被证明对慢性病患者的整体福祉至关重要，因此迫切需要研究表达能力如何影响生活轨迹和整体健康。该项目的总体目标是了解帕金森病患者社会自我管理轨迹的出现和演变，这项工作有可能显著推进帕金森病研究和循证神经护理和康复。我们将检验帕金森病表达能力预测帕金森病社会自我管理模式和生活质量结果的系统性变化这一中心假设。这项针对120名帕金森病患者和最多120名护理伙伴的为期三年的纵向研究的具体目的是：1)表征帕金森病患者三年期间的社会自我管理轨迹；2)估计表达的非语言能力对社会自我管理轨迹的预测程度；3)确定性别对表达能力与社会自我管理变化之间的关系的调节作用。在为期三年的计划期间，我们会分别对帕金森病患者和护理伙伴进行14次评估，以考察社交活动的社会参与和管理、社交网络以及社会舒适度、一般健康和福祉等因素。描述性分析将对总样本以及有意义的人口统计学和临床亚组进行。这项研究的目的是要有足够的能力来发现随着时间的推移而发生的变化，并发现性别差异。我们的贡献意义重大，因为它将提供证据，指导旨在支持帕金森病患者融入社会的干预措施的制定，从而改善整体健康。拟议的工作具有创新性，因为据我们所知，它是第一次关注社会自我管理的新结构，并以反映PD日常生活经验的方式这样做。此外，我们超越了描述性证据，严格测试关于已知导致社会污名化、表达能力和性别的因素的假设。

DESCRIPTION (provided by applicant): Parkinson's disease (PD), one of the most common age-related neurodegenerative disorders, affects facial, vocal and trunk muscles. As this progressive decline occurs, an expressive mask descends, limiting the person's ability to communicate emotions and intentions to others, which may give the impression that the person is cold, asocial or apathetic. Thus, people with PD are living longer and residing in their homes longer, the burden of care-giving is unmitigated by the social and emotional rewards provided by an expressive individual. While this disability has been discussed in the literature, relatively litle is known about how adults living with a chronic physical disease such as PD manage their social lives and how an inability to be emotionally expressive can affect social connections. Because social networks have been shown to be crucial to the overall well-being of people living with chronic diseases, research on how expressive capacity affects life trajectories and overall health is critically needed. The overall objective of this project is to understand the emergence and evolution of social self-management trajectories of people living with PD, and this work has the potential to significantly advance PD research and evidence-based neurological nursing and rehabilitation. We will test the central hypothesis that PD expressive capacity predicts systematic change in the pattern of social self-management of PD and quality of life outcomes. The Specific Aims of this three-year longitudinal study of 120 patients with PD and a maximum of 120 care partners are: 1) Characterize social self-management trajectories of individuals with PD over a three-year period; 2) Estimate the degree to which expressive nonverbal capacity predicts the social self-management trajectory; and 3) Determine the moderating effect of gender on the association between expressive capacity and change in social self-management. Over the three-year project period, we will assess patients with PD and a care partner 14 times each to examine such factors as social participation and management of social activities; social network; and social comfort, general health and well-being. Descriptive analyses will be performed on the total sample and on meaningful demographic and clinical subgroups. This study is designed to have sufficient power to detect changes over time and to detect differences in gender. Our contribution is significant because it will provide evidence to guide the development of interventions aimed at supporting social integration of people living with PD, thus leading to improved overall health. The proposed work is innovative because, to the best of our knowledge, it is the first to focus on the novel construct of social self-management and does so in a manner that reflects the daily lived experience of PD. Further, we go beyond descriptive evidence to rigorously test hypotheses regarding factors known to contribute to social stigmatization, expressive capacity and gender.