Emergence and evolution of social self-management of Parkinsons disease

描述（由申请人提供）：帕金森病（PD）是最常见的年龄相关性神经退行性疾病之一，影响面部、发声和躯干肌肉。随着这种逐渐衰退的发生，表达面具下降，限制了人与他人沟通情感和意图的能力，这可能会给人留下冷漠，不合群或冷漠的印象。因此，PD患者的寿命更长，居住在家中的时间更长，护理的负担并没有因表达个体提供的社会和情感奖励而减轻。虽然这种残疾已经在文献中讨论过，但对于患有慢性身体疾病（如PD）的成年人如何管理他们的社会生活以及无法表达情感如何影响社会联系，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健康至关重要，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PD患者社会自我管理轨迹的出现和演变，这项工作有可能显着推进PD研究和循证神经护理和康复。我们将测试的核心假设，PD表达能力预测PD的社会自我管理模式和生活质量的结果系统的变化。这项为期三年的纵向研究的120名PD患者和最多120名护理伙伴的具体目的是：1）描述PD患者在三年内的社会自我管理轨迹; 2）估计表达非语言能力预测社会自我管理轨迹的程度;（3）确定性别对表达能力与社会自我管理变化之间关系的调节作用。在为期三年的计划期间，我们会评估帕金森病患者和护理伙伴各14次，以研究社会参与和社交活动管理、社交网络、社交舒适度、一般健康和福祉等因素。将对总样本和有意义的人口统计学和临床亚组进行描述性分析。本研究旨在有足够的把握度来检测随时间的变化，并检测性别差异。我们的贡献是重要的，因为它将提供证据，以指导制定旨在支持PD患者社会融合的干预措施，从而改善整体健康状况。拟议的工作是创新的，因为据我们所知，它是第一个专注于社会自我管理的新结构，并以反映PD的日常生活经验的方式这样做。此外，我们超越了描述性证据，严格测试有关因素的假设已知有助于社会污名化，表达能力和性别。

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.