Emergence and evolution of social self-management of Parkinsons disease

帕金森病社会自我管理的出现和演变

• 批准号: 9262764
• 负责人: LINDA S TICKLE-DEGNEN
• 金额: $ 44.55万
• 依托单位: TUFTS UNIVERSITY MEDFORD
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-04-01 至 2019-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9262764
• 关键词: Address; Adult; Affect; Age; Anniversary; Caring; Chronic; Chronic Disease; Clinical; Communication; Communities; Dependency; Deterioration; Development; Disease; Disease Management; Elderly; Emotional; Emotions; Ensure; Event; Evidence based intervention; Evolution; Face; Facial paralysis; Family; Feeling; Friends; Gender; Goals; Health; Health Personnel; Home environment; Impairment; Individual; Interpersonal Relations; Intervention; Life; Limb structure; Literature; Loneliness; Longitudinal Studies; Masks; Measurement; Modeling; Motor; Muscle; Neurodegenerative Disorders; Neurological Nursing; Neurological rehabilitation; Outcome; Parkinson Disease; Participant; Patients; Pattern; Persons; Population; Prevalence; Psyche structure; Quality of life; Reporting; Research; Rewards; Risk; Risk Factors; Role; Sample Size; Sampling; Self Care; Self Management; Social Functioning; Social Network; Social Values; Social support; Solid; Stigmatization; Stroke; Study models; Subgroup; Testing; Time; Woman; Work; age related; care giving burden; caregiving; design; disability; evidence base; experience; hearing impairment; help-seeking behavior; impression; improved; innovation; interest; longitudinal design; men; middle age; novel; physical symptom; prevent; public health relevance; social; social engagement; social integration; therapy development

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.

描述（由申请人提供）：帕金森病 (PD) 是最常见的与年龄相关的神经退行性疾病之一，影响面部、声音和躯干肌肉。当这种逐渐衰退发生时，表达能力的面具就会下降，限制了人与他人交流情感和意图的能力，这可能会给人冷漠、不合群或冷漠的印象。因此，帕金森病患者的寿命更长，在家中居住的时间更长，富有表现力的个人提供的社会和情感奖励并不会减轻照顾的负担。虽然文献中已经讨论了这种残疾，但人们对患有帕金森病等慢性身体疾病的成年人如何管理他们的社交生活以及无法情绪表达如何影响社交关系知之甚少。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，这项工作有可能显着推进帕金森病研究和循证神经护理和康复。我们将检验以下中心假设：PD 表达能力预测 PD 社会自我管理模式和生活质量结果的系统性变化。这项为期三年的纵向研究的具体目标是：120 名帕金森病患者和最多 120 名护理伙伴参与其中： 1) 描述帕金森病患者在三年内的社会自我管理轨迹； 2）估计非语言表达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关系的调节作用。在三年的项目期间，我们将对帕金森病患者和护理伙伴各进行14次评估，以考察社会参与和社会活动管理等因素；社交网络；以及社会舒适度、总体健康和福祉。将对总样本以及有意义的人口统计和临床亚组进行描述性分析。这项研究旨在有足够的能力来检测随时间的变化并检测性别差异。我们的贡献意义重大，因为它将提供证据来指导旨在支持帕金森病患者融入社会的干预措施的制定，从而改善整体健康状况。拟议的工作具有创新性，因为据我们所知，它是第一个关注社会自我管理的新颖结构的工作，并且以反映帕金森病日常生活经验的方式进行。此外，我们超越描述性证据，严格检验有关已知导致社会耻辱、表达能力和性别的因素的假设。

项目成果

The self-management balancing act of spousal care partners in the case of Parkinson's disease.

• DOI: 10.1080/09638288.2017.1413427
• 发表时间: 2019-04
• 期刊: Disability and rehabilitation
• 影响因子: 2.2
• 作者: Berger S;Chen T;Eldridge J;Thomas CA;Habermann B;Tickle-Degnen L
• 通讯作者: Tickle-Degnen L

Profile of social self-management practices in daily life with Parkinson's disease is associated with symptom severity and health quality of life.

• DOI: 10.1080/09638288.2020.1741035
• 发表时间: 2021-11
• 期刊: Disability and rehabilitation
• 影响因子: 2.2
• 作者: Tickle-Degnen L;Stevenson MT;Gunnery SD;Saint-Hilaire M;Thomas CA;Sprague Martinez L;Habermann B;Naumova EN
• 通讯作者: Naumova EN

Using a Macro Social Work Strategy to Improve Outreach in Parkinson's Disease Research.

使用宏观社会工作策略来改善帕金森病研究的推广。

• DOI: 10.1093/sw/swy026
• 发表时间: 2018
• 期刊: Social work
• 影响因子: 2.9
• 作者: SpragueMartinez,Linda;Thomas,CathiA;Saint-Hilaire,Marie;McLaren,Jaye;Young,Jaime;Habermann,Barbara;Tickle-Degnen,Linda
• 通讯作者: Tickle-Degnen,Linda