Social Connectedness and Communication in Parents with Huntington''s Disease and their Offspring: Associations with Psychological and Disease Progression

患有亨廷顿病的父母及其后代的社会联系和沟通：与心理和疾病进展的关联

• 批准号: 10381163
• 负责人: Daniel Oliver Claassen
• 金额: $ 65.83万
• 依托单位: VANDERBILT UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-03-05 至 2027-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10381163
• 关键词: Acute; Address; Adolescent; Adolescent and Young Adult; Adult; Adult Children; Adverse effects; Age; Anxiety; Behavior Therapy; Behavioral; Cardiovascular Diseases; Caregiver Burden; Child; Child Rearing; Chronic; Cognitive; Communication; Conflict (Psychology); Data; Development; Diabetes Mellitus; Diagnosis; Disease; Disease Progression; Emotional; Empirical Research; Face; Family; Future; Genes; Goals; Health; Hereditary Disease; Human; Huntington Disease; Impairment; Link; Loneliness; Malignant Neoplasms; Mediating; Mediator of activation protein; Mental Health; Methods; Neurodegenerative Disorders; Obesity; Outcome; Parent-Child Relations; Parents; Patients; Problem Solving; Problem behavior; Psychosocial Factor; Qualitative Research; Quality of life; Research; Risk; Sampling; Severity of illness; Short-Term Memory; Social Functioning; Social Network; Stress; Structure; Symptoms; Testing; Vulnerable Populations; Work; burden of illness; cognitive function; cognitive reappraisal; community engagement; disorder risk; emotion regulation; emotional functioning; executive function; experience; follow-up; health related quality of life; member; motor impairment; negative affect; novel; offspring; physical conditioning; psychiatric symptom; psychologic; response; social; social factors; social relationships; social stigma; therapy development; young adult

PROJECT SUMMARY Extensive research has established clear, strong associations between human social relationships and health and illness. A lack of social connection, including isolation, loneliness, and conflict, is related to the onset and progression of cardiovascular disease, some forms of cancer, diabetes, and obesity among other acute and chronic health conditions. Neurodegenerative diseases have been relatively overlooked in this research despite having adverse effects on patients’ functioning that may disrupt a range of social relationships. Huntington’s disease (HD) is an exemplar neurodegenerative disease that it is a fully penetrant, autosomal dominant condition characterized by progressive cognitive, behavioral, emotional, and motor impairments that have the potential to negatively affect family functioning and community engagement. HD is likely to place a particular burden on the parent-child relationship given that the disease is most often diagnosed in middle adulthood, a period that includes the primary years for child rearing and parenting, and offspring of parents with HD have a 50% risk of inheriting the disease themselves. As children watch their parents’ disease progress, they observe their own potential future and may be tasked with significant caretaking demands. Notably, qualitative research highlights significant impairments to social relationships experienced by both HD parents and their offspring within and outside of the family. In response to PAR-21-145, the proposed study will address the gap in empirical research by documenting levels of the structure, function and quality of social connectedness in HD families and examine potential mechanistic targets for behavioral intervention. Our preliminary data emphasize the negative impact of HD on social connectedness, including the quality of communication, of parents with HD and their offspring. Further, our previous research and preliminary data suggest two potential mechanisms linking social relationships and psychological and physical health outcomes for parents with HD and their offspring: executive function (EF; e.g., working memory) and emotion regulation (ER) in response to stress (e.g., cognitive reappraisal, problem solving). We will examine the associations between social connectedness and quality of life and impairment in cognitive and emotional function in a sample of 200 patients with HD and their adolescent and young adult offspring (n = 200). A sample of parents without neurodegenerative disease (n = 200) and their adolescent and young adult offspring (n = 200) will serve as a comparison sample.

项目摘要 广泛的研究已经建立了人类社会关系与健康之间的明确，密切的联系 和疾病。缺乏社会联系，包括孤立，孤独和冲突，与发作有关 心血管疾病的进展，某些形式的癌症，糖尿病和肥胖症以及其他急性和肥胖症的进展 慢性健康状况。在这项研究中，神经退行性疾病已经相对忽略 尽管对患者的功能产生不利影响，但可能会破坏一系列社会关系。 亨廷顿氏病（HD）是一种典范神经退行性疾病，它是一种完全渗透的常染色体 占主导地位的疾病以进行性认知，行为，情感和运动障碍为特征 有可能对家庭功能和社区参与产生负面影响。高清可能会放置一个 鉴于该疾病最常在中间诊断出这种疾病 成年期，包括主要的抚养和育儿的初年以及父母的后代 HD具有遗传疾病本身的50％风险。孩子们看父母的病 进步，他们观察自己的潜在未来，并可能承担着巨大的看法要求。 值得注意的是，定性研究强调了两种高清经历的社会关系的重大损害 父母及其后代在家庭内外。响应PAR-21-145，拟议的研究将 通过记录社会结构，功能和质量的水平，以解决实证研究的差距 高清家族的连接性和检查行为干预的潜在机械目标。我们的 初步数据强调高清对社会联系的负面影响，包括 与高清父母及其后代的沟通。此外，我们以前的研究和初步数据 提出了将社会关系以及心理和身体健康成果联系起来的两个潜在机制 对于HD及其后代的父母：执行功能（EF；例如，工作记忆）和情绪调节 （ER）应对压力（例如，认知重新评估，解决问题）。我们将检查协会 在社会联系与生活质量之间以及在认知和情感功能中的障碍之间 样本的200例HD患者及其青少年和年轻的后代（n = 200）。父母样本 没有神经退行性疾病（n = 200）及其青少年和年轻的后代（n = 200） 用作比较样本。