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 广泛的研究已经在人类社会关系和健康之间建立了明确的，强有力的联系 和疾病缺乏社会联系，包括孤立，孤独和冲突，与发病有关， 心血管疾病、某些形式的癌症、糖尿病和肥胖症的进展，以及其他急性和 慢性健康状况。神经退行性疾病在这项研究中相对被忽视 尽管对患者的功能有不利影响，可能会破坏一系列社会关系。 亨廷顿病（Huntington 'sdisease，HD）是一种典型的神经退行性疾病，是一种完全渗透性的常染色体显性遗传性疾病，其发病机制尚不清楚。 以进行性认知、行为、情感和运动障碍为特征的显性疾病， 有可能对家庭功能和社区参与产生负面影响。HD可能会放置一个 由于这种疾病最常在中年被诊断出来， 成年期，包括养育子女的最初几年，以及父母的后代 患有HD的人有50%的风险自己遗传这种疾病。当孩子们看着他们父母的疾病 在取得进展的同时，他们观察到自己的潜在未来，并可能承担重大的照顾需求。 值得注意的是，定性研究突出了显着损害社会关系所经历的两个HD 父母和他们的子女在家庭内外。根据PAR-21-145，拟议研究将 通过记录社会发展的结构、功能和质量水平，解决实证研究中的差距 HD家庭的连通性，并检查行为干预的潜在机制目标。我们 初步数据强调了HD对社会联系的负面影响，包括 父母与子女的沟通。此外，我们之前的研究和初步数据 提出了两种潜在的机制，将社会关系与心理和身体健康结果联系起来 对于患有HD的父母及其后代：执行功能（EF;例如，工作记忆）和情绪调节 (ER)响应于压力（例如，认知再评价、问题解决）。我们将研究 社会联系和生活质量与认知和情感功能受损之间的关系， 200名HD患者及其青少年和年轻成年后代的样本（n = 200）。父母的样本 没有神经退行性疾病的人（n = 200），他们的青少年和年轻成年后代（n = 200）将 作为比较样本。