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

项目总结 广泛的研究已经在人类社会关系和健康之间建立了明确而强烈的联系 和疾病。缺乏社会联系，包括孤立、孤独和冲突，与发病和 心血管疾病的进展，某些形式的癌症，糖尿病和肥胖，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了 尽管对患者的功能有不利影响，可能会扰乱一系列社会关系。 亨廷顿病(HD)是一种典型的神经退行性疾病，它是一种完全穿透的常染色体 以渐进性认知、行为、情绪和运动障碍为特征的显性状态 有可能对家庭功能和社区参与产生负面影响。房屋署可能会安排一项 考虑到这种疾病最常在中年确诊，这对亲子关系造成了特别的负担 成年期，包括育儿和育儿的初级阶段以及父母的后代 患有HD的人本身有50%的风险遗传这种疾病。当孩子们看着他们父母的疾病 在进步的过程中，他们观察到自己潜在的未来，并可能面临重大的照顾需求。 值得注意的是，定性研究强调了两人在社会关系方面的严重损害 父母及其子女在家庭内外。根据PAR-21-145，拟议的研究将 通过记录社会结构、功能和质量的水平来解决实证研究中的差距 HD家庭的连接性，并检查行为干预的潜在机制目标。我们的 初步数据强调HD对社会连通性的负面影响，包括 父母与HD及其子女之间的沟通。此外，我们之前的研究和初步数据 提出两种潜在的机制，将社会关系与心理和身体健康结果联系起来 对于患有HD的父母及其子女：执行功能(EF；例如，工作记忆)和情绪调节 (呃)应对压力(例如，认知重新评估、解决问题)。我们将研究这些关联 社会联系和生活质量与认知和情感功能损害之间的关系 样本200例HD患者及其青春期和青春期子女(n=200)。一份父母的样本 无神经退行性疾病(n=200)及其青春期和年轻成年后代(n=200)将 作为对比样本。

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.