Inherited Disease, Caregiving, and Social Networks

遗传性疾病、护理和社交网络

• 批准号: 9571152
• 负责人: Laura Koehly
• 金额: $ 73.52万
• 依托单位: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/9571152
• 关键词: Activities of Daily Living; Affect; Alzheimer' s Disease; Assessment tool; Belief; Biological Markers; Caregivers; Caring; Characteristics; Clinical; Cognition; Cognitive; Collaborations; Consent; Dementia; Disease; Emotional; Emotions; Enrollment; Family; Family Caregiver; Family Characteristics; Family health status; Family member; Goals; Health; Inborn Errors of Metabolism; Individual; Individual Differences; Inherited; International; Intervention; Interview; Iowa; Life; Life Cycle Stages; Literature; Manuscripts; Measures; Mitochondrial Diseases; Paper; Participant; Pathway Analysis; Patients; Pilot Projects; Process; Provider; Publications; Recruitment Activity; Reporting; Research; Resources; Role; Sampling; Social Characteristics; Social Network; Social support; Stress; Structure; Surveys; System; United States National Institutes of Health; Universities; Visit; Work; care giving burden; care recipients; caregiving; cohort; coping; dementia care; expectation; experience; family caregiving; improved; indexing; informal caregiving; informant; meetings; primary caregiver; programs; social; stressor; support network

In collaboration with Dr. Sato Ashida at the University of Iowa, we completed a pilot study examining caregiving networks of families affected by Alzheimers disease and related dementia (ADRD). The goal was to pilot an assessment tool we developed to uncover the Caregiving Roles and Expectations within informal caregiving Networks (or CaRENet). Index participants were recruited from four dementia care facilities and snowball sampling was used to recruit family members. A total of 72 family caregivers from 30 families answered interview questions regarding their social networks systems, cognitions and emotions about the disease and caregiving, well-being, and socio-demographic characteristics. Additionally, patient information was obtained from 43 formal care providers. From this pilot study, we have shown the value of a multi-informant approach to capture the structure and composition of the caregiving network system that surrounds those affected by ADRD. Further, we have shown that social relationships are both stressors and coping resources which have significant influence on caregiver well-being. This work has resulted in one publication, one paper in press, and one manuscript that is currently under review. As well, a paper describing differences in family conversation content was presented at the annual meeting of the International Network of Social Network Analysis this year. We have expanded our inquiry to consider how such caregiving experiences might differ according to the life stage, disease context, and disease stage faced by each caregiver and care recipient. As such, we are partnering with colleagues who have established patient cohorts in the NIH Clinical Center, including the Undiagnosed Diseases Program and patients with inborn errors of metabolism and mitochondrial disease. In each, patients require significant caregiving resources related to activities of daily living. Those enrolled in this research complete a survey and interview; primary caregivers who visit the NIH Clinical Center are also asked to provide samples for biomarker assessment. During the current reporting period, we have begun recruitment of caregivers and family members for this new research. To that end, we have successfully consented 210 individuals from 108 families involved in caregiving networks.

与爱荷华大学的佐藤阿希达博士合作，我们完成了一项初步研究，考察了受阿尔茨海默病和相关痴呆症(ADRD)影响的家庭的照料网络。我们的目标是试用我们开发的评估工具，以揭示非正式护理网络(或CareNet)中的护理角色和期望。指数参与者从四个痴呆症护理机构招募，并使用滚雪球抽样招募家庭成员。共有来自30个家庭的72名家庭照顾者回答了关于他们的社会网络系统、对疾病的认知和情感、照顾、幸福感和社会人口特征的采访问题。此外，患者信息从43个正式护理提供者处获得。 从这项初步研究中，我们已经展示了多信息者方法的价值，以捕捉围绕着那些受ADRD影响的人的照护网络系统的结构和组成。此外，我们还发现，社会关系既是压力源，也是应对资源，对照顾者的幸福感有重大影响。这项工作的结果是出版了一份出版物，出版了一篇论文，目前正在审查一份手稿。此外，一篇描述家庭对话内容差异的论文也在今年的国际社交网络分析年会上发表。 我们扩大了我们的调查范围，以考虑这样的护理经历如何根据每个照顾者和接受者所面临的生命阶段、疾病背景和疾病阶段而不同。因此，我们正在与在NIH临床中心建立患者队列的同事合作，包括未诊断疾病计划和患有先天性代谢错误和线粒体疾病的患者。在每一种情况下，患者都需要与日常生活活动相关的大量护理资源。那些参与这项研究的人完成了调查和访谈；访问NIH临床中心的主要照顾者也被要求提供样本进行生物标记物评估。在本报告所述期间，我们已开始为这项新研究招募照顾者和家庭成员。为此，我们已经成功地同意了来自108个家庭的210名个人参与照料网络。