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Inherited Disease, Caregiving, and Social Networks

遗传性疾病、护理和社交网络

基本信息

批准号：
9359851
负责人：
Laura Koehly
金额：
$ 70.02万
依托单位：
NATIONAL HUMAN GENOME RESEARCH INSTITUTE
依托单位国家：
美国
项目类别：
财政年份：
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/9359851
关键词：
Activities of Daily Living Affect Alzheimer&apos 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 Intervention Interview Iowa Life Life Cycle Stages Literature Manuscripts Measures Mitochondrial Diseases Participant Patients Personal Satisfaction Pilot Projects Process Provider Publications Recruitment Activity Reporting Research Resources Role Sampling Social Network Social support Staging 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 primary caregiver programs social stressor

项目摘要

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 73 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 and two manuscripts that are currently under review. 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 63 individuals from 38 families involved in caregiving networks.

我们与爱荷华州大学的Sato Ashida博士合作，完成了一项试点研究，检查受阿尔茨海默病和相关痴呆症（ADRD）影响的家庭的网络。我们的目标是试验我们开发的评估工具，以揭示非正式的护理网络（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。来自30个家庭的73名家庭照顾者回答了关于他们的社交网络系统、对疾病和生活的认知和情感、幸福感和社会人口特征的访谈问题。此外，从43名正式护理提供者处获得了患者信息。从这个试点研究中，我们已经证明了多信息源方法的价值，以捕获的结构和组成的网络系统，周围的受ADRD影响。此外，我们已经表明，社会关系既是压力源和应对资源，对照顾者的幸福感有显着的影响。这项工作产生了一份出版物和两份手稿，目前正在审查中。我们已经扩大了我们的调查，以考虑如何根据生命阶段，疾病背景，以及每个照顾者和照顾者所面临的疾病阶段，这种体验可能会有所不同。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缺陷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辅助资源。参加这项研究的人完成了一项调查和采访;访问NIH临床中心的主要照顾者也被要求提供生物标志物评估的样本。在本报告所述期间，我们已开始为这项新研究招募护理人员和家庭成员。为此，我们已成功地使参与网络的38个家庭的63人同意。