New York City Hispanic Dementia Caregiver Research Program (NHiRP)

纽约市西班牙裔痴呆症护理人员研究计划 (NHiRP)

• 批准号: 8546116
• 负责人: ROBERT J LUCERO
• 金额: $ 53.32万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-06-01 至 2018-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8546116
• 关键词: Academic Medical Centers; Acculturation; Address; Alzheimer' s Disease; Area; Bioinformatics; Caregiver Burden; Caregivers; Characteristics; Clinical; Clinical Trials; Clinical Trials Design; Data Collection; Daughter; Dementia; Demographic Factors; Doctor of Philosophy; Effectiveness; Effectiveness of Interventions; Employment; Enrollment; Epidemiology; Evidence based intervention; Family; Family health status; Goals; Health; Health Information System; Hispanics; Homes for the Aged; Hybrids; Individual; Information Management; Intervention; Knowledge; Management Information Systems; Medical; Mental Health; New York; New York City; Not Hispanic or Latino; Observational Study; Online Systems; Outcome; Perception; Persons; Phase; Physicians; Population; Positioning Attribute; Public Health; Randomized; Registries; Relative (related person); Research; Research Infrastructure; Resources; School Nursing; Self Efficacy; Social support; Socioeconomic Status; Stress; Surgeon; Testing; Universities; Work; arm; care giving burden; caregiving; coping; depressive symptoms; design; evidence base; follow-up; low socioeconomic status; medical schools; member; minority health; multidisciplinary; novel; primary outcome; programs; public health relevance; randomized trial; response; sex; therapy design; treatment as usual

DESCRIPTION (provided by applicant): We submit this application in response to RFA-NR-13-001 "Addressing Needs of Informal Caregivers of Individuals with Alzheimer's Disease in the Context of Socio-demographic Factors (R01)". Hispanics are a rapidly growing population who suffer disproportionately from dementia, including Alzheimer's dementia, and related caregiving burdens compared to Non-Hispanic Whites. Little is known about the key characteristics and needs of these caregivers and how they influence long-term outcomes, the effectiveness of interventions, and the management of information critical to their health and that of persons with dementia. We propose to address these questions by creating the New-York-City Hispanic-dementia-caregiver Research Program (NHiRP), a multifaceted, novel research program designed to understand the particular needs of and tailor evidence-based clinical interventions to Hispanic caregivers of persons with dementia. We are uniquely positioned to respond to this RFA because our multidisciplinary team is conducting the Northern Manhattan Caregiver Intervention Project (NOCIP, clinicaltrials.gov ID NCT01306695), a randomized trial of 6-months duration testing the effectiveness of the New York University (NYU) Caregiver Intervention in 160 Hispanic relative caregivers of persons with dementia. The NHiRP will build on the resources of NOCIP and will be co- led by multiple PIs, Jose Luchsinger, MD, MPH, Roberto Lucero, RN, PhD and Mary Mittelman, DrPH, who will merge their complementary areas of expertise in epidemiology, clinical trials, minority health, mental health, medical bioinformatics, and caregiving research to achieve its 3 main goals: 1. Conduct a longitudinal follow-up of caregivers in NOCIP; 2.Create a registry of Hispanic caregivers in order to study the relation of socio- demographic factors with their caregiving-related needs; 3. Adapt and test a web-based personal health information management system intervention, working with registry members, tailored to their socio- demographic characteristics and needs. NHiRP will achieve its goals through the following specific aims: 1. To compare caregiver change in depressive symptoms and burden between the NOCIP study arms in a 5-year observational study phase 1 and 5 years after NOCIP enrollment; 2. To examine the interplay of key socio- demographic characteristics, caregiver burden, stress, and depressive symptoms in 300 members from our newly formed registry-Key characteristics include sex and family position, employment, acculturation, socioeconomic status (SES), social support, and coping; 3. To iteratively develop, refine, and test a web-based health information system with caregivers in the registry.

描述（由申请人提供）：我们提交此申请是为了响应 RFA-NR-13-001“在社会人口因素 (R01) 的背景下解决阿尔茨海默病患者的非正式护理人员的需求”。西班牙裔人口增长迅速，与非西班牙裔白人相比，他们患有痴呆症（包括阿尔茨海默氏痴呆症）和相关护理负担的比例过高。人们对这些护理人员的主要特征和需求以及他们如何影响长期结果、干预措施的有效性以及对其健康和痴呆症患者至关重要的信息管理知之甚少。我们建议通过创建纽约市西班牙裔痴呆症护理人员研究计划 (NHiRP) 来解决这些问题，这是一个多方面的新颖研究计划，旨在了解西班牙裔护理人员的特殊需求并为其量身定制循证临床干预措施患有痴呆症。我们拥有独特的优势来应对此 RFA，因为我们的多学科团队正在开展北曼哈顿护理人员干预项目（NOCIP，clinicaltrials.gov ID NCT01306695），这是一项为期 6 个月的随机试验，测试纽约大学 (NYU) 的有效性对 160 名痴呆症患者亲属照顾者的照顾者干预。 NHiRP 将建立在 NOCIP 的资源基础上，并由多位 PI 共同领导，其中包括 Jose Luchsinger（医学博士、公共卫生硕士）、Roberto Lucero（注册护士）、博士和 Mary Mittelman（公共卫生博士），他们将合并流行病学、临床等领域的互补专业知识领域。试验、少数民族健康、心理健康、医学生物信息学、 和护理研究，以实现其 3 个主要目标： 1. 对 NOCIP 中的护理人员进行纵向随访； 2. 创建西班牙裔护理人员登记册，以研究社会人口因素与其护理相关需求的关系； 3. 与登记成员合作，根据其社会人口特征和需求，调整和测试基于网络的个人健康信息管理系统干预措施。 NHiRP 将通过以下具体目标实现其目标： 1. 在为期 5 年的观察性研究第一阶段和 NOCIP 入组后 5 年内，比较 NOCIP 研究组之间的照顾者抑郁症状和负担的变化； 2. 检查我们新成立的登记册中 300 名成员的关键社会人口特征、照顾者负担、压力和抑郁症状之间的相互作用——关键特征包括性别和家庭地位、就业、文化适应、社会经济地位 (SES)、社会支持和应对措施； 3. 与登记中的护理人员一起迭代开发、完善和测试基于网络的健康信息系统。