Webnovela for Hispanic Dementia Family Caregivers

西班牙裔痴呆症家庭护理人员的网络小说

基本信息

批准号：
8315239
负责人：
BRUNO KAJIYAMA
金额：
$ 38.14万
依托单位：
PHOTOZIG, INC.
依托单位国家：
美国
项目类别：
财政年份：
2012
资助国家：
美国
起止时间：
2012-04-01 至 2013-03-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8315239
关键词：
Accounting Address Adherence Affect Age Alzheimer&apos s Disease Assimilations Behavior Therapy Belief Caregiver Burden Caregivers Caring Caucasians Caucasoid Race Clinical Cognitive Therapy Coping Skills Data Data Analyses Dementia Distress Drama Educational Curriculum Educational Status Effectiveness Elderly Ethnic group Face Family Family Caregiver Focus Groups Fostering Healthcare Healthcare Systems Hispanics Hour Household Incidence Income Institutionalization Insurance Internet Intervention Knowledge Language Learning Left Measures Medical Mental Depression Methods Minority Minority Groups Outcome Participant Patients Personal Satisfaction Pharmaceutical Preparations Phase Population Population Growth Poverty Prevalence Publishing Quality of life Randomized Randomized Clinical Trials Reaction Recruitment Activity Research Resources Role Running Side Stress Television Testing Time Translations base care burden caregiving coping design economic cost evidence base health disparity high risk improved innovation neglect novel programs prototype psychoeducation racial and ethnic skills tool usability web site

项目摘要

DESCRIPTION (provided by applicant): Every 69 seconds someone in US develops Alzheimer's Disease (AD) and related dementia, affecting not only patients, but family caregivers (~15 million), largely untrained and neglected by the healthcare system, with high incidence of stress (60 percent) and depression (33 percent) due to difficulties of caregiving. A large underserved group is Hispanic, the largest minority (16 percent of US population) and the fastest growing ethnic group, facing several health disparities and barriers to care: higher incidence of Alzheimer's (e.g. 63 percent versus 30 percent for Caucasians age 85 years and over); greater depression in Hispanics (45 percent) than in other groups; limited medical insurance; language proficiency issues; lack of knowledge about dementia; greater need for help to deal with difficulties related to dementia, fewer culturally appropriate interventions, etc Besides materials in Spanish language, culturally appropriate interventions are also needed, because they are more effective, as racial/ethnic identity influences beliefs about dementia and family care giving role, affecting how families cope with dementia care giving and respond to interventions. Another major challenge for effective Hispanic interventions is the retention of participants and adherence to healthcare programs. We propose a new intervention called Webnovela (WN), a short online Telenovela in Spanish, specifically designed for Hispanic caregivers on how to cope with dementia care giving, reduce burden of care, decrease stress, and alleviate depression. A DVD with our Telenovela will also be created for non-Internet users. As Telenovela, a limited-run "television novel" drama, is one of the most popular television genres for Hispanics, a "Telenovela" intervention is likely to increase the subject retention and intervention adherence. A Webnovela also has a high potential, since Internet is very appealing to Hispanics, with a high number of online Hispanics (30 million in 2010), and growing two times faster than overall US online population. Research on Telenovela-based behavioral interventions is an unexplored field. WN is one of the first (if not the first one for dementia caregivers). The novel WN incorporates: (a) psychoeducation and Cognitive Behavioral Therapy (CBT), which are very effective behavioral interventions to reduce stress/depression; (b) translation and adaptation of evidence-based curriculums into a culturally sensitive short Telenovela for Hispanics; and (c) creative use of Telenovela medium to engage and motivate users to follow the intervention. Related clinical advantages are: encourage caregiver participation, enhance intervention adherence, and enable better assimilation of skills; which should enhance caregivers' skills to deal with demanding tasks of care giving, reduce burden of care, improve quality of life, decrease stress, and help to alleviate depression. In partnership with the Alzheimer's Association, expert Advisory Board and caregivers, we will develop and evaluate a prototype in Phase I. We will assess the effectiveness of the complete WN (with all modules) in improving well-being, decreasing stress, and alleviating depression with a randomized clinical trial in Phase II. PUBLIC HEALTH RELEVANCE: Besides affecting 15 million dementia family caregivers in US, who provide 17 billion hours of unpaid care and are at high risk for stress/depression related to the difficulties of dementia care giving (depression rate of 33 percent), Alzheimer's has also a growing impact on Hispanics, the largest minority (16 percent of US population) and the fastest growing ethnic group in US, which is of increasing importance, because the number of Hispanic AD patients is likely to grow at an alarming rate, as the elderly Hispanic population (age 65+) is projected to grow the fastest of all racial/ethnic groups, from about 3 million (2008) to 17 millio (2050). Hispanics also face several health disparities and barriers to care, such as higher incidence of Alzheimer's (e.g. 63 percent for Hispanics vs. 30 percent for Caucasians age 85+), greater depression (45 percent incidence rate among Hispanic caregivers), limited medical insurance, lower educational level, lower household income, higher poverty rate, language proficiency issues, lack of knowledge about dementia, higher need for help to deal with difficulties related to dementia, and lack of specific tools and culturally appropriate interventios to cope with care giving. After Phase II is completed, the expected outcomes of our project are the following: reduce Hispanic dementia caregiver stress/depression, enhance quality of life, decrease burden of care, and increase coping skills; in addition, we expect the following potential indirect outcomes (not measured by this study): delay institutionalization of dementia patients, reduce caregiver medication, and thereby decrease economic costs.

描述（由申请人提供）：美国每 69 秒就有一人患上阿尔茨海默氏病 (AD) 和相关痴呆症，不仅影响患者，还影响家庭护理人员（约 1500 万），他们大多未经培训且被医疗保健系统忽视，其发病率很高由于照顾困难而产生压力（60%）和抑郁（33%）。西班牙裔是一个得不到充分服务的群体，他们是最大的少数族裔（占美国人口的 16%），也是增长最快的族裔群体，面临着一些健康差异和护理障碍：阿尔茨海默病的发病率较高（例如，85 岁的白种人为 63%，而 85 岁的白种人为 30%）。超过）;西班牙裔美国人（45%）的抑郁程度高于其他群体；有限的医疗保险；语言能力问题；缺乏有关痴呆症的知识；更需要帮助来处理与痴呆症相关的困难，较少的文化上适当的干预措施等除了西班牙语材料外，还需要文化上适当的干预措施，因为它们更有效，因为种族/民族身份影响对痴呆症和家庭护理的信念作用，影响家庭如何应对痴呆症护理和对干预措施的反应。有效的西班牙裔干预措施的另一个主要挑战是保留参与者和遵守医疗保健计划。我们提出了一种名为 Webnovela (WN) 的新干预措施，这是一个简短的西班牙语在线电视剧，专门为西班牙裔护理人员设计，介绍如何应对痴呆症护理、减轻护理负担、减轻压力和缓解抑郁。我们还将为非互联网用户制作包含 Telenovela 的 DVD。由于电视小说（Telenovela）是一种限播的“电视小说”剧，是西班牙裔最受欢迎的电视类型之一，因此“电视小说”干预可能会增加主题保留和干预依从性。网络小说也具有很高的潜力，因为互联网对拉美裔人非常有吸引力，西班牙裔在线人数众多（2010 年为 3000 万），而且增长速度是美国总体在线人口的两倍。基于电视剧的行为干预研究是一个尚未探索的领域。 WN 是第一个（如果不是痴呆症护理人员的第一个）。新颖的 WN 包括： (a) 心理教育和认知行为疗法 (CBT)，它们是减轻压力/抑郁的非常有效的行为干预措施； (b) 将循证课程翻译并改编成针对西班牙裔的文化敏感的短篇电视剧； (c) 创造性地利用 Telenovela 媒体来吸引和激励用户关注干预措施。相关的临床优势包括：鼓励护理人员参与，增强干预依从性，并更好地吸收技能；这应该提高护理人员处理繁重护理任务的技能，减轻护理负担，提高生活质量，减轻压力，并有助于缓解抑郁症。我们将与阿尔茨海默病协会、专家咨询委员会和护理人员合作，在第一阶段开发和评估原型。我们将评估完整的 WN（包含所有模块）在改善福祉、减轻压力和缓解抑郁方面的有效性II 期随机临床试验。公共健康相关性：除了影响美国 1500 万痴呆症家庭护理人员（他们提供了 170 亿小时的无偿护理，并且由于痴呆症护理困难而面临压力/抑郁的高风险（抑郁率为 33%））之外，阿尔茨海默病还对拉美裔的影响越来越大，拉美裔是美国最大的少数族裔（占美国人口的 16%），也是美国增长最快的族裔群体，这一点变得越来越重要，因为拉美裔 AD 患者的数量西班牙裔老年人口（65 岁以上）预计将在所有种族/族裔群体中增长最快，从约 300 万（2008 年）增至 1700 万（2050 年）。西班牙裔还面临一些健康差异和护理障碍，例如阿尔茨海默病的发病率较高（例如西班牙裔为 63%，而 85 岁以上的白种人为 30%）、抑郁症更严重（西班牙裔护理人员的发病率为 45%）、有限的医疗保险、受教育程度较低、家庭收入较低、贫困率较高、语言能力问题、缺乏有关痴呆症的知识、更需要帮助处理与痴呆症有关的困难，以及缺乏应对护理的具体工具和文化上适当的干预措施。第二阶段完成后，我们项目的预期成果如下：减少西班牙裔痴呆症护理人员的压力/抑郁，提高生活质量，减轻护理负担，提高应对技能；此外，我们预计会产生以下潜在的间接结果（本研究未测量）：延迟痴呆患者的住院治疗，减少护理人员的药物治疗，从而降低经济成本。