Webnovela for Hispanic Dementia Family Caregivers

西班牙裔痴呆症家庭护理人员的网络小说

• 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
• 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' 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

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）：每69秒，美国某人患阿尔茨海默氏病（AD）和相关痴呆症，不仅会影响患者，而且影响家庭护理人员（约1500万），由于很难受到护理的压力（60％）和抑郁症（33％），医疗系统很大程度上受到医疗保健系统的培训和忽视。一个服务不足的群体是西班牙裔，是最大的少数民族（占美国人口的16％），也是增长最快的族裔，面临着几个健康差异和护理的障碍：阿尔茨海默氏症的发病率更高（例如，年龄在85岁及以上的高加索人的63％对30％的高加索人）；西班牙裔（45％）的抑郁症比其他群体更大；有限的医疗保险；语言能力问题；缺乏对痴呆症的知识；更需要帮助解决与痴呆症相关的困难，更少的文化适当干预措施等，除了西班牙语的材料外，还需要进行适当的干预措施，因为它们更有效，因为种族/民族身份会影响痴呆症和家庭护理的信念，从而影响了对痴呆症的作用，从而影响家庭对痴呆症护理的应对方式和对干预措施的应对方式。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并遵守医疗保健计划。我们提出了一项名为WebNovela（WN）的新干预措施，这是一款简短的在线电视西班牙语，专为西班牙裔护理人员而设计，以应对痴呆症护理，减轻护理负担，减轻压力和减轻抑郁症。与我们的Telenovela一起使用的DVD也将为非Internet用户创建。作为一部限量运行的“电视”小说Telenovela，是西班牙裔最受欢迎的电视流派之一，“ Telenovela”干预可能会增加主题保留和干预的依从性。 WebNovela也具有很高的潜力，因为互联网对西班牙裔人非常有吸引力，在线西班牙裔（2010年3000万），比美国总体人口的增长速度快两倍。基于电视的行为干预措施的研究是一个未开发的领域。 WN是第一个（如果不是痴呆症护理人员的第一个）。新颖的WN结合了：（a）心理教育和认知行为疗法（CBT），它们是减轻压力/抑郁症的非常有效的行为干预措施； （b）将基于证据的课程翻译和适应为文化敏感的西班牙裔短念珠菌； （c）创造性地利用Telenovela培养基参与和激励用户遵循干预措施。相关的临床优势是：鼓励照顾者参与，增强干预依从性，并能够更好地吸收技能；这应该提高护理人员的技能，以应对苛刻的护理任务，减轻护理负担，改善生活质量，减轻压力并帮助减轻抑郁症。通过与阿尔茨海默氏症协会，专家顾问委员会和护理人员合作，我们将在第1阶段开发和评估原型。我们将评估完整的WN（所有模块）在改善健康状况，减轻压力，减轻压力以及通过一项II期随机临床试验来减轻抑郁症的有效性。 公共卫生相关性：除了影响我们的1500万痴呆症家庭护理人员外，他们提供了170亿小时的无偿护理，并且与痴呆症护理的困难相关的压力/抑郁症的高风险（抑郁症率为33％）与阿尔茨海默氏症的困难相关（抑郁症率为33％），对西班牙裔的最大少数族裔（美国人人群的16％）的影响也越来越高，因为美国人（Edn Insp）的增长量增长，因为这一数字的增长是，这是我们的增长，因为美国的增长是，这是我们的增长，因为我们在美国的增长，这是我们的增长，因为美国的增长，是我们的，这是我们的增长，因为美国的少数人，我们的增长，是我们的，这是我们的高度越来越多。由于西班牙裔老年人口（65岁以上）预计所有种族/族裔群体中最快的人口将从约300万（2008）（2008）增加到17毫米（2050年），因此患者可能会以惊人的速度增长。 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痴呆，缺乏特定的工具和文化上适当的干预措施，以应对护理。第二阶段完成后，我们项目的预期结果如下：减少西班牙裔痴呆症护理人员压力/抑郁症，提高生活质量，减少护理负担并提高应对技巧；此外，我们期望以下潜在的间接结局（本研究未衡量）：延迟痴呆症患者的制度化，减少护理人员药物，从而降低经济成本。