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，美国就有一人患上阿尔茨海默病（AD）和相关痴呆症，不仅影响患者，而且影响家庭护理人员（约1500万），他们大部分未经培训，被医疗保健系统忽视，由于生活困难，压力（60%）和抑郁症（33%）的发病率很高。西班牙裔是最大的少数族裔，（占美国人口的16%）和增长最快的种族群体，面临着几个健康差距和护理障碍：阿尔茨海默氏症的发病率较高（例如，85岁及以上的白人为63%和30%）;西班牙裔的抑郁症更严重（45%）比其他群体;有限的医疗保险;语言能力问题;缺乏对痴呆症的了解;需要更多的帮助来处理与痴呆症有关的困难，文化上适当的干预措施较少，除西班牙语材料外，还需要文化上适当的干预措施，因为它们更有效，因为种族/民族身份会影响对痴呆症和家庭护理角色的信念，影响家庭如何应对痴呆症护理和应对干预措施。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坚持医疗保健计划。我们提出了一个新的干预称为Webnovela（WN），一个简短的西班牙语在线Telenovela，专门为西班牙裔护理人员设计的如何应对痴呆症护理，减轻护理负担，减轻压力，缓解抑郁症。我们的电视剧DVD也将为非互联网用户创建。由于Telenovela是一种有限的"电视小说"戏剧，是西班牙裔最受欢迎的电视类型之一，"Telenovela"干预可能会增加主题保留和干预坚持。网络小说也有很大的潜力，因为互联网对西班牙裔美国人非常有吸引力，有大量的西班牙裔美国人在线（2010年为3000万），增长速度是美国在线人口的两倍。基于肥皂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）。小说WN包括：（a）心理教育和认知行为疗法，这是减少压力/抑郁的非常有效的行为干预措施;（B）将循证指南翻译和改编成针对西班牙裔的具有文化敏感性的短篇电视剧;（c）创造性地使用电视剧媒介，吸引和激励用户遵循干预措施。相关临床优势包括：鼓励照顾者参与，提高干预的坚持性，并使技能更好的吸收;这应该提高照顾者的技能，以处理高要求的护理任务，减轻护理负担，提高生活质量，减少压力，并有助于缓解抑郁症。我们将与阿尔茨海默氏症协会、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（包括所有模块）在改善健康，减轻压力和缓解抑郁方面的有效性，并在第二阶段进行随机临床试验。 公共卫生相关性：除了影响美国1500万痴呆症家庭照顾者之外，他们提供了170亿小时的无偿护理，并且面临与痴呆症护理困难相关的压力/抑郁症的高风险（抑郁率为33%），老年痴呆症对西班牙裔的影响也越来越大，西班牙裔是最大的少数民族。（占美国人口的16%）和美国增长最快的种族群体，这一点越来越重要，因为西班牙裔AD患者的数量可能会以惊人的速度增长，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）增长到1700万（2050年）。西班牙裔还面临着一些健康差距和护理障碍，如阿尔茨海默氏症的发病率较高（例如，85岁以上的西班牙裔为63%，白人为30%），更大的抑郁症（西班牙裔照顾者的发病率为45%），医疗保险有限，教育水平较低，家庭收入较低，贫困率较高，语言能力问题，缺乏对痴呆症的了解，需要更多的帮助来处理与痴呆症有关的困难，缺乏具体的工具和文化上适当的干预措施来处理护理问题。第二阶段完成后，我们的项目的预期成果如下：减少西班牙裔痴呆症照顾者的压力/抑郁，提高生活质量，减少护理负担，提高应对技能;此外，我们预计以下潜在的间接结果（本研究未测量）：延迟痴呆症患者的机构化，减少照顾者的药物治疗，从而降低经济成本。