Frontotemporal Dementia Caregivers and Researchers: Partnering for Brain Donation

额颞叶痴呆护理人员和研究人员：合作捐献大脑

• 批准号: 7689236
• 负责人: MARY Guerriero AUSTROM
• 金额: $ 4.92万
• 依托单位: INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-09-30 至 2011-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7689236
• 关键词: Address; Alzheimer' s Disease; Applications Grants; Area; Attitude; Awareness; Biomedical Research; Brain; Caregivers; Communities; Data; Dementia; Disease; Education; Educational Intervention; Family; Family Caregiver; Focus Groups; Frontotemporal Dementia; Indiana; Intervention; Persons; Questionnaires; Research; Research Personnel; Research Project Grants; Science; Syndrome; Testing; Transcript; Universities; Writing; community based participatory research; design; instrument; medical schools; member; programs

DESCRIPTION (as provided by applicant): This proposal addresses the question of caregivers of persons with Frontotemporal Dementia (FTD) and their awareness and understanding of the importance of biomedical research, particularly brain donation to potential treatments for this devastating syndrome of diseases. In order to address the lack of empirical data in this area, the Indiana Alzheimer Disease Center Education Core at Indiana University School of Medicine and the Association for Frontotemporal Dementias are partnering together in a community-based participatory research project. The specific aims of this project are three-fold: 1. to identify potential barriers to caregiver participation in brain donation programs among FTD families. 1a. to hold three focus groups with caregiver members of AFTD to identify barriers to participation in brain donation programs. 1b. to conduct content analysis of focus group transcripts to identify common themes. 2. To design a questionnaire to assess the impact of issues, attitudes, concerns and barriers to brain donation as identified by the focus group content analysis. The instrument will include questions to assess the best ways to educate family caregivers about the importance of brain donation, research and participation in research. 3. Write a larger collaborative grant proposal to disseminate the questionnaire to a broader community of dementia caregivers and design and test an effective educational intervention strategy. We believe family caregivers of persons with Frontotemporal Dementia (FTD) are more likely to agree to brain donation if they understand the importance of such donations to the progress of science in this field. As a result of this pilot and the dissemination of the findings, researchers will be better able to understand families' awareness of research and its importance, attitudes toward research participation or barriers to participation, especially brain donation and can design more effective approaches to address the most salient barriers to and concerns about participation in research requesting brain donation. We believe family caregivers of persons with Frontotemporal Dementia (FTD) are more likely to agree to brain donation if they understand the importance of such donations to the progress of science in this field. As a result of this pilot and the dissemination of the findings, researchers will be better able to understand families' awareness of research and its importance, attitudes toward research participation or barriers to participation, especially brain donation and can design more effective approaches to address the most salient barriers to and concerns about participation in research requesting brain donation.

描述（如申请人提供）：该提案解决了额颞痴呆（FTD）患者的护理人员的问题，以及他们对生物医学研究重要性的认识和理解，尤其是对这种灾难性疾病综合征的潜在治疗方法的介绍。为了解决该领域缺乏经验数据，印第安纳大学医学院的印第安纳州阿尔茨海默氏病教育核心和额叶痴呆症协会正在共同合作，共同参加了一个基于社区的参与性研究项目。该项目的具体目的是三倍：1。确定护理人员参与FTD家庭中大脑捐赠计划的潜在障碍。 1a。将三个焦点小组与AFTD的护理人员成员保持联系，以确定参与大脑捐赠计划的障碍。 1B。进行焦点小组成绩单的内容分析以识别常见主题。 2。设计问卷来评估问题小组内容分析所确定的问题，态度，关注和障碍的影响。该工具将包括评估最佳方法的问题，以教育家庭护理人员有关大脑捐赠，研究和参与研究的重要性。 3。编写更大的合作赠款建议，以将问卷传播给更广泛的痴呆症护理人员，并设计并测试有效的教育干预策略。我们认为，如果他们了解此类捐赠对这一领域的科学进步的重要性，那么额颞痴呆（FTD）的人的家庭护理人员就更有可能同意大脑捐赠。由于这位飞行员和调查结果的传播，研究人员将能够更好地了解家庭对研究的认识及其重要性，对研究参与或参与障碍的态度，尤其是大脑捐赠的态度，并可以设计更有效的方法来解决最大程度的障碍，并担心参与要求大脑捐赠的参与。 我们认为，如果他们了解此类捐赠对这一领域的科学进步的重要性，那么额颞痴呆（FTD）的人的家庭护理人员就更有可能同意大脑捐赠。由于该试点和调查结果的传播，研究人员将能够更好地了解家庭对研究的意识及其重要性，对研究参与或参与障碍的态度，尤其是大脑捐赠的态度，并可以设计更有效的方法来解决最显着的障碍，并担心参与要求大脑捐赠的参与参与。