Coping with Cancer: A Program for the Deaf Community in American Sign Language

应对癌症：美国手语聋人社区项目

• 批准号: 8917869
• 负责人: Vanessa L Malcarne
• 金额: $ 29.23万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN DIEGO
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-01 至 2017-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8917869
• 关键词: Access to Information; Acculturation; Address; Cancer Control; Cancer Survivor; Caring; Characteristics; Clinical; Communities; Community Health; Continuance of life; Control Groups; Control Locus; Data Collection; Decision Making; Development; Diagnosis; Diagnostic; Early Diagnosis; Education; Educational process of instructing; Equipment and supply inventories; Esthetics; Exercise; Film; Future; Genetic Crossing Over; Health; Health Benefit; Health Personnel; Health Professional; Health Status; Hearing; Hearing Impaired Persons; Individual; International; Intervention; Knowledge; Language; Learning; Life; Mainstreaming; Malignant Neoplasms; Measures; Medical; Minority; Needs Assessment; Outcome; Participant; Patients; Persons; Postdoctoral Fellow; Preparation; Process; Provider; Public Health; Publications; Quality of life; Randomized Controlled Trials; Relative (related person); Research; Research Personnel; Research Proposals; Self Efficacy; Series; Services; Sign Language; Students; Testing; Time; Training; Translating; Trust; Universities; Vocabulary; Work; base; cancer diagnosis; cancer education; cancer prevention; cancer therapy; common treatment; coping; cost; demographics; design; experience; follow-up; health disparity; health literacy; improved; innovation; lifetime risk; literacy; loved ones; member; oncology; post intervention; programs; response; socioeconomics; survivorship; therapy design; tool

DESCRIPTION (provided by applicant): The Deaf community experiences many of the same barriers to good health information and care as other minority communities. However, in comparison to other minority communities, very little research has examined health disparities in the Deaf community. Our long-established community-campus partnership has taken a number of steps to addressing the needs of the Deaf community, including training of health care providers in Deaf culture and American Sign Language (ASL), improving ASL interpreters' understanding of health-related information, and developing education programs in ASL to promote cancer prevention and early detection. Still lacking is a program to teach the Deaf community about cancer from the point of diagnosis through treatment and survivorship. In this project, our partnership will create a new and innovative education program called Coping with Cancer: A Program for the Deaf Community in American Sign Language. This will be a trilogy of cancer education videos in ASL with captioning and voiceover that will give members of the Deaf community and their loved ones access to the kind of information that hearing people have when the diagnostic, treatment and survivorship processes are underway for cancer. The three videos will focus on: 1) the diagnostic process and medical decision-making; 2) common cancer treatments; and 3) coping with and managing cancer and maintaining quality of life. After the three videos are developed, each will be scientifically tested in a national randomized controlled trial with control group cross-over to assess each video's capacity to increase the knowledge Deaf persons have about cancer diagnosis, treatment, and management. The videos will also be tested to see if they positively change Deaf persons' confidence for dealing with the challenges presented by cancer, specifically measuring changes in knowledge, self-efficacy, and fatalism at baseline (pre- intervention), immediate post-intervention, and two-month follow-up. Deaf individuals in the experimental group in this study will see one of the three newly developed cancer videos. Control group members will initially see an exercise video and then will be invited to cross over into the experimental group to view one of the cancer videos. Baseline data collection will also include demographic, health status, health literacy, Deaf acculturation, and health locus of control measures to allow the researchers to determine whether personal characteristics of the participants moderate response to the education program. The two-month follow-up will determine whether gains are maintained over time. If this educational program is effective, there will be both immediate and long term public health benefits. The program will have the immediate effect of increasing knowledge and understanding of cancer diagnosis, treatment, and survivorship issues in the Deaf community nationwide. The programs that will be created can be accessed anywhere and without cost by the Deaf community and their loved ones, as well as healthcare professionals who serve the Deaf community. This will have the long term benefit of providing a set of educational tools that can continue to educate the community on an ongoing basis.

描述（由申请人提供）：聋人社区经历了许多与其他少数民族社区相同的障碍，无法获得良好的健康信息和护理。然而，与其他少数民族社区相比，很少有研究探讨聋人社区的健康差异。我们长期建立的社区校园合作伙伴关系已经采取了一些措施来解决聋人社区的需求，包括培训聋人文化和美国手语（ASL）的医疗保健提供者，提高ASL口译员对健康相关信息的理解，并制定ASL教育计划，以促进癌症预防和早期发现。仍然缺乏的是一个项目，教导聋人社区从诊断到治疗和生存的癌症。在这个项目中，我们的合作伙伴关系将创建一个新的和创新的教育计划，称为应对癌症：美国手语聋人社区计划。这将是ASL中的癌症教育视频三部曲，配有字幕和画外音，将使聋人社区的成员及其亲人能够获得听力正常的人在癌症诊断，治疗和生存过程中所拥有的信息。这三个视频将侧重于：1）诊断过程和医疗决策; 2）常见的癌症治疗;和3）应对和管理癌症和维持生活质量。在这三个视频开发完成后，每个视频都将在一个全国性的随机对照试验中进行科学测试，对照组交叉，以评估每个视频增加聋人对癌症诊断，治疗和管理的知识的能力。还将对这些视频进行测试，以确定它们是否积极改变聋人应对癌症挑战的信心，特别是测量基线（干预前），干预后立即和两个月随访时知识，自我效能和宿命论的变化。在这项研究中，实验组的聋人将看到三个新开发的癌症视频之一。控制组成员将首先看到一个锻炼视频，然后被邀请进入实验组观看其中一个癌症视频。基线数据收集还将包括人口统计学、健康状况、健康素养、聋人文化适应和健康控制点测量，以使研究人员能够确定参与者的个人特征是否对教育计划有中度反应。两个月的后续行动将决定是否随着时间的推移保持收益。如果这项教育计划是有效的，将有立即和长期的公共卫生效益。该计划将在全国聋人社区增加对癌症诊断，治疗和生存问题的认识和理解。聋人社区及其亲人以及为聋人社区服务的医疗保健专业人员可以在任何地方免费访问将创建的程序。这将有长期的好处，提供一套教育工具，可以继续教育社区的持续基础上。