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: 8726336
• 负责人: Vanessa L Malcarne
• 金额: $ 28.47万
• 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 2016-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8726336
• 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）：聋人社区与其他少数民族社区相同的良好健康信息和关怀障碍。但是，与其他少数民族社区相比，很少研究聋人社区的健康差异。我们悠久的社区校园合作伙伴关系已采取了许多步骤来满足聋人社区的需求，包括培训聋人文化和美国手语（ASL）的卫生保健提供者（ASL），提高ASL口译员对健康相关信息的理解以及在ASL中开发教育计划以促进癌症预防和早期检测。仍然缺乏从诊断和生存的诊断点来教授聋人社区有关癌症的计划。在这个项目中，我们的合作伙伴关系将创建一个新的创新教育计划，称为“应对癌症：美国手语的聋人社区计划”。这将是ASL的癌症教育视频的三部曲，并带有字幕和配音，这将使聋人社区及其亲人的成员访问人们在诊断，治疗和生存过程中正在进行癌症的诊断，治疗和生存过程时所拥有的信息。这三个视频将重点介绍：1）诊断过程和医疗决策； 2）常见的癌症治疗； 3）应对和管理癌症并维持生活质量。在开发了这三个视频后，每个视频将在国家随机对照试验中进行科学测试，并与对照组交叉评估每个视频增加有关聋人对癌症诊断，治疗和管理的知识的能力。这些视频还将进行测试，以查看它们是否积极地改变了聋人对应对癌症所面临的挑战的信心，特别是衡量基线（干预前），干预后立即进行的知识，自我效能感和宿命论的变化，并立即进行了处理，并进行了两个月的随访。实验组中的聋人将看到三个新开发的癌症视频之一。对照组成员最初将观看练习视频，然后邀请越过实验组，观看其中一个癌症视频。基线数据收集还将包括人口统计，健康状况，健康素养，聋人适应和控制措施的健康基因座，使研究人员能够确定参与者对教育计划的中等反应的个人特征。两个月的随访将决定是否随着时间的推移维持增长。如果该教育计划有效，将立即和长期公共卫生福利。该计划将在全国聋人社区中对癌症诊断，治疗和生存问题的了解和了解的立即影响。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，可以在任何地方且无需访问将创建的计划。这将具有长期的好处，即提供一系列教育工具，这些工具可以继续持续教育社区。