Cancer Survivorship: Telling a Story through the Eyes of "Esperanza" (Hope) Ap

癌症幸存者：通过“埃斯佩兰萨”（希望）的眼睛讲述一个故事

• 批准号: 8323959
• 负责人: Elvia Barboa
• 金额: $ 19.87万
• 依托单位: UNIVERSITY OF CALIFORNIA LOS ANGELES
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-09-30 至 2014-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8323959
• 关键词: Address; Adolescent; Adult; Advisory Committees; Affect; Age; Area; Cancer Center; Cancer Survivorship; Cardiopulmonary; Caring; Cessation of life; Child; Childhood; Childhood Cancer Survivor Study; Collaborations; Communities; Community Outreach; Comprehensive Cancer Center; Coupled; Development; Educational Intervention; Effectiveness; Effectiveness of Interventions; Enrollment; Eye; Failure; Family; Functional disorder; Grant; Growth; Healthcare; Healthy People 2010; Hispanics; Improve Access; Institute of Medicine (U.S.); Institution; Intervention; Knowledge; Late Effects; Latino; Leadership; Literature; Low income; Malignant Childhood Neoplasm; Malignant Neoplasms; Medical; Minority; Minority-Serving Institution; Modeling; Morbidity - disease rate; Neurocognitive; Operative Surgical Procedures; Outcome Study; Parents; Pattern; Population; Population Study; President' s Cancer Panel; Quality of Care; Quality of life; Radiation; Recording of previous events; Reporting; Research; Research Infrastructure; Resources; Risk; Second Primary Cancers; Siblings; Staging; Stigmata; Survivors; Testing; Time; Training and Education; Treatment Protocols; Work; anticancer research; base; body system; cancer therapy; chemotherapy; childhood cancer survivor; cohort; community based participatory research; community setting; cost; empowerment; experience; health disparity; improved; injured; meetings; member; mortality; outreach; programs; social stigma; survivorship; young adult

This proposal will be building upon a prior positive collaborative working relationship between the community-based, minority serving institution, Padres Contra El Cancer [Parents against Cancer] (PADRES) and the Childhood Cancer Survivorship Program at UCLA's Jonsson Comprehensive Cancer Center (JOCC). The four years of the grant will establish infrastructure support required to sustain the ongoing research collaboration. PADRES and UCLA will synergy their efforts to better understand and address the needs of Latino childhood cancer survivors and their families. The objectives for the overall research strategy include: (1) formalize the infrastructure of the community-academic research partnership between PADRES and the JCCC in order to understand how to best develop culturally-relevant survivorship educational interventions for the Latino pediatric, adolescent, and young adult survivorship community given their risk for late effects; (2) to test the effectiveness of this intervention developed through this collaborative research partnership and disseminate the significant findings nationally for the mutual benefits of both partners; (3) through the development of the formalized research infrastructure, leadership within the PADRES/JCCC partnership will be able provide education, training, and empowerment to its diverse groups of members regarding how to improve access to cancer survivorship care through the model of community-based participatory research and be a resource for guidance to other programs nationally. This partnership will bring together the expertise and experience of the Internal Advisory Committee and Community Advisory Board to develop a culturally-relevant survivorship educational intervention during the implementation stage. The intervention will be tested for its acceptability and feasibility for delivery in the community setting. The expected outcome of this study is to develop the intervention in the form of a photonovela which can then be tested nationally in the Latino survivor community for its effectiveness to decrease stigma and improve families' survivorship care discussions and knowledge about the importance of survivorship care planning.

该提案将建立在社区为基础的少数民族服务机构Padres Contra El Cancer（PADRES）和加州大学洛杉矶分校Jonsson综合癌症中心（JOCC）的儿童癌症生存计划之间的积极合作关系之上。四年的赠款将建立所需的基础设施支持，以维持正在进行的研究合作。PADRES和加州大学洛杉矶分校将协同努力，更好地了解和解决拉丁美洲儿童癌症幸存者及其家人的需求。总体研究战略的目标包括：（1）正式确定PADRES和JCCC之间的社区学术研究伙伴关系的基础设施，以了解如何最好地为拉丁美洲儿童，青少年和年轻成人生存社区制定文化相关的生存教育干预措施，因为他们有后期影响的风险;（2）测试通过这一合作研究伙伴关系制定的干预措施的有效性，并在全国范围内传播重要的研究结果，以促进双方的共同利益;（3）通过发展正式的研究基础设施，PADRES/JCCC伙伴关系内的领导层将能够提供教育，培训，并授权其不同的成员群体，了解如何通过社区参与式研究的模式改善癌症生存护理的获得，并成为全国其他方案的指导资源。这种伙伴关系将汇集内部咨询委员会和社区咨询委员会的专业知识和经验，在实施阶段制定与文化相关的生存教育干预措施。将测试干预措施在社区环境中实施的可接受性和可行性。这项研究的预期成果是以photonovela的形式开发干预措施，然后在拉丁美洲幸存者社区进行全国测试，以评估其有效性，减少耻辱感，改善家庭的幸存者护理讨论和对幸存者护理规划重要性的了解。