Cancer Survivorship: Telling a Story through the Eyes of "Esperanza" (HOPE) appl

癌症幸存者：通过“埃斯佩兰萨”的眼睛讲述故事（HOPE）应用程序

• 批准号: 8152192
• 负责人: Elvia Barboa
• 金额: $ 12.86万
• 依托单位: PARENTS AGAINST CANCER
• 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/8152192
• 关键词: Cancer; Survivorship; Telling; Story; through

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族裔服务机构，Padres Contra El Cancer[父母抗癌]（Padres）和加州大学洛杉矶分校琼森综合癌症中心（JOCC）的儿童癌症幸存者项目之间的积极合作关系之上。为期四年的资助将建立维持正在进行的研究合作所需的基础设施支持。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裔儿童癌症幸存者及其家人的需求。总体研究策略的目标包括：(1)建立PADRES和JCCC之间社区学术研究合作伙伴关系的基础设施，以了解如何为拉丁裔儿童、青少年和青年幸存者社区最好地开发文化相关的幸存者教育干预措施，考虑到他们的后期效应风险；(2)测试通过这种合作研究伙伴关系开发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，以实现双方合作伙伴的共同利益；(3)通过正式研究基础设施的发展，PADRES/JCCC合作伙伴关系的领导层将能够为其不同的成员群体提供教育、培训和授权，以了解如何通过基于社区的参与式研究模式改善癌症幸存者护理的获取，并成为全国其他项目的指导资源。这一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幸存者教育干预措施。将测试干预措施的可接受性和在社区环境中实施的可行性。本研究的预期结果是开发以photonovela形式的干预措施，然后可以在拉丁裔幸存者社区进行全国性测试，以减少耻辱感，改善家庭对幸存者护理的讨论和对幸存者护理计划重要性的认识。