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

这项建议将建立在以社区为基础的少数族裔服务机构Padres Contra El癌症[父母抗癌](Padres)和加州大学洛杉矶分校Jonsson综合癌症中心(JOCC)儿童癌症生存计划之间先前的积极合作关系的基础上。赠款的四年将建立维持正在进行的研究合作所需的基础设施支持。教士和加州大学洛杉矶分校将协同努力，更好地了解和满足拉美裔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)使教士和JCCC之间的社区-学术研究伙伴关系的基础设施正规化，以便了解如何最好地为拉丁裔儿科、青少年和青年生存社区制定与文化相关的生存教育干预措施，因为他们有后遗症的风险；(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，并将重大发现传播到全国，使双方都受益；(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向其不同的成员群体提供教育、培训和赋权，说明如何通过社区参与性研究的模式改善获得癌症幸存者护理的机会，并成为指导全国其他项目的资源。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门知识和经验，以便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提供的可接受性和可行性。这项研究的预期结果是开发一种照片形式的干预措施，然后可以在拉丁裔幸存者社区进行全国测试，以检验其减少耻辱和改善家庭生存护理讨论和对生存护理规划重要性的认识的有效性。

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.