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 (JCCC). 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.
This partnership will address health disparities highlighted in the Institute of Medicine's report on Childhood Cancer Survivorship: Improving Care and Quality of Life, President's Cancer Panel 2010 meeting, and Healthy People's 2010 objectives. Childhood cancer survivors are at risk for eariy morbidity and mortality due to previous cancer treatment. Cancer stigma among Latino families affected by cancer coupled with the knowledge gap regarding the need for survivorship-focused care may widen the existing health disparities for the Latino population.