Improving Cancer Survivorship Care for Latino Adolescent, Young Adult Survivors through Community-Partnered Participatory Research.

Jacqueline N Casillas,Karla Quintana,Lindsay F Schwartz,Katherine Kahn,Sonia Morales,Esther Casas,Patricia A Ganz,Joshua Macadangdang,Amri Gonzalez,Roshan Bastani,Margaret Stuber,Elvia Barboa,Emma K Lidington

doi:10.35844/001c.29534

Abstract

Minority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care. This study describes the infrastructure of a community-partnered participatory research (CPPR) project between a community-based organization and a National Cancer Institute (NCI)-designated cancer center to develop culturally-tailored interventions to improve Latino AYA cancer survivor knowledge regarding their need for survivorship care. Research team participants included the community organization and NCI cancer center directors, a research coordinator, a community liaison, and cross-training program interns. Through use of Jones's theoretical framework, additional stakeholders from academic and community settings were identified and invited to participate in the research team. A process evaluation and qualitative interviews were conducted to assess equal partnership between community and academic stakeholders and determine if the infrastructure followed the five core principles of CPPR. A grounded theory approach was used to analyze qualitative data. CPPR between an NCI-designated cancer center and a community-based organization is a new research model for conducting minority AYA cancer survivor outreach. Open communication was critical in engaging the Latino community to discuss their survivorship needs. Community stakeholders were key to infrastructure success through fostering a cohesive partnership with and acting as the voice of the Latino community. Implementing a cross-training program promoted continued engagement of community members with academic partners. Proper infrastructure development is critical to building successful research partnerships in order to develop culturally-tailored interventions to improve survivorship care knowledge.

Highlights

Minority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care
The objective of this study is to describe the infrastructure, defined as the organizational structure and guiding principles, used to create a CPPR collaborative partnership between a National Cancer Institute (NCI)designated cancer center, the University of California Los Angeles (UCLA) (National Cancer Institute, 2019), and a community-based organization, Padres Contra El Cáncer (PADRES)
Academic Partner: The Pediatric, Adolescent, and Young Adult Cancer Survivorship Program is embedded within the Division of Cancer Prevention and Control at UCLA’s Jonsson Comprehensive Cancer Center, an NCIdesignated cancer center (National Cancer Institute, 2017)

Summary

Introduction

Minority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care. More than 60% will suffer from long-term chronic health problems, known as late effects, due to their treatment (Bhakta et al, 2016; Gleeson & Shalet, 2001; Hallquist Viale, 2016; Hudson & Patte, 2008; Lewis et al, 2014) These late effects occur from several years to decades after the conclusion of the cancer treatment and carry an increased risk of early death (Gleeson & Shalet, 2001; Hallquist Viale, 2016; Hudson et al, 2003; Mertens et al, 2001). New research models are needed for outreach to minority AYA cancer communities to develop and evaluate interventions that improve receipt of survivorship care

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