Abstract B038: A community-based participatory research approach to address healthcare disparities in quality of life of Latino parents of children with cancer
Authors: Fortier Michelle A , Garcia Ramon , Torres Lessley , Zavala Sonia , Mendoza Beverly , Ornelas Elisa , Cortes Haydee , Kain Zeev N , Campos Belinda 
Published: September 2020

Disparities in quality of life in Latino youth in cancer treatment and their families have been well documented. Parents of children undergoing cancer treatment experience increased stress that impacts physical and emotional health and subsequently, quality of care received by children. Access to supportive interventions may also be limited for Latino caregivers, due to myriad factors such as lack of insurance, income, language barriers, and documentation status. Accordingly, we aimed to address this gap in the literature by engaging in an equitable collaboration with community partners to develop an intervention to improve quality of life in Latino caregivers of children with cancer. Specifically, we utilized a community-based participatory research (CBPR) model to create a community advisory board with which to partner in this endeavor. Spanish-speaking parents of youth who were in or had previously undergone cancer treatment were recruited. We held regular meetings over the course of one year to identify themes of recurring experiences and barriers to optimal quality of life during children’s cancer treatment. Meetings were continuously evaluated to ensure adherence to the following CBPR principles: 1. collaborative & equitable, 2. mutually beneficial, 3. co-learning process and were transcribed and coded for thematic elements. Significant themes unique to this population included: increased parental stress given cancer care generally fell to one parent, minimal access to self-care strategies, lack of culturally competent healthcare, lack of access to appropriate health-related information, and language barriers affecting quality of communication and information transfer. These themes were used to identify components of a caregiver intervention that includes modules addressing interactions with healthcare providers, self-care with a focus on stress management, and health literacy. Next steps in this program of research are to vet the intervention components with a larger community advisory board to ensure cultural relevance and appropriateness and develop and implement the intervention. This program of research has the potential to minimize disparities in psychosocial outcomes in underserved Latino families of children with cancer.

Citation Format: Michelle A Fortier, Ramon Garcia, Lessley Torres, Sonia Zavala, Beverly Mendoza, Elisa Ornelas, Haydee Cortes, Zeev N Kain, Belinda Campos. A community-based participatory research approach to address healthcare disparities in quality of life of Latino parents of children with cancer [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr B038.