Integrating Multiple Sources of Data to Inform Cancer Interventions: a Case Study with Arab Americans

Abstract

This dissertation engaged multiple Arab American (ArA) community stakeholders to define cancer-related needs and barriers in the ArA community in Chicago, and in turn guide the development of acceptable, culturally-congruent cancer interventions. First, I conducted a scoping review of the cancer intervention literature with ArAs to examine outcome and implementation characteristics and identify gaps and opportunities for future research. I also engaged in community-based participatory research (CBPR) with a community-based organization to assess their community’s cancer-related priorities through focus groups, and subsequently develop a responsive cancer intervention. Finally, I conducted interviews with ArA community stakeholders to explore their perceptions of ArA cancer survivors’ needs and acceptable interventions. As a whole, this dissertation revealed that although multilevel cancer interventions across the cancer control continuum are needed to effectively address cancer disparities with ArAs, existing cancer interventions have disproportionality focused on individual-level determinants of cancer detection. Findings also suggest that a community-academic partnership grounded in CBPR was a feasible and acceptable approach to generate and integrate locally-relevant community and academic data to inform a multi-component cancer intervention. Finally, perspectives of multiple ArA stakeholders (e.g., cancer survivors, caregivers, healthcare providers, community leaders, faith-based leaders) captured the multilevel needs experienced by ArA cancer survivors, as well as acceptable multilevel interventions to address these needs. Overall, this dissertation generated opportunities to develop and test acceptable cancer interventions with the ArA community in Chicago. Addressing the cancer needs of ArAs will require tackling fundamental research barriers unique to this population, including funding and community engagement challenges. For example, ArAs should be considered a health disparity population by the National Institutes of Health to increase funding availability and incentivize research with this understudied population. To achieve this long-term goal, academic researchers should engage in equitable partnerships with local ArA communities to generate nuanced, locally-relevant data, as well help make the case for funding allocation to address their unique needs. Simultaneously, the dynamics and successes of these partnerships should be documented. Additionally, academic researchers should support community-based advocacy efforts to recognize ArAs as separate from Whites, to achieve the mutually beneficial goal of visibility and representation

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