Engaging communities to inform the development of a diverse cohort of cancer survivors: formative research for the eat move sleep study (EMOVES)

被引：2

作者：

Andemeskel G. ^{[1
]}

Palmer N.R. ^{[2
,3
,4
]}

Pasick R. ^{[4
]}

Van Blarigan E.L. ^{[2
,5
]}

Kenfield S.A. ^{[2
,5
]}

Graff R.E. ^{[5
]}

Shaw M. ^{[6
,7
]}

Yu W. ^{[6
,8
]}

Sanchez M. ^{[6
,9
]}

Hernandez R. ^{[6
,10
]}

Washington S.L., III ^{[2
,5
]}

Shariff-Marco S. ^{[5
]}

Rhoads K.F. ^{[1
,5
]}

Chan J.M. ^{[2
,5
]}

机构：

[1] Helen Diller Family Comprehensive Cancer Center, Office of Community Engagement, University of California, San Francisco, CA

[2] Department of Urology, University of California, San Francisco, CA

[3] Department of Radiation Oncology, University of California, San Francisco, CA

[4] School of Medicine, University of California, San Francisco, CA

[5] Department of Epidemiology and Biostatistics, University of California, San Francisco, CA

[6] Community Advisory Board, Office of Community Engagement, University of California, San Francisco, CA

[7] Men’s Health Committee, Office of Community Engagement, University of California, San Francisco, CA

[8] California Health Plan, Common Wealth Care Alliance, San Francisco, CA

[9] Cancer Resource Centers of Mendocino County, Ukiah, CA

[10] CANA Cultura y Arte Nativa de Las Americas, San Francisco, CA

来源：

Research Involvement and Engagement | / 9卷 / 1期

基金：

美国国家卫生研究院;

关键词：

D O I：

10.1186/s40900-023-00529-z

中图分类号：

学科分类号：

摘要：

Background: There are more than 18 million cancer survivors in the United States. Yet, survivors of color remain under-represented in cancer survivorship research (Saltzman et al. in Contemp Clin Trials Commun 29:100986, 2022; Pang et al. in J Clin Oncol 34:3992–3999, 2016; Lythgoe et al. in Prostate Cancer Prostatic Dis 24:1208–1211, 2021). Our long-term goal is to enroll and follow a cohort of historically under-represented cancer survivors, to better understand modifiable risk factors that influence clinical and quality of life outcomes in these populations. Towards that goal, we describe herein how we applied community-based participatory research approaches to develop inclusive study materials for enrolling such a cohort. Methods: We implemented community engagement strategies to inform and enhance the study website and recruitment materials for this cohort including: hiring a dedicated engagement coordinator/community health educator as a member of our team; working with the Helen Diller Family Comprehensive Cancer Center Office of Community Engagement (OCE) and Community Advisory Board members; presenting our educational, research, and study recruitment materials at community events; and establishing a community advisory group specifically for the study (4 individuals). In parallel with these efforts, 20 semi-structured user testing interviews were conducted with diverse cancer survivors to inform the look, feel, and usability of the study website. Results: Engagement with community members was a powerful and important approach for this study’s development. Feedback was solicited and used to inform decisions regarding the study name (eat move sleep, EMOVES), logo, study website content and imagery, and recruitment materials. Based on community feedback, we developed additional educational materials on healthy groceries and portion size in multiple languages and created a study video. Conclusions: Including an engagement coordinator as a permanent team member, partnering with the institutional community outreach and engagement resources (i.e., OCE), and allocating dedicated time and financial support for cultivating relationships with stakeholders outside the university were critical to the development of the study website and materials. Our community guided strategies will be tested as we conduct enrollment through community advisor networks and via the state cancer registry. © 2023, The Author(s).

引用

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