Abstract A30: Supporting prostate cancer survivor advocacy through community-based participatory research and photovoice methods
Authors: Gilbert Lauren R. 
Published: October 2015

This study examines the utilization of survivor advocates in prostate cancer awareness outreach efforts within the black community. Persisting health disparities exist when it comes to prostate cancer morbidity and mortality for black men compared to white men. There is consensus that an appreciable portion of these disparities persist because of insufficient knowledge about prostate cancer and insufficient access to regular health care. This research project examines black prostate cancer survivors as advocates for prostate cancer awareness and screening education, and more general outreach efforts in black communities. Survivor advocates can not only give insight into the perceptions, beliefs and behaviors of men in the black community, but can also serve as mediators between their communities and the health care system. Because prostate cancer is not experienced by only the men, other stakeholders will be included in the project, such as significant others, family members and health care providers. These views will provide a more nuanced understanding of the interplay between the knowledge, uptake, and subsequent actions of these men.

Using a combination of ethnographic observations, in-depth interviews, and photovoice methods in a community based participatory research (CBPR) approach, this qualitative project calls attention to the experiences of survivor advocates, as well as other important stakeholders, allowing for a better understanding of the interplay between the knowledge, uptake, and subsequent actions of these men. By using the CBPR approach and these methods, the project will be culturally sensitive and competent, providing a culturally enriched approach to advocacy and more broadly, addressing the existing health disparities in prostate cancer.

Based on the preliminary results and analysis, these survivors have a unique perspective on prostate cancer awareness and screening. Advocacy for prostate cancer awareness is a complex process, involving different approaches and strategies. The men fight against fears associated with prostate cancer, such as homophobia with screening exams, cancer as a death sentence, and possible sexual dysfunction. The advocates dispel these fears and concerns by replacing them with knowledge about early detection, the variety of treatment options, and ways to deal with sexual dysfunction, including emphasizing overall health. They also deal with the feelings of invulnerability when it comes to prostate cancer. The main focus of advocacy is to encourage other men to make informed decisions about prostate cancer. By sharing their own experiences, the advocates are also able to make their messages more relatable for the men.

Survivor advocates empower the community by (1) providing a trusted and legitimate voice to the community about sensitive and sometimes confusing topics, and (2) being equal partners in the research through the CBPR approach. Furthermore, advocacy creates an ongoing campaign of prostate cancer awareness and screening education, instead of a single point intervention. By engaging these men and becoming more aware of their motivations and barriers to advocacy, better programs and supports can be created for them with their input. This project will be used as a framework to create an advocacy toolkit and training program.

Citation Format: Lauren R. Gilbert. Supporting prostate cancer survivor advocacy through community-based participatory research and photovoice methods. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A30.