Development of a Model of Prostate Cancer Care and Survivorship for Black Men: A Grounded Theory Study of Ethnically Diverse Black Men

Objective and Rationale: According to the American Cancer Society, over 35,000 black men were told they had prostate cancer in 2011. Without any preparation, these men abruptly began a prostate cancer care and survivorship journey they never knew they would take before their diagnosis. Researchers have noted that black men's reaction to initial prostate cancer diagnosis varies, from being shocked when notified of their initial diagnosis to the perception of getting a 'death sentence.' Furthermore, the transition from prostate cancer treatment phase to survivorship can be mentally and physically trying, especially for those who lack emotional and financial support. In this study, our goal is to better understand the experiences of black men regarding their prostate cancer care and survivorship.

As with most of our projects, our research group in Florida focuses on answering the questions raised by our community. In this study, the questions are: What are the experiences of black prostate cancer survivors with respect to their prostate cancer care and survivorship? Are these experiences similar for all black men regardless of their ethnicity, including U.S.-born black men, African-born black men, and Caribbean-born black men? If there are prostate cancer care and survivorship differences among these groups, what is responsible for these differences? How can we assist in improving the prostate cancer care and survivorship experiences of black men? Towards our goal of addressing the burden of prostate cancer among black men, our objective is to develop a prostate cancer care and survivorship (CaPCaS) model for black men. This model will assist in the development of intervention programs that can be used to support newly diagnosed black men.

Methods: We will interview 60 prostate cancer survivors in Florida, including 20 U.S.-born, 20 Caribbean-born, and 20 African-born black men. We will collect data from participants using audio, video, and photographs taken by the men that represent their experiences. The interviews will focus on participants' experiences on prostate cancer prevention, detection, diagnosis, treatment, survivorship, and advocacy. The information from the interviews will be used to develop the prostate cancer care and survivorship (CaPCaS) model and a prostate cancer care and survivorship video documentary. In addition, we have included the training of a minority student as part of our research program. The student will focus on developing a prostate cancer advocacy framework for black men.

Applicability of the Research: Once we validate the CaPCaS model, we will use it to develop an intervention program that will support newly diagnosed prostate cancer patients. Although, each man's prostate cancer journey is unique to him and never the same with any other man, the ability to connect with others and learn from others who have gone through the same diagnosis is often referred to as 'medicines that doctors cannot inject and cancer cannot defeat.' We anticipate that the intervention program will be developed in 3-5 years after this study is completed. In addition, we will have research outcomes that will have immediate applications by the end of this study: (1) a prostate cancer care and survivorship video documentary, which will be made available nationwide; (2) an advocacy training program, which will be used to train prostate cancer survivors; (3) a prostate cancer advocacy toolkit, which will be made available nationwide; and (4) a guide brochure titled 'My Prostate Cancer Journey: Perspectives of Black men,' which will be made available nationwide.

Study Contributions: Compared to white men, black men experience great disparities relative to prostate cancer incidence and deaths. They also experience disparities relative to prostate cancer survival with an overall 5-year survival rate of 96% for black men and 100% for white men. Closing the disparity gap requires an innovative way to study the problem of prostate cancer among black men. Instead of the usual black-white comparison, we have chosen to study prostate cancer care and survivorship among an ethnically diverse group of black men who are genetically similar but have different lifestyle, behavior, cultural beliefs, and values. For the first time, a model of CaP care and survivorship will be developed to support black men from diagnosis to post-treatment. Ultimately, this will lead to better survival for black men and help reduce the prostate cancer mortality disparities experienced by this population. The narratives of the study participants will also facilitate the development of an instrument to measure black patients' experiences of prostate cancer care and survivorship.