Point of prostate cancer diagnosis experiences and needs of black men: the Florida CaPCaS study
Background Black men are disproportionately affected by prostate cancer and little is known about their experiences at the point of prostate cancer diagnosis (PPCD). Men who self-identify as black are commonly treated in a singular cohort even though they may be of diverse ethnic origin. This is especially important given the increasing number of foreign-born blacks in the United States.
Objective To examine the experiences and needs of ethnically diverse black men at the PPCD to develop an interpretative framework.
Method The research population was black men who had been diagnosed with prostate cancer during 2006-2010. We used a qualitative research design based on grounded theory principles. Using a semistructured interview guide, a trained interviewer collected data on the participants’ PPCD experiences. The data analyses included verifying the narrative data, coding data, and developing an interpretative framework.
Results From an initial sample of 212 black men, data were collected from 31 participants. The interpretative framework that emerged from the study describes the status of black men at the PPCD, experiences of black men at the PPCD, and emotional reactions of black men at the PPCD. Of note is the need among men at the PPCD for psycho-oncology support, emotional support, and time to reflect on the diagnosis.
Limitations Men with different experiences may have chosen not to respond to recruitment efforts or refused participation in the study.
Conclusion The framework provides information that physicians can use to help their patients cope at the PPCD.
Funding Department of Defense PCRP Award W81XWH1310473.
Accepted for publication December 5, 2016. Correspondence Folakemi Odedina, PhD; fodedina@cop.ufl.edu. Disclosures The authors report no disclosures or conflicts of interest.
JCSO 2017;15(1):10-19. ©2017 Frontline Medical Communications.
doi: https://doi.org/10.12788/jcso.0323.
Other emotions at the PPCD that may affect effective treatment decision making also need to be addressed immediately. For example, the emotions of fear, denial, and feeling overwhelmed are potential barriers to timely treatment decision making. Psycho-oncology interventions to appropriately deal with these emotions at PPCD or right after the diagnosis may be crucial for the men. In particular, a group-based psychosocial intervention focusing on: provision of education about treatment options for prostate cancer and their acute and late effects; negotiating treatment and treatment side effects; enhancing communication with treatment providers; managing distress; and engaging positive family- and community-based social support to optimize emotional, behavioral, social, and physical outcomes in black men with prostate cancer.
In addition to having physicians make them comfortable at PPCD, the PPCD needs expressed by participants included having time to come to terms with the diagnosis and receiving psycho-oncology/emotional support. Anyone who has just received a diagnosis of cancer cannot be expected to immediately continue to function as he did before the PPCD. This is especially difficult for men who are alone at the PPCD. Nevertheless, it is expected that they will listen attentively and understand subsequent consultation by the physician, then leave the consultation room almost immediately, and be able drive home or back to work right after the diagnosis. There seems to be a support gap that needs to be closed at the PPCD. Providing the men with immediate support to cope with the diagnosis may make a significant difference in effective treatment choices and eliminating treatment decisional regrets.
Methodological rigor was established through purposeful sampling, extended time with participants, standardized procedures for data collection, management and analysis, multidisciplinary interpretation, and validation of results with the community advisory board. Because the research participants were purposefully selected from a statewide database of black men diagnosed with CaP, generalizability of findings to the two target groups of NBBM and CBBM can be assumed, with the caveat that men with different experiences may have chosen not to respond to recruitment efforts or refused participation. Black men who were not sufficiently fluent in English to be interviewed were also excluded and are not represented in these findings. Black men of other nativity (including African-born black men) and residing outside of Florida were also not represented.
,In conclusion, the PPCD interpretative framework developed in this study, describes the status of black men at the PPCD, their experiences during the PPCD, and their needs at the PPCD. The framework provides information that can be used by physicians to prepare for their PPCD consultation with black men as well as develop a support system for black men at the PPCD.
Acknowledgments
The authors thank the men who participated in the CaPCaS study. They also thank the CaPCaS project community advisory board chairs (Mr Jim West, Dr Angela Adams, and Prince Oladapo Odedina) and all the CaPCaS project community advisory board members for their effort throughout the project. Finally, they rxecognize the effort of additional CaPCaS scientific team, especially the primary interviewer, Mr Kenneth Stokes. Weekly meeting support for this study was provided by the University of Florida MiCaRT Center, which is funded by the NIH-National Cancer Institute Award # 1P20CA192990-02. REDCaP software was supported by the UF Clinical and Translational Science Institute, which is funded in part by the NIH Clinical and Translational Science Award program (grants UL1TR001427, KL2TR001429 and TL1TR001428).
