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.
We used the Florida Department of Health’s (DoH’s) Bureau of Epidemiology standard procedure for the FCDS9 to recruit participants. Our recruitment strategies included: initial patient contact by written correspondence; second mailing that included a telephone opt-out card after 3 weeks for nonrespondents (the telephone opt-out card explained to the patient that if no response was received, the study investigator would attempt a telephone call to introduce the study); and a telephone call by a study staff to introduce the study for nonrespondents. As per the Florida DoH standard procedure, we did not disclose on the cover of the study mailings that the patient was being contacted for a study specific to cancer. Efforts to recruit a patient stopped immediately if a patient indicated that he did not wish to participate. All of the study staff making participant contact were extensively trained to provide a clear and accurate description of cancer registration in Florida. In addition, to assist the study staff in providing clear and accurate responses, responses to frequently asked questions were made available to the study staff. During the participant recruitment phase, anyone who seemed to be upset when contacted was reported immediately (within 24 hours) to the DoH cancer epidemiologist. In addition, the name of anyone who stated that he did not wish to be contacted again was given to the DoH so that the person would not be re-contacted.
Prescreening of participants for eligibility
All eligible participants who agreed to participate in the study comprised the pool of potential study participants. For those who agreed to participate, the following information was obtained by telephone interview using REDCap software:10 name and contact information, country of birth, age, marital status, and education level. The demographic information facilitated a purposeful systematic selection of black men of diverse age groups (younger than 50 years or older than 50 years), marital status (single, including divorced or separated, or married/in a relationship), and educational level (college degree or not college educated). An incentive of a $5 gift card was provided to all the men who participated in the screening phase. Using systematic sampling to ensure demographically diverse participants, 40 participants (20 NBBM, 20 CBBM) were selected from the initial pool of participants to participate in the study.
Data collection
The data collection was conducted by a trained Community Health Worker (CHW) using semi-structured interview process. The interview guide was constructed by the research team and the study community advisory board members to ensure language appropriateness, understanding and cultural sensitivity. For this study, the interview questions focused on participants’ background information and diagnosis history, including: participants’ personal story of diagnosis, feelings, emotions, reactions, regrets and level of personal/family/physician involvement in diagnosis. For the CBBM, we also obtained information on the age at which they immigrated to the United States. The CHW interviewer was trained to question participants and encourage them to elaborate on areas of importance to their experience.
,A total time of about 5-6 hours was scheduled for the data collection per participant, which is sufficient for gathering in-depth perspectives. We scheduled two interviews lasting not more than 3 hours at a time so as not to create burden for study participants. Participants had the choice to have the interviews completed in a single session or spread out over 2 days. The interviews were audio-recorded to provide ease of transcription and back-up of data. At the end of the interviews, participants were compensated for participating in the study.
Data management and analyses
The study dataset included interview transcripts and field notes of the CHW interviewer describing his insights about the interviews. The data analyses included preparing and verifying the narrative data, coding data, and developing an interpretative framework for black men’s experiences at the PPCD. Interviews were transcribed verbatim by a professional transcription service that has policies in place for protected health information. Each transcript was then verified for accuracy by the CHW interviewer. The interview transcripts were imported directly into NVivo 11, a computer-assisted data analysis software that allows coding and modeling of complex narrative data. The data coding was conducted by our interdisciplinary team of clinicians, behavioral scientists, and social scientists. It is important to note that the NVivo 11 software was not used to analyze the data per se. However, it provided a sophisticated and systematic way to manage the following tasks for the analyses: organizing large quantities of narrative data, coding text, retrieving text by codes, querying the data, comparing sets of data interpretation between NBBM and CBBM; and developing analytic models. The study team members coded the data in weekly team meetings. The coding consisted of reading the data and identifying major themes, then assigning labels to and defining emerging categories.
