Abstract
Background: African American men face significant disparities in prostate cancer outcomes, influenced by low trust in health care providers and disparities in treatment quality. Shared decision making (SDM) is recommended to improve engagement and outcomes within this population.
Methods: Semistructured interviews were conducted with 15 African American men diagnosed with early-stage prostate cancer within the Veterans Administration health system in Louisiana. The Theoretical Domains Framework guided the interview guide development and qualitative data analysis.
Results: Participants had a mean age of 68.8 years; 53% held a high school diploma or GED, and 40% had higher education. Employment statuses included 27% retired and 53% employed part-time. Self-reported physical health was rated as “poor/fair” by 47% and mental health by 53%. We found that 46.67% believed health care organizations cover up mistakes, and 40% felt deceived or misled. Despite these concerns, 73.33% disagreed that mistakes are common. Regarding physician trust, 86.67% felt their doctor cared about them, but 66.67% believed their care was not comprehensive. However, 80% trusted their doctor's judgments, and 66.67% followed their doctor's advice. Participants highlighted gaps in prostate cancer awareness and varied prediagnosis health management practices. Social support varied; some relied heavily on family, while others preferred independence. Trust in health care providers was generally high despite past negative experiences and high physician turnover. The SDM process was valued, needing clearer communication about treatment options and side effects.
Conclusions: While African American veterans generally trusted their physicians and valued the SDM process, significant mistrust toward health care organizations, concerns about comprehensive care, and gaps in prostate cancer awareness and health management practices highlight the need for improved communication and support.
- African Americans
- Healthcare Disparities
- Medical Decision Making
- Prostate Cancer
- Shared Decision Making
- Trust
- Veterans Health
Introduction
African American men with prostate cancer face significant disparities in health care outcomes. They not only have a higher lifetime risk of developing prostate cancer—1 in 6 versus 1 in 8 for White men—but also a greater likelihood of dying from the disease (1 in 23 vs 1 in 42).1,2 They are also less likely to receive treatment and, when treated, often receive lower-quality care compared with their white counterparts.3 A critical factor contributing to these disparities is a low level of trust in physicians, which has been associated with delays in seeking care.4 Conversely, higher trust in health care providers is linked to positive health care experiences and better health outcomes.4–6 National surveys highlight that patients are more likely to agree to prostate cancer screening and treatment when they trust their doctors.7 Lack of trust can hinder patients from fully disclosing medical history, consenting to exams, or adhering to treatment recommendations.8,9
Men seeking care for prostate cancer rely on health care providers to navigate complex decisions, especially regarding the risks and benefits of various treatments. Although the specific impact of health literacy and education on treatment decisions remains unclear, these factors are associated with disparities in how prostate-specific antigen (PSA) levels are understood and addressed by patients. In addition, health literacy influences patients' ability to access and comprehend the information they need to make informed treatment decisions.10 When patient expectations are unmet, trust can erode, leading to decreased cooperation and increased distrust in future interactions.11 This erosion of trust may result in decreased patient cooperation and increased distrust in future interactions.12 Therefore, patients need to understand their treatment options to build and maintain trust with their health care providers.
Patients’ expectations about treatment are sometimes uninformed, and physicians' perceptions of their patients' preferences can often be inaccurate.13 Shared decision making, particularly when supported by decision aids, can bridge this gap by informing prostate cancer patients about various treatment options' potential costs and benefits. This approach can foster trust within patient-provider relationships and actively engages patients in their care, enhancing their overall understanding and satisfaction.14 Shared decision making improves patient knowledge, reduces anxiety, and alleviates stress associated with decisional conflict.15,16 It has also been shown to improve communication between patients and doctors and reduce decision regret, especially among racial and ethnic minorities in the United States.17,18 Among African American men, electronic decision aids have enhanced decision making capabilities and increased knowledge.19
The purpose of this mixed-methods study was to assess the barriers and facilitators to shared decision making among African American men diagnosed with early-stage prostate cancer within a Veterans Administration (VA) health center in Louisiana. We hypothesized that trust plays a role in the effectiveness of shared decision making, supported by studies indicating similar impacts in other cancer populations.20,21 The rationale for our study was that Black men may have unique histories and health care experiences that shape their willingness to engage in shared decision-making for prostate cancer treatment.
Methods
We used the Consolidated Criteria for Reporting Qualitative Research (COREQ), employing its 32-item checklist to enhance transparency and rigor in reporting our interview findings.22 This framework guided us through detailed documentation of the research team’s characteristics and reflexivity, ensuring a thorough reflection on potential biases. The COREQ checklist also facilitated a comprehensive description of the study context, participant selection, and the specific methods used for data collection and analysis. By systematically addressing each COREQ item, we aim for all aspects of our qualitative methodology to be transparently reported, supporting the reliability and validity of our conclusions. This research was approved by the VA Central Institutional Review Board.
Domain 1: Research Team and Reflexivity
Personnel Characteristics
The semistructured interviews were conducted by a female research coordinator under the supervision of a male urologist. The urologist had extensive experience in clinical urology, oncological research, and prostate cancer treatment. The research coordinator, experienced in study coordination, brought detailed organizational skills to the study. Data analysis was conducted by a female research assistant with a doctoral degree in biotechnology, pursuing a master’s in public health, and supervised by a male doctoral-trained health services researcher. All study team members completed human subjects training.
Relationship with Participants
No prior relationship was established between the interviewers and the participants before the commencement of the study. Participants were made aware of the researchers’ professional roles and their interests in improving shared decision making and health care outcomes for African American prostate cancer patients.
Domain 2: Study Design
Setting
Patients were recruited from the Southeastern Louisiana Veterans Health Care System (SLVHCS), which serves veterans throughout 23 parishes in southeast Louisiana. Ninety percent of patients live within 30 minutes of the primary care and mental health services offered by SLVHCS.
Theoretical Framework
We applied the Theoretical Domains Framework (TDF) to develop the interview guide and guide the qualitative data analysis for a structured and theory-informed approach.23 The TDF, which integrates constructs from thirty-three behavior change theories into fourteen domains, was used to identify the key determinants of behavior relevant to our study objectives. This framework informed the creation of our interview guide, which included a mix of closed and open-ended questions designed to probe cognitive, affective, social, and environmental influences on participants' decision making processes. These questions were further refined using insights from a recent systematic review of oncology care, aligning them with current empirical evidence.24,25
For data analysis, the TDF provided a method to categorize and analyze qualitative data, facilitating the examination of how various factors influenced decision making among study participants. This methodical use of the TDF helped test our hypothesis that context-specific barriers and facilitators can be identified and potentially modified to enhance patient engagement in decision-making. The integration of TDF into our study design and analysis not only bolstered the theoretical grounding of our work but also enhanced the interpretative richness of our findings, providing a pathway for developing targeted interventions to improve patient outcomes in clinical settings.
Participant Selection
Patients were eligible if they met the following criteria: initial diagnosis of localized Stage 1 prostate cancer; African American/Black or White; non-Hispanic; aged 18 or older; able to speak and understand English; and willing to sign informed consent. Participants were considered African American if they identified solely as African American or marked African American and White, but no other races. Recruitment was conducted in the clinic through brochures and direct contact. Participants completed an initial questionnaire after their cancer diagnosis and initial discussions with their physician but before any decision on therapy or further imaging for staging. We recruited fifteen newly diagnosed Black men for semistructured interviews conducted before their treatment decisions.
Data Collection
We administered a questionnaire to collect demographic information before each interview. We used the validated medical mistrust index and trust in physician scale to collect information on participants' levels of mistrust and trust.26,27 The 45—to 60-minute interviews were audio and visually recorded with consent and stored securely. An interview guide was developed from systematic reviews to refine the questions further, and TDF was pilot-tested. Field notes were also taken to capture additional insights during and after the interviews. We collected data on participants' knowledge of prostate cancer, trust in health care providers, past health care experiences, social support systems, and decision-making processes during semistructured interviews. These data were included to provide an understanding of the broader context that may shape treatment preferences and engagement in shared decision making.
Domain 3: Analysis and Findings
Data Analysis
In the thematic analysis phase, each interview transcript was double-coded. We used NVivo 14 to organize, code, and retrieve data systematically. Themes were derived inductively from the participants' narratives, ensuring the analysis was grounded in study data rather than pre-existing hypotheses. This approach provided insight into the participants' experiences and perceptions. The thematic analysis focused on identifying patterns related to barriers and facilitators of shared decision making among African American prostate cancer patients. The research team reviewed and refined emergent themes collaboratively, discussing each theme, comparing them against the raw data, and ensuring they accurately represented the underlying data while aligning with the TDF's theoretical constructs. This iterative process helped to maintain thematic fidelity and assess whether the final themes were supported by the data and relevant to the study’s objectives.
Reporting
Findings were reported with direct quotations from participants, each tagged with identifiers for anonymity. The analysis reflected the raw data, with major themes detailed and minor themes discussed to illustrate the range of experiences and perspectives.
Results
We recruited fifteen participants between March and October 2023, all whom served in the United States military, with experiences spanning from the Vietnam War era to the early 2000s. Their service varied from about a year to 25 years, including active duty and reserves. Significant experiences included hearing damage from an explosion in Vietnam, discharge due to injury, and leaving the military after a family tragedy. Most participants joined the military at a young age, with some enlisting right out of high school and later taking on various civilian roles. The average age of participants was 68.8 years, ranging from 51 to 78 years (Table 1). Most identified as non-Hispanic African American/Black. Educational levels varied: 7% had less than a high school education, 53% had a high school diploma or GED, and 40% had higher education. Employment status showed 53% employed part-time, 7% full-time, 7% unemployed and looking for work, 7% not looking for work, and 27% retired. Physical health ratings were 47% poor or fair, 33% good, and 20% very good or excellent. Mental health ratings were 53% poor or fair, 20% good, and 27% very good or excellent.
Interview Participant Demographics (n = 15)
Medical Mistrust Index
The Medical Mistrust Index revealed notable levels of mistrust among participants toward health care organizations (Table 2). A significant portion, 46.67%, agreed that health care organizations usually cover up mistakes, highlighting a strong perception of nontransparency. In addition, 40% believed health care organizations sometimes deceived or misled patients, and 33.33% had concerns about harmful experiments conducted without patient knowledge. Conversely, 73.33% disagreed that mistakes are common in health care organizations, indicating a mixed level of trust regarding the frequency of errors.
Participant Responses to the Medical Mistrust Index and Trust in Physician Scale
Trust in Physician Scale
The Trust in Physician Scale indicated varying levels of trust in physicians (Table 2). A notable 86.67% of participants disagreed that they doubt their doctor cares about them, suggesting a generally positive perception of their physician's empathy. While 53.33% of participants considered their doctor to be an expert in managing medical problems like theirs, 80% expressed trust in their doctor's judgment about their medical care. In addition, 66.67% reported consistently trying to follow their doctor's advice, indicating a generally high level of trust in their physician's recommendations.
Theme 1: Knowledge Gaps in Prostate Cancer Awareness
Most participants had minimal knowledge about prostate cancer before their own or a relative's diagnosis. While many were aware that it is common, particularly among Black men, their overall understanding of the disease was limited compared with what they knew at the time of the interview after screening. Some became more informed after a family member's diagnosis, while others researched online postdiagnosis to learn about treatment options like surgery and radiation. Many were surprised by their own diagnosis, believing they were healthy or too young. One participant highlighted the lack of timely screening and unhealthy habits like smoking as factors in more aggressive prostate cancer among Black men. Most participants' knowledge came primarily from TV or word of mouth until they were personally affected by the disease.
Theme 2: Variability in Prediagnosis Prostate Health Management and Screening
Before their prostate cancer diagnosis, most participants received regular checkups, though the frequency and thoroughness varied. Some participants reported limited access to resources or guidance for managing their prostate health. Several had prostate issues like an enlarged prostate or fluctuating PSA levels for years before their diagnosis. Despite some screening, many were surprised by their diagnosis and felt they could have been more proactive in managing their prostate health.
Theme 3: Diversity in Social Support Systems During Prostate Cancer Treatment
Participants reported varying levels of social support leading up to their diagnosis and differing perceptions of the support they would receive after being diagnosed with prostate cancer. Some reported close-knit families, including sisters, cousins, and children, who offered emotional support and planned to be present for treatments. Others relied on spouses or fiancées for comfort and accompaniment to medical appointments. A few turned to specific family members, like nurse practitioner relatives, for advice. Some participants had insufficient access to social support systems and chose to manage their health independently, either due to personal circumstances or a lack of available resources. One participant relied on faith rather than seeking support from others. Another had no family or friends to turn to, as those close to him had passed away. Overall, many participants benefited from family support for emotional, medical, and logistic help during their prostate cancer experience.
Theme 4: Positive Experiences and Systemic Challenges
Most participants reported positive experiences with their care, describing it as good, decent, or “on point.” They appreciated the medical staff's attentiveness, concern, and willingness to explain the process. However, some faced challenges like communication issues within the VA system, medication delays, and seeing multiple providers, which affected their ability to make informed decisions. Specific experiences varied: one participant, despite receiving information, did not fully grasp the situation until researching on his own; another experienced care delays due to communication problems within the system. Despite these challenges, participants generally found the care satisfactory, with staff showing genuine concern and professionalism, even during uncomfortable procedures like prostate examinations.
Theme 5: Factors Influencing Trust in Prostate Cancer Care Providers: Communication, Expertise, and Patient Engagement
Participants' experiences with trust in their doctors varied, but most expressed positive views. They valued open communication, attentiveness, and clear explanations. Doctors who took time to discuss their condition, treatment options, and side effects were particularly appreciated. Some participants had reservations due to negative past experiences with military doctors, high turnover of VA physicians, and miscommunication. However, doctors who showed a strong commitment to patient care often mitigated these concerns. Several participants highlighted the need to conduct their own research to supplement the information provided by their doctors. Key factors contributing to trust included effective communication, attentiveness, and the perception that doctors were providing the best possible care. Despite some mixed experiences, they reported higher levels of trust and satisfaction with the care received during the screening, diagnosis, and discussion of treatment options for their prostate cancer.
Theme 6: Diverse Experiences of Trust and Prior Satisfaction with Health care
Participants' experiences with trust in the health care system were positive with a few exceptions. Most expressed satisfaction with the quality of care and the atmosphere of their health care facilities. Factors contributing to trust included having family members in the medical field, direct contact with health care providers, and staff's friendly attitude. One participant appreciated comprehensive care, including being flown to another facility for specialized treatment. However, experiences varied; one participant noted general mistrust among African Americans despite their own positive experiences. Another mentioned past issues with long lines, overworked VA staff, and a recent instance where their primary doctor was dismissive. Overall, participants' trust in the health care system was shaped by their experiences, care quality, and staff interactions.
Theme 7: Preferences in Prostate Cancer Care: Prioritizing Collaboration and Informed Choice
Participants' experiences with shared decision making varied, with most describing a collaborative process. However, some noted challenges in accessing information and resources, which led them to rely on personal research to navigate complex decisions. Many appreciated clear explanations, opportunities to ask questions, and express preferences. Some found the process thorough and quicker than expected, while others desired more details on certain aspects like side effects. The influence of family members' or friends' experiences was significant for several participants. Others highlighted the importance of reflecting on options, praying, and consulting loved ones. Despite some confusion, most felt they communicated well with their doctors and received the necessary information to make informed decisions. Participants valued their doctors' recommendations but appreciated having the final say in their treatment choices. Examples of quotes for each theme are included in Table 3.
Example Quotes Within Identified Themes
Mapping Themes to the Transtheoretical Domains Framework
We mapped identified themes to the Transtheoretical Domains Framework (TDF) to identify potential barriers and facilitators for designing interventions to improve the uptake of shared decision making (Table 4). Knowledge barriers were evident as many participants often reported a lack of accessible information about prostate cancer before diagnosis, though personal research postdiagnosis served as a facilitator. Participants often lacked access to educational resources or support systems to help manage their prostate health. Social and professional roles varied; some participants preferred independence, while many benefited from family support, suggesting the potential benefits of support groups or peer mentoring. Surprising diagnoses highlighted a gap in beliefs about capabilities. Positive outlooks toward recovery facilitated optimism, which could be bolstered by sharing success stories. Past negative experiences with health care impacted beliefs about medical interventions, pointing to the necessity for clear communication about the benefits of early detection and regular check-ups. Intentions to manage health better postdiagnosis were common, underscoring the value of planning and goal-setting strategies in patient education. Environmental challenges included VA system delays and miscommunication. Physician turnover and communication effectiveness influenced trust in doctors, highlighting the need for improved continuity of care and provider communication skills. The emotional impact of diagnosis was significant, with participants relying on both medical support and faith, suggesting a role for psychological counseling and stress management resources. Lastly, behavioral regulation postdiagnosis was proactive, supporting the development of personalized management plans to maintain health effectively.
Barriers and Facilitators to Shared Decision Making Among African American Veterans Recently Diagnosed with Prostate Cancer
Discussion
The findings from this study provide insights into the experiences of African American patients recently diagnosed with prostate cancer, particularly in terms of their trust in doctors and the health care system and their involvement in shared decision making. Our study builds on previous qualitative research that found Black men often face challenges in accessing the necessary information to make informed decisions about prostate health, which is significant given known racial disparities.28 We extend this work by examining informed decision making in the context of treatment decisions after a prostate cancer diagnosis.
The results highlight the importance of effective communication, attentiveness, and a patient-centered approach in fostering trust and facilitating collaborative decision making. Participants generally reported positive experiences with their care teams, valuing clear explanations, thorough discussions of treatment options and side effects, and a sense that their concerns were being heard and addressed. Trust was enhanced when doctors took the time to listen, provided comprehensive information, and demonstrated expertise in their field. However, some participants did express concerns about the high turnover of doctors in the VA system and instances of feeling dismissed or not fully informed. A previous study also found that patients' satisfaction was driven by their perceptions of their physician's trustworthiness. Patients experience greater satisfaction when doctors provide ongoing support, as continuity of care enhances patient satisfaction.29
Most participants appreciated the opportunity to be actively involved in the process, valuing the information and recommendations provided by their doctors while ultimately feeling empowered to make the final decision. Risk communication and expressions of values (eg, patient-centered care) are fundamental aspects of shared decision making, and participants who receive better communication from their physicians report higher trust.30 Many participants conducted their own online research and considered factors such as age, side effects, and personal preferences when choosing between treatment options like surgery, radiation, or active surveillance. However, patients may encounter inaccurate or incomplete information, which can increase confusion, heighten anxiety, and contribute to misguided treatment decisions.31 Without the guidance of health care providers, patients may struggle to differentiate reliable sources from misleading content, potentially undermining shared decision making and informed consent processes.
The study also highlights the role of personal experiences and emotions in the decision making process, with several participants citing the influence of seeing family members or friends go through prostate cancer treatment. Some emphasized the importance of taking time to process information logically rather than emotionally, while others relied on prayer and consultation with loved ones. Shared decision making is useful for systematically matching decisions to preferences, reconciling conflicts, and making meaning of decisions intellectually and emotionally.32
These findings underscore the need for health care providers to prioritize clear, comprehensive communication and engage patients as active partners in their care. By fostering trust, providing thorough information, and supporting shared decision making, providers can help patients feel more confident and empowered in navigating their prostate cancer treatment decisions. However, the study also reveals areas for improvement, such as addressing issues of doctor turnover and ensuring that all patients receive consistent, high-quality information and support. Future research could explore strategies for enhancing trust and shared decision making, particularly in the context of complex, emotionally charged conditions like prostate cancer.
Limitations
Our study had several noteworthy limitations. First, the sample size was relatively small, comprising only 15 newly diagnosed patients with localized prostate cancer. Despite this, the qualitative nature of the study allows for an in-depth exploration of participants' experiences and perceptions, providing rich, nuanced insights that can inform future, larger-scale studies. Second, the study was conducted in a single health care system, which may limit generalizability. However, the SLVHCS serves a diverse population of veterans across 23 parishes, providing a broad context for understanding health care experiences. In addition, using the Theoretical Domains Framework ensures that the findings are grounded in robust theoretical constructs, enhancing their relevance to similar settings. Third, the study's reliance on self-reported data to assess mistrust and trust in health care providers could introduce response bias. To address this, the study used validated scales, such as the Medical Mistrust Index and the Trust in Physician Scale, enhancing the reliability and validity of the self-reported data. Triangulating interview data with field notes further adds depth and context to the participants' responses. Future research can build on these findings by conducting longitudinal studies. Lastly, potential interviewer bias must be acknowledged, as the research team members' personal characteristics and professional backgrounds may have influenced participants' responses. To mitigate this, the study team followed the COREQ to enhance transparency and rigor.
Conclusion
This study provides valuable insights into the experiences of African American veterans with prostate cancer, highlighting the nuanced dynamics of trust in health care providers and organizations. The VA health system's relatively homogeneous health care access environment (compared with non-VA settings) reduces variability in insurance and care access, allowing for a clearer assessment of the impacts of barriers and facilitators for shared decision making. Effective communication and a patient-centered approach foster trust and facilitate shared decision making. Despite significant mistrust toward health care organizations, individual care teams can build strong, trusting relationships through clear explanations, attentiveness, and demonstrating expertise. However, the primary barriers identified in the study include difficulty accessing clear and consistent information, varying levels of trust in health care providers, and challenges related to social support. Addressing these factors will enable health care providers to better support African American prostate cancer patients and enhance their engagement in shared decision making, ultimately improving their health care outcomes.
Notes
This article was externally peer reviewed.
Conflict of interest: None.
Funding: This research was funded by the Robert Wood Johnson Foundation's Health Equity Scholars for Action program.
To see this article online, please go to: http://jabfm.org/content/38/2/302.full.
- Received for publication June 10, 2024.
- Revision received November 4, 2024.
- Accepted for publication November 18, 2024.
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