Abstract
Objectives
Communication barriers, such as channels, comfort, and location, can negatively impact Black prostate cancer survivors’ experiences and health outcomes after treatment. Addressing these barriers promotes a survivor-centric approach that views survivors as active partners in their care. This study explored the communication preferences of Black prostate cancer survivors, focusing on preferred channels, sources, and locations for enhanced quality of life.
Design
Using grounded theory methodology, we conducted engaged in-depth interviews with 7 Black prostate cancer survivors, centering on their post-treatment experiences. We analyzed participant transcripts to develop codes and themes. Communication accommodation theory (CAT) was applied to examine how survivors adapt their communication styles to navigate barriers and improve their quality of life. CAT helped identify key patterns of survivors’ convergence and divergence in their communication with healthcare providers, crucial for developing survivor-centric communication strategies.
Results
The analysis revealed the importance of acknowledging cultural and racial perspectives in post-treatment survivorship. Themes extracted from the transcripts included communication barriers, preferences for information channels, and favored locations for sharing information. Survivors expressed a preference for a balance between face-to-face interaction and telehealth, with environments that provide safety and support playing a key role in encouraging vulnerability and open dialogue. Inclusive healthcare practices were seen as essential in empowering Black survivors to engage in meaningful communication without feeling silenced or undervalued, thus fostering a dignified quality of life.
Conclusion
Tailoring post-treatment communication practices to incorporate cultural sensitivity, inclusive healthcare, and safe spaces is pivotal to supporting Black survivors. These findings provide a pathway to improving survivors’ experiences and empower them to actively shape their survivorship journey. Moreover, they highlight Black men’s need for trustworthy communication with healthcare providers and peers during the post-treatment period, emphasizing the importance of direct, personalized interactions.
Introduction
Black men in the United States face a significant and disproportionate burden of prostate cancer (CaP), including mortality rates notably higher than their White counterparts.1-3 Black men also receive more aggressive disease diagnoses 1 and encounter more limited access to pivotal CaP treatments, leading to prolonged delays between diagnosis and treatment. 4 These delays in diagnoses and access to treatment observed in Black men underscore healthcare access barriers that may go beyond the direct costs of care5-7 to result in distant metastases and poor prognoses, affecting quality of life and survivorship.
Post-treatment disparities in survivorship care are a significant concern for Black CaP survivors, who often face unique challenges that extend beyond the initial treatment phase. These challenges include limited access to culturally sensitive follow-up care,8,9 communication barriers that hinder effective patient-provider interactions, 10 and a lack of support systems that address the emotional and psychological needs of survivors.10,11 As a result, many Black men struggle with unmet needs in their post-treatment journey, which can negatively impact their overall quality of life and long-term health outcomes. 9 Addressing these post-treatment disparities is essential for ensuring that survivorship care is equitable, comprehensive, and responsive to the specific needs of Black CaP survivors. 8
The factors contributing to CaP health disparities, as with other areas of healthcare, are multifaceted and complex. They may stem from a broader mistrust of medical professionals12,13 or from failure on the part of clinicians and researchers to examine Black men’s unique communication preferences for receiving vital health information. 14 Across the cancer continuum these communication challenges are compounded as both patient and clinician navigate the complexities of expressing their respective needs and perspectives. The ability to bridge this divide highlights the unique interactions and experiences of those involved, often without making necessary accommodations. 15 Insights into these dynamics, drawn from the voices of Black communities, remain elusive and largely unexplored. However, the discovery of improved care and outcomes when Black men are given a voice—without needing to adjust their communication style—may bridge these gaps and transform the landscape of CaP survivorship care.
Research suggests that fostering inclusive and responsive communication between healthcare providers and their patients who are racial and ethnic minority men holds the key to improving medical encounters. 16 However, the full potential of patient-centered communication can only be harnessed when healthcare providers and researchers proactively seek to understand and respect these men’s communication preferences,17-19 thus breaking the cycle that perpetuates the disparities. 16 The Communication Accommodation Theory (CAT) provides a validated theory to explore how individuals adjust their communication to either create, maintain or decrease social distance.20,21 CAT offers a valuable understanding of the impact of such accommodating communication, the underlying motivations, and the consequences of interpersonal interactions. 21 The intimate challenges arising from CaP, including issues related to urinary incontinence,3,22 sexual function, 23 emotional well-being, 24 and survivorship care wellness,3,24 underscore the importance of inclusive communication that helps survivors manage self-esteem, confidence, and stress, ultimately promoting and sustaining healthy and fulfilling relationships. The goal is for medical and research settings to ensure that every patient, regardless of their background, can fully participate in their survivorship journey. The question is how to achieve this, given the sparse evidence currently available about Black men’s healthcare communication needs and preferences.
This study hopes to better understand the communication preferences and needs of Black men post-treatment of CaP. The aim is to improve CaP survivorship care by improving communication practices, fostering more collaborative and culturally supportive healthcare experiences. By unravelling the intricacies of Black men’s communication preferences, this may pave the way for more equitable, timely, and effective CaP care, ultimately striving to improve outcomes and quality of life for a population disproportionately affected by this devastating disease.
Materials and Methods
This study presents a qualitative exploration of CaP survivors that adheres to the Consolidated Criteria for Reporting Qualitative Studies (COREQ). 25 Before conducting all interviews, DF (male, Black) chose this topic due to his interest in the science of survivorship that emerged during his postdoctoral training. DF underwent training in interview techniques such as open-ended questions, active listening, and probing under the guidance of an expert qualitative methodologist.
Participants
We invited Black men in the United States who were CaP survivors aged 40 years or older to participate in this study. Participants were considered survivors based on the American Cancer Society definition, which includes individuals from the time of diagnosis to the end of life. For this study, we specifically enrolled survivors who had completed CaP treatment such as hormonal treatment, radiation, or surgery within the past 10 years and who had been at least 2 years post-treatment who no reported recurrences. Participants had no prior relationship with the research team before study commencement. However, they were informed about the researchers’ goals, including the personal and academic motivations for conducting the study, to ensure transparency and build trust. Community scientists and medical professionals, such as medical oncologists and radiation oncologists, helped with recruitment by sharing the study flyer with Black CaP survivors connected to their clinics.
The planned sample size for this study was 30 Black survivors, a figure chosen to allow for in-depth exploration of the participants’ experiences while ensuring sufficient diversity within the sample. Recruitment of participants applying snowballing techniques concluded when data collection saturation was reached, meaning that no new themes or patterns were emerging from the interviews. Saturation was determined and confirmed through iterative data analysis, as described by Charmaz, where the research team continually reviewed and compared participant responses. As similar patterns and themes began to consistently emerge, the team deemed that saturation had been achieved.
Procedure
Participant Interview Guide: Medical Professional and Survivor Communication.
Coding and Data Analysis
We selected a grounded theory approach for the data analysis. This approach involves systematic steps to ensure analysis is rigorous and considers the relationship between the researchers and the participants during the co-construction of data. This process involves 3 methods, including micro coding, open coding, and axial coding. Micro coding procedures begin with reading the transcripts word by word several times to identify codes, while the readers, as they read, search for a particular meaning of the codes. Two investigators (DF, EF) were tasked with conducting the micro coding process. Each investigator independently reviewed the data line by line, ensuring an unbiased analysis. Line-by-line open coding continued with reading through the data several times with the purpose of creating tentative labels for chunks of data based on the researchers’ interpretation. The 2 investigators then engaged in discussions about their findings and worked through codes and themes until agreement was reached. Comparison between the 2 investigators was necessary to refine conceptual categories. Axial coding then allowed the researchers to delve deeper into solidifying constructs and categories as well as to identify relationships among the categories. Once the micro coding was completed, a qualitative analysis expert was brought in to review thematic codes emerging from the open coding process. After their review and the identification and curation of categories and subcategories, we completed the third coding process: axial coding, exploring the data relating to a major category or construct. We used NVivo 14.23.0 software for Mac for the exploratory thematic analysis, which allowed the study team to successfully code and identify Black CaP survivors’ communication preferences.
Trustworthiness
To ensure the trustworthiness of the data, we followed 2 initial key processes: peer briefing and member checking. For peer briefing, we shared the de-identified interview transcripts with qualitative research experts, who commented on them and reviewed the curated codes and subcategories being used for data analysis. For member checking, we offered interviewees the opportunity to review their transcribed interviews to ensure that the interviewer/transcriber (DF) had captured their experience in a credible manner. DF addressed his own subjectivity by writing his reflexivity statement and writing field notes and interpretive memos to go with the transcripts. These trustworthiness and credibility processes served to ensure the validity and confirmability of the study results.
Results
In total, we interviewed 7 men with a mean age of 72.7 ± 6.9 years (range, 64-83 years). Most were married (n = 4) and had some college education (n = 3). Various CaP treatment options were represented in this group: 4 participants had opted for surgery and 3 for radiation treatment, while 1 participant had received both treatments.
Respondent Snippets, Extracted Codes, and Theme Identification.
Barriers to Communication
In the wake of Black men’s CaP experience, survivors reported significant obstacles, including misalignment in communication styles and channels with healthcare providers. Applying the CAT, these barriers can be seen as instances of under-accommodation, where healthcare providers failed to adjust their communication to meet the needs of the survivors, leading to misunderstandings and frustration. Additionally, racial bias was identified as a contributing factor to these communication barriers, further amplifying feelings of being muted and disregarded within the healthcare system during their CaP survivorship journey. “It seemed like I was a forgotten soul after my prostate was removed. Every time I shared new options to add toward my care, I felt unheard and excluded from my own treatment.” (Participant 2) “As far as the doctors and the nurses I encountered, that I have been dealing with have been ok. We don’t expect them to wrap their arms around you or whatever the case may be, but at the same time we expect them to do what they’re supposed to do, and they treat you as if you are a patient.” (Participant 5)
One participant emphasized how inadequate insurance coverage can hinder effective communication and access to care, leading to a lack of help. “I have good insurance, they stick you now in times when it goes into the payout, but that doesn’t bother me, because I go directly to the source, but at the same time, people that I do know that doesn’t have these kind of insurances, it is pitiful out here because they don’t get help at all, they go through a non-denial (claims) of this and that, by time they do that a lot of times people have gotten past the point of help. Only in America is healthcare a business. It’s a business. If you’re not in that business, Mr. Gentleman, you can be left behind. You can be left behind.” (Participant 7)
These men shared their voices, revealing a narrative of systemic challenges that go beyond mere medical interactions, advocating for a more compassionate and comprehensive approach—one that acknowledges the intricate interplay of social, cultural, and emotional dimensions, including the impact of racism. In reviewing these statements, we encounter a critical juncture in which the vitality of embracing survivors’ holistic well-being comes to the forefront. The next 3 themes bear witness to the voices of these Black men as they call attention to the fundamental channels through which they seek to receive essential information.
Channels of Communication
The clear and resonant voices emerging from the collective narratives of Black men highlight a resolute preference for direct, face-to-face communication with healthcare providers. Convergence within CAT can explain these preferences, highlighting the need for healthcare providers to adapt their communication channels to align with survivors’ preferences, thereby fostering a more effective and empathetic interaction. These survivors articulate a pressing need for information that holds the potential to elevate their quality of life.
This quote illustrates survivors’ desire for direct communication with healthcare professionals as well as relatable personalized resources from men who have experienced similar challenges during the prostate journey. I think that would have been helpful. Sit down with the doctor, or even have a website or a video where you watch a video of people who have gone through the same situation with their prostate cancer such as leakage, sexual drive, and all that. One thing for certain, the way you were, you may not be that way afterwards. (Participant 3)
Another survivor continued to confirm these sentiments. “I feel like if I would have had that [direct face time], I would have been talking to a professional.” (Participant 2)
The request for visual learning through platforms like YouTube showcases a preference for detailed explanations with imagery for understanding complex medical procedures and treatments. “I’ve seen things on YouTube. I’ve seen them explain the mixing of the medicine. I like the picture of what is actually taking place for me. Verbally, you are listening and watching and so forth; from an educational standpoint I think that is an excellent method.” (Participant 4)
The following 2 interpretations demonstrate that Black men seek opportunities of fellowship with other survivors to gain comfort and support, which appears just as valuable as personal contact with health professionals. “I would have made that [support groups] a part of my life.” (Participant 7), while another survivor expressed, “I feel like if I would have had that, I would have been talking too with a group of people who have experienced things of what I was going through.” (Participant 2)
As we follow these journeys, the circumstances show them traversing obstacles that emerge during post-treatment. Their perspectives not only illuminate but also resonate with the essence of the human experience, revealing the multifaceted challenges Black CaP survivors face. In the next theme, we delve into the comforting embrace of communication, a vital cornerstone in Black survivors’ path toward navigating these challenges.
Comfort of Communication
The level of comfort survivors acknowledged during interactions was key. Over-accommodation was noted when healthcare providers excessively simplified information, which sometimes made survivors feel patronized. While other survivors demonstrated unique perspectives resulting in a pattern of trust and familiarity (Convergence within CAT). The act of survivors transmitting information through their recognition of friends and family members as their preferred conduits for sharing information prompts us to explore the complex dynamics at play.
The comfort of communicating is described by a survivor who expressed, “Your friends, I got one of my best friends. We do all our walking together and communicate together.” (Participant 1) Another survivor elaborated more on communication comfort, “I like with my friends setting, we talk to one another, we only got a few of us left, I got one friend, we got drafted together. He and I still talk.” (Participant 5) The presence of friends was prominent, but some survivors leaned on others, “I go to my wife, and then after that I talk to my friend because she can’t hold water.” (Participant 3) Some survivors found themselves alone during this journey, “I am the first 1 in my family that we know of that has experienced this prostate problem. So, no one else I really communicate with.” (Participant 2)
These narratives reveal how survivors find emotional comfort in communicating with those they trust, whether friends, family, or spouses. The importance of trust, familiarity, and emotional support emerges as a cornerstone of effective communication, highlighting how these elements contribute to the overall well-being of Black CaP survivors. This delicate equilibrium between personal connection and convenience stands as a testament to the intriguing nuances. Among these is the preferred location of healthcare communication, discussed in the next section.
Location of Communication
The poignancy of Black CaP survivors’ health discourse unveiled compelling reasons for discussing health concerns. When discussing the ideal location for such communication, our participants echoed a powerful preference for open dialogue within the confines of a doctor’s office or the backdrop of a nurturing group. This preference reflects the importance of convergence in communication settings, where adjusting the location to meet Black survivors’ comfort can enhance the sharing of their vulnerabilities and satisfaction with the encounter.
A trend that emerged was that our Black survivors prefer talking directly to their doctors. They value in-person conversation more than talking on the phone or using telehealth communication methods.
6 months, once or twice a year, unacceptable. Not when your manhood is being taken away. I need a doctor to talk directly to me because over the phone and Zoom leave you helpless. Doctors should want to have speak about these issues face-to-face. (Participant 2)
Some things just need to be said in-person, especially when you’re experiencing leakage and bladder control problems. I have no problem accepting information from the comfort of my home, but some conversations are just meant to happen when you are looking a person in the eye. Hell, I may even cry, this prostate thing, so disruptive and inconvenient. (Participant 5)
The following quotes provide insights exploring the intricate interplay between environment, trust, and personal experience. “I think the doctor’s office first, but doctors sometimes do not have time to address concerns.” (Participant 4). Another survivor expressed the presence of seizing the moment, “I think if I was really somewhere there was a support group, especially Black men that have encountered the same procedures or experiences I had. I would take full advantage of that. Full advantage of that.” (Participant 2). The eagerness to participate and gain valuable information to inform other family members was illustrated by a survivor, “Anything with shared information, with other Black men that experienced, or might have the potential of experiencing, what I have experienced. Absolutely, I would participate in that. I would welcome that. I got 2 sons and a son-in-law to look out for now.” (Participant 1). The intrinsic motivation to interact with other Black survivors in locations was clearly stated, “I would take it [support groups] 100%. I would love to do it; if I had that, I would love to participate and interact with other Black men 2 or 3 days a week.” (Participant 7).
For locations of communication, the participants unanimously favored a doctor’s office and supportive group gatherings that could offer Black survivors a unique sense of security. The dynamic interplay between their comfort zones, vulnerability, and their battle against CaP unravels layers revealing a link between environment and trust.
Discussion
The delivery or receipt of communication messages plays a vital role in health outcomes. 28 Building trust and rapport can alleviate feelings of being silenced and undervalued and thus ensure that all patients, including Black men, receive equitable and dignified care. In this study, we encouraged Black CaP survivors to voice their concerns, preferences, and questions concerning health communication about their own care and their post-treatment wellness. The experiences they shared highlight the importance of a survivor-centric approach that incorporates cultural sensitivity, safe spaces for communication, and value toward personal relationships.
The participating Black survivors reported post-treatment barriers to effective communication during their survivorship journey.29,30 Some expressed feelings such as being overlooked, undervalued, and silenced, with the communications they received during care coordination often making them feel like they were reduced to mere bodies in hospital beds. These experiences, though specific to some participants, highlight instances of under-accommodation and point to the broader need for systemic advocacy to ensure more equitable and compassionate healthcare.
To recognize and respect the unique cultural and racial perspectives of CaP survivors, especially Black men, cultural sensitivity remains paramount. 31 Open and respectful communication in the post-treatment period allows for empowerment.18,32 Thus, greater awareness on the part of healthcare professionals of biases or stereotypes that may impact patient-provider interactions is called for. In fact, driving positive change to correct communication barriers and systemic biases on patient experiences may require raising awareness among healthcare professionals.4,33 It is possible to achieve better care coordination through a collaborative approach that involves survivors in decision-making processes.34,35
Timely communication plays a pivotal role in improving the post treatment wellness for CaP survivors. For Black men who prefer face-to-face communication, personalized interactions during post-treatment care are vital. 36 These delivery preferences when acknowledged and applied using convergence principles, foster effective and empathetic interactions. The transitional period after treatment can be overwhelming for Black survivors, and our participants expressed a strong desire for relevant information and meaningful opportunities to actively participate in their own care. This need for active engagement was highlighted by their preference for support groups and their emphasis on being heard and seen by their healthcare providers. To enhance the health and wellness for this population during this critical transition period, proactive healthcare systems will need to provide assistance and resources that acknowledge these needs.
Underscoring the significance of trust within personal relationships, 37 friends and family were the participants’ first choice 38 for sharing healthcare information. The value they placed on direct communication reflects the value placed on direct interactions in healthcare discussions.17,37 Black men are, however, willing to communicate from the comfort of their homes. In either case, a survivor-centric approach is needed. Survivors must skillfully balance their communication to avoid over-simplifying while effectively aligning their communication channels with others, recognizing that interactions with physicians, family, and friends yield different outcomes. Consideration of flexible communication methods that respect survivors’ preferences and comfort levels may ultimately improve the overall post-treatment experience. Meanwhile, the participants’ acknowledgment of the importance of support networks also signals the value of personal relationships in enhancing survivor engagement and quality of life.
Establishing environments in which survivors feel comfortable sharing their vulnerabilities and seeking guidance should be a priority for healthcare providers. Black survivors from our study predominantly indicated that a secure environment such as a doctor’s office or support group setting 39 was necessary for them to express health concerns or discuss symptoms. This underscores the importance of creating safe and supportive spaces for discussing sensitive health topics, as well as the benefit of shared experiences and the value of peer support. Healthcare providers will need to recognize the value of specific locations and environments for communication in order to develop communication strategies based on survivor preferences.40,41 Understanding where survivors feel most comfortable can lead to more effective and meaningful health conversations.
Strengths and Limitations
Strengths
This study provides insights into the communication experiences of Black CaP survivors, a population that is often underrepresented in research. By employing a qualitative approach, we were able to explore the nuanced and deeply personal experiences of survivors, offering a rich understanding of the challenges they face in post-treatment care. The use of Communication Accommodation Theory (CAT) allowed for an in-depth analysis of how survivors adapt their communication styles and how healthcare providers respond, highlighting areas where improvements can be made to better meet the needs of this population.
Limitations
One limitation of this study is the relatively small sample size, which, while sufficient for qualitative analysis, may limit the breadth of experiences captured. We acknowledge that the focus of this study on men who had completed their treatment may have introduced a selection bias, as these individuals might be presumed to exhibit higher levels of compliance and communication engagement; however, it is important to note that we do not have evidence to confirm whether these traits are indeed more prevalent among men who completed treatment compared to those who did not. Additionally, the participants were recruited from across the United States and may not fully represent the experiences of all Black CaP survivors across different regions or healthcare settings. These factors could limit the generalizability of the findings to broader populations. However, as Charmaz (2006) notes, the concept of generalizability is not typically the primary focus in qualitative research, which is more concerned with depth, context, and the exploration of particular phenomena. This study is exploratory in nature, aiming to generate new insights rather than produce findings that can be universally applied.
Despite these limitations, the study’s focus on a specific and underexplored demographic provides a crucial foundation for future research. It highlights the need for more inclusive and culturally sensitive survivorship care practices that can be tailored to the unique needs of Black CaP survivors.
Conclusion
This study highlights the importance of recognizing and addressing the unique communication needs of Black CaP survivors. By focusing on the survivors’ experiences and preferences, particularly their desire for personalized, face-to-face interactions and active participation in their own care, healthcare providers can foster more effective and empathetic survivor-centered care. While our findings underscore the value of peer support and the need for emotional and informational resources, they also suggest that healthcare systems must be mindful of the barriers that can impede equitable care. Recognizing Black CaP survivors as active partners in their care can enhance the posttreatment environment, leading to stronger connections between survivors and healthcare providers. Resources like support groups can play a crucial role in equipping survivors with the knowledge and tools needed to navigate their survivorship journey effectively.
Footnotes
Author Contributions
Declaration of Conflicting Interests
The authors listed above declare no financial or non-financial conflicts of interest related to the subject matter discussed in this manuscript.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Congressionally Directed Medical Research Programs’ Prostate Cancer Research Program (Award No. W81XWH-22-1-0968) and the National Cancer Institute (Grant No. P30 CA01508). The contents of this manuscript are solely the responsibility of the authors and do not necessarily represent the official views of the US Department of Defense or the National Institutes of Health.
Ethical Statement
Data Availability Statement
The data supporting this research will be made available upon request to ensure transparency and facilitate further exploration. Interested parties may contact the corresponding author for access to the dataset.
