Black men have the lowest 5-year survival from oral and pharyngeal cancers (OPCs) compared to men with other racial/ethnic identities, despite having lower incidence rates [1
]. Surveillance, Epidemiology, and End Results data from 2013–2019 reported that Black men’s relative 5-year survival from OPCs was 54.1% compared to 68.2% among other men [2
]. Since the early 2000s, there has been a national focus on addressing OPC disparities among Black men. Healthy People, an initiative designed to guide health promotion and disease prevention in the U.S., has set a target to increase the proportion of oral and pharyngeal cancers detected at the earliest stage from 29.5% to 34.2% by 2030 [3
]. However, there are few published reports of targeted interventions to reduce Black men’s risk and poor OPC outcomes [4
The elevated risk of OPCs in Black men, with resultant poor outcomes, are primarily due to a lack of awareness about: OPC risk factors, importance of screening, and disease symptoms [5
]. Reasons why Black men may not seek OPC screening include limited financial resources, fear, lack of symptoms, pride, fatalism, and mistrust of dental providers [4
]. Understudied components of increased OPC risk in Black men specifically are structural inequities, such as limited access to dental care, the lack of racial concordance among dental providers, and the influence of bias and discrimination towards Black men, which can reduce the uptake and quality of their dental care experiences, including patient-centered communication about OPCs [8
]. When diagnosed with OPCs, it has been shown that Black men have not received the same types of treatment recommendations as other population cohorts [10
]. Mitchell and Perry revealed that Black men who lacked health insurance and perceived more discrimination had fewer patient-centered communication interactions than White men [11
Even when race is not taken into consideration, dentists do not routinely engage in OPC discussions or screening due to structural inequities such as dentists’ lack of training to address their own discomfort, confidence, limited clinical time to discuss OPCs, and a lack of dental insurance reimbursement for OPC screening [12
]. Another barrier to communication about OPCs is that discussing OPC risk factors of alcohol use, tobacco use, diet and nutrition, and human papillomavirus (HPV) may be uncomfortable for patients and dentists [14
]. For example, a study by Raja and colleagues concluded that dental patients were less comfortable discussing trauma, stress, coping, and living and behavioral patterns than basic demographic information, which has implications for improving dental providers’ understanding of how social determinants may increase patients’ risk for OPCs [17
Taken together, previous research indicates that OPC-related communication among dentists is poor to begin with [12
], and health-related communication in general, including OPC-related communication, is even poorer when it involves Black men [6
]—which directly contributes to disparities in OPCs. The complexities of dentists’ and patients’ discomfort warrant an in-depth exploration of how systems and provider communication should be targeted by multilevel anti-racist interventions, which may alleviate inequities in OPC survival. As a preliminary approach for providing context for targeted interventions in improving OPC communication among Black men and dentists, the purpose of this study was to conduct focus groups with Black men in the Chicago area to explore the attitudes and experiences that Black men may have about OPCs and the role of dentists and healthcare systems to reduce OPC burden.
2. Materials and Methods
This exploratory, grounded theory qualitative study was approved by the UIC Institutional Review Board (Protocol # 2022-0658) to conduct focus groups with Black men in the Chicago area. This theoretical framework is most commonly used when seeking to discover or construct theory from data, systematically obtained through comparative analysis [18
]. A community engagement approach was used to develop a focus group guide based on previous knowledge and experiences of Project Brotherhood, a community-based organization in Chicago, Illinois, with expertise in engaging Black men in cancer research [19
]. Project Brotherhood also led the study recruitment. Inclusion criteria for the study were self-identified Black men, aged 18 and over, residing in Cook County, Illinois.
Purposive sampling was used to identify eligible study participants, with a target of engaging at least 20 men to achieve saturation and meet study aims. Project Brotherhood led the recruitment effort using their community engagement approach of interacting with Black men in everyday settings to build trusting relationships while promoting wellness and healthy behaviors. Men who were recruited for this study were part of Project Brotherhood’s network of men who had previously participated in sponsored community events, research, and/or other health promotion events. Members of Project Brotherhood’s staff contacted men within their network by means of in-person interactions, text messages, and emails and asked them to participate in this study. Focus group participants were asked to provide written consent prior to participation and agreed to be audio recorded. Prior to the start of each focus group, participants were asked to complete a brief questionnaire asking them of their age, education levels (less than high school, high school diploma or GED, college degree, and graduate degree), time since their last dental visit (less than one year ago, 1 to 3 years ago, and 4 or more years ago), and their comfort levels speaking to dentists about oral cancer (not very comfortable, not comfortable, neutral, comfortable, and very comfortable). Those data were analyzed using SPSS Version 25.0 (Chicago, IL, USA) to calculate mean age, frequencies, and percentage distributions.
Trained research personnel affiliated with Project Brotherhood conducted each of the three focus groups, which were recorded and conducted on the Zoom platform to achieve the following aims: (1) gain a better understanding of knowledge about oral cancer among Black men, (2) identify factors that impact experiences when accessing dental care, and (3) elevate opportunities for increased engagement and awareness of oral cancer. Written field notes were taken by a member of the research team. Audio recordings were transcribed verbatim using an online transcription service. Data were cleaned by a member of the research team by reviewing each transcription and matching it to the recorded audio files to ensure accuracy. Using grounded theory as the selected theoretical framework, several rounds of open coding was used to identify themes. In support of addressing bias, data analysis was conducted by another member of the research team that did not participate in the focus groups or cleaning of transcripts [21
]. The cleaned transcripts and field notes were reviewed line-by-line for initial coding and then followed by another round of focused, structural coding that resulted in identifying overarching themes from the responses to each question. Continuous rounds of coding of each document helped to refine themes prior to final analysis and interpretation of focus group findings. Coded data were then grouped into themes using an inductive approach, merging and providing meaning to components or fragments of ideas or experiences. The researcher used Excel spreadsheets to document the frequency of each theme, elevating quotes to support findings. Throughout the analysis process the researcher kept short, descriptive memos to document ideas during preliminary data review and to define codes during coding. Codes and memos were reviewed and discussed by the research team, allowing for modifications and clarifications to the code scheme and definitions. Findings from the final report were shared and formally discussed with the project’s Advisory Committee that included individuals with a range of public health roles, including dentists, dental assistants, community health workers, etc.
A total of twenty-three men (N = 23) participated in three focus groups with a mean age of 46.13 (SD = 13.32). The majority of participants had a minimum education of a college degree (74.9%), had a routine dental checkup less than one year prior to participation (56.5%), and expressed being at least somewhat comfortable discussing oral cancer with their dentists (69.6%). The average duration of the focus groups was 94 min.
Four major themes emerged from the focus group discussions, which are explained below.
Theme #1: Knowledge and perceptions of Black men relating to OPC
Qualitative study findings highlighted that participants’ knowledge ranged from not knowing anything about OPCs to sharing risk factors that contributed to OPC incidence, such as smoking, chewing tobacco, dip products, and alcohol consumption. Participants who had no knowledge of OPCs expressed the desire to learn more by asking questions of the focus group facilitator in real time. Examples of participant responses supporting these findings included “no, it’s new to me….hadn’t heard of it”; and “[I] haven’t heard a lot about it. I understand that people get it from smoking, or you can catch it from smoking. But other than that, I really don’t know a lot about it”.
Beliefs about the importance and relevance of OPCs among participants were largely influenced by their personal experiences and limited exposure to OPC promotion that was geared toward Black men. Personal experiences shaping beliefs were described by participants as “having no loved ones impacted by oral cancer”; “only hearing about the risks of oral cancer because of participation in sports”; and “this is something that we don’t talk about in the community”.
Furthermore, participants shared perceptions about how the lack of OPC promotion efforts geared towards Black men contributed to beliefs that OPC was not as important or as relevant as other cancers. Cancer promotion efforts are often linked to increasing conversations and knowledge within the community. Participants stated things such as “my grandfather had lung cancer…. that’s the closest I’ve come to cancer”. “I just want to say the only reason it’s not important to me is because many others said you don’t hear about it as much”. “There’s plenty of data out there to support colonoscopies and things like that, but I haven’t seen any data to support Black men, or being disproportionately affected, or even just encouraging black men to go get screened for or to prevent this type of cancer”.
Despite the lack of exposure and limited knowledge, participants highlighted their interest in wanting to learn more and how to prevent OPC occurrence. When asked “is oral cancer something that is or has been important to you as a Black man?”, participants collectively shared responses highlighting the importance of knowing about all cancers because of the higher rates of incidence and poorer outcomes impacting their communities.
Theme #2: The role of dentistry in cancer prevention and detection practices
Participants questioned the role of dentistry in cancer prevention and detection practices. Prior experiences with dentists largely shaped their attitudes, beliefs, and expectations about the types of activities that should be performed by a dentist. None of the participants had ever experienced a dentist assessing their knowledge about OPCs and/or educating them about OPCs. These experiences seemed to incite skepticism about whether dentists were trained to detect and/or treat OPCs, whether dentists were only concerned about providing services that generate revenue, and whether detection is a part of a dentist’s role. One participant stated that “dentists look at that as actually your primary care health. They don’t look at oral cancer as part of dentistry….They know about oral cancer, but that’s not their focus”. Another participant stated that “…telling you about oral cancer is not making them money. That’s why dentists don’t get into that”.
These comments reflect the notion that some Black men may not be aware of how much emphasis dentists should place on OPCs, which may affect their personal level of engagement around the topic. For example, there was some support for dentists playing a more formal role in routinely asking about behaviors associated with increased risk for OPCs, including smoking, vaping, and oral sex. Reasons provided included comments such as “they dropped the ball on this one, this is the dentist’s job to ask these questions”; “I would be surprised if they asked because it isn’t widely done, but this should be the norm”; and “yes, they should [discuss OPCs] so they can educate the patients about the dangers”.
Participants shared mixed responses about who should be responsible for providing information to patients about OPCs, based on perceived training of dentists and dental hygienists to detect OPCs. One participant stated that “I don’t think that a hygienist or anyone like that should really be having that discussion with us”. Another participant mentioned that “the hygienists, actually, they are trained to look for oral cancer. Dental assistants are not, so you shouldn’t be having a conversation with them, because they don’t know what they’re looking for”.
There was some mention of receptionists providing educational materials as a catalyst for prompting the patient and dentist to have a formal discussion during visits. Some participants’ responses discussed no preference for who provided the information because of their interest in having increased engagement about the topic. However, while those individuals were open to having others in addition to the dentist and/or dental hygienist initiate discussions, they stressed that it was the dentist’s role to have a follow up conversation to close the loop. For example, “the receptionist can give the pamphlet…something to start the conversation, but the discussion should happen with the dentist”.
Theme #3: Contexts for addressing Black men’s oral health
A key objective for the focus groups was to explore factors that are associated with how Black men perceive their dental care experiences, what seems to work, and what seems to not work. For example, a range of questions were posed to uncover participants’ attitudes about how providers address their concerns and other issues that may be important to them such as race and gender. Several participants stressed the importance of having greater representation of Black dentists in the field—as many of them expressed seeking out Black providers for care. There was mention of feeling more comfortable with Black providers due to a sense of relatability.
As told by one participant, “relatability between me and my provider is important. I don’t want to feel judged about my behaviors”. However, participants also shared both favorable and unfavorable experiences with providers despite being the same race. Of importance was having providers that are willing to develop a relationship with patients by taking the time to get to know them and assess their knowledge by asking questions in a non-judgmental, inquisitive manner. This also coincided with participants stressing the importance of chairside manner, including dentists’ body language, word choices, and overall demeanor. Participants expressed wanting to be “treated by someone that cares and makes you feel comfortable”. “When it comes to a doctor, I [want] somebody that gives a [expletive] about me, or I feel that from them. If I don’t get it the first time, then I don’t go back and I look again”. Another participant stated that “I’m really selective about [the] dentist…I come across somebody who shows a sincere concern about my wellbeing and about my health, you know what I mean, I’ll probably [be] more comfortable talking to that person”. It was also mentioned that “I think that [body and facial expressions] matter for any situation, especially talking to the doctor because it is the person that you really need to confide in and need to trust what they say is accurate. Body language and facial expressions [are] huge”. This participant went further and told a story, stating that, in one encounter with a doctor, “…everything was kind of, I wouldn’t say a joke, but it was kind of like some sort of laughable remark to everything. And it caused me to not see them again because I need to have real conversations and I didn’t need to have someone trying to make light of everything that we talked about”.
Provider knowledge about Black men’s health was also mentioned as being important. Several participants shared examples regarding the need to seek out providers that possess an understanding of the historical health behaviors of Black men and the behavioral risks associated with Black men’s health. As one participant stated, some dentists “only pull teeth and don’t help save your teeth, [and don’t] understand the trauma behind what they are doing”.
Additionally, participants discussed how negative societal perceptions, coupled with stigma about Black men, resulted in inequitable treatment practices, system mistrust, and varied levels of comfort among Black men when engaging the healthcare system. Participants shared sentiments of being regarded as hyper-aggressive and/or intimidating to non-Black individuals before any interactions even take place. One participant stated that “there’s usually that momentary period, first time visit, that you have to get through the preclusion with other races. Even some of our own sometimes. As soon as they see that you’re Black, you come in, they got to feel you out as much as you’ve got to feel them out. That’s something that most other races don’t have to deal with. So as Black men, that’s a measure that we ourselves have to put out. I mean, just walking down the street, we deal with that. So, you’re walking to a doctor’s office and even if you coming in with the best insurance, whether they know it or not, there’s still that period of time that has to happen for people to get comfortable with each other”.
Theme #4: Media that support engagement with Black men about OPCs
Participants spoke of the importance of using multiple methods and media to ensure adequate reach within and across communities. As one participant shared, “my thing is cast the net wide….try every platform, every avenue, or every structure that you possibly can, provided that you have time, resources, and connections”. Examples of media and methods mentioned included the use of educational flyers, pamphlets, posters, and social media. Providers were encouraged to think of using traditional settings to push out educational materials and messaging like the doctor’s office waiting rooms and non-traditional settings where Black men convene, i.e., barber shops and churches.
Several participants also discussed the role of peer-to-peer learning and sharing among Black men and women that could support building awareness about OPCs in the community. The more these individuals are engaged and learn about OPCs, the more they can serve as messengers to others. Black women were cited as being integral in the promotion of health awareness and health seeking behaviors among Black men by one participant who stated “I think that you can’t really reach Black men fully without Black women within that as well. You know, everybody listens to their grandma or their mom. They look to them for health information. So I think that’s a super important point”. In addition, some participants talked about how their participation in the focus group helped to increase their awareness and how having more forums like it could be beneficial. An example of a supporting comment was “I think that more of these would be positive to spread the word and increase the focus around the awareness of oral cancer. And so for me, yeah, I think it would be positive to grow this in scale just to bring it to more people”.