“A lot of the times, patients really don’t know what questions to ask:” Communication perspectives of Black patients with advanced lung cancer

Abstract

Objectives:

Patients with advanced (stage III-IV) lung cancer carry a significant symptom burden, and Black (i.e., the broad African diaspora) patients generally experience worse symptom management relative to White patients. Clinician-patient communication is one understudied factor that can contribute to symptom management inequities. However, Black patients’ experiences discussing symptoms with their oncology clinicians are understudied. This secondary analysis sought to explore Black patients’ experiences with symptom management communication, and identify areas of improvement.

Methods:

We conducted semi-structured interviews with Black patients with advanced lung cancer (n=26; 62% women; Age M=65.0; M=16.6 months post-diagnosis) in two thoracic oncology clinics in the Mid-Atlantic. Interviews were recorded, transcribed, and analyzed via inductive coding to identify themes relevant to clinician-patient communication.

Results:

Participants expressed both positive and negative communication experiences throughout their cancer journey, including situations where their racial identity impacted comfort with communication. Positive (e.g., timely responses) and negative (e.g., confusion about side effects) experiences with care shaped communication dynamics. Communication barriers included disclosure hesitancy, not knowing what questions to ask, and feeling unheard. Participants highlighted patient behaviors (self-advocacy), clinician behaviors (honest and transparency), and the presence of support people helped to promote communication. Suggested strategies for improvement included facilitating communication through informational resources and clinician training to provide culturally competent communication in cancer care.

Conclusions:

Communication plays a key role in symptom management for Black patients with advanced lung cancer, and is influenced by both patient and clinician factors, as well as the larger historical context of racism in medicine. Future work should further examine multilevel drivers of communication for intervention.

Practice Implications:

To enhance symptom communication with Black patients with advanced lung cancer, there is a need for clinician training focused on cultural humility and awareness, and for patient informational resources.

1. Introduction

An estimated 226,650 people in the US will be diagnosed with lung cancer in 2025.¹ Patients with lung cancer experience significant symptom burden, including dyspnea, cough, pain, and sleep disturbance.² Black patients are often diagnosed with later-stage disease, leading to higher symptom burden.³ Black (vs. White) patients with cancer in the US report similar symptom frequency, but more severe and burdensome symptoms. These inequities reflect longstanding and multilevel discrimination.^4,5 Black patients consistently experience worse clinician-patient communication compared to White patients.^6–8 For example, among women with breast cancer, discrimination, disrespect, and unclear communication were reported more often by Black than White women.⁹ Inequitable communication and associated outcomes are influenced by patient (e.g., mistrust), clinician (e.g., conscious and unconscious racial stereotyping and bias),^13,14 and system-level (e.g., missing religion in care) challenges.

Despite documented disparities in clinician-patient communication, there is little research focusing specifically on Black patients’ preferences for symptom management communication. Prior research establishing evidence-based communication practices (e.g., eliciting and valuing patient opinions, explaining pros/cons of options, supporting the patient in deliberation)¹⁰ tends to focus on primarily White samples.¹¹ However, Black patients report cultural differences in medical communication preferences;¹² Black patients place high value on acknowledging emotions during shared decision making,¹³ and some evidence supports racial concordance for high-quality communication.^14,15 Similarly, prior work focused largely on documenting communication inequities, rather than understanding Black patients’ experiences. For example, Black patients’ perceptions of communication quality do not align with observer-coded ratings.¹⁷ Furthermore, addressing communication factors specific to lung cancer such as lung cancer stigma related to smoking is also important to address.¹⁶ To design effective interventions^17,18 promoting effective and equitable communication for Black patients with cancer, further research is needed to identify modifiable communication factors Black patients desire in symptom management communication.

In summary, communication experiences of Black patients with cancer are under-addressed, presenting barriers to equitable symptom management. The current study expanded on prior work by examining Black patients’ experiences with symptom communication in advanced lung cancer care through semi-structured qualitative interviews. Given its substantial symptom burden and associated stigma, focusing on lung cancer provided a unique context for the study. We utilized an inductive qualitative approach to identify patients’ observations about clinician-patient communication from the “ground-up,” and identified areas that could be targeted in future intervention studies.

2. Methods

2.1. Procedures and Participants

The present study is a secondary analysis of qualitative exit interview data from an observational study of shared decision-making about palliative care among Black patients with advanced lung cancer. ¹⁹ Qualitative data collection and analyses align with the Consolidated Criteria for Reporting Qualitative Research (see Supplements 1 and 2 for detailed procedures). The Institutional Review Board at Georgetown University (#00004381) approved this study.

Between August 2022 and January 2023, participants were recruited from three sites within a Mid-Atlantic Comprehensive Cancer Center Network. Eligibility criteria, recruitment, and procedures are published elsewhere.¹⁹ Briefly, we used convenience sampling, recruiting patients scheduled for thoracic oncology appointments. Eligible participants were aged ≥18; English-speaking; self-identified as Black or African American; receiving care (including active therapies, adjuvant therapies, palliative therapies, and surveillance) for advanced (Stages III-IV; extensive) lung cancer; able to provide informed consent; and not in hospice.

All participants were invited to complete semi-structured qualitative exit interviews to assess the study’s feasibility and acceptability (Supplement 3). Across interviews, participants frequently discussed experiences with and recommendations for communication. Although communication was not the primary target of the interviews, it was organically raised by participants and identified by the research team for analysis.

Three female research team members (2 Bachelors-level research coordinators, 1 doctoral-level research faculty member) with prior training and experience in qualitative interviewing conducted semi-structured interviews in-clinic, by telephone, or via secure video call. Interviews lasted 34 minutes on average (range: 15–77 minutes), were audio-recorded, and transcribed verbatim. Interview participants received a $10 gift card.

2.2. Data Analysis

We utilized an inductive qualitative analytic approach.^20–22 Six study team members (2 Bachelors-level research coordinators, 2 Masters-level graduate research assistants, and 2 doctoral-level research faculty members) reviewed five randomly selected transcripts and collaboratively developed a detailed codebook consisting of data-driven codes.²³ Next, all transcripts were independently coded in Dedoose by two of three raters. Raters received didactic and experiential training in qualitative coding from one of the study PIs who has extensive experience in qualitative research. Coding disagreements were resolved through discussion until consensus was reached; if agreement could not be reached between the two coders, the two co-PIs served as tie-breakers for final resolution. For additional information about the codebook development process, positionality of study team members, coding procedures, reflexivity activities, and data saturation, see Supplement 2.

3. Results

3.1. Participant Demographics

Of the 30 enrolled patients, 26 (87%) completed the interview (Table 1). One participant declined audio-recording due to confidentiality concerns, resulting in 25 audio-recordings and 1 set of interview notes included in the analysis.

Table 1.

Participant demographic characteristics (N=26).

Sociodemographic Characteristics	M(SD) or N(%)
Age (years)	65.27 (7.84)
Gender
Man	10 (38%)
Woman	16 (62%)
Education
Less than college degree	20 (77%)
College degree or greater	5 (19%)
Missing	1 (4%)
Employment status
Currently working	7 (27%)
Not working	19 (73%)
Annual household income (USD)
<$75,000	17 (65%)
≥$75,000	1 (4%)
Don’t know/prefer not to answer	8 (31%)
Private health insurance
Yes	11 (42%)
No	15 (58%)
Public health insurance
Yes	20 (23%)
No	6 (77%)
Cancer type
Stage III NSCLC	5 (19%)
Stage IV NSCLC	18 (69%)
Extensive stage small cell lung cancer	3 (12%)
Time since diagnosis (months)	16.6 (19.8)

NSCLC = non-small cell lung cancer

3.2. Themes

Qualitative analysis identified four themes, each with 2–4 sub-themes. Table 2 provides exemplar quotes from participants; Supplement 3 provides an extended table with additional data.

Table 2.

Representative quotes.

Theme	Sub-Theme	Quote
Experiences with care	Timely responses	“When my bloodwork came back a couple times, and certain counts I was waiting on, those docs called me at home to let me know. Man, I thought that was wonderful... They didn’t wait for me to call them, have a secretary tell me this and that. [DOCTOR] [c]alled my personal number and told me what the figures of the counts were. Man, and that was perfect.” (Participant #7, 68-year-old man, diagnosed 1–2 years ago)
	Confusion around side effects and care team roles	“I didn’t know [diarrhea] was gonna be one of the side effects. I was in the doctor's on Monday because I’m like, what the heck is going on… I really didn’t attribute [my diarrhea to my treatment] till I realized this is a question that [they’re] asking. Do you have diarrhea- like why are they asking me? And like, oh, that must be a side effect. I didn’t know that’s what I really should be looking out for.” (Participant #30, 73-year-old woman, diagnosed 5+ years ago) “My doctor told me that I would be seeing these other specialists, [but] I don’t know what their roles are as far as my treatment. I mean, right now, I’m seeing three, maybe four doctors, and the only doctor that I really know what their role is is my primary oncologist. The rest of them, I’m questionable. I don’t know what their roles are and how they can help me.” (Participant #6, 65-year-old woman, diagnosed 5+ years ago)
Barriers to communication	Disclosure hesitancy	“I feel the African American community, a lot of people don’t want to talk to their doctors or just don’t feel comfortable with giving all their information to the doctor. I think that’s the biggest thing holding people back.” (Participant #18, 74-year-old man, diagnosed 3–4 years ago) “But as African American people, we’re so used to, ‘Oh, we'll be okay. Just put a Band-Aid on it.’ Not knowing the Band-Aid is only masking what the real problem is, you know what I mean?” (Participant #10, 57-year-old woman, diagnosed <1 year ago)
	Not knowing what questions to ask	“[It can be scary] not knowing the questions to ask. And then they're home or wherever, and they don’t know. They leave knowing less than they did when they came.” (Participant #21, 69-year-old woman, diagnosed 5+ years ago) “A lot of the times, patients really don’t know what questions to ask... so if I'm the patient and I've not done any research at all, I'm not going to be able to ask-- I don’t think any intelligent questions that’s going to make me feel more comfortable or make me feel or be able to determine how this treatment is working with me.” (Participant #4, 77-year-old man, diagnosed 5+ years ago)
	Feeling unheard	“When someone isn’t listening, you can feel it. You can feel when someone– in their brain, they’ve checked out of that room and they’re checking into another room without physically being there. It makes a difference.” (Participant #10, 57-year-old woman, diagnosed <1 year ago) “I [told DOCTOR] that I had stopped smoking cigarettes six or seven years ago. He was on the computer while I was talking, typing. And then he said, ‘You’re going to have to stop smoking cigarettes.’ And I was like, ‘I just told you I did. Were you listening?’” (Participant #21, 69-year-old woman, diagnosed 5+ years ago)
Facilitators of communication	Family members/ support people	“I got a lot of information from [DOCTOR]... That’s why I needed my brother or my nephew in there with me because it was too much information to consume. But it helped because he was there. He could say what I didn’t remember.” (Participant #3, 74-year-old woman, diagnosed <1 year ago) “So at my visit, I grew my entourage because I [went] and my husband and my daughter in law and my son. [E]verybody had a question. But everybody doesn’t have that.” (Participant #30, 73-year-old woman, diagnosed 5+ years ago).
	Self-advocacy	“I can be aggressive sometimes, especially when it comes down to me and my health. I want answers, and I will ask you questions because I mean, you're my doctor, so I'm expecting something.” (Participant #2, 68-year-old woman, diagnosed <1 year ago) “Be more observant as to what’s going around. Know what I mean? Just because it coming out your mouth don’t necessarily mean you’re right.” (Participant #13, 67-year-old man, diagnosed <1 year ago)
	Honesty and transparency	“[DOCTOR] was always honest. If they don’t know something, he’ll tell me that, ‘Well, we don’t know why is happening. So I need you to come in, and we going to run some more tests.’ And I appreciate that instead of him just saying, ‘Well, it was the medication. We going to do–’ no, he don’t do stuff like that. If he don’t know his self, he'll tell me, ‘We don’t know.’ And that’s being honest with me. And that makes me feel very confident in him.” (Participant #1, 60-year-old man, diagnosed <1 year ago)
	Whole-person care	“I had a tragedy that pretty much went on in my life this following month where [DOCTOR] sat right there and listened to me speak. And he was able to speak and assist me. And then he was able to call the social worker and the nurse. And he was able to put things together for me, and I appreciated that.” (Participant #26, 54-year-old man, diagnosed <1 year ago) “The conversation wasn’t always, ‘Okay, you got chemo. You have to do this.’ They cared about how I was doing outside, how was I living with it… They were concerned about how you was feeling overall.” (Participant #15, 51-year-old woman, diagnosed 3–4 years ago)
Recommendations for the future	Informational resources	“The more information that you could put into patients’ hand, I think will help that patient to negotiate their illness better. It can help them develop questions to ask their doctor, more so, perhaps even get them to identify things that might help the doctor better serve them. But some of these things, you don’t really recognize unless somebody says something or you see something. Even if there’s a website or something that you can direct someone to to educate them on their condition, I think would be a great help.” (Participant #4, 77-year-old man, diagnosed 5+ years ago)
	Clinician training	“I guess it’s a cultural thing, too. You got to break the culture barrier because a lot of physicians that come in there is not African American. It’s of a different ethnic background, so you got to break that culture barrier, and you just have to know how to be more warm and inviting. So I think you got to develop some type of personality.” (Participant #19, 68-year-old woman, diagnosed <1 year ago) “In order to understand the Black community, African American community, Brown community, you have to understand the community. Most of the books that the doctors learn from have Caucasian or European figures in them. They need to get more books when they’re studying, when they’re in school, about African Americans or Brown people or other people outside of what they see in the books. I have never – and not saying that it doesn’t exist – but I’ve never seen a medical book and it had a Brown person in it.” (Participant #10, 57-year-old woman, diagnosed <1 year ago)

3.2.1. Theme 1: Experiences with Care

Participants’ past experiences with healthcare – positive or negative – affected their openness to engaging in symptom management conversations.

Sub-Theme 1.1:

Timely responses. Participants appreciated when clinicians took time to answer their questions. Participants recalled specific times when their oncologists prioritizedsharing information in a timely manner: “I was waiting on [my results], and those docs called me at home to let me know… They didn’t wait for me to call them… and that was perfect” (Participant #7, 68-year-old man, diagnosed 1–2 years ago). Some participants also noted the important role of the oncology nurse navigator in providing timely responses: “[The Navigator]] give[s] you a call to follow up with you on everything… The navigator makes it easy for me.” (Participant #14, 68-year-old woman, diagnosed <1 year ago).

Sub-Theme 1.2:

Confusion around side effects and care team roles. Overwhelmingly, participants desired clarity about what side effects they might experience, when they might occur, and for how long. One participant reflected, “I was told that I would lose my hair, but I didn’t. I was not told when to expect this loss. I was not told for how long I can expect this” (Participant #6, 65-year-old woman, diagnosed 5+ years ago). Information about side effects was valued for setting expectations because of participants’ unfamiliarity with cancer.

Participants also expressed confusion regarding team roles in their cancer care: “Right now, I’m seeing three, maybe four doctors, and the only doctor that I really know what their role is is my primary oncologist” (Participant #6, 65-year-old woman, diagnosed 5+ years ago). Thus, participants wanted more information about potential side effects and clinicians’ roles in managing them.

3.2.2. Theme 2: Communication Barriers

Participants described challenges to discussing symptoms with their clinicians, including factors related to their racial identity within inequitable systems and to clinician behaviors.

Sub-Theme 2.1:

Disclosure hesitancy. Some participants described difficulty openly discussing their cancer, symptoms, and experiences with their clinicians, and rooted this in the Black/African-American Experience: “[In] the African American community, a lot of people… just don’t feel comfortable with giving all their information to the doctor” (Participant #18, 74-year-old man, diagnosed 3–4 years ago).

Another participant described that a Black person’s strong self-advocacy “is more likely to cause a confrontation between doctor and patient and destroy their relationship” (Participant #7, 68-year-old man, diagnosed 1–2 years ago), suggesting concerns about being judged unfairly for active care engagement. Another participant described the cultural expectation to minimize symptoms: “As African American people, we’re so used to, ‘Oh, we’ll be okay’ […] masking what the real problem is” (Participant #10, 57-year-old woman, diagnosed <1 year ago). Thus, participants’ experiences as part of the Black community affected their comfort with disclosing important cancer-related information to clinicians. One participant even noted that positive experiences with cancer care were “unexpected” based on prior experiences: “I’ve been through a lot being a Black person. I’ve been called names… but my [cancer treatment] experience was very positive” (Participant #16, 72-year-old woman, diagnosed <1 year ago). Though only raised by one participant, it likely represents an important experience of Black patients who have experienced medical discrimination, and highlights how positive experiences help rebuild trust.

Sub-Theme 2.2:

Not knowing what questions to ask. One participant highlighted: “Patients really don’t know what questions to ask... I’m not going to be able to ask– any intelligent questions that’s going to make me feel more comfortable” (Participant #4, 77-year-old man, diagnosed 5+ years ago). This participant described an added burden to learn which questions are reasonable and important to ask clinicians, and concern about missing learning opportunities. Participants may “leave knowing less than they did when they came” (Participant #21, 69-year-old woman, diagnosed 5+ years ago). This participant also described that not knowing which questions to ask can lower care engagement: “older people are willing to say all right, and just kind of take what they’re given” (Participant #21, 69-year-old woman, diagnosed 5+ years ago). Thus, participants identified a learning gap: they don’t know what they don’t know.

Sub-Theme 2.3:

Feeling unheard. One participant stated: “When someone isn’t listening, you can feel it… it makes a difference” (Participant #10, 57-year-old woman, diagnosed <1 year ago). Participants valued clinicians’ efforts to remain present, and noticed when this was lacking. Another participant described a blatant example of disconnect between what the patient said and what the clinician heard: “I [told DOCTOR] that I had stopped smoking... and then he said, ‘You’re going to have to stop smoking.’ And I was like, ‘I just told you I did. Were you listening?’” (Participant #21, 69-year-old woman, diagnosed 5+ years ago). This participant further described how nonverbal behaviors could reflect disengagement: their prior doctor “never made eye contact with me. He sat down with his back to me, and as I started to talk to him, he started to type. [W]e had no connection” (Participant #21, 69-year-old woman, diagnosed 5+ years ago). When clinicians conveyed disengagement in spoken or unspoken ways, it took a toll on the clinician-patient relationship.

3.2.3. Theme 3: Communication Facilitators

Participants outlined both intra- and inter-personal factors that supported symptom discussions.

Sub-Theme 3.1:

Social support. Due to substantial information discussed in appointments, participants found it helpful to have an additional set of ears:“I needed my brother or my nephew in there with me because it was too much information to consume” (Participant #3, 74-year-old woman, diagnosed <1 year ago). Support people also helped to ask questions: “[DOCTOR] just asks about how I feel, any aches and pains and stuff that I’ve been through. I ask my daughter to ask the questions” (Participant #11, 81-year-old woman, diagnosed 1–2 years ago). Participants felt this helped alleviate the difficulty of knowing which questions to ask (Sub-Theme 2.2).

Sub-Theme 3.2:

Self-advocacy. Some participants strongly voiced that taking an active role in their care was integral to obtaining cancer information: “I can be aggressive… when it comes [to] my health. I want answers” (Participant #2, 68-year-old woman, diagnosed <1 year ago). This illustrates a pattern of questioning and confirming information, rather than passively accepting information; to “be observant” and “just because it coming out [the clinician’s] mouth don’t necessarily mean [they’re] right” (Participant #13, 67-year-old man, diagnosed <1 year ago). These participants acknowledged that clinicians can be incorrect, and that questioning or clarifying may help to receive the best care.

Self-advocacy was easier when participants had strong relationships with their clinicians: : “[My doctor and I] have such an amazing relationship because I will ask anything [and] after you explain it to me, I’m going to [ask for clarification] to make sure I understand” (Participant #10, 57-year-old woman, diagnosed <1 year ago). Thus, a strong therapeutic relationship may open the door for self-advocacy.

Sub-Theme 3.3:

Honesty and transparency. Positive clinician-patient relationships were shaped by honest, open, and direct communication. For example, one participant told their clinician “do not sugarcoat anything” and “Be up front. Look me in my eyes when you’re talking to me.” (Participant #10, 57-year-old woman, diagnosed <1 year ago). Participants viewed their clinicians as experts, yet valued transparency about the limits of their knowledge: “If they don’t know something, he’ll tell me … And that’s being honest with me. And that makes me feel very confident in him.” (Participant #1, 60-year-old man, diagnosed <1 year ago). Through transparency, participants further viewed their clinicians as trusted experts.

Sub-Theme 3.4:

Whole-person care. Patients appreciated when clinicians conveyed psychological and emotional care. One participant who experienced a tragedy felt connected to their clinician when they took the time to sit down and discuss it. Another participant described: “They cared about how I was doing outside… how you was feeling overall” (Participant #15, 51-year-old woman, diagnosed 3–4 years ago). Ultimately, when participants felt seen as people, rather than “just another patient” (Participant #19, 68-year-old woman, diagnosed <1 year ago), it facilitated communication.

3.2.4. Theme 4: Future Recommendations

Participants’ suggestions for improving symptom communication included patient- and clinician-focused interventions.

Sub-Theme 4.1:

Informational resources. Participants perceived lung cancer resources were scarce: “I see [stuff for] breast cancer but nothing with the lung cancer stuff” (Participant #11, 81-year-old woman, diagnosed 1–2 years ago). Participants wanted information about their disease, prognosis, and side effects to “be on the lookout for” (Participant #4, 77-year-old man, diagnosed 5+ years ago).

Participants expressed interest in a wide variety of resource formats, including pamphlets, in-clinic posters, and videos. For all formats, participants emphasized presenting manageable amounts of information. One participant suggested that resources be provided for support people, since “some people come with families, and maybe [their family member] will understand it more” (Participant #10, 57-year-old woman, diagnosed <1 year ago). This aligns with the emphasis that participants placed on social support’s facilitating role in communication (Sub-Theme 3.1).

Sub-Theme 4.2:

Clinician training. Participants suggested clinicians “put [them]self in [their] patient’s shoes” (Participant #17, 73-year-old woman, diagnosed 3–4 years ago) and “take five minutes to get to know [their] patient” (Participant #15, 51-year-old woman, diagnosed 3–4 years ago). Patients acknowledged that clinicians’ bedside manner is “based upon their training and their mindset” (Participant #4, 77-year-old man, diagnosed 5+ years ago), but reminders and additional training would be beneficial. Notably, one participant suggested that research findings on patient-clinician communication – such as the findings of this study – be disseminated to clinicians: “If it points to the doctors really maybe not communicating as much as they maybe could or should, that might be a wakeup call for them” (Participant #4, 77-year-old man, diagnosed 5+ years ago).

Participants emphasized that bedside manner and relationship building was particularly important when working with people from different cultures: “A lot of physicians that come in there is not African American. It’s of a different ethnic background, so you got to break that culture barrier” (Participant #19, 68-year-old woman, diagnosed <1 year ago). Participants noted that medical training may not adequately prepare clinicians to interact with patients from diverse backgrounds: “Most of the books that the doctors learn from have European figures in them. They need to get more books… about African Americans or Brown people” (Participant #10, 57-year-old woman, diagnosed <1 year ago). Given this perceived lack of prior training in cultural competence or cultural humility, participants recommended continuing education in these areas.

4. Discussion

Our results demonstrate the complex interplay of multilevel factors that influence clinician-patient communication for Black patients with advanced lung cancer, and fill a significant gap by documenting modifiable communication factors to facilitate more equitable communication. Black patients with advanced lung cancer identified key barriers (e.g., disclosure hesitancy, not knowing which questions to ask, and feeling unheard) and facilitators (e.g., family member support, self-advocacy, honesty and transparency, whole person care) to communicating with their clinicians about symptoms. Though existing research has documented communication’s role in shaping patient outcomes, our findings reflect novel themes to Black patients’ cancer experience. For example, participants specifically requested frank and direct communication about their cancer care. While prior work suggests desire for direct communication style varies by cultural context,²⁴ this point has not been addressed in medical communication research, to our knowledge, and may be a key factor to consider in communication training interventions.

Additionally, family and supporters were key brokers and/or facilitators of effective communication. Extant research explores caregiver’s perceptions of clinical communication,²⁵ and how social support affects patients’ quality of life.²⁶ Yet research has rarely addressed how social support impacts patients’ clinical experiences.⁷ Clinicians seeking to improve communication with the patient must also consider the caregiver’s role within the communication context. Future work should explore whether these themes apply broadly to other populations. These findings have the potential to improve Black patients’ experiences with symptom management for advanced lung cancer.

Several themes and sub-themes are consistent with past communication research. Participants described clinician bias as a key factor in communication, and how positive and negative experiences within their cancer care impacted communication. This is consistent with past models that root patient-clinician communication within the context of patients’ past experiences in healthcare.²⁷ Other research demonstrates that Black and Latine adults feel a sense of belonging in healthcare when they experience timely and responsive communication, and that positive experiences can feel “surprising” in the context of anticipated discrimination.²⁸ Our findings further reflect broader research on the role of effective communication in building trust and positive clinician-patient relationships.²⁹

The qualitative findings underscore that patients are attentive not only to the quantity of communication (e.g., whether a conversation happens) but how conversations occur. Patients identified that limited information about symptom management hindered communication channels, and that specific lung cancer resources on symptom management are needed. Though these themes may not be specific to Black patients with cancer, this underscores a need for more attention to communication quality. Medical communication assessment often implements checklists - ensuring whether a conversation “task” happened, or if specific topics are mentioned within a conversation.³⁰ “Tasks” are one medical communication goal. Multiple Goals Theory posits, however, that “task goals” occur alongside goals related to relationship building (i.e., relational goals), and maintaining respect (i.e., identity goals).³¹ Effective medical communication cannot achieve “tasks” at the detriment of the other goals.²⁸ Our findings dovetail with this research, identifying that Black patients with advanced cancer seek communication with their clinicians that attends to multiple goals.

We also identified multilevel barriers and facilitators to effective clinician-communication in symptom management specifically among Black patients. Black patients discussed how their racial identity influenced communication, including fears that self-advocacy would be perceived as “confrontational.” Similarly, prior work found Black (vs. White) patients were more likely to be described in their medical records as “non-adherent”, “aggressive”, or “challenging.”³² Our study’s finding illustrate how racism can affect patient’s communication. However, patients also indicated that self-advocacy is critical in obtaining information about their cancer. This tension is reflective of the burden Black patients with cancer carry, and how historical and systemic racism influence communication.^33,34 Some research has focused on electronic symptom reporting as a mechanism to increase symptom communication between patients and providers. However, these systems impact communication in complex ways, including potentially reducing patients’ willingness to report symptoms.³⁵

Compared to its significant impact, communication is an underutilized area of intervention to reduce biases and promote equity for patients that experience significant cancer inequities.^36,37 Most cancer communication interventions assess impacts on knowledge and communication self-efficacy, with limited measurement of communication outcomes.³⁸ Patient-directed interventions like Question Prompt Lists can increase active participation among Black patients with cancer, and may be one way to target communication inequities.³⁹ Yet, implementing patient-focused tools alone does not impact clinician-level communication.³⁹ Because communication occurs within the context of structural racism, it is critical to address the multilevel contributors of communication barriers; in particular the role of biases and stereotypes.³⁶ As patients in our study noted, clinician interventions are necessary to promote high-quality communication, and to mitigate the role of bias in clinical communication.⁴⁰ Patient-directed interventions alone are not sufficient to overcome the communication barriers that systemic racism imposes on Black patients with cancer, and should be integrated with multilevel interventions including clinician-directed interventions. Researchers should consider developing such interventions aligned with evidence-based approaches to educating about equitable communication,³⁷ and the role of multiple goals in communication during the encounter.⁴¹ Future work should also develop communication assessment tools rooted in Multiple Goals Theory and patients’ specific culturally grounded communication preferences. Furthermore, future intervention development could take an intersectional framework to incorporate the ways in which racism intersects with other sources of oppression.⁴²

4.1. Strengths and Limitations

Our study is limited to the experiences of Black patients with lung cancer in a Mid-Atlantic cancer center. Communication is influenced by various cultural and geographic factors; researchers should consider specific factors relevant to their patient population, ideally working with community members to identify potential cultural communication factors to study. Additionally, this study was a secondary analysis of qualitative data that emerged organically; additional or different themes could arise from interviews specifically designed to elicit communication experiences. Yet, we expanded research on cancer communication - which has mostly focused on breast cancer - to lung cancer, thereby incorporating perspectives from men and women. Though we did not specifically compare men and women’s responses, future work could examine how gendered expectations may influence communication. The experiences of Black patients are not a monolith, and differ based on unique intersectional experiences reflective of stigma and discrimination, including lung cancer stigma, gender, sex, sexuality, and class. Researchers should consider using an intersectional approach to examine how communication among Black patients may differ for men and women (i.e., intracategorical intersectional approach).

We chose to focus on Black patients because of the profound inequities in their cancer outcomes, and to identify strategies to improve these outcomes. Thus, we cannot discern which findings are unique to Black patients and which apply across other patients with advanced lung cancer, an area for future work. Additionally, to avoid stigmatization (at the direction of our Community Advisory Board), we did not ask patients about their smoking status which is a limitation of our analysis. Our work is strengthened by focusing on patients who experience inequities, and attending to the ways in which communication - a modifiable factor - can influence care. Communication is co-created by clinicians and patients, thus it is critical to document both perspectives to identify areas of improvement. Finally, lung cancer stigma was not an emergent theme in our analysis, likely because our interview guide was not specifically attentive to stigma. Future research should design interview guides that can attend to how specific facets of lung cancer stigma could influence symptom management communication.

4.2. Practice Implications

These findings suggest that facilitating symptom communication between Black patients with advanced lung cancer and their clinicians should incorporate timely responses, direct communication styles, honesty and transparency, care for the whole person, and strategies to mitigate racism in communication. Clinicians may consider best practices in encouraging patients’ active participation, such as prompting questions more regularly and checking for understanding,⁴³ and in building trust to reduce disclosure hesitancy. Patients may appreciate and benefit from more comprehensive information about side effects and guidance on relevant questions to ask (e.g., question prompt lists). Involvement of support people in clinical visits should be encouraged and accommodated. As most hospital systems in the US currently require some form of bias training, additional similar programs may be ineffective. Rather, clinicians may consider implementing other evidence-based techniques to minimize biased responding, such as brief mindfulness interventions prior to patient interactions. ^44,45 Clinic-level implications include tracking communication satisfaction and implementing interventions to promote active participation (e.g., question prompt lists).

4.2. Conclusions

This study fills an important gap in the literature by attending to Black patients’ communication perceptions during cancer treatment. Results emphasize a need for interventions that promote effective and competent communication between clinicians and Black patients, and provide insights on key barriers and facilitators. Inequities in cancer are driven by multilevel factors. High-quality communication can facilitate better outcomes for patients, especially those that experience considerable inequities in care. By identifying ways to tailor communication to Black patients’ preferences, we can work toward more equitable outcomes in cancer symptom management.

Data availability:

The datasets analyzed during the current study are not publicly available, as qualitative interview data cannot be completely anonymized, even when aliases are used to replace names. Data are available from the corresponding author (CCC) on reasonable request.