“Our Community is not Appropriately Served”: LGBTQ+ Cancer Survivors and Caregivers have Suggestions for Providers

Abstract

Background

LGBTQ+ (lesbian, gay, bisexual, transgender, queer, other sexual or gender minority) people experience unique challenges in cancer care. This study describes LGBTQ+ survivors’ and caregivers’ experiences interacting with cancer care providers and their recommendations for delivering care with cultural humility.

Methods

We conducted a secondary analysis of qualitative focus group data to extract community members’ suggestions for providers. We conducted 10 focus groups with 52 LGBTQ+ cancer survivors and caregivers. Participants were recruited as survivor/caregiver dyads in which at least one member (the survivor and/or the caregiver) identified as LGBTQ+. Focus groups were analyzed using qualitative thematic analysis. A community advisory board participated in one focus group and was consulted on study design, findings, and dissemination.

Results

Participants identified several recommendations for healthcare providers to improve cancer care delivery for LGBTQ+ survivors and their caregivers. This included, understanding that many LGBTQ+ patients experience minority stress during their cancer care; creating a welcoming space for LGBTQ+ people in care settings with visual indications of inclusivity; using affirming or unassuming language; not shying away from sexual health discussions; offering additional resources, ideally LGBTQ+-specific resources, to LGBTQ+ survivors and caregivers; and incorporating patient-centered approaches.

Conclusion

Acting on LGBTQ+ cancer survivors’ and caregivers’ perspectives and recommendations for providers can help improve cancer care delivery for the LGBTQ+ community. This feedback can be utilized to inform medical trainings and innovative support programs to improve provider-patient communication and care.

Implications for Practice.

LGBTQ+ cancer patients and their caregivers recommended that oncology providers understand LGBTQ+ patients and caregivers may experience minority stress, use inclusive language and visual indicators to create a welcoming space, discuss sexual concerns, offer additional (LGBTQ+) resources, and prioritize patient-centered care. By implementing these suggestions in trainings, support programs, and overall, in their medical center, oncology providers can improve LGBTQ+ individuals experiences undergoing cancer care.

Introduction

When undergoing cancer care, LGBTQ+ (lesbian, gay, bisexual, transgender, queer, other sexual or gender minority) patients and their caregivers report higher rates of distress, depression, and lower quality of life than their cisgender and heterosexual counterparts.^1–7 One study found that 50% of the LGBTQ+ cancer patients and survivors they surveyed were worried about facing discrimination while receiving health care, with the highest amount of concern being reported by Black and Hispanic LGBTQ+ adults.⁸ LGBTQ+ patients may decide not to disclose their sexual orientation or gender identity, sometimes out of fear that this will result in poorer care.^8–10 Additionally, LGBTQ+ people may avoid seeking care due to worries about facing discrimination.^8,11,12 Due to these additional stresses while undergoing care, it is not surprising that LGBTQ+ cancer patients and survivors experience poorer psychosocial outcomes.^2,3,5–7

Another contributing factor to these disparities is a lack of affirming providers who are educated on the healthcare needs of LGBTQ+ individuals.^13–15 In a study with LGBTQ+ cancer survivors, 41% stated that their provider was not knowledgeable about the specific needs of LGBTQ+ patients, and only 51% indicated their cancer care provider was LGBTQ+ friendly.¹³ Many providers report feeling unprepared to address the specific healthcare needs of LGBTQ+ individuals due to a lack of training and educational opportunities.^14,15 Given that providers often have knowledge deficits around LGBTQ+ healthcare needs, this often puts the responsibility on the patient and their caregiver to educate their healthcare provider and navigate finding affirming providers and resources.^16–18 Currently, LGBTQ+ people make up almost 10% of the population in the United States, with younger generations being more likely to identify as LGBTQ+.¹⁹ As this population continues to grow, it is critical that providers are trained in LGBTQ+ health care needs and cultural humility. To address these gaps in provider knowledge, researchers and community partners have identified actions providers can take to improve care for LGBTQ+ cancer patients and their caregivers.^20–23

Although there are several publications on recommendations for providers to improve care for LGBTQ+ patients,^20–22,24 few focus on or gather data from their caregivers. Caregivers play a crucial role in supportive care yet experience high rates of distress.^1,4 LGBTQ+ caregivers are underrepresented in research, and may struggle to find spaces supporting both their identity as LGBTQ+ and as a cancer caregiver.^1,25–27 This study expands on previous literature by exploring feedback from both patients and caregivers on how providers can improve cancer care for LGBTQ+ people.

Methods

Study design

This is a secondary analysis of data from a qualitative study supporting the adaptation of an existing intervention. For the parent study, we convened focus groups with the purpose of adapting the FOCUS program,^28–30 a psychosocial intervention for cancer patients and their caregivers, to more effectively address the support needs of LGBTQ+ cancer survivors and caregivers. The FOCUS Program includes five main subject matters to improve support: family involvement (F), outlook (O), coping effectiveness (C), uncertainty reduction (U), and symptom management (S). This program is delivered to a cancer survivor and their informal (family or friend) caregiver by a trained interventionist. Data for this study was collected through “theater test” focus groups with LGBTQ+ cancer survivors and their caregivers, during which participants were asked to give feedback on the existing FOCUS program to better cater it to the LGBTQ+ community. While the discussion guide was designed to elicit feedback on the content and format of the FOCUS Program, all focus groups gave feedback directed at providers and relevant to oncology practice. This secondary analysis focuses on the suggestions LGBTQ+ cancer patients and their caregivers had for providers. A Community Advisory Board (CAB) participated in one focus group, and members were consulted regarding study design, feedback for providers, and the analysis of the results. Additionally, a CAB member (KY) helped revise this manuscript and therefore is included as an author.

This study was approved by the Institutional Review Boards at University of Rochester (IRB 00-01-0099) and at Wayne State University (IRB 23-11-6316). All procedures performed were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Participant recruitment

For the parent study, eligible participants had to be either a cancer survivor or an informal (friend, family) cancer caregiver, at least 18 years of age, living in the United States, able to speak and read English, and able to complete the focus group online via Zoom. Either the cancer survivor or their caregiver had to self-identify as LGBTQ+. Participants were allowed to participate individually if only one member of the survivor/caregiver unit was available. Survivors could invite more than one caregiver; however, no survivors nominated multiple caregivers.

To recruit for the FOCUS Study, flyers and information about the study were posted in clinic waiting rooms and other public areas in the University of Rochester Wilmot Cancer Center and the Karmanos Cancer Center and through local and national organizations and listservs. At the University of Rochester, health records were also screened to find prospective participants. Eligible participants received a research information sheet detailing an informed consent and completed a brief demographic survey.

Data collection

An initial pilot focus group was completed on Zoom with 7 LGBTQ+ cancer survivors and caregivers on the study’s Community Advisory Board (CAB). Following the pilot focus group, nine more focus groups were conducted on Zoom with 45 participants. This paper reports on both the feedback from the CAB members and the following focus groups, for a total of 10 groups and 52 participants. The pilot focus group was completed in September 2023, and the following focus groups were completed between January and August 2024. Focus groups included a mix of caregivers and survivors. Interviews were scheduled based on the availability of the participants. Most of the time, participants who were recruited through the same university (ie, University of Rochester or Wayne State University) were scheduled for a focus group together. Every focus group was 90 minutes long and was led by one of the principal investigators of the study (CK, TAH), where they followed a semi-structured interview guide. Each focus group started by the facilitator sharing their pronouns and asking the rest of the members to share their name, pronouns, and their cancer care experience. Focus group interviews ceased when the principal investigators felt they reached data saturation and no new potential themes or topics were emerging. The focus groups were audio and video recorded on Zoom and then transcribed using the Trint secure online transcription platform. These transcripts were reviewed by members of the research team (NA, MEI, LN) to fix discrepancies and remove identifying information.

Positionality

The authors consist of three research coordinators (M.E.I., N.A., and L.N.), two associate professors (T.H. and C.K.), and one community advisor board member (K.Y.). Four out of the six authors identify as LGBTQ+, and one out of the six identifies as a cancer survivor. Both principal investigators of the study are associate professors with a research focus on health disparities in cancer care, particularly with LGBTQ+ individuals. The first author, a research coordinator who led the analysis, is a qualitative researcher with experience conducting research for and with LGBTQ+ populations. This analysis was further informed by the academic and professional expertise of the authors regarding LGBTQ+ cancer health equity.

Data analysis

Transcripts were analyzed using qualitative thematic analysis on the Dedoose qualitative research platform (http://dedoose.com). Two members of the study team (N.A., M.E.I.) independently reviewed and coded each transcript. While initial coding was performed deductively using a codebook based on the five FOCUS topic areas, additional codes representing recurring topics, including a “provider feedback” code, were integrated into the codebook using an inductive approach.³¹ When discrepancies were found, this was discussed with the study PIs, who collaboratively made final coding determinations when needed.

Given that a multitude of participants discussed suggestions for cancer care providers, the “provider feedback” code was further analyzed. All quotes coded as related to “provider feedback” were reviewed by MEI, specifically focusing on quotes relevant to LGBTQ+ care needs. Only one focus group, our smallest focus group consisting of two participants, did not discuss feedback for providers specific to LGBTQ+ patients or caregivers. This was an iterative and inductive process of rereading quotes related to “provider feedback”, refining codes, and organizing quotes, ending with 50 quotes extracted and coded. Themes were originally generated and assigned by MEI and then revised with additional feedback from the rest of the study team (T.A.H., C.K., L.N.) as well as from the study’s CAB. This resulted in the final six themes.

Results

Characteristics

A plurality of participants identified as cisgender women (48.1%, n = 25), followed by cisgender men (35.3%, n = 18), non-binary, genderfluid, or genderqueer (9.6%, n = 5), transgender men (3.8%, n = 2), and one (1.9%) who identified as a transgender woman. Most participants identified as lesbian or gay (75.0%, n = 39) or another sexual minority (bisexual, pansexual, asexual, and queer; 17.3%, n = 9), with a few who identified as heterosexual (5.8%, n = 3). A majority of participants were solely cancer patients or survivors (51.9%, n = 27), nineteen were solely caregivers (36%), five (9.6%) had experience as a cancer survivor and caregiver, and one (1.9%) participant from the CAB identified as a cancer care advocate. For the cancer survivors, a variety of cancer types were reported, with breast cancer (38.7%, n = 12) being most common. Participants were recruited nationally and represented 9 states. Further demographics are included in Table 1.

Table 1.

Focus group demographics (N = 52)^a.

Average age (range) b	55 (20-78)
Sexual orientation
Lesbian/gay	39 (75.0%)
Heterosexual	3 (5.8%)
Bisexual	3 (5.8%)
Pansexual	1 (1.9%)
Asexual	1 (1.9%)
Queer	4 (7.7%)
Missing data	1 (1.9%)
Gender identity
Cis woman	25 (48.1%)
Cis man	18 (34.6%)
Nonbinary/genderfluid	5 (9.6%)
Trans man	2 (3.8%)
Trans woman	1 (1.9%)
Missing data	1 (1.9%)
Race
White	38 (73.1%)
Black	9 (17.3%)
Multi-racial/other	4 (7.7%)
Missing data	1 (1.9%)
Cancer experience
Patient/survivor	27 (51.9%)
Caregiver	19 (36.5%)
Survivor & caregiver	5 (9.6%)
Advocate (CAB member)	1 (1.9%)
Cancer type (Survivors only; N = 31)
Breast	12 (38.7%)
Prostate	4 (12.9%)
Blood	3 (9.7%)
Colorectal	2 (6.5%)
Multiple	3 (9.7%)
Other	7 (22.6%)
Time since diagnosis (survivors only; N = 31)
Less than 1 year	2 (6.5%)
1-2 years	7 (22.6%)
3-6 years	8 (25.8%)
7-10 years	5 (16.1%)
11+ years	9 (29.0%)
Caregiver relationship to study partner (Dyads only; N = 18 caregivers)
Spouse/committed relationship partner	12 (66.7%)
Friend	3 (16.7%)
Sibling	2 (11.1%)
Parent/child	1 (5.6%)

^aIncludes community advisory board (CAB) members.

^bOne participant did not disclose their age and therefore were not included in the average and range.

Provider feedback

The results presented in this study include six themes related to feedback for providers specific to LGBTQ+ cancer care, along with participant quotations to illustrate each theme. Quotations were lightly edited for readability. Recommendations and additional quotations are included in Table 2. The themes included: understand LGBTQ+ patients and caregivers may experience minority stress, create a welcoming space for LGBTQ+ people, be conscious of your communication, create a safe space to talk about LGBTQ+ sexual health, offer additional (LGBTQ+) resources, and prioritize patient-centered care.

Table 2.

Summary of emergent themes, recommendations and select supporting quotations.

Themes	Recommendations for providers	Quotations
Understand LGBTQ+ patients may experience minority stress	Be aware that LGBTQ+ people may exhibit additional stress, such as fears that they will get lesser care or experience discrimination.	“We got to the room and they’re like, ‘oh my God, there’s only one bed. I’m so sorry…’ And I was like, ‘we’re married.’ It was just really uncomfortable like… the people like me are not supposed to be here, right? Like, you don’t have a room in your language or in your processes to acknowledge people, partnerships like us… the whole process of staying there very much felt like we were the odd ones out… how do you process that when you’re trying to process everything else?”—Queer Transgender Man Cancer Survivor	“In a medical setting, you shouldn’t be feeling a lot of the things that we felt because heterosexual couples don’t, you know? And so it’s to me, it’s just about creating this space of safety to say something that that might be sexually uncomfortable for them.”—Lesbian Cisgender Woman Cancer Caregiver
Create a welcoming space for LGBTQ+ people	Place LGBTQ+ resource pamphlets in the waiting room, list yourself as LGBTQ+ friendly online, and if applicable, disclose your own LGBTQ+ identity to your patients.	“It would be nice to have like pamphlets, like if the [name of LGBTQ+ group], and other support activities. If those pamphlets could be at the treatment centers around the city. So if there’s some folks that are uncomfortable with, talking to the patient or caregiver about it. They could just pick up the pamphlets.”—Lesbian Cisgender Woman Cancer Caregiver	“…when you look online to research doctors, they are listing LGBTQ friendly. And I think that that would be beneficial on not just the, the care providers themselves, but also on the support groups… We would like to just be able to go in the room and get the same treatment and support that everyone else gets without having to worry about, like, okay, who in this room is not safe for me to say something to?”—Lesbian Cisgender Woman Cancer Survivor
Be conscious of your communication	Use un-assuming language (ex. say partner, instead of husband/wife) and identity-affirming language (ex. personal pronouns).	“I think just getting people in the habit of not making assumptions of just saying… who do you have with you today? Very, very simple. Doesn’t make any assumptions at all. But, you know, the last thing we wanted to have to worry about is explaining why we’re not sisters in the middle of trying to understand breast cancer.”—Lesbian Cisgender Female Cancer Caregiver	“We had one, emergency room doctor who kind of berated us because we didn’t introduce him as a transgender person when we had arrived for something completely unrelated to his genitals. I feel like there definitely needs to be some updates to health care regarding people, so we can get everybody’s pronouns and names and everything, up front so that it doesn’t need to be awkward.”—Heterosexual Cisgender Female Cancer Caregiver (Parent of a Bisexual Transgender Man)
Create a safe space to talk about LGBTQ+ sexual health	Educate yourself on LGBTQ+ sexual health care needs and terminology, understand the importance and sensitivity of sexual health conversations, and recommend a LGBTQ+ affirming sex therapist if needed.	“Heterosexual doctor, gay patient…. There are a lot of things that he didn’t take into consideration. They’re not part of his reality. So they were not brought up, but intimacy, sex…. I feel like I was cheated out of that conversation with somebody, so there should have been somebody to say… ‘There’s going to be problems coming up for you. Things might not work the way they used to.’”—Gay Cisgender Man Cancer Survivor	“I would say having a sex therapist that people can go to or be recommended to, not just in general therapists because they actually don’t have the training and education around sexual health. And you can’t just pick a sex therapist either, because you don’t know if they understand heteronormativity or the intersectionality and around medicine. So I would say having some very specific folks that you could send people to as a resource.”—Queer Non-Binary Cancer Survivor and Caregiver
Offer additional (LGBTQ+) resources	Offer LGBTQ+ support groups, pamphlets, advocates or health care navigators directly to patients or available in the waiting room.	“[The hospital social worker] was saying, ‘there are these other groups, like Gilda’s Club and other cancer groups where people support each other.’ If the, I know social workers in those situations are, you have full loads but just them having that information that they could disseminate that this would be available for the LGBTQ community.”—Gay Cisgender Man Cancer Survivor	“I have no complaints about the care that I’ve gotten or the support from the medical staff, but, I don’t think there was ever a point where they asked, if we needed some kind of queer support group or anything else. It was just there. And you just assume that it’s okay, and that’s not true.”—Lesbian Cisgender Woman Cancer Survivor
Prioritize patient-centered care	Focus on the individual needs and preferences of the patient to help them feel more comfortable receiving care. Remember that kindness matters; a simple act like introducing yourself to their caregiver can improve their experience in cancer care.	“It would be fantastic if, medical providers of any kind would acknowledge the other person in the room with the patient would be fantastic… I kept track at the beginning… it was only about 30% even acknowledge that I was in the room, let alone asking who I was.”—Lesbian Cisgender Woman Cancer Caregiver	“Something [the student nurse] said to me as she was putting in my I.V. was so, unnecessary for her to say. And so touching personally. And I was like, you get it. You see me as more than just a patient. You see me as the person that I am in the situation that I’m in. And that’s the kind of person that I would want to talk to on a regular basis.”—Queer Transgender Man Cancer Survivor

Understand LGBTQ+ patients and caregivers may experience minority stress

Participants wanted their providers to understand that LGBTQ+ patients and caregivers may experience minority stress. LGBTQ+ cancer patients may fear discrimination or substandard care due to a history of discrimination both in and out of medical care, frequently described as “minority stress”.^4,32,33 Participants noted how fear of facing discrimination, exclusion, or receiving substandard care due to their LGBTQ+ identity added another source of anxiety on top of the stressors of experiencing cancer. A gay cisgender man and cancer survivor discussed how he feared his provider would hold negative opinions against LGBTQ+ people:

I worry about their religious background and… how they would feel about me as a person, on the basis of a strong anti-LGBTQ background…. Although probably most medical people don’t care. I’m always afraid that we’ll find someone that would care… my situation would be in danger on a basis that they just don’t like LGBTQ patients.

Participants suggested that increasing providers’ awareness of this added stress would enhance their understanding of LGBTQ+ patients’ specific care needs. They discussed several actions providers can take to help alleviate this stress, which are highlighted in the following themes.

Create a welcoming space for LGBTQ+ people

LGBTQ+ individuals often seek indicators of acceptance in healthcare facilities. Participants indicated that more visual signs, such as pamphlets created for LGBTQ+ cancer patients, help LGBTQ+ individuals feel more comfortable receiving care. Many participants discussed wanting signs to determine if a space is accepting before they visit the office, such as listing doctors who are LGBTQ+ friendly online. For LGBTQ+ patients to feel more comfortable receiving care, some participants encouraged LGBTQ+ health care providers to disclose their own LGBTQ+ identity to their LGBTQ+ patients. As one gay cisgender man and cancer survivor said:

Encouraging your health care staff to come out… I self-identify, they know I’m a gay person, I click the button. And so, when they see that, tell the LGBTQ health care providers, come out to the patient.

Be conscious of your communication

Participant feedback on provider communication demonstrated that language can be a sign of inclusion or a sign of alienation. To help LGBTQ+ patients and their caregivers feel more comfortable, they recommended that providers use unassuming language, include caregivers in conversations, ask their patient how they would like to be referred to and use those names/pronouns. Alternatively, participants viewed “othering” language as alienating and impersonal. As one queer transgender man and cancer survivor said:

I would have loved it if my doctors would have stopped telling me that they didn’t know how to treat me because I was transgender… they called me a black box. They called me an unknown… So, my uncertainty was constant.

In many interviews, it was apparent how people benefit from their provider being conscious of their communication, regardless of gender identity. A lesbian caregiver discussed how her wife, a cisgender woman, would be misgendered due to her appearance:

Health care professionals really need a bigger dose of how to deal with gay people, queer people, and trans people just in general… They’re calling [my wife] ‘him’ just because she’s not wearing her earrings.

Create a safe space to talk about LGBTQ+ sexual health

Frequently, participants and caregivers perceived providers as being unsure how to answer questions regarding LGBTQ+ sexual health and noted that providers did not prompt conversations about sexual side effects. Some participants discussed how their provider “recoiled” or “turned red” when asked questions about sex. When sexual health was discussed, the advice predominantly was about penile-vaginal intercourse. Many LGBTQ+ people engage in a variety of different types of sex and therefore were still confused about whether they could have sex during treatment. A lesbian caregiver explained how being LGBTQ+ may result in discomfort for providers and a lack of information for patients:

…especially from [a] LGBTQ+ perspective, you don’t know how they’re going to react. They might be uncomfortable with [discussing sex] anyways, but then that adds an extra layer… [the doctor said] ‘you shouldn’t have penetration for six weeks.’ And it’s like, okay, what does that mean for us?

To improve care, participants suggested providers explain common sexual side effects of treatment, ask about sexual concerns, and welcome questions about sexual health. If a clinician is unsure how to answer a question, participants preferred providers research the topic or refer patients to providers who may be better equipped to address their sexual health concerns, such as an LGBTQ+ affirming sex therapist.

Offer additional (LGBTQ+) resources

Overall, participants wanted to be offered more resources, specifically resources that could address the psychosocial needs of LGBTQ+ people. Many participants discussed how they wished they had been given resources that catered to their LGBTQ+ identity. As a gay cisgender man and cancer survivor said:

I was here for two years before I discovered [local LGBTQ+ support group] … going to medical oncologists, going to primary care, seeing all of these doctors. But no one let me know what was available for me as far as support went. Now all about my disease, but nothing about me as a person. And I found that a great failing in the system.

Participants listed many examples of LGBTQ+ resources, including LGBTQ+ support groups, LGBTQ+ advocates/health care navigators, or pamphlets catered to LGBTQ+ people with cancer. They recommended a variety of ways to disseminate these resources, such as by social workers or oncologists actively suggesting them or by displaying information about these resources in the waiting room.

Prioritize patient-centered care

Patient-centered care may be particularly important for LGBTQ+ individuals. A lesbian cisgender woman who was both a cancer survivor and caregiver discussed how LGBTQ+ people may be accustomed to mistreatment and how kindness matters in care:

[The doctor said] ‘Here’s this one surgeon that’s really good. But they’re really not like a nice human being. And you’re really not going to like them at all, but they’re good at what they do.’ And I was like, well, why is that okay? … with LGBT people, I wonder if that matters a little bit more. If you’ve already been treated like crap by people, you’re probably not going to sign up to get treated like crap.

Another aspect of patient-centered care is supporting the patient’s caregivers. Recognizing the patient’s caregivers at appointments and understanding that their caregivers may have concerns, questions, or support needs as well can enhance the quality of their care (see Table 2 for additional quotes).

When clinicians practiced patient-centered care, patients felt more comfortable and in control of their care. A pansexual non-binary cancer patient discussed how their provider preserved their sentimental tattoo while conducting a skin graft. The participant described the conversation with their provider in which they explained the importance of the tattoo:

‘Is there anything we can do to help me feel like I’m in control?’ And they listened… So now I have this gnarly scar going around my tattoo. So, that made me feel like way better…. they were able to work with me on that and understand my identity.

Discussion

The current study aimed to better understand LGBTQ+ people with cancer and their caregivers’ experiences with care and their recommendations for cancer care providers. By interviewing both survivors and their caregivers, we gained insights from multiple perspectives on how to improve care for LGBTQ+ patients and the people who support them. Across focus groups, participants commented about ways providers could improve care through visual and verbal signs, LGBTQ+ specific resources, by educating oneself on minority stress and LGBTQ+ sexual health, and by prioritizing patient-centered care.

Participants described how visual and verbal signs of LGBTQ+ acceptance improve their experience receiving care. These results mirror past studies, which have demonstrated that LGBTQ+ branding (such as pamphlets about LGBTQ+ resources) and the use of identity-affirming language diminish patients’ concerns regarding discrimination or lesser treatment and increase the visibility of LGBTQ+ acceptance.^{9,17,20,34–36} Patients often struggle to find signs that a provider is LGBTQ+ accepting.¹⁷ In the current study, several participants encouraged their providers to list “LGBTQ+ friendly” on their website or, if applicable, to disclose their own LGBTQ+ identity to their patients. Past studies demonstrate that providers are open to these actions; one previous study with cancer care providers found that the majority of respondents were willing to be listed as a LGBTQ+ friendly providers.¹⁵ These actions help LGBTQ+ patients and caregivers feel more comfortable disclosing and asking questions related to their LGBTQ+ identity.^9,34,36

To address LGBTQ+ health care needs, participants recommended offering additional LGBTQ+ resources. This finding aligns with past studies, which suggest providing mental health, legal, and social support resources for LGBTQ+ people in cancer care.^17,20,22,24 One common recommendation is for providers to suggest LGBTQ+ support groups; LGBTQ+ people may find their needs are not met by predominately cisgender heterosexual groups due to differences in their identities and experiences.¹ Psychosocial resources may be of particular importance to address the additional stresses of going through cancer care as a LGBTQ+ person.^20,22,32

As illustrated in our findings, by understanding minority stress, providers can better recognize the barriers LGBTQ+ people may face in cancer care. Past literature has recommended educating staff on LGBTQ+ cultural humility, screening patients for emotional distress, disseminating resources on policies protecting LGBTQ+ rights to care, and implementing ongoing initiatives and trainings on LGBTQ+ healthcare needs to reduce re-traumatization.²² This may include explaining the importance of inclusive language, such as using “partner” instead of “husband/wife,” and affirming language, such as using correct pronouns.^24,37,38

Similarly, participants also discussed the importance of providers understanding LGBTQ+ sexual health care needs. Previous studies have demonstrated providers’ lack of comfort and knowledge with discussing LGBTQ+ sexual health both in and out of cancer care.^39–42 In line with past studies, we found that welcoming conversations and educating oneself on LGBTQ+ sexual health was important for LGBTQ+ individuals.⁴ This may involve providers educating themselves on LGBTQ+ sexual health terminology to enhance conversations about sexual changes, or if need be, recommending additional resources such as a LGBTQ+ affirming sex therapist.^4,20

The current state of LGBTQ+ cancer care

According to the 2025 State of LGBTQ Health Annual National Survey, fear of stigma and discrimination, distrust in the health system, and distrust in the federal government were the most significant barriers to LGBTQ+ individuals accessing care.⁴³ This is not surprising, given the federal policy shifts away from research and resources supporting the improvement of LGBTQ+ health outcomes.^44–46 As was present during the 2016 Trump Administration, LGBTQ+ may experience higher mental distress and may be more cautious about who they are disclosing their LGBTQ+ identity to.^47,48 Additionally, LGBTQ+ people may be hesitant to share their sexual orientation or gender identity out of fear that this data may be released without their consent.⁴⁹ Environments where LGBTQ+ individuals do not feel safe accessing cancer care can exacerbate the disparities that LGBTQ+ people already experience.⁵⁰ Studies have found that LGBTQ+ patients with cancer who felt safe disclosing their sexual orientation or gender identity to their provider are more likely to be satisfied with their care.^35,51 To reduce LGBTQ+ disparities in cancer care, future research should focus on implementing strategies in clinical practice, such as through LGBTQ+ cultural humility trainings^21,23 and support programs, in order to improve provider-patient communication and participation in health care.

Limitations

The findings of this study should be interpreted with consideration for the limitations of the parent study and of secondary analyses. Non-white (Hispanic/Latino, Asian, Indigenous, Multiracial), gender-diverse (intersex, non-binary, transgender), and non-lesbian/gay (bisexual, asexual, pansexual, etc.) identities were underrepresented in this study. Additionally, participants resided in a total of 9 different states (Michigan, New York, Ohio, West Virginia, California, Tennessee, Connecticut, Maryland, and North Carolina) with little representation of participants from the Northwest or Southwest of the United States. Therefore, the perspectives presented here may not be generalizable to all LGBTQ+ cancer survivors and caregivers. The results may be affected by the participants’ ability to remember details of their experience, and their experiences may not reflect present-day challenges, given that most cancer survivors (70.1%) were diagnosed 3 years before taking part in this study. As this is a secondary analysis of a study to adapt an intervention, the main focus of the interview questions was about the intervention, not about providers.⁵² If questions regarding feedback for providers were asked more explicitly, additional responses may have arisen.

Conclusion

In this qualitative study, LGBTQ+ cancer survivors and their caregivers provided insight into how clinicians can improve cancer care for the LGBTQ+ community. They recommend that providers understand the added stress LGBTQ+ individuals may experience, showcase LGBTQ+ acceptance through visual signs and language use, be open to conversations about sexual concerns, offer additional LGBTQ+ resources, and prioritize patient-centered care. To support LGBTQ+ individuals, providers can implement these recommendations in support programs, medical trainings, and overall in cancer care.

Author contributions

Milena E. Insalaco (Conceptualization, Data curation, Formal analysis, Visualization, Writing—original draft, Writing—review & editing), Nora Akcasu (Data curation, Formal analysis, Project administration, Visualization, Writing—original draft, Writing—review & editing), Lelaina G. Nagle (Data curation, Project administration, Validation, Writing—review & editing), Karen D. Young (Methodology, Validation, Writing—review & editing), Theresa A. Hastert (Conceptualization, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Writing—review & editing), and Charles Kamen (Conceptualization, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Writing—review & editing)

Funding

This research was supported by National Institutes of Health (R34CA283408). The authors have no financial relationship with the organizations that sponsored the research.

Conflicts of interest

None declared.

Data availability

The authors have full control of all primary data and agree to allow deidentified data to be reviewed on reasonable request.