“Doing it on my own terms”: Transgender and nonbinary adults’ experiences with HPV self-swabbing home testing kits

Abstract

The human papillomavirus (HPV) carries a significant health risk for people with a cervix. Among transgender and nonbinary people, however, testing and treatment for HPV can pose difficulties, and even be traumatic at times. This current study is part of a larger mixed methods study conducted in Michigan in 2020, and it explores the experiences of transmasculine and nonbinary people with at-home self-swabbing HPV test kits and knowledge of HPV transmission/screenings. Phenomenological methods were used by conducting virtual qualitative interviews with ten transmasculine and nonbinary individuals with cervixes, ages 23–59. Interviews were independently coded by members of the research team and a tabletop theming method was used. Four themes were generated from the data: 1) Multilevel barriers; 2) “Get it done, so I know that I am safe”; 3) Contrasting preferences for care; and 4) Community calls for change. The discussion focuses on the implications of these findings for improving sexual health care for the transgender and nonbinary community, along with directions for further research.

1. Introduction

Sexually transmitted infections (STIs) are a significant health issue for the U.S. population (Jemal et al., 2013). The human papillomavirus (HPV) can take a particular toll due to ease of transmission and its tendency to remain asymptomatic while contributing to later health issues, including cancers of the cervix, head and neck, and anal canal (Jemal et al., 2013). Transgender and nonbinary (TNB) people may be at particular risk for HPV and related health issues, due to both limitations on available information about sexual health care for this group and justified fear and discomfort about seeking needed medical care. The current study uses qualitative interviews to explore the experiences of transmasculine and nonbinary people in their knowledge of HPV transmission/screening, and using home self-swabbing kits for HPV testing, one possible avenue to increase cervical cancer screening and treatment for pre-malignant conditions in these communities.

A note about language use: this work addresses the experiences of people who were assigned female at birth and identify as male, masculine, nonbinary, genderqueer, or another non-cisgender gender. Following the predominant self-reported genders in our study, we refer to this group as transgender and nonbinary (TNB), acknowledging that transgender and nonbinary are not mutually exclusive genders, nor are they the only non-cisgender genders.

Background on STIs and HPV

Following an analysis of the prevalence and incidence rates of eight different STIs in the United States, including HPV, researchers with the Centers for Disease Control and Prevention said that “[t]he burden of STIs in the United States is high” (Kreisel, et al., 2021, p. 208). The reported cases of chlamydia, gonorrhea, and syphilis all increased from 2014 to 2018 and the CDC estimated the prevalence of STIs in the United States at 67.6 million cases in 2018 (Kreisel, et al., 2021). Managing an STI diagnosis can significantly impact quality of life, due to both the acute and chronic health effects of these conditions and the mental health effects of the significant social stigma attached to STIs (Bender & Hill, 2021). The financial burden of STIs was estimated to be as high as $15.9 billion in “lifetime direct medical costs” in 2018, a significant strain on both individuals and the medical system (Chesson et al., 2021). This includes $755.32 million in treatment related costs for adults of all genders with HPV (Chesson et al., 2021).

HPV is the most common STI in the United States, estimated to have affected over 42 million individuals in 2018 (Lewis et al., 2021). While most people with HPV never develop symptoms, the virus can cause genital warts and/or cancer (Centers for Disease Control and Prevention, 2021). Each year in the U.S., approximately 35,900 instances of cancer, primarily cervical, are attributed to HPV (Lewis et al., 2021). Some infections, and thus downstream health impacts, can be prevented by HPV vaccines (Lewis et al., 2021).

Because most cervical cancer is caused by HPV, the United States Preventive Services Task Force altered cervical cancer screening guidelines in 2018 (USPSTF, 2018) so that individuals over age 30 with a cervix have the option to screen with a cervical swab HPV test instead of, or in addition to, cytological (Pap) tests. However, only HPV tests conducted on samples taken by a physician (or other healthcare provider) are clinically approved by the United States Food and Drug Administration. While self-collected specimens (either at-home or in a clinic) are not currently approved for clinical use/decision making, and are not covered by insurances, research has suggested that self-collected samples have the potential to be comparable to physician-collected samples (Arbyn et al., 2014), and offering self-collection has been shown to increase cancer screening participation (Racey et al., 2013). Thus, at-home HPV tests may be approved and become widely available in the future.

STIs and HPV in TNB individuals

There is a dearth of research about STI rates and health effects among TNB individuals—particularly nonbinary individuals, and even less from an international perspective (Simmons et al., 2020). In a recent systematic review of medical literature regarding HIV and STI diagnoses among binary trans people, van Gerwen and colleagues (2020) found that the existing literature (N=25) primarily focused on HIV and trans women. Their review also included syphilis, gonorrhea, and chlamydia, though not HPV. The research that does exist indicates that TNB individuals have comparable or higher HPV rates as their cisgender counterparts. Among trans men, having vaginal-receptive penile sex within the past year was associated with 5-fold increased odds of a high-risk HPV infection (Deutsch et al., 2020). Other studies have found higher rates of HPV (both anal and oral) in trans women, as compared to cis men who have sex with men (Cranston et al., 2019; Singh, et al., 2019), and one study found that the prevalence of high-risk HPV in trans men was at least as high as is generally seen in cis women (Reisner et al., 2018).

In the United States, 39.9% of adults aged 18–26 have received one or more doses of HPV vaccine, but there is limited information regarding HPV vaccination access for TNB individuals. Rutherford and colleagues (2021) compared nonbinary participants (n=150) to binary trans women (n=296) and sexual minority cis men (n=3,083) in Canada, finding that binary and nonbinary trans participants were more likely to report being vaccinated for HPV than their cisgender counterparts. However, the trans participants were also significantly more likely to report being denied the HPV vaccine (4.1% vs 1.6%) than the sexual minority cis men in the sample, potentially due to the many challenges faced by TNB individuals in accessing culturally responsive health care.

TNB barriers/disparities to sexual health care

To date, much of the research on sexual health of TNB people has focused on transgender women (Reback & Fletcher, 2014; Sun et al., 2020). There has been comparatively little focus on the sexual health of transgender men, and even less on that of nonbinary people (Frohard-Dourlent et al., 2017; McFarland et al., 2017; Schelm & Travers, 2017). What research there is has found that transgender people face both institutional and individualized barriers to sexual health care, particularly for cancer screening (Connolly et al., 2020; Weyers et al., 2021; Gatos 2018). Transmasculine and nonbinary people in the United Kingdom report being discouraged from accessing cervical screening due to stigma and discrimination, dysphoria, and feeling that they lack sufficient information about screening or that it does not apply to them (Berner et al, 2021). Unsurprisingly, transmasculine patients have lower utilization of Pap tests and more frequently have inadequate Pap collections (i.e., cannot be evaluated due lack of cells or other factors) (Peitzmeier et al., 2014a).

At the institutional or macro level, healthcare providers frequently display anti-trans stigma, which can put transgender patients at increased risk of medical discrimination (Poteat et al., 2013). Indeed, healthcare providers report feeling unprepared to care for TNB patients and unsure of where to go to get support or additional information regarding medical or ethical concerns (Snelgrove et al., 2012). Grant et al. (2011) found that 19% of respondents to a national survey of TNB people in the United States reported being denied service by a healthcare provider; 50% reported having to educate providers about transgender care. Even when providers and clinics attempt to institute trans-inclusive policies, they may fail to be inclusive or educated about trans people’s needs in actual practice, leading to practitioners who are unsure of the procedures for treatment of TNB people or do not have necessary equipment (Scheim & Travers, 2017).

TNB people are aware of these issues and report difficulty finding trans-inclusive healthcare providers (Scheim & Travers, 2017, Dhillon et al., 2020). In the U.S., 28% of TNB people report experiencing verbal harassment in a medical setting and 2% report being physically assaulted in a doctor’s office (Grant et al. 2011; James et al., 2016). Widespread experience of discrimination and trauma can lead transgender people to delay seeking needed medical care (Grant et al., 2011; Scheim & Travers, 2017, TRANS pulse, 2020). Cruz et al. (2014) found that transgender men and gender nonconforming people [sic] are particularly likely to delay needed care, and Kattari and colleagues (2019) found that transmasculine people are almost twice as likely as transfeminine people to delay care. Sixty percent of respondents to the 2018 Michigan Transgender Health Survey reported putting off needed medical care; of these, 46% reported delaying care because of fears of gender-based discrimination and 38% reported delaying care due to discomfort with physical examinations (Kattari & Misiolek, 2019). TNB people’s pervasive negative experiences while seeking healthcare are linked not only to putting off necessary medical care, but also to worse mental health outcomes (Kattari et al., 2020).

Cost of care may also contribute to delaying treatment; nationally, TNB people are at increased risk of living below the poverty line and lacking health insurance (Grant et al., 2011). In Michigan, 20% of TNB people report earning less than $10,000 a year, and 25% report earning between $10,000 and $25,000 (Kattari & Misiolek, 2019). Relatedly, TNB people with lower levels of education have less access to trans-affirming care, and those with low-mid level incomes are more likely to have to educate their providers, suggesting less ability to select inclusive providers when seeking care (Kattari et al., 2020; White Huto et al., 2017).

Potential solutions/needs for the TNB population

A number of potential strategies have been identified for improving sexual healthcare and HPV testing and treatment for TNB people. Baur et al. (2009) note that informational erasure of this population can be countered by incorporating TNB participants in health research and increasing dissemination of extant guidelines on TNB healthcare provision. When developing and engaging in research on TNB health and planning for dissemination of findings, it is vital to consult with TNB communities (Gibson et al, 2021). Given the limited research on HPV related risk and vaccine uptake for transmasculine and nonbinary people, specific focus on these groups is needed (Apaydin et al., 2018). TNB people report that having testers they trust and integration of testing into gender-affirming clinics facilitate increased STI testing uptake (Scheim & Taravers, 2017). Apadin et al. (2018) recommend including education about HPV risk as standard care in trans-inclusive clinics.

Even with supportive and affirming providers, many TNB patients are uncomfortable with physical examinations (Kattari et al., 2020); the availability of self-collection tests may increase the likelihood of achieving recommended levels of HPV testing (Connolly et al., 2020; Maza et al, 2020; Weyers et al, 2021). Discussing Australia’s pivot in cervical screening, informants with expertise in cancer policy, sexual and reproductive health care and trans health advocacy agreed that while trust building between patients and practitioners will be important, for people with trauma or gender dysphoria, self-collection may be a particularly good option for screening (Gibson et al., 2020).

Research Question

Based on these experiences of TNB individuals accessing HPV screening services and other preventative sexual and reproductive healthcare, this study examines the lived experiences of TNB individuals assigned female at birth (AFAB) in Michigan who were mailed self-swab kits for both frontal/vaginal and anal swabbing for HPV testing. In exploring participants’ responses to this process, we answer the following questions: 1) How do these individuals feel about the opportunity to use at-home self-swabbing kits?; 2) What are some of the challenges facing these individuals regarding knowing about and accessing HPV screenings and other sexual/reproductive health care?; and 3) How can medical professionals better support this population when it comes to HPV screening and sexual/reproductive health care?

2. Methods

Recruitment and enrollment

This qualitative interview study was part of a larger study investigating HPV self-sampling in a transmasculine and nonbinary AFAB population. The parent study aims to enroll 115 participants to self-collect a genital self-swab, anal self-swab, and oral rinse at home with a test kit mailed to them. These samples are paired with a demographic/behavioral survey as well as a self-swab survey assessing the comfort, ease of use, and preference for self-collecting the genital and anal samples. Participants of the main study were recruited through notices posted through Michigan Medicine’s Comprehensive Gender Services Program and the University of Michigan Health Research portal, social media managed by the Michigan Institute for Clinical and Health Research, outreach to Michigan based LGBTQ+ groups and organizations, and word of mouth referrals. Interested participants reached out to study staff, who screened them for eligibility.

The eligibility criteria required participants to 1) Be between the ages of 21–65; 2) Have been assigned female at birth (AFAB); 3) Have a male, masculine, nonbinary, queer, or similar gender; 4) Not be currently pregnant; 5) Not have had their cervix removed; (6) Not be menstruating on the day of the genital swab self-collection; and 7) Live in Michigan. Eligible participants were then invited to an individual, virtual video call to review the consent form and details of the study and to consent electronically. Study data were collected and managed using REDCap electronic data capture tools hosted at the University of Michigan (Harris et al., 2009; Harris et al., 2019). Participants were invited to express interest in the optional qualitative interview sub-study, and a subset of ten participants were selected from the 23 that had expressed interest within the first two months of enrollment; participants were selected to represent a diversity of self-reported pronouns but not on the basis of any demographic characteristic. Given resource constraints, we focused on higher-quality interviews with a smaller sample, rather than shallower interviews with a larger sample. Overall study staff included a mix of transgender, nonbinary, and cisgender researchers, with the qualitative interviews being conducted and coded exclusively by nonbinary and transgender researchers.

Interview methods

For this study, we used semi-structured virtual interviews with pre-established main prompts followed by individual probes in response to each participants’ answers. They were conducted by Kattari (a white nonbinary femme) on Zoom during December 2020 and January 2021. Each interview included questions examining participants’ experiences of HPV self-swabbing, thoughts about HPV risk and screening, and ideas on how health care professionals could be more inclusive and affirming to transgender and gender diverse patients. Each main question was followed by probes based on individual responses. All interviews included captions and were recorded digitally with the participant’s verbal consent. Interview recordings were transcribed by Gross and cleaned and anonymized transcripts were made available for analysis.

Additionally, Kattari helped participants fill out a screening sheet containing questions regarding sociodemographic information, pronouns, and preferred pseudonym for use in any research publication, to ensure accurate use of genders and pronouns in publications, understand the diversity (or lack thereof) amongst participants. This information is presented in the participant table.

Ethics

This study was approved by the University of Michigan Institutional Review Board (IRBMED:HUM00166980). Parent study protocols, consent forms, and sampling instructions were reviewed by ten TNB community members participating in a quality improvement study; each person received $100 for providing feedback. All participants gave documented, informed consent electronically using the SignNow platform. Participants were compensated with a $50 gift card for completing the main study and an additional $25 gift card for the qualitative interview.

Analysis

Phenomenological analysis began with Kattari creating an initial code list by hand via inductive coding for an initial three interviews (Padgett, 2012). Next, Kattari took an un-coded transcript and conducted consensus coding with Gross before deliberating on the codes. Any discrepancies were discussed by both investigators until consensus was reached, and a final codebook was created for use by all coders. Each interview was coded by two investigators and the coders collaborated on any discrepancies to determine appropriate language and codes.

Following coding, we used a digital tabletop method to identify and name themes. This new digital version of tabletop theme-ing (Saldaña, 2016) was created due to the COVID-19 pandemic and was initially reported in Jackson Levin et al., 2020. We referred to an ecological systems theory perspective (Bronfenbrenner, 1986; Green & McDermott, 2010), centering each participants’ unique experiences within their social environment as we identified themes. Eventually, investigators Kattari, Gross, and Harner reached consensus on the themes that are discussed below.

Participants

This table of participants provides their genders, various identities, pronouns, and the pseudonyms they selected for this study. All ten of those who expressed interest initially were contacted with information about informed consent, and all completed the virtual interview.

3. Findings

Overall themes

Four themes were generated from the data through co-construction based on the codes. These were: 1) Multilevel barriers, in which individuals spoke to the different types of challenges they had in getting HPV testing at the interpersonal, institutional, and societal levels; 2) “Get it done so I know that I am safe,” in which participants talked about how they recognized the importance of HPV testing; 3) Contrasting preferences for care, where it is clear there is no one size fits all approach to HPV testing; and 4) Community calls for change, though which the participants named future changes they would like to see in the field to increase inclusivity.

Multilevel Barriers

As in much of the previous research regarding TNB individuals and health care experiences, participants described a variety of barriers at the micro (interpersonal), mezzo (organizational) and macro (systemic) levels. These included participants’ fears of gender dysphoria being triggered by the test itself, as noted by Nat: “I have a strong feeling that if I were to go to an OB GYN and get a Pap smear, it would be a very dysphoric experience.” Another participant noted that anxiety about trying to figure out which tests they needed, based on their body parts, was a significant barrier to care. Much of the available information relied on male/female language, rather than specific anatomy, leading to confusion. For instance: if a person has a vagina but no cervix, a cervical Pap test would not make sense, regardless of whether that person was TNB or cisgender. Other participants discussed systemic issues, including language like “all women over the age of 30 should be tested,” which doesn’t provide clarity on recommendations for TNB individuals.

Because of this confusion, Peanut didn’t even know which tests were appropriate for him and his body:

There’s an increased, like, confusion and frustration regarding what applies to me and what doesn’t, with, you know, forms or things that are said to be male or female, or whatever. I have no idea how and if this applies to me because, you know, it’s said for male, but I don’t know if I qualify for what they’re referring to as male.

Many of the participants discussed very negative experiences with health care providers at the mezzo, or organizational, level which contributed to avoiding HPV or Pap tests. Thor shared how her experience with a medical professional years ago had a lasting effect on his decision to not follow up with preventative care or testing: “I’ve had such horrifying experiences with the medical professions. Then I didn’t see a doctor for a really long time. I was like, I’m not going to any health care professional! They’re assholes.” Another participant, M, noted being very competent in navigating health care, but struggling with providers’ clear discomfort in treating him as a reason they have avoided getting screenings: “I found that healthcare professionals in general become very uncomfortable with my presence in the office, even despite the fact that I know a lot about my health care and my health care literacy is very strong.”

Over and over, participants shared stories of being harmed in medical settings, from being misgendered to being told they didn’t belong in “women’s” clinics; from the high costs of treatment to being explicitly denied care. These experiences often ruptured trust in medical systems and healthcare providers, reducing the likelihood of making appointments for HPV screenings, among other things:

I’ve lost a lot of trust and a lot of faith in the healthcare system, and in health care providers. And I think that definitely plays a part in my aversion to the idea of having a Pap smear, seeing an OB GYN, because I’m just like, I don’t want to deal with anymore fucking doctors. – Nat

Participants’ reports of traumatic experiences were not always based on TNB status, and included experiences both around traumatizing care and the positive experience of having trauma informed care:

My first experience [getting a Pap smear] was rather traumatic for non gender-related issues. The physician was not very experienced with Pap smears and used a speculum that was much too big and caused a rip in my vagina… and didn’t stop when I told her to stop. And I had to seek health care for a rip in my vagina. So I wasn’t overly enthusiastic about my second one, but my provider was really fantastic in talking through it and fantastic in showing me that she respected my right to stop things. And my second one went off without a hitch. - M

Other participants talked about systemic level barriers that had prevented them from getting needed Pap tests: being uninsured or on their parents’ insurance; not being out to their parents; being unemployed or underemployed and not having enough funds to cover medical expenses. Participants also discussed being unsure about how screening recommendations applied to TNB people and concerns about provider inclusivity related to living in conservative areas.

Finally, multiple participants noted as a barrier how gendered HPV testing and STI testing/cervical screenings are as a whole, across both institutions and systems. Several appreciated that our study covered up as much of the gendered language on the self-swab kits as possible, making it less triggering for them to use, as compared to products packaged in pink and purple, with language like “women’s,” “ladies,” etc.

“Get it done, so I know that I am safe”

This theme is titled using an in vivo quote from a participant articulating their desire for a Pap smear so that they could have the comfort of knowing their HPV status and risk for cervical cancer. One participant spoke about focusing on their health and navigating the health care system after many years avoiding it due to perceived transphobia and lack of insurance. They noted getting cervical cancer screening was a part of that:

I made a promise to myself that 2020 was going to be my year of going to the doctor, and I went to the doctor so many times this year. Probably like 18 times, and I just did so many things to catch up on my health care because I knew that, for myself, my personal life, it’s very important to me to go to the doctor in like the formal sense, and also, I figured that I could just expose myself to that many doctor’s offices, and the things that were more uncomfortable would become less uncomfortable, just from repetition. - Emeric

Another individual shared that as they have gotten older, they have become more focused on preventive care, and have been attempting to participate in health screenings earlier than they had previously.

I try to be as health conscious as I can just because I do know that as you get older, you know, more health things could potentially start arising, and if you catch them early you, you know, can potentially beat something if you’ve got the beginnings of something, or you know overall staying healthy.” - Moonypsi

Participants frequently brought up how uncomfortable they find the process of getting Pap smears, and, in contrast, how easy the at-home testing kit was to use:

It was very easy to use. It looked a little intimidating; it looked a little bit like an alien device. But once I followed the instructions, it was very easy to use and hurt less than my first Pap smear. Hurt a little more than my second Pap smear, but actually in a different way, though in a less unpleasant way because it wasn’t that internal cramping, it was just kind of an external like little kind of ‘ygguhggh’ sensation. -M

Being able to have control of the situation also came up for many participants. Several shared that they were survivors of sexual assault, which made Pap tests particularly uncomfortable, above and beyond the potential for gender dysphoria. However, being able to self-administer the HPV test allowed them to take care of themselves and their bodies while maintaining emotional safety. M said it best:

It’s pretty easy…it wasn’t comfortable. It wasn’t super fun, but it was pretty easy to do, and it was over in just a second… I had full control over the situation… I could stop it at any time. I didn’t have to worry about waiting for someone else to stop it.

Contrasting preferences for care

Perhaps not surprisingly, given the heterogeneity across the TNB population, there was not agreement across participants of one preferred method. Many of the participants preferred the home swab option over going into a clinic or office for a test:

I didn’t have to go into an office and make an appointment and all that nonsense… if it was less expensive and less like taking time out of my life to do it, I would do it at home, for sure. Yeah. It’s just more comfortable. – Thor

M had similar thoughts to Thor, also bringing up issues about privacy and control that should be considered by providers when assessing whether or not to offer at home swabbing options: “I definitely like this method much better than the provider Pap smear…and I had full control over the whole situation. I didn’t have to let someone else have control.”

Another participant brought up their history with sexual assault and how traumatic it could be for them to be in a traditional medical setting, emphasizing the need for trauma informed care, which might include offering home swabbing options:

…it was slightly uncomfortable, but not any more than a typical Pap is, but the comfort of being able to do it myself, and like in the confines of my own home was a big deal. I have issues with, you know, physical dysphoria… just as a sexual assault survivor, that’s something that’s difficult for me…to have a noninvasive way to do that myself …it made it a lot easier to process than it would be in a doctor’s office. -CJ

Another participant approved of the home self-swab because of the convenience, and felt it would make them more likely to get this assessment in the future:

Like for me, it would make it a lot easier….it wouldn’t be something that I would put off as easily because it’s right here in my house. It’s right here, and I don’t have an excuse to not do it. - Hawk

Others expressed anxiety about doing the swabs themselves, and shared that they would prefer that a provider ensure that everything was done correctly and that results were accurate. One participant also felt that having provider offered swabs took pressure of themselves for scheduling and actually conducting the swab:

Provider-collected is nice because the provider takes care of it all for you, so you can just like, scroll Instagram while they do it. And there’s an appointment, you just show up and there’s no scheduling it into your schedule and saying, you’re going to do it on Monday, and then you end up waiting till Friday, and then you’re like, well, I don’t want to do this because I’ve put it off for so long. – Emeric

Another participant agreed, and noted that she didn’t have much in the way of dysphoria or past medical trauma. She felt fairly comfortable going into a medical space and engaging with a provider to do her HPV swabbing, so that she could be more comfortable with the results:

I probably would still choose the doctor, just because in my head, I trust professionals, more than I trust myself in this particular situation… I don’t have to worry about messing up any results or anything, and I’m not body shy, per se. …I’m not someone that it phases. If I had the choice, I would prefer probably to go to the doctor, just to make sure that everything is as near perfect as it can be. - Moonypsi

The diverse preferences within the TNB population indicate a need to allow these patients the choice to have the swab done by the provider in an office, or to self-swab at home using a kit, rather than a single method for all TNB patients. This echoes many of the discussion of health care with the TNB population – there is not a single one size fits all approach.

Community calls for change

The final theme generated related to calls for change, which could be used to better inform future HPV (and other STI) screenings to support implementation and uptake. Many of these calls centered on how providers themselves could better support TNB patients in their care—whether they are performing cervical cancer screening in the office or sending patients self-swab kits to do at home.

Some of the calls for action simply ask that providers familiarize themselves with basic etiquette on how to interact with TNB patients:

I think they can just take the time to, outside of their patients, educate themselves about the trans community…I can’t tell you the number of times I’ve been the first trans person that a physician has encountered as a patient. I was working for a doctor who could not figure out what pronoun to call me and instead of asking, he called me she/he every time. Like I wouldn’t notice. And just the basic things like taking time to understand how to talk to a trans person, how to ask what their pronoun is. It’s just those kind of trans basics. -M

Emeric points out that it isn’t only the health care providers who need to be more aware and inclusive of their TNB patients, but everyone and everything in the office, from the front desk staff to the materials that are offered.

Maybe clinics hiring people who are trained in inclusivity, or hiring people who are actually trans to write the pamphlets, or to do intake, so that you’re not standing there awkwardly explaining to somebody that your pronouns are they/them, and they’re looking at you like you have an extra limb like sticking out of your shoulder or something.

Elle notes changes don’t need to be involved: “Honestly, just changing their forms would be huge. Because once you change the forms and the more people see it, the more normal it gets. Just normalizing it would be huge.” This is something that providers and medical systems can do right now to start being more inclusive of their TNB patients: changing forms, both online and in person, to have pronouns and more gender options.

Some participants discussed how they only went to health care providers for medical emergencies because of concern over treatment. CJ connected this with their call for change:

There’s experiencing healthcare and then there’s experiencing healthcare that’s actually going to help you in the long term, and not just the short term, and I think that having repeated instances in which you feel comfortable and represented in a space are really important, because you’ll return and you’ll keep that up.

Given the history of TNB people delaying medical care due to fear of discrimination and lack of inclusive providers, even one positive interaction can lay the foundation for future positive engagement and support the health needs of the TNB population.

Lastly, a meta conversation occurred during the interviews about research itself, from including TNB people on research teams to conducting more research about TNB health. Emeric supported this call, saying, “I think having a higher volume and higher funding for different trans studies and putting an emphasis on creating more literature would create more success in trans healthcare.”

Discussion

This study explored the experience of TNB AFAB individuals self-collecting genital HPV tests, and barriers and facilitators towards regular self-testing for HPV. Drawing on an ecological systems framework locating each person within their nested social environments (Green & McDermott, 2010), we identified four themes that will inform quantitative analysis of self-swab assessment surveys in the parent study.

Our work highlights the complicated relationship that many TNB people have with healthcare and preventive screening, as well as the need to identify and dismantle barriers. Transphobia affects the care received by TNB individuals (Stroumsa et al., 2019). However, avoiding direct, active discrimination is insufficient to create an affirming environment; even experiences with well-meaning but uneducated or inexperienced physicians can cause TNB patients to avoid healthcare in the future. However, positive and affirming interactions can build confidence and trust in the healthcare system. Although many medical schools now offer some coverage of LGBTQ+ medical issues, the total amount of time spent studying these topics is frequently limited. Clinicians are left to seek out training through continuing medical education but may not select LGBTQ needs.

Beyond training, misperceptions about HPV risk in TNB individuals may reduce providers’ recommendations of cervical cancer screening. Agenor et al. (2016) found that many providers thought transmasculine individuals were at low risk of cervical cancer because of their belief that they did not engage in penile-vaginal intercourse. These misconceptions highlight the need for studies to elucidate the specific risks for TNB people, acknowledging the diversity within that group. Transmasculine individuals are less likely to receive preventive screening (Peitzmeier et al., 2014a), likely due to multiple barriers to care.

Among cisgender people, access to self-collection options has been repeatedly shown to increase participation in cancer screening (Racey et al., 2013). While further standardization and testing may be needed to show the reliability and robustness of self-collection across the diverse populations of people with a cervix, it is paramount that such evidence be rapidly accumulated so that regulatory bodies can make self-collection a viable option. This is likely of particular importance to TNB people and other marginalized and underserved populations. As our work shows, not all people will choose to self-screen, but a self-screening option will benefit not only TNB individuals but other vulnerable populations. Other studies have found similarly complex responses from TNB people regarding self-collection, but consistently identify a high degree of interest (Berner et al, 2021; Dhillon et al, 2020; Weyers et al, 2021). These contrasting preferences highlight differing experiences among TNB individuals, who like all of us exist in their own unique ecological context. Personal differences, features of exosystems like family culture, experiences with the macrosystem including discrimination or harassment, and age (the chronosystem) all contribute to our complex relationships to bodies and healthcare.

Preventive care is much more than an HPV test, which might make in-person visits preferable. However, the possibility of self-screening combined with increasing availability of telehealth may allow for remote care and expanded access. Indeed, TNB populations face an array of health disparities (e.g., James et al., 2016; Grant et al., 2011; TRANS Pulse, 2020) that physicians could help address. The option of at-home testing may make the difference between no care and, in the least, cervical cancer screening. Related work on HIV self-testing has similarly demonstrated potential among transgender people for its privacy and convenience, though cost, among other factors, remains a barrier; self-testing options for HPV will need to be affordable in order to be accessible.

Limitations

The largest limitation with this study is the use of a convenience sample. This applies both to the larger study and to the qualitative portion—and not only to recruitment (of individuals who were willing to use the self-collection HPV test) but also to selection of individuals who were willing to participate in a follow-up interview regarding their experience. As this study was phenomenological, this limitation is less critical here than in quantitative research, but we may have missed the experiences of TNB people who were beyond our recruitment scope or who did not want to participate in self-collection. As with all qualitative research, our findings are not meant to be generalizable to all TNB individuals and instead reflect those individuals who participated.

Our sample was predominantly white, and given our location of Michigan with approximately 13.79% of this state identifying a Black or African American, the lack of Black participants in this portion of the study is a significant limitation. We also did not have any indigenous, Middle Eastern, or Latine participants. This may be related to larger study being predominantly white, and/or the self-selection of individuals who were willing to participate in qualitative interviews, and/or the fact that the interviewer was themself white. Future research should partner with community organizations that work with Black, Indigenous, and other communities of color to ensure more voices of TNB individuals of color are included in research around HPV self-swabbing, including having researchers of color on these teams.

Conclusion

Our findings demonstrate the potential benefits of a self-collected HPV swab for some TNB individuals. We recommend affordable self-testing options be clinically developed, so that TNB (and other) individuals can be offered the choice to self-test for HPV at home or in a clinic under a provider’s supervision, or to undergo traditional cervical cancer screening (Pap test or clinician-collected HPV test) in a provider’s office. This, in addition to the previously demonstrated need for more training of health care providers in TNB affirming and inclusive care. The goal should be increased screening rates, leading to decreased HPV-related cancer rates in this population. More research is needed on a larger scale to better understand best practices, and more resources should be allocated to allow for these multiple screening modalities.

Table 1.

Participant demographics and pronouns.

	Pseudonym	Age	Gender	Pronouns	Race/Ethnicity
P1	Emeric	27	Nonbinary, trans masculine, neurtrois, gender non-conforming	They/them	Korean American
P2	Hawk	27	Nonbinary genderqueer	They/them	White
P3	Nat	23	Nonbinary	They/them	White
P4	Moonypsi	33	Queer female	She/her	White
P5	Elle	35	Apathetic	They/them	White (“as white as it gets”), German/Cajun
P6	Peanut	42	FTM transgender male	He/him/his	White (“Caucasian”)
P7	CJ	29	Nonbinary genderfluid	They/them	White
P8	M	25	Trans masculine	They/he	White
P9	Thor	59	Dyke	Any pronouns	Mixed
P10	Kip	32	Nonbinary genderqueer	They/them and he/him	White