“The Idea of Categorizing Makes Me Feel Uncomfortable”: University Student Perspectives on Sexual Orientation and Gender Identity Labeling in the Healthcare Setting

  • Kathryn L. Scheffey
  • Shannon N. Ogden
  • Melissa E. DichterEmail author
Original Paper


As healthcare settings are increasingly adding sexual orientation and gender identity (SO/GI) to routinely collected patient demographic information, it is important to understand how patients conceptualize and label these identities. This study explored university students’ perspectives on and experiences with choosing SO/GI labels in the healthcare setting. We employed a mixed-method approach, collecting survey data on self-identified SO/GI labels across various contexts and conducting focus groups centered around experiences of SO/GI data collection and labeling in healthcare. Thirty-four graduate and undergraduate university students completed the survey and participated in six one-time focus groups. While many participants indicated that their self-identified SO/GI labels were consistent across contexts/relationships, 47% indicated that they used different labels to describe their SO or GI depending on the context. The focus group discussions revealed ways in which participants struggled to label their SO/GI on forms: They reported that (1) their authentic SO/GI labels were not among the commonly listed labels or (2) they felt that labeling their SO/GI identities was problematic. Participants reported that choosing a label that did not fit their lived experience was not only inaccurate, but could also feel painful and alienating. These findings hold implications for the collection and interpretation of patient SO/GI information, both for epidemiological purposes and for patient-centered care.


Sexual orientation Gender identity Fluidity Labeling Categorization 


Following recommendations from federal and professional agencies, healthcare settings are adjusting intake forms and medical record demographic fields to include information on patient sexual orientation and gender identity (SO/GI). The purpose of SO/GI data collection in healthcare is twofold: to improve individual clinical care and to collect population-level data in order to assess and address health disparities for sexual and gender minority (SGM) populations (Centers for Medicare and Medicaid Services, 2015; Institute of Medicine, 2011; Office of the National Coordinator for Health Information Technology, 2015). The potentially fluid and multidimensional nature of SO and GI, as well as differences in labeling across contexts, may pose challenges in streamlining the data collection.

Recent research has found that collection of patient SO/GI is largely acceptable to both patients and providers (Ruben, Blosnich, Dichter, Luscri, & Shipherd, 2017). Little research, however, has examined whether what is collected and documented accurately reflects the identities and experiences of patients and whether this categorization is clinically useful. When considering SO/GI data collection, it is important to recognize the potential fluidity of identities and implications of categorizing them into fixed labels.

Sexual orientation is understood as a multidimensional construct, encompassing identity, attraction, and behavior (Igartua, Thombs, Burgos, & Montoro, 2009; Ott, Corliss, Wypij, Rosario, & Austin, 2011). The prior literature has also substantiated the idea of sexual fluidity—defined as, “a capacity for change in attractions which results from an individual’s heightened erotic sensitivity to situational and contextual influences” (Diamond, Dickenson, & Blair, 2017, p. 194)—and the existence of a sexual continuum (Epstein, McKinney, Fox, & Garcia, 2012; Kinsey, Pomeroy, & Martin, 1948; Savin-Williams, 2016). Studies have shown that SGM individuals identify with a variety of sexual orientation labels beyond the commonly used three-category model (heterosexual, gay/lesbian, and bisexual; Greaves et al., 2017; Russell, Clarke, & Clary, 2009). For example, a study using national New Zealand data (Greaves et al., 2017), which included an open-ended measure of sexual orientation, reported 49 unique sexual orientation labels. Studies have also shown that the dimensions of sexual orientation (identity, attraction, and behavior) can shift along the sexual continuum over time (Diamond et al., 2017; Dickson, van Roode, Cameron, & Paul, 2013; Mock & Eibach, 2012).

The literature on gender identity supports the idea that gender is also multidimensional, on a continuum, and can change over time (Butler, 1990; Corwin, 2009; Johnston, 2016; Nestle, Howell, & Wilchins, 2002). Studies have found that sexual orientation identities among gender minority individuals, in particular, are fluid and heterogeneous (Bosse & Chiodo, 2016; Katz-Wise, Reisner, Hughto, & Keo-Meier, 2016).

Despite the variety of SO/GI labels and fluidity in these identities, SO and GI are often operationalized as limited and static categories that rely on the male/female binary. Prior studies have shown that static options for sexual orientation are restrictive and do not account for the complex nature of the lived experience of sexuality (Better & Simula, 2015; Igartua et al., 2009; Korchmaros, Powell, & Stevens, 2013).

In addition to the limitations of SO/GI categories, individuals may choose to identify their SO/GI differently to different people. For example, a recent qualitative study of SGM individuals described the concept of role flexing, where individuals would choose to not disclose their identities and/or downplay certain personal characteristics in order to reduce experience of stigma and increase their sense of safety (Bry, Mustanski, Garofalo, & Burns, 2017). Individuals may choose to conceal their SO/GI in particular contexts or to particular individuals or they may utilize different labels or terminology depending on the setting. SO/GI role flexing or identity change based on context has not been well-researched.

The vast majority of studies on SO/GI categorization and fluidity are focused on sexual orientation measures exclusively and do not explore participants’ experiences with their gender identity. Most of the studies on SO/GI fluidity also focus on individuals who identify as lesbian, gay, bisexual, or transgender (LGBT), neglecting the experiences of individuals who may experience fluidity in their SO/GI but do not identify with one of these labels or as a sexual or gender minority. Variation in SO/GI identities has implications for SO/GI data collection, especially among younger generations who are increasingly using a wider range of SO/GI labels (GLAAD, 2017). The purpose of this study was to understand patient perspectives on choosing SO/GI labels in the healthcare setting.


In the present study, we employed a mixed-method approach. We collected survey data and conducted focus groups to identify: (1) how individuals self-describe their SO/GI, (2) whether or not these labels change across context, and (3) perspectives on SO/GI categorization and labeling in the healthcare setting. We did not restrict our study to those identifying as SGM individuals; rather, we sought to gather input from individuals across a spectrum of SO/GI.

Participants and Procedure

Graduate and undergraduate students were recruited from a large, urban, mid-Atlantic city in the United States to participate in a one-time focus group on SO/GI categorization and data collection in the healthcare setting. Study participants were recruited through flyers posted on university campuses, and e-mails and electronic newsletters distributed through student groups and academic departments. Recruitment materials informed potential participants of the study’s objectives and invited them to volunteer by filling out a brief online recruitment form that asked for name, contact information, student status, and time availability to enable the research team to follow-up with interested individuals. Participation was on a first-come, first-serve basis and was dependent on time slot availability. To be eligible for the study, participants had to be currently enrolled in an undergraduate or graduate university program, at least 18 years old, and available to participate in person in one of the focus group sessions. A total of 70 students completed the online recruitment form and 34 enrolled in the study and participated in one of the six focus groups held between October 2017 and February 2018.

The University of Pennsylvania Institutional Review Board approved the study, and written informed consent was collected prior to data collection. Prior to the start of the focus group discussion, participants completed a brief confidential individual survey. The survey collected demographic information (age, current degree program, and race/ethnicity) and asked open-ended questions about how participants label their SO/GI and if these labels change based on context (e.g., parents, close friends, acquaintances, healthcare providers).

The focus groups were moderated by trained graduate-level research team members. The focus group format was chosen in order to encourage the development and expansion of ideas within an interactive group setting. The discussion was facilitated using a semi-structured focus group guide. The guide topics included general reactions to the questions on SO/GI labeling, perspectives and experiences on the collection and documentation of SO/GI information in healthcare settings, and the clinical relevance of this information. Focus groups ranged in length from 54 to 81 min (mean length 70 min) and were audio-recorded and transcribed verbatim by a professional transcription service.


Quantitative survey data were analyzed using SPSS 24 statistical software. Descriptive measures were used to assess frequencies of each response reported.

Qualitative data were managed and organized in NVivo 11. Members of the research team first independently read each of the focus group transcripts and developed an initial coding scheme as a group, based on the individual reviews. The team employed principles of grounded theory (Corbin & Strauss, 1990) to identify emerging themes from previously determined topic areas. Two team members, who were trained in qualitative research methods, then independently coded each transcript. Through multiple iterations, the research team finalized a coding scheme and codebook with code definitions and exemplar quotes. Differences in the application of codes were resolved through team discussion and consensus. For this paper, we focused on the data related to patient perspectives on the categorization and fluidity of SO/GI.


Quantitative Data: Survey

Participants included 8 (23%) undergraduate, 19 (56%) masters/professional, and 7 (21%) doctoral students, ranging in age from 18 to 38 years old (median age 26). Half (50%) of the participants identified their race/ethnicity as white, five (15%) identified as two or more races and/or ethnicities, and eight (24%) identified as Asian or South Asian (Table 1).
Table 1

Participant characteristics (N = 34)




Age (in years)






Student affiliation




 Masters or professional














 South Asian









 Two or more



 Not disclosed



Fourteen (41%) of the participants identified their sexual orientation as “heterosexual” or “straight,” nine (27%) participants identified with the sexual minority labels that are commonly offered in demographic questionnaires (gay/lesbian/bisexual), and six (18%) participants identified as queer (Table 2). The remaining five (15%) participants identified their sexual orientation as: asexual, “bisexual/queer,” “queer–demisexual,” “unsure,” and “mostly straight.”
Table 2

Participant self-reported sexual orientation (N = 34)






















Mostly straight















The largest gender identity group selected was female/woman (21, 62%; Table 3). However, participants reported different labels within this category, identifying as female, cisgender female, woman, and cisgender woman. Six (18%) participants identified as male/man with different labels within this category, including male, cisgender male, and man/male. Six (18%) participants identified as some iteration of nonbinary: nonbinary, genderqueer/nonbinary, genderqueer, and genderfluid. One participant identified as agender but noted being okay with cisgender depending on the context.
Table 3

Participant self-reported gender identity (N = 34)




Agender (but okay with cisgender depending on context)



Cisgender male



Cisgender female



Cisgender woman



























About half (53%) of the participants indicated that their SO/GI labels do not vary by relationship with the person to whom they are disclosing their SO/GI, with 47% indicating that they may identify either SO or GI differently depending on the relationship or context (Table 4). Most, but not all, of those who indicated that their SO or GI might vary across context identified as nonheterosexual or non-cisgender (not shown in table). As many as 35% of participants indicated that they may identify their sexual orientation differently by context, and 21% indicated that they may identify their gender identity differently by context. For sexual orientation, the context within which the most participants indicated that their label may vary was with parents (32.4%), followed by extended family (31.3%), professors/employers and acquaintances (26.5% each), and doctors/healthcare providers (17.6%). For gender identity, the context within which the most participants indicated that their label may differ was with extended family (21.2%), followed by siblings (19.4%), and professors/employers, parents, doctors/healthcare providers (all 18.2%).
Table 4

Change in sexual orientation and gender identity labels across different contexts


N (%) indicating label may differ across context

Sexual orientation

N = 34

Gender identity

N = 33a


11 (32.4)

6 (18.2)


4 (13.8)b

6 (19.4)c

Extended family

10 (31.3)c

7 (21.2)

Close friends

4 (11.8)

2 (6.1)


9 (26.5)

5 (15.2)

Professors or employers

9 (26.5)

6 (18.2)

Doctors or healthcare providers

6 (17.6)

6 (18.2)

Any context

12 (35.3)

7 (21.2)

aExcludes one participant with missing data for context and gender identity

bExcludes five participants indicating “not applicable”

cExcludes two participants indicating “not applicable”

Qualitative Data: Focus Group Discussion

There was variation across participants in views on SO/GI categorization and reactions to requests for SO/GI labels on forms and surveys. Some participants, generally those with cisgender, heterosexual, or static identities, noted that filling out forms or answering questions about their SO/GI was easy and did not require much thought. In response to the short survey, one participant said, “For me as a cisgendered heterosexual person, I didn’t even think anything of it. It was just boxes, check.” However, other participants, particularly those who identified as sexual and/or gender minorities, reported that they often struggle to label their SO/GI on forms or succinctly answer questions about their SO/GI. Findings regarding limitations of SO/GI labeling fell into two broad themes: (a) Lists of SO/GI labels may not be inclusive of all identities, and (b) defining SO/GI within a category feels problematic. These themes, along with subthemes and exemplar quotes from the focus groups, are described below.

Lists of Sexual Orientation/Gender Identity Labels May Not Be Inclusive

Participants spoke about their experiences filling out forms when their identities are not included in the prescribed categories. Some participants indicated that they end up choosing boxes that are most closely aligned with how they self-identify, but that this choice does not accurately reflect their identity. One participant, who identified as female, asexual, and biromantic, reported:

I have had a few experiences where they had the box where you fill it out and then my sexual orientation isn’t on there…So I’m like, uh, I don’t know…because I’m biromantic, so I just put bisexual. But that’s not 100 percent accurate. But it’s more accurate than, like, “straight.”

Another participant, who identified as genderfluid and gay, explained that having to choose a label that does not align with one’s experience can be a painful and upsetting experience:

The thing is, is that I’m not exactly a girl, so it’s just weird…when you’re writing, oh, female. Then you’re just like oh, but it hurts just a little.

Other participants also highlighted feelings of distress associated with being misgendered or otherwise misidentified.
The option of selecting “other” when the label one uses is not offered was described by participants as either not ideal, but preferable to choosing a label that is inaccurate, or alienating and hurtful. A participant who identified as nonbinary and queer said:

At least they give me the “don’t specify” option. If you’re not going to put trans-friendly options, at least don’t make them pick.

Another participant, identifying as genderqueer and queer, expressed:

I think that when there’s an “other” box, it’s kind of—it feels a little terrible.

Some participants expressed a preference for a blank space to self-define their SO/GI instead of having to choose from a list of generic options. One participant who identified as cisgender female and bisexual/queer explained,

I don’t really like options…I would prefer open-ended because you can’t list all the options and that’s still checking the box.

Participants reported that being forced to identify in a way that was misaligned or contradictory to how they saw themselves was an uncomfortable experience at best and, otherwise, potentially traumatizing and detrimental to their health and wellbeing.

Defining Sexual Orientation/Gender Identity Within a Category Feels Problematic

Some participants reported that they were resistant to the concept of using definitive labels. Participants described their SO/GI identity as fluid, with the possibility of changing; selecting a particular label felt restrictive and contradictory to their experience. In the context of sexual orientation, one participant, who identified as cisgender female and “mostly straight,” explained:

The idea of categorizing makes me feel really uncomfortable because I’m like well, how do I know that…I will not date a woman? How do I know that? I feel like I can’t predict the future…. And so, checking off those boxes is kind of uncomfortable because I like to think of it as more of a fluid thing and open to change rather than being like this is it and this is everything and that’s how it will always be.

Another participant, who identified as male and gay at the time of the study, reflected:

My gender identity is constantly evolving. And so, it’s hard to just check a box and be set.

Participants wanted the opportunity to define themselves in ways that felt true to them and know that they could change that definition whenever they needed to.
Participants noted that, in addition to causing personal discomfort and pain, being forced to choose between commonly used SO/GI labels can further inhibit societal acceptance of gender and sexual diversity. For example, one participant, identifying as male and gay, articulated:

[Check boxes] reinforce the binary or [the] stigma around labels of sexuality and gender.

Participants emphasized that limiting options to the binary categories of male/female or heterosexual/gay, thus denying the existence of the sexuality and gender spectrums, both perpetuates misinformation and denies the lived experience of many individuals.


This study was unique in its application of mixed methods to understand participants’ experiences of labeling their SO/GI, providing a vital addition to the existing body of the literature. Previous studies that focused exclusively on quantitative data (Cahill et al., 2014) or with limited qualitative components (Russell et al., 2009) were not able to fully capture patients’ experiences with SO/GI categorization in healthcare and other settings. Additionally, unlike previous studies that have recruited LGBT-identified individuals only (Bosse & Chiodo, 2016; Galupo, Lomash, & Mitchell, 2017; Rosario, Schrimshaw, Hunter, & Braun, 2006; Russell et al., 2009), this study did not limit participants by labels and included participants identifying across the SO/GI continuum. The study also addressed gender identity, adding to the sparse literature base on the conceptualization of gender identity and labeling.

Collecting information not only on how patients self-identify but also how they describe their identities across contexts is a novel addition to the literature. The fact that approximately one in five individuals in our study reported that the SO/GI labels they report to their healthcare providers may differ from how they think of themselves personally, indicates that SO/GI information collected in the healthcare setting may not actually reflect patients’ identities.

Consistent with the prior literature (Better & Simula, 2015; Epstein et al., 2012; Galupo, Davis, Grynkiewicz, & Mitchell, 2014; Galupo et al., 2017; Korchmaros et al., 2013), participants indicated that SO/GI categorization, especially when limited to the commonly used labels (heterosexual, gay/lesbian, and bisexual), does not allow individuals to define themselves in ways that feel true to their experiences. Participants reported that being forced to choose a label that is misaligned with their experience is not only inaccurate, but also painful. Participants reported feeling disrespected, marginalized, and made invisible by the lack of understanding around SO/GI complexity and nuance displayed in the discrete SO/GI options provided on most forms. The concept of invisibility in this context has also been reinforced in the prior literature (Galupo et al., 2014).

As in other studies (Russell et al., 2009), we found that SGM individuals preferred write-in options over having to choose an “other” option in surveys or healthcare forms. Focus group discussions also revealed that some individuals reject the categorization of their SO/GI completely, as they understand their SO/GI to be fluid and undefinable. An examination of open-ended SO/GI response data from a state-wide Californian survey found SO/GI labels beyond the more commonly offered limited options (e.g., “pansexual,” “open,” “anything”) and indicators of resistance to categorization (e.g., “no-label… gender doesn’t matter,” “I don’t like labels,” “still deciding”; Russell et al., 2009). Another study (Bourdon, Saunders, & Hancock, 2018) using the National College Health Assessment II found that the LGBT + student population has increased over time and that having more expansive options for SO/GI labels facilitated more accurate disclosure of LGBT + identities to better inform LGBT + programs on campus to support inclusivity. In the present study, participants stressed that being able to accurately describe their identity, along with having the option to change how they describe their identity over time, was important to them.

The ability for patients to self-identify using any label they want—or to not label their identities—and to change their labels over time as appropriate provides opportunities for patient empowerment and patient-centered care. Such options provide a more accurate reflection of patients’ actual identities rather than forcing individuals to choose a category that might not fit. Further, for the purposes of clinical care, providers note that understanding a patient’s identity may be useful for the patient–provider relationship but that, where clinically relevant, inquiry into specific behavior and anatomy may be important regardless of orientation or identity (Dichter, Ogden, & Scheffey, 2018).

Whereas the more flexible options may be preferred by patients and provide a more accurate reflection of individual identities, such options increase the messiness of data for epidemiological study. We would argue, however, that allowing individuals to self-label among a wider array of options would provide improved accuracy and nuance in the data, allowing researchers to collapse individual categories into larger groups where appropriate. Allowing individuals to choose not to label their SO/GI presents a challenge for epidemiological study—introducing essentially “missing data” into a study of SO/GI. Given some resistance to such categorization, however, we might then question the value of imposing such categories in epidemiological research and more broadly question society’s potentially unnecessary or even detrimental emphasis on gender and sexual orientation groupings (for a relevant critique and analysis, see Davis, 2018).


The sample for this study was limited to university undergraduate and graduate students residing in an East Coast city with considerable legal protections for SGM populations. Although substantial diversity among this population in terms of geographic origin, disciplinary focus, and sexual and gender identity allowed for a range of perspectives within the sample, the setting and sample limit the transferability of these results. Individuals within the age and generational cohorts included in this study who do not attend undergraduate or graduate programs, or with other sociodemographic differences, may have different perspectives from those identified here.

This was a convenience sample, and participants self-selected to participate in the study, which was explicitly advertised as a study about labeling and categorizing SO/GI in healthcare settings. However, participation was open to any current graduate or undergraduate student regardless of SO/GI, which provided diversity within the focus groups that has been lacking in other studies. The focus group format is subject to social-desirability bias as participants may have catered their answers to the group setting. However, it also allows for deep engagement and insight that is unique to the process of group discussion.


The oversimplification and limited category options of SO/GI can lead to inaccurate conclusions about the prevalence of SGM experiences and misinformation about individuals’ lives, both of which have considerable implications for individual clinical care and understanding population health. As demonstrated by this study, when provided labels do not reflect identities, patients may select the label most closely aligned with their identity or they may avoid answering the questions altogether, potentially leading to inaccurate or incomplete epidemiological data. SO/GI collection also fails to be a useful tool for providing patient-centered care if providers do not have accurate information and patients feel uncomfortable or marginalized in the process. Patients’ discomfort or negative experiences may inhibit further help-seeking, potentially perpetuating disparities in healthcare access and health outcomes among SGM populations.

Providers, healthcare staff, and administrators must be trained on and demonstrate competence in understanding the nuances and potential fluidity of SO/GI, so that they can discuss these topics in an informed and sensitive manner, along with providing adequate options on intake forms and medical records to capture patients’ actual identities. Future research should investigate how best to operationalize fluid and continuous SO/GI and how patients feel about being asked in different formats and how frequently to be asked about their SO/GI identities. The results of this study provide substantive patient support for the expansive options suggested by institutions focused on LGBT-related care (Deutsch & Buchholz, 2015; Deutsch et al., 2013; National LGBT Health Education Center & National Association of Community Health Centers, 2014), which outline best practices in healthcare that include open-ended, gender-neutral discussion guides for taking a sexual history and collecting and documenting gender identity, pronouns, sex assigned at birth, and anatomy.



The authors did not receive any external funding to support this research. The authors acknowledge the contributions of Nicky Knepp and Lauren Nadler to data collection and analysis.


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Copyright information

© This is a U.S. government work and its text is not subject to copyright protection in the United States; however, its text may be subject to foreign copyright protection  2019

Authors and Affiliations

  • Kathryn L. Scheffey
    • 1
  • Shannon N. Ogden
    • 1
  • Melissa E. Dichter
    • 1
    • 2
    Email author
  1. 1.Department of Family Medicine and Community HealthUniversity of Pennsylvania Perelman School of MedicinePhiladelphiaUSA
  2. 2.U.S. Department of Veterans AffairsCenter for Health Equity Research and PromotionPhiladelphiaUSA

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