Abstract
Objective:
Disproportionate rates of certain cancers exist among sexual and gender minority (SGM) older adults. Collecting sexual orientation and gender identity (SOGI) information is important in providing individualized care. This study assessed cancer patients’ perceptions regarding SOGI questions, preferred ways to communicate SOGI information to healthcare providers and comfort in sharing room with SGM patients.
Methods:
225 oncology patients completed self-reported surveys. Descriptive and stratified analyses were utilized to analyze patient perceptions regarding SOGI questions and to explore differences by demographic characteristics.
Results:
Participants reported favorable perceptions regarding gender, M=4.8 (SD=.81), sex-at-birth, M=4.51 (SD=.77), pronoun, M=4.36 (SD=.87), and sexual orientation, M=4.53 (SD=.74) questions, regardless of demographic characteristics (p >.05, for all stratified analyses). Overall, 56.7% participants reported comfort in sharing room with someone of a different SO, 59.2% cisgender men reported comfort in sharing room with a transgender man, and 37.8% cisgender women reported comfort in sharing room with a transgender woman.
Conclusion:
This study examined oncology patient perceptions regarding SOGI disclosure. The invisibility of SGM populations in the context of cancer care is directly attributable to the lack of SOGI data collection.
Practice Implications:
Cancer care institutions should gather SOGI data to provide individualized care to all cancer patients.
Keywords: sexual orientation and gender identity, sexual and gender minority, LGBT, Geriatrics
1. Introduction
There are more than 3 million sexual and gender minority (SGM) people in the United States aged 55 and older, and this number is expected to double by 2030 [1]. SGM people include lesbian, gay, bisexual, transgender, and intersex (LGBTI) people [2]. Experiences of social exclusion, isolation, discrimination, victimization, stigma, and identity concealment have resulted in significant health disparities in SGM older adult populations [2,3], including disproportionate rates of certain cancers such as breast, cervical, and anal cancers [4,5]. Despite the increased risk, SGM populations are less likely to seek healthcare services or lack a regular healthcare provider (HCP) [6–8], less likely to engage in early detection and cancer screening [6,9,10], and typify behaviors associated with increased cancer risk, including elevated rates of smoking, alcohol use, obesity, nulliparity (among SGM assigned female at birth), anal receptive sex (among SGM assigned male at birth), and lower rates of exercise [5,7,11,12]. The cumulative evidence suggests increased cancer risk and poorer outcomes for SGM oncology patients, particularly older adults. Concerns about cancer disparities in SGM populations are heightened in the older adult subgroup given the higher rates of cancer (53%) in individuals 65 years and older [13]. The intersectionality of these two vulnerable identities create an imperative for addressing cancer disparities in SGM older adults [14].
Paramount to understanding cancer disparities among SGM older adults is the collection of sexual orientation and gender identity (SOGI) data because gathering SOGI data will increase quality of care given to SGM patients by allowing health centers to measure and track outcomes in these populations [14, 15]. SOGI data includes questions regarding sexual orientation, gender identity, sex assigned at birth, and preferred name and pronouns [15]. These data are not included in prominent cancer registries, such as the National Cancer Institute’s (NCI) Surveillance, Epidemiology, and End Results (SEER) Program [14], the nation’s leading source of information on cancer incidence, mortality, and survival. Furthermore, despite recommendations by the National Academy of Medicine (formerly the Institute of Medicine), the US Department of Health and Human Services, and the Joint Commission, SOGI data are not routinely collected in healthcare settings [16–18], including NCI-designated Comprehensive Cancer Centers [19]. Of the 626 hospitals who chose to have their lesbian, gay, bisexual, transgender, and queer practices rated by the Human Rights Campaign’s 2018 Healthcare Equality Index, only 37% had an explicit way to capture a patient’s sexual orientation (SO) in their electronic health records (EHRs) and 56% offered a way to capture that a patient’s gender identity (GI) differed from the sex they were assigned at birth [20].
Barriers to SOGI collection are multifaceted and include systems issues, technical limitations, and healthcare provider discomfort [21–22]. In 2015, the Centers for Medicare & Medicaid Services and the Office of the National Coordinator for Health Information Technology at the Department of Health and Human Services require all EHR systems to include structured fields for SOGI data [23]. While the mandate does not require providers to collect SOGI information, it has helped to catalyze healthcare systems to begin to develop processes for SOGI data collection. Paramount to the development of those processes is the need to explore barriers at the healthcare provider and patient levels that can be addressed to make SOGI data collection more universal, in all healthcare settings.
Recent studies have highlighted the discordance between healthcare provider and patient perceptions regarding SOGI data collection. For instance, a 2017 survey of a nationally representative sample of patients and providers found that 80% of providers felt that collecting SO data would offend patients, whereas only 11% of patients reported that they would be offended [24]. Indeed, a growing body of evidence suggests that most patients are willing to answer routine questions about their SO and GI in the healthcare setting and perceive them as important questions to ask [24–28]. Such findings have given rise to patient-centric approaches and considerations for SOGI data collection.
Recent work has expanded on the patient-centric approaches pioneered by the 2013 Fenway Institute study which sought to ensure the comprehension, acceptability, and accuracy of SOGI data solicitation [29] by exploring patients’ preferred method for reporting SOGI data, demonstrating that nonverbal self-report is the most acceptable strategy [28]. Notably, these results have been demonstrated in primary care and emergency department settings; the extent to which they translate to tertiary care settings, such as cancer centers, remains unknown [30].
Another issue that has been of relevance in improving patient healthcare experience includes the concept of shared space in a healthcare setting [31]. Until healthcare centers are structurally equipped to provide single-accommodation rooms to all patients, the issue of putting two (or more) patients in a double-bedded or multi-bedded room cannot be ignored [32]. Whereas studies have looked at the advantages and disadvantages of structural decisions and patient care [33–36], no studies have examined patient preferences for sharing room with an SGM patient in a healthcare setting.
To address these gaps in the literature, we conducted the present study with older (65 years and older) and younger (< 65 years) cancer patients to assess their understanding of SOGI terms, their comfort levels with recommended questions, and their preferred way to communicate this information to healthcare providers. We also assessed patients’ level of comfort in sharing a room with a lesbian, gay, bisexual, or transgender patient. Finally, we examined participants’ socio-demographic variables to assess differences in answering SOGI questions and preferred methods of disclosing SOGI information, level of comfort in sharing a room with someone of a different SO, and level of comfort in sharing a room with a transgender man or woman.
2. Methods
2.1. Participants and Procedure
This study was a part of a larger project on SGM patient healthcare and was deemed exempt (Category 2) by the Institutional Review Board. The study was conducted at a National Cancer Institute - designated Comprehensive Cancer Center in New York. From May-July 2018, oncology patients attending geriatric and general medicine outpatient clinics were provided a paper-and-pencil survey when they checked into the respective clinics for their appointment. Participant eligibility included: older than 18 years, no significant diagnosed cognitive disorder, and patient in geriatric or general medicine clinics. The patient population was selected as such to examine perceptions regarding SOGI data collection by all patients, whether young and old, heterosexual or not, cisgender or not, and belonging to various racial and ethnic groups. The survey was anonymous, and the participants were informed that completion of the survey was voluntary. Of the 225 participants who received the survey, 169 (75%) completed the survey.
2.2. Measurement Instruments
The survey was constructed based on prior Fenway Institute study [29] and included the following measures: SOGI questions (i.e., gender, sex at birth, pronouns, and sexual orientation), perceptions regarding SOGI questions (ease of understanding, comfort level, willingness to answer, and importance), preferred mode of question asking, and comfort level in sharing room with someone of a different SO or with a transgeder man or woman. These items were supplemented by other demographic questions (age group, race, ethnicity, highest degree, country of birth, religious orientation, and if they have friends/family members that identify as lesbian, gay, or bisexual, and/or transgender). We used the Fenway Institute study as a template because of their extensive research on the best practices to ask SOGI questions [29].
2.2.1. SOGI questions.
Gender identity was asked using the phrase “What is your gender?” and coupled with the following response options: man, woman, transgender woman/trans woman/male to female, transgender man/trans man/female to male, nonbinary/genderqueer/gender nonconforming, something else (please specify), and I would rather not say. The gender question was followed by a question to elicit sex at birth, using the phrase “What sex were you assigned at birth on your original birth certificate?” with the following response options: male, female, intersex, and I would rather not say. Pronouns were solicited by asking “What are your pronouns?” with the following response options, she/her/hers, he/him/his, they/them/theirs, and ze/zir/zirs, and something else. Finally, SO was asked using the phrase “which of the following do you identify most closely with?” with the following response options: lesbian, gay or homosexual, straight or heterosexual, bisexual, something else (please describe), and don’t know. Table 1 presents SOGI and other demographic characteristics of participants.
Table 1.
Demographic characteristics of all participants (N = 169).
| Characteristic | N | % |
|---|---|---|
| SOGI Characteristics | ||
| Gendera | ||
| Man | 86 | 50.9% |
| Woman | 78 | 46.1% |
| Missing | 5 | 3% |
| Sex Assigned at Birthb | ||
| Male | 89 | 52.7% |
| Female | 79 | 46.7% |
| Missing | 1 | .6% |
| Sexual Orientation | ||
| Straight or Heterosexual | 148 | 87.6% |
| Lesbian, Gay, or Homosexual | 3 | 1.8% |
| Something else | 3 | 1.8% |
| Don’t know | 1 | .6% |
| Missing | 14 | 8.3% |
| Preferred Pronouns | ||
| She/her/hers | 81 | 47.9% |
| He/him/his | 75 | 44.4% |
| They/them/theirs | 3 | 1.8% |
| Something else | 1 | .6% |
| Missing | 9 | 5.3% |
| Other Demographic Characteristics | ||
| Service | ||
| Geriatrics | 103 | 60.9% |
| General Medicine | 66 | 39.1% |
| Age group | M = 72.55, SD = 13.11, Range = 21–94 | |
| Over 65 | 118 | 69.8% |
| 65 and younger | 44 | 26.1% |
| Missing | 7 | 4.1% |
| Racec | ||
| White | 141 | 83.4% |
| Asian | 7 | 4.1% |
| Black or African-American | 7 | 4.1% |
| Multi-racial | 3 | 1.8% |
| American Indian or Alaskan Native | 2 | 1.2% |
| Missing | 9 | 5.3% |
| Ethnicity | ||
| Not Hispanic or Latino | 136 | 80.5% |
| Hispanic or Latino | 10 | 5.9% |
| Missing | 23 | 13.6% |
| Highest Degree | ||
| 4-year college | 38 | 22.5% |
| Master’s degree | 34 | 20.1% |
| High school/GED | 28 | 16.6% |
| Some college | 22 | 13.0% |
| 2-year college | 15 | 8.9% |
| Doctoral degree | 15 | 8.9% |
| Less than high school | 5 | 3.0% |
| Professional degree | 5 | 3.0% |
| Other | 5 | 3.0% |
| Missing | 2 | 1.2% |
| Country of Birth | ||
| U.S. born | 126 | 74.6% |
| Foreign born | 42 | 24.9 % |
| Missing | 1 | .6% |
| Religious Orientation | ||
| Christian | 107 | 63.3% |
| Jewish | 34 | 20.1% |
| Atheist/Agnostic | 8 | 4.7% |
| Hindu | 1 | .6% |
| Muslim | 1 | .6% |
| Other | 1 | .6% |
| Missing | 17 | 10.1% |
| Friend or Family Member who Identifies as LGB | ||
| Yes | 97 | 57.4% |
| No | 42 | 24.9% |
| Don’t know | 15 | 8.9% |
| Missing | 15 | 8.9% |
| Friend or Family Member who Identifies as Transgender | ||
| No | 118 | 69.8% |
| Yes | 19 | 11.2% |
| Don’t know | 17 | 10.1% |
| Missing | 15 | 8.9% |
Gender: the following answer options had 0 checked responses: transgender woman/trans woman/male to female, transgender man/trans man/female to male, nonbinary/genderqueer, something else, I would rather not say.
Intersex: the answer option Intersex had 0 checked responses.
Race: None of the participants checked the response option for Native Hawaiian or Other Pacific Islander.
2.2.2. Perceptions regarding SOGI questions.
Perceptions regarding SOGI questions included six items rated on a 5-point Likert type scale with 1 (Strongly Disagree) to 5 (Strongly Agree). Each participant answered the same six items for each of the four demographic SOGI questions. Four exploratory factor analysis (EFA) were performed for each of the four demographic SOGI questions and a single-factor solution emerged each time. A composite perception regarding SOGI questions index was created by summing and averaging the six items (see Table 2), with a higher score indicating more favorable perceptions towards answering SOGI questions.
Table 2.
Descriptives for Perceptions Regarding SOGI Questions Measure
| Measure | Eigenvalue | % Variance Explained | Cronbach’s Alpha | M (SD) |
|---|---|---|---|---|
| Perceptions regarding SOGI questions – for gender | 4.71 | 78.53 | .94 | 4.48 (.81) |
| Perceptions regarding SOGI questions – for sex at birth | 4.78 | 79.71 | .94 | 4.51 (.77) |
| Perceptions regarding SOGI questions – for pronouns | 4.81 | 80.22 | .94 | 4.36 (.87) |
| Perceptions regarding SOGI questions – for sexual orientation | 4.77 | 79.54 | .94 | 4.53 (.74) |
2.2.3. Preferred mode of disclosure.
Preferred mode of disclosure enquired about how participants prefer to share information about their SO and GI. The four answer options included: in a written form, in an online form, just ask me (verbally state to healthcare provider - HCP), and no need to ask.
2.2.4. Comfort in sharing room.
Comfort in sharing room included 3 questions rated on a 5-point Likert type scale with 1 (Very Uncomfortable) to 5 (Very Comfortable). The first question assessed participants’ level of comfort in sharing a hospital room with someone who has a different SO than them, and the following two questions addressed gender concordance in sharing room (i.e., comfort level of a man sharing a hospital room with a person who identifies as a man but born female, and of a woman sharing a room with a person who identifies as a woman but born male).
2.3. Data Analysis
Descriptive statistics (frequencies and percentages) were utilized to quantify patient perceptions of answering SOGI questions, preferred mode of asking, and level of comfort in sharing room. Stratified analyses were performed to explore differences in perceptions of answering SOGI questions, and level of comfort in sharing room by demographic characteristics, including SOGI using independent sample t tests. Additionally, chi-square analyses were performed to explore differences in preferred mode of asking SOGI questions by demographic characteristics. In many instances, categories had to be collapsed due to low frequencies in the sub-categories. As well, in some instances, the analyses could not be performed due to low variability in demographic characteristics (over 87% of the participants identified as straight/heterosexual and 100% were cisgender - their gender identity aligned with their sex assigned at birth), so analyses could not be performed to examine differences in study responses based on sexual orientation. Similarly, stratified analyses could not be performed for race or ethnicity.
3. Results
3.1. Distribution of Perceptions Regarding Answering SOGI Questions
Overall, participants reported favorable perceptions regarding answering SOGI questions, as evidenced by average scores in the range 4.36–4.53 (on a 1–5 Likert type scale with higher scores indicating more favorable perceptions). Specifically, perceptions for answering each of the following SOGI questions were as follows (see Table 2): gender identity (M = 4.48, SD = .81), sex at birth (M = 4.51, SD = .77), pronouns (M = 4.36, SD = .87), and sexual orientation (M = 4.53, SD = .74). Independent sample t test analyses were performed to examine differences in distribution of perceptions regarding answering SOGI questions based on participants’ own demographic characteristics including SOGI characteristics. There were no significant differences found by age or any other demographic characteristic in any of the t test analyses (see Tables 3–4).
Table 3.
Distribution in Perceptions Regarding SOGI Questions by SOGI Characteristics
| Gender | Sex at Birth | Pronouns | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Perceptions regarding SOGI questions… | Man | Woman | Male | Female | She/her/hers | He/him/his | ||||||
| M (SD) | M (SD) | df | t | M (SD) | M (SD) | df | t | M (SD) | M (SD) | df | t | |
| …for gender | 4.44 (.93) | 4.52 (.66) | 151 | −.60 | 4.42 (.93) | 4.53 (.66) | 147 | −.79 | 4.52 (.65) | 4.49 (.87) | 142 | .29 |
| …for sex at birth | 4.49 (.81) | 4.52 (.72) | 147 | −.26 | 4.49 (.81) | 4.52 (.72) | 146 | −.23 | 4.51 (.71) | 4.51 (.79) | 141 | .02 |
| …for pronouns | 4.28 (1.01) | 4.43 (.71) | 142 | −1.05 | 4.27 (1.01) | 4.46 (.71) | 140 | −1.33 | 4.43 (.72) | 4.28 (1.04) | 136 | 1.04 |
| …for sexual orientation | 4.53 (.79) | 4.52 (.68) | 144 | .15 | 4.54 (.78) | 4.53 (.68) | 143 | .05 | 4.53 (.67) | 4.54 (.81) | 140 | −.10 |
Note: Only results for gender, sex at birth, and preferred pronouns are presented here. The distribution of responses for sexual orientation did not have much variability, so t tests couldn’t be conducted.
t statistic without an Asterix (*) represents non-significant differences.
Table 4.
Distribution in Perceptions Regarding SOGI Questions by Other Demographic Characteristics (Age, Race, Country of Birth, Religious Affiliation, Number of Family or Friends as LGB, and Number of Family or Friends as Transgender).
| Perceptions Regarding SOGI Questions | Age M (SD) |
Country of Birth M (SD) |
Religion M (SD) |
LGB Friends/Family M (SD) |
Transgender Friends/Family M (SD) |
||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Under 65 (n = 44) | Over 65 (n = 118) | t (df) | USA (n = 126) | Foreign (n = 42) | t (df) | Christian (n = 107) | Others (n = 45) | t (df) | Yes (n = 97) | No (n = 42) | t (df) | Yes (n = 19) | No (n = 118) | t (df) | |
| …for gender | 4.53 (.94) | 4.48 (.75) | t(146) = .28 | 4.48 (.83) | 4.45 (.75) | t(151) = .24 | 4.51 (.78) | 4.50 (.80) | t(127) = .07 | 4.49 (.78) | 4.40 (1.01) | t(126) = .59 | 4.44 (.97) | 4.48 (.77) | t(125) = −.18 |
| …for sex at birth | 4.62 (.77) | 4.49 (.74) | t(142) = .94 | 4.51 (.80) | 4.52 (.64) | t(146) = −.10 | 4.53 (76) | 4.54 (.82) | t(122) = −.11 | 4.57 (.64) | 4.33 (1.07) | t(125) = 1.54 | 4.48 (.99) | 4.49 (.74) | t(124) = −.03 |
| …for pronouns | 4.39 (1.02) | 4.35 (.84) | t(139) = .21 | 4.36 (.91) | 4.33 (.74) | t(143) = .18 | 4.42 (81) | 4.22 (1.03) | t(122) = 1.07 | 4.41 (.79) | 4.22 (1.14) | t(123) = 1.08 | 4.63 (.52) | 4.27 (.95) | t(123) = 1.52 |
| …for sexual orientation | 4.55 (.80) | 4.53 (.72) | t(141) = .16 | 4.52 (.76) | 4.54 (.64) | t(145) = −.08 | 4.52 (76) | 4.56 (.80) | t(124) = −.19 | 4.58 (.57) | 4.35 (1.10) | t(126) = 1.55 | 4.62 (.57) | 4.48 (.79) | t(127) = .76 |
Demographic Characteristics: Age (1 = Under 65 years, 2 = Over 65 years); Country of Birth (1 = USA born, 2 = Foreign born); Religion (1 = Christian, 2 = Other); LGB Friends/Family (1 = Yes, 2 = No), Transgender Friends/Family (1 = Yes, 2 = No)
t statistic without an Asterix (*) represents non-significant differences.
There was a varied distribution of responses in terms of preferred mode of asking SOGI questions (see Table 5). Approximately 114 (70%) participants reported a preference for verbal questions to them about their gender and 111 (69%) for verbal questions to them about sex at birth. Online reporting, on the other hand, was the preferred mode for asking pronoun questions (n=65, 42%) and sexual orientation questions (n=64, 42%).
Table 5.
Preferred Mode of Asking SOGI-Related Questions: Frequency (and Percentage)
| Type of questions ↓╲Mode of asking → | Written Form | Online Form | Ask Me | No Need to Ask |
|---|---|---|---|---|
| Gender questions | 35 (21.5%) | 10 (6.1%) | 114 (69.9%) | 25 (15.3%) |
| Sex at birth questions | 33 (20.4%) | 6 (3.8%) | 111 (69.4%) | 27 (16.9%) |
| Pronoun questions | 29 (18.7%) | 65 (41.9%) | 46 (29.7%) | 33 (21.3%) |
| Sexual orientation questions | 27 (17.6%) | 64 (41.8%) | 43 (28.1%) | 31 (20.3%) |
Chi-square analyses were performed to examine differences in distribution of preferred mode of asking SOGI questions based on participants’ own demographic, including SOGI characteristics. There were no significant differences found in any of the chi-square analyses.
3.2. Distribution of Level of Comfort in Sharing Room
We assessed heterosexual participants’ preferences for sharing room with a patient belonging to a different SO, cisgender women participants’ preferences for sharing a room with a transgender woman, and cisgender men participants’ preferences for sharing a room with a transgender man (see Table 6). The mean distribution (N=80, 56.7%) clearly shows that heterosexual participants (n=44, 60.3% heterosexual men and n=36, 52.9% of heterosexual women) reported greater comfort in sharing a room with someone of a different SO than someone who is transgender (both with a man born as female or a woman born as male). Whereas 45 (59.2%) of cisgender men reported being comfortable or very comfortable in sharing room with a transgender man, only 28 (37.8%) of cisgender women reported being comfortable in sharing room with a transgender woman (It is important to note that room share assignment in most health care institutions is usually based on gender alignment and people of same gender are assigned room together [38]).
Table 6.
Distribution in Perceptions Regarding Comfort in Sharing Room by SOGI Characteristics
| Gender | Sex at Birth | Pronouns | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Man | Woman | Male | Female | She/her/hers | He/him/his | |||||||
| M (SD) | M (SD) | df | t | M (SD) | M (SD) | df | t | M (SD) | M(SD) | df | t | |
| Level of Comfort in Sharing Room… | ||||||||||||
| …with someone of a different sexual orientation | 3.58 (1.17) | 3.29 (1.35) | 150 | 1.42 | 3.59 (1.18) | 3.33 (1.35) | 150 | 1.28 | 3.34 (1.34) | 3.60 (1.18) | 145 | −1.23 |
| …with a man born as female | 3.54 (1.15) | 2.85 (1.25) | 148 | 3.52** | 3.55 (1.15) | 2.89 (1.26) | 148 | 3.31** | 2.91 (1.26) | 3.53 (1.15) | 143 | −3.06** |
| …with a woman born as male | 3.21 (1.33) | 3.05 (1.19) | 145 | .73 | 3.22 (1.32) | 3.09 (1.20) | 145 | .62 | 3.10 (1.21) | 3.30 (1.31) | 141 | −.93 |
Note: Only results for gender, sex at birth, and preferred pronouns are presented here. The distribution of responses for sexual orientation did not have much variability, so t tests couldn’t be conducted.
Numbers in bold represent gender concordant responses (i.e., comfort level of a cisgender man sharing a hospital room with a person who identifies as a man but born female, and of a cisgender woman sharing a room with a person who identifies as a woman but born male).
p < .001.
t statistic without an Asterix (*) represents non-significant differences.
Three independent t tests were performed to examine differences in level of comfort in sharing room base on participants’ own SOGI characteristics (Table 6). The results demonstrated that cisgender men were more comfortable in sharing a room with a transgender man as compared to cisgender women participants, t(148) = 3.52, p < .001, Cohen’s d = .58 (medium). The same pattern of results was evident when analyzing by sex at birth measure or pronoun measure. No other differences by participants’ own SOGI characteristics were evident.
Additionally, five independent t tests were performed to examine differences in level of comfort in sharing room based on other demographic characteristics (age, country of birth, religious orientation, having lesbian, gay bisexual friends/family and having transgender friends/family), and results revealed that the only difference in study measures were based on having lesbian, gay bisexual family/friends (see Table 7). Participants who had lesbian, gay bisexual family/friends reported greater level of comfort in sharing a room with someone of a different sexual orientation, and with a transgender woman.
Table 7.
Distribution in Comfort in Sharing Room by Other Demographic Characteristics (Age, Race, Country of Birth, Religious Affiliation, Number of Family or Friends as LGB, and Number of Family or Friends as Transgender).
| Age M (SD) |
Country of Birth M (SD) |
Religion M (SD) |
LGB Friends/Family M (SD) |
Transgender Friends/Family M (SD) |
|||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Under 65 (n = 44) | Over 65 (n = 118) | t (df) | USA (n = 126) | Foreign (n = 42) | t (df) | Christian (n = 107) | Others (n = 45) | t (df) | Yes (n = 97) | No (n = 42) | t (df) | Yes (n = 19) | No (n = 118) | t (df) | |
| …with someone of a different sexual orientation | 3.58 (1.28) | 3.42 (1.27) | t(145) = .66 | 3.47 (1.28) | 3.40 (1.27) | t(151) = .27 | 3.33 (1.29) | 3.67 (1.24) | t(127) = −1.25 | 3.65 (1.19) | 2.93 (1.40) | t(135) = 3.07* | 3.47 (1.43) | 3.39 (1.30) | t(133) = .26 |
| … with a man born as female | 3.15 (1.39) | 3.21 (1.21) | t(144) = −.22 | 3.25 (1.26) | 3.09 (1.22) | t(149) = .66 | 3.10 (1.26) | 3.43 (1.32) | t(125) = −1.20 | 3.34 (1.26) | 2.90 (1.19) | t(133) = 1.91 | 3.26 (1.45) | 3.12 (1.24) | t(132) = .45 |
| … with a woman born as male | 3.10 (1.45) | 3.16 (1.19) | t(141) = −.26 | 3.17 (1.30) | 3.06 (1.14) | t(146) = .42 | 2.99 (1.24) | 3.48 (1.34) | t(122) = −1.79 | 3.36 (1.23) | 2.61 (1.22) | t(131) = 3.25** | 3.47 (1.43) | 3.04 (1.25) | t(130) = 1.38 |
p < .001.
t statistic without an Asterix (*) represents non-significant differences.
4. Discussion and Conclusion
4.1. Discussion
This descriptive study explored patients’ perceptions regarding SOGI disclosure and comfort in sharing a room with a lesbian, gay, bisexual, or transgender person in an oncology setting. While we expected to find differences based on age group (older than 65 versus 65 years or younger), no differences were found based on age in any of our analyses. However, our sample was primarily older adults (M = 72.55, SD = 13.11, Range = 21–94), so the findings have to be interpreted within that context.
Consistent with previous research, participants were willing to disclose their SOGI status, felt comfortable answering SOGI questions, found them easy to understand, and felt providing SOGI information was important. However, despite reporting SOGI data was important, 15–20% of participants responded “no need to ask” when we asked their preferred method of disclosure (Table 5). This finding may reflect the experiences of our older, heterosexual, cisgender sample aligning with the hetero/cisnormative assumptions found in healthcare. For instance, Cahill et al. [26] found that respondents who identified as lesbian, gay, or homosexual were more likely than the heterosexual group to think that it was important to ask SOGI questions.
Participants in this study preferred to disclose their pronoun and sexual orientation by self-report (online and written combined) and demonstrated a preference for an HCP verbally asking their gender and sex at birth. This finding differs from prior studies that indicate that SGM and non-SGM patients prefer nonverbal collection of SOGI data and are more comfortable disclosing SOGI status on a self-report form [27]. Our study sample was predominantly older, cisgender and heterosexual, so we are unable to breakdown patient preferences by SOGI status. In another study with transgender patients, 90% wished their primary care providers to know their GI, and nearly 60% agreed that intake of SO was also needed [24]. Despite the importance of SOGI disclosure, most HCPs do not inquire about the matter. As a result, patients are oftentimes forced to initiate the disclosure process. A 2015 study found most patients brought up the subject of their SO themselves, sometimes as a way to correct heterosexual assumptions [37]. These studies suggest that the burden of disclosure should be shifted off the patient to the provider. This must be done, even when communicating with older adults [38]. It is necessary to realize that disclosing personal SOGI status for older adults may be especially difficult because they belong to a generation where same-sex attraction or gender variance carried the complex stigma of being illegal, a mental illness, and a moral and religious failing, and many of the older adult patients may have been vigilant in the past about protecting themselves by concealing their SOGI [39]. While direct questioning for providers with strong relationships with their patients is reasonable, most recent literature recommends a nonverbal intake of SOGI data. However, this can be achieved when cancer care institutions make a concerted effort to communicate a safe and welcoming environment for their SGM patients.
In terms of sharing rooms with other patients, the current study indicated that participants reported greater comfort in sharing a room with someone of a different SO than someone who was transgender man or woman. Whereas over half of cisgender men reported comfort in sharing room with a transgender man, only a third cisgender women reported comfort in sharing room with a transgender woman. We are not aware of any prior studies that assessed cisgender patients’ levels of comfort in sharing hospital rooms with patients of a different sexual orientation or transgender patients; however, our study clearly suggests a preference in sharing rooms according to gender, which is a recommended practice. The discrepancy in having more men being comfortable in sharing rooms than women may be a gendered preference. We did not assess preferences of cisgender men and women in sharing rooms with men and women respectively, so our data doesn’t provide the entire picture.
In 2016, the Human Rights Campaign and Lambda Legal published a guide for the treatment of transgender patients in the hospital setting [40]. The guide addresses the issue of room assignment for trans patients stating, “where patients are assigned to rooms based on gender, the [Hospital Admitting Staff] shall assign a transgender patient to a room in accordance with the patient’s self-identified gender, unless the patient requests otherwise (p. 9).” If a heterosexual roommates objects to sharing a room with a transgender patient or harasses the patient, the guide recommends hospital personnel move the heterosexual roommate, emphasizing the transgender patient’s health should not be compromised. The model policy also recommends giving transgender patients the option of a private room [40]. Denying gender-affirming room assignments to transgender patients is one of the many barriers hindering transgender patients from accessing health care. Clear policies for transgender room assignments will help preserve the patients’ dignity and privacy, making them more likely to seek out care as needed [40].
This study has several limitations. The study was conducted at a single institution in a liberal, urban area and results may not be generalizable to other oncology care settings. Even in such a setting a quarter of the potential participants approached for the study declined participation after listening to the study details. It is possible that self-selection bias would be appropriate here and patients that have a more accepting attitude towards SGM patients agreed to participate. Much of the extant literature focuses on SGM perceptions of disclosure. Even though all genders and sexes were invited to participate in this survey, our sample was 87.6% heterosexual and 100% cisgender. While such a homogenous sample limits generalizability, in this instance the perspectives of cisgender, heterosexual individuals adds value by broadening the literature to examine the feasibility of routine SOGI data collection [25].
4.2. Conclusions
While research on patients’ willingness to disclose SOGI data has been conducted in diverse contexts [25], studies addressing standardized approaches for disclosure in healthcare settings stem primarily from primary care and emergency department settings. This study extends that work to cancer care and demonstrates willingness of cancer patients (irrespective of demographic differences) to provide SOGI information about themselves.
4.3. Practice Implications
Cancer care institutions need to encourage SOGI disclosure to provide equitable care to all cancer patients [16]. Patients should be provided different avenues for disclosing SOGI information such as in hospital forms (both written and online) and verbal questioning from HCPs as a routine part of socio-demographic and history-taking. These approaches will demonstrate a pro-active approach from cancer care institutions in establishing a safe, welcoming, and affirmative environment for all patients. Finally, during hospital admissions, assessing patient comfort in sharing rooms with someone of a different SO or GI may be helpful in determining hospital policies, and communicating the same to patients upon admission.
Highlights.
Oncology patients report favorable perceptions regarding answering SOGI questions.
There are no differences by age group on perceptions regarding SOGI disclosure.
More than half of oncology patients (56.7%) report comfort in sharing room with someone of a different sexual orientation.
More cisgender men (59.2%) than women (37.8%) report comfort in sharing room with a transgender man/woman respectively.
Having LGB family/friends increases comfort in sharing rooms with LGB people.
Acknowledgments:
Maureen Healy RN, Kathy Romano RN, Carol Koehne RN
Funding: Research reported in this paper was supported by Cancer Center Support Grant (CCSG-Core Grant; P30 CA008748; PI: Craig B. Thompson, MD). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Footnotes
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Declarations of interest: none
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