Health Care Utilization and Care-seeking Behavior Among Vulnerabilized Sexual Minority Women: A Social-ecological Approach

Abstract

Sexual minority women (SMW) experience worse health than their heterosexual counterparts but have largely been omitted from health services research. To address this gap, we conducted 25 semi-structured, in-depth interviews with SMW. Transcripts were analyzed using thematic analysis, and findings were organized using a modified socioecological framework. Key themes at each socioecological level include (1) structural: stigma, sociocultural norms, health infrastructure; (2) organizational: stigma, patient-provider relationship, hours and location, linkage to care and co-location of services; (3) interpersonal: stigma and social support; (4) individual: internalized stigma, self-efficacy, socioeconomic status, health literacy, and intersecting identities. Stigma is the central theme affecting vulnerabilized SMW’s experiences accessing care. Anti-stigma initiatives and factors that lead to personal resilience and can mitigate care access barriers were identified at each level. Interventions should focus on building inclusive policies/infrastructure and using SMW’s unique social networks to empower and improve care access and health outcomes among vulnerabilized SMW.

Sexual minority populations have worse health than their heterosexual counterparts. In large part due to discrimination and minority stress, sexual minority individuals experience worse mental health (e.g., depression, anxiety, and suicidality)^1–3 and physical health (e.g., cardiovascular diseases, certain cancers) than their heterosexual peers.^4–7 Sexual minority women (SMW), defined as women with a non-heterosexual sexual orientation either by self-ascribed sexual identity (e.g., lesbian, gay, bisexual) or heterosexually-identified women who report same-sex attraction or behavior,⁸ have historically been omitted from care access and utilization research. Research on SMW is limited; studies on health among sexual minority individuals often focus on cisgender sexual minority men or use samples that do not disaggregate women from men,^9,10 even fewer studies examine the intersection of sexual orientation and other minoritized or stigmatized statuses (e.g., race/ethnicity, undocumented status).^11,12

Sexual minority women are more likely to be “vulnerabilized” than heterosexual women as evidenced by greater rates of adverse social determinants of health, including housing insecurity, violence victimization, sex work engagement, substance use,^13–15 and adverse physical and mental health outcomes, such as higher body weight, cardiovascular diseases, depression, and anxiety.^4,5,16,17 “Vulnerabilized” refers to the effects of factors (e.g., trauma, violence, adverse health outcomes) rendering one more susceptible to adversity. The sexual minority women in this study , which was part of a larger study on HIV, were required either to have injected drugs that were not prescribed for them in the past 12 months, or to have had vaginal or anal sex with opposite sex partner in the past 12 months. All had low socioeconomic status based on individual and household income. We use the term “vulnerabilized” for the women we interviewed intentionally as this population is not intrinsically vulnerable but are rendered so due to larger societal factors; this language acknowledges the impact of structural power systems, rather than individual-level factors, on marginalization.¹⁸

Existing studies have examined barriers and facilitators of health care utilization for sexual minority women, many focused at the organizational level. Commonly identified barriers to care include negative provider attitudes, lack of communication, and poor patient-provider relationship and care experience.^19–24 One study identified stigma and discrimination,²⁵ and others discussed cost and lower socioeconomic status as barriers.^26,27 These studies had important findings but mostly focused on organizational or individual-level factors; thus, a study that comprehensively investigates multi-level barriers and facilitators to care among sexual minority women is crucial. In addition, unmet health care needs increase exponentially with the number of vulnerabilities or risk factors one experiences;²⁸ therefore, it is essential that we understand particular factors that affect health care access and utilization among vulnerabilized sexual minority women. In addition to factors that widen health disparities, identifying facilitators and strength-based factors that contribute to resilience is essential to mitigate barriers and ultimately reduce health disparities. However, to our knowledge, limited studies have comprehensively investigated specific barriers, risk factors, facilitators, and resilience factors for care access and utilization among a subgroup of vulnerabilized SMW. To fill this gap, we conducted a qualitative study to explore health care experiences, including barriers, risk factors, facilitators, and resilience factors, influencing health outcomes among vulnerabilized SMW (based on both identity and behavior) in Baltimore, Maryland. We organized our findings using a modified socioecological model (SEM) framework encompassing structural, organizational, interpersonal, and individual levels, and used intersectionality theory to examine how multiple minoritized statuses (e.g., race/ethnicity, undocumented status) and resilience affect health care experience and care utilization.^29–31

Methods

We conducted virtual semi-structured, in-depth interviews with vulnerabilized SMW in Baltimore, Maryland (N=25) between June and October 2021. Our study was a cross-sectional, theoretical, qualitative research endeavor, guided by the tenets of grounded theory.³²

Study team, positionality, and reflexivity.

The research team consisted of a principal investigator (PI), two co-investigators, and six graduate and post-graduate researchers. The team included majority queer/SMW-identifying cisgender women with various racial and ethnic backgrounds (White, Black, Hispanic/Latinx, and Asian). The primary analyst/first author is a cisgender woman of Asian descent who identifies as mostly heterosexual, with an educational background in both public health and medicine, who emigrated to the United States as an adult. Her lived experience as a person with multiple minoritized and privileged statuses allowed her to identify with parts of participants’ stories and offered both an insider and an outsider perspective.

Respondent eligibility and recruitment.

Study eligibility was designed to capture HIV-related vulnerability, which in many ways aligns with overall vulnerability, and therefore mirrors the National HIV Behavioral Surveillance study (NHBS) pre-determined eligibility criteria with a few additional factors. Participants were required to be 1) a cisgender woman and 2) a member of a sexual minority group either by self-ascribed sexual identity (e.g., lesbian, gay, bisexual) or behavior (e.g., same-sex partners) to be included in the study. Participants were eligible if they were over 18 years of age, spoke English, and resided in the greater Baltimore area. Additionally, participants had to meet one of two additional sets of NHBS pre-determined eligibility criteria to be considered vulnerabilized. The first set of criteria pertains to injection drug use-related HIV risk and stipulates having injected drugs that were not prescribed for them in the past 12 months. The second set of criteria addressed sexual behavior-related HIV risk and included 1) being 18–60 years old, 2) having had vaginal or anal sex with opposite sex partner in the past 12 months, and 3) having low socioeconomic status based on individual and household income.³³

Participants were recruited to the study via targeted convenience sampling through street outreach (n=9), flyers posted virtually and physically in places that were likely to be frequented by our target population (n= 9), referrals from studies (n=5), and peer referral from participants (n=2). A total of 11 participants were lost to follow-up due to various reasons including not having reliable access to a phone, illnesses, and other unspecified reasons. Participant recruitment continued until the research team determined that saturation on central interview domains had been sufficiently achieved. Saturation was determined via post-interview debrief forms and regular team discussions.

Data collection.

The first author conducted most of the interviews; the senior author and other graduate research assistants conducted the remaining interviews. Interviewers received training on best practices, including trauma-informed interviewing practices, for conducting qualitative interviews with people from diverse, under-served populations.

We developed a semi-structured interview guide with open-ended questions covering: 1) sexual orientation and gender identity; 2) social network and support; 3) HIV risk, structural vulnerability, and support; and 4) experiences accessing health and social services. Pilot interviews were conducted to refine the guide prior to data collection and were not included in our results. Within the third and fourth sections, we asked about participants’ physical and mental health status and experiences accessing resources and health services. For example: “Are struggles with your physical/mental health a current or recent challenge you have faced? If yes, can you tell me a bit more about those struggles?”; “Are money/food/housing problems a current or recent challenge you have faced? If yes, can you tell me a bit more about this?”

An initial screening survey was administered via phone to identify eligible participants. Once they were identified, study rationale and goals were shared with all potential participants. Those who provided oral informed consent over the phone then completed a brief interviewer-administered demographic survey to inform question-tailoring during the interview. At this point, participants were offered the option to be informed of future study findings.

To complete interviews, participants called in to a secure and private virtual Zoom interview session using a local phone number. The interviews lasted approximately 60–90 minutes and were audio recorded. Participants were compensated for their involvement with a prepaid $50 Visa gift card distributed by mail. Further, a local resource guide was developed and maintained to offer supports to participants. No repeat interviews were conducted with any participant.

The study and its protocols were approved by the Johns Hopkins Bloomberg School of Public Health institutional review board. Data collection instruments are available upon request from the PI.

Data validation.

During data collection, the interviewer repeated participants’ statements to ensure correct understanding and interpretation. Transcripts were not returned to participants for comment or correction. All audio-recorded interviews were professionally transcribed verbatim. Transcripts were reviewed by members of the research team against audio recordings to ensure accuracy and de-identification.

Data analysis.

Interviewers completed debrief forms after each interview and the team kept ongoing memos, which provided preliminary analysis of emergent themes and guided codebook development. We employed a hybrid approach to coding; the a priori codebook was developed deductively based on the pre-established research aims and in vivo from debrief forms, ongoing memos, and open coding exercises. Three coders independently open-coded four transcripts inductively using thematic analysis; emergent codes were then incorporated into our preliminary codebook. Our codebook was finalized using a team-consensus approach and contains codes that capture characteristics and themes of sexual orientation, health status, social support network, and other structural vulnerabilities.

Finalized transcripts were uploaded into Dedoose for coding and analysis.³⁴ Each transcript was independently coded by two members of the research team, discrepancies were discussed with the PI, and consensus reached to establish a final coded data set.

For the current analysis, code reports were generated for text coded with the 1) “physical health” and “services” and 2) “mental health” and “services” codes. Relevant coded text segments were reviewed through an iterative, team-based approach to identify key themes, reporting patterns and conceptual relationships using thematic analysis. Barriers, facilitators, and ideals were grouped along four levels of a modified SEM:³⁵ 1) structural level, 2) organizational level, 3) interpersonal level, and 4) individual level. Results are summarized below by key themes, using the SEM as an organizing structure. We used narrative synthesis to consolidate the data and included illustrative quotations to underscore central points. Quotations are attributed to participants using age, race, and sexual orientation; in some cases, additional descriptive data are provided to offer further context for interpreting the quotation. Participant-generated solutions, when available, are listed at the end of each sub-section. Quotations are edited for brevity and clarity without changing the narratives.

Reporting of study results.

The reporting of the study results will be guided using the Consolidated criteria for Reporting Qualitative research (COREQ) checklist (see Appendix, available from authors on request).³⁶

Results

The participants (n=25) ranged from 21 to 63 years of age. Ten participants (40%) identified as bisexual, nine (36%) as lesbian or gay, two (8%) as pansexual, one as queer, and three (12%) as heterosexual or straight but disclosed same-sex behavior in their lifetime. All participants had annual incomes of less than $30,000. Participants’ educational levels differed; “some college, associate, or technical degree” was most frequently reported (36%). When asked to describe their race, most participants identified as Black only (40%) or White only (36%). Three participants considered themselves to be of Hispanic or Latina origin, of whom two respondents identified their race as Hispanic/Latina only (see Table 1). Participants reported a range of physical and mental health conditions including but not limited to bipolar disorder, depression, anxiety, substance use disorders, physical health issues related to substance use disorders, diabetes, cardiovascular diseases, HIV, mobility-limiting disabilities, and other chronically debilitating diseases.

Table 1.

PARTICIPANT DEMOGRAPHIC CHARACTERISTICS

Participant demographic (N=25)	N	%
Sexual Orientation Identity
Bisexual	10	40%
Lesbian/Gay	9	36%
Straight/heterosexuala	3	12%
Queer	1	4%
Pansexual	2	8%
Race
White only	9	36%
Black only	10	40%
Hispanic/Latina	2	8%
American Indian or Alaskan Native and White	2	8%
Black and Asian	1	4%
Black and Hispanic/Latina	1	4%
Age
21–30	7	28%
31–40	9	36%
41–50	4	16%
51and above	5	20%
Income level
$0 to $416 (M) $0 to $4999 (Y)	8	32%
$417 to $1249 (M) $5000 to $14999 (Y)	9	36%
$1250 and above (M) $15000 and above (Y)	8	32%
Educational level
Less than Grade 12	3	12%
Grade 12 or GED	7	28%
Some college, associate degree, or technical degree	9	36%
Bachelor’s degree and above	6	24%
Sex work
Ever exchanged sex	15	60%
Exchanged sex in the past year	11	44%
Housing insecurity
Housing insecurity in the past year	9	36%
HIV status
Positive	3	12%
Negative	20	80%
Unknown	2	8%

Note:

^aParticipants who identified as heterosexual or straight and disclosed same-sex behavior in their lifetime.

Figure 1 illustrates key themes of health care access and related barriers and facilitators mapped onto the SEM.

Figure 1.

Key health care access barrier and facilitator themes by SEM level. This figure presents key themes of care access and utilization at structural, organizational, interpersonal, and individual levels. The barriers and facilitators are listed corresponding to their respective SEM level. The arrows indicate that factors at different levels are interactive; factors in one level can impact factors at other levels. Factor levels are not mutually exclusive; for instance, minoritized social identities can impede care access at the individual level, but also at every other level.

Structural factors.

We identified three themes at the structural level that affected access and use of mental and physical health services for SMW: 1) stigma and sociocultural norms, 2) national health system and infrastructure, and 3) local health system and infrastructure.

Stigma and sociocultural norms.

Most of the participants identified sociocultural norms and associated stigma and discrimination experiences as major care barriers. Specific discrimination related to race, gender, sexual orientation; drug use; mental health; and the intersections of these identity facets was described. One participant discussed receiving inferior care which she believed was related to identity-based bias:

I wondered if I had blonde hair, blue eyes … they would care more about the situation. I wondered if my racial identity impacted the way the ambulance care and the ER staff [and police] responded to me. I wondered if I was White would I have received the same care … I think that I would have been at least given a bed [and] more pain management care. I think there were some assumptions made about drug use based on my identity that aren’t true. But I’ve experienced that before.—22-year-old Black, pansexual woman

Multiple participants shared uncomfortable experiences accessing services and being treated unfairly or not having their concerns taken seriously due to their gender.

Women are not ever treated fairly in the medical system … [my husband] is in the room with me and the doctor is talking to him as if I’m not sitting there, and I’m like: “I’m the patient.” And he literally said, “Oh, I know” and then continued to talk to him as if I wasn’t going to understand what he was saying.—37-year-old Black, lesbian woman

A couple of participants also shared instances where they were discriminated against based on their gender expression or perceived sexuality:

I get stereotyped. I get discriminated a lot … They [staff at substance use treatment facility] pinpoint me, like if I’m sitting next to a girl and they see us sitting next to each other, they’ll start saying stuff like, “No fraternizing, you need to move away from her—stop talking—you can’t touch her,” when really, all these girls brush each other’s hair. I got kicked out for [passing] a note [for other people].—21-year-old White, gay woman with self-identified masculine gender expression

On the contrary, participants who were “straight passing” have less experience of discrimination based on perceived sexuality in health care settings.

I think in general I am straight passing. So I don’t think that my sexuality or gender expression played a big part in my physical health [care experience].—22-year-old Black, pansexual woman with self-identified very feminine gender expression

A few participants reported more willingness to engage in care if they had experienced less discrimination.

National health system and infrastructure.

Many participants mentioned health insurance barriers related to being undocumented, not meeting eligibility for state coverage, or having limited coverage.

I know some of my friends in the LGBT community who aren’t insured or [are] more in poverty who had to go to clinics [that are] not funded that well … [they] can’t access mental health services because they weren’t born here, or they don’t have insurance.—23-year-old Hispanic/Latina, pansexual woman

Several participants expressed how expanded national insurance coverage, such as the Affordable Care Act, or policies that ensure care access regardless of insurance status, have increased their health care access and expanded the types of care they receive.

[With Medicaid], you don’t have to only go to the emergency room when you’re dying, you can get care before it gets to that point. People walk in with no insurance. I’ve been on programs where if you don’t have money and you don’t have insurance, they don’t take you … that is a struggle if you don’t have a job.—46-year-old White, bisexual woman

However, despite state insurance facilitating care access and subsidizing cost, many participants still commented on care coverage limitations through Medicare or Medicaid. Some commonly mentioned barriers include limited locations or providers, less comprehensive coverage than costly private insurance, and long waitlists for in-network providers.

Insurance isn’t going to cover therapy adequately. I was having a hard time finding a therapist [covered by my insurance] that was open to polyamory.—31-year-old White, bisexual, polyamorous woman

Cost of health care and insurance were mentioned as major service barriers by many women. In addition, not being eligible for other social benefits also indirectly affected some participants’ ability to receive care.

I wish I was able to access health care at a much lower cost. The premium that I’m currently paying is not within my budget at all. I wish I was able to access more social services to receive more financial support … the ones that were made available during COVID, I wasn’t eligible for most of them.—22-year-old Black, pansexual woman

Some participants mentioned complementary and alternative medicine, such as acupuncture, as an important part of care not often covered under their insurance.

A lot of the alternative stuff is not available to people who have Medicaid or certain types of insurance. These things are available to people who have the ability to pay out of pocket.—44-year-old White and American Indian or Alaska native, bisexual woman

A few participants proposed solutions to overcome care barriers including expanded health insurance coverage and eligibility, technological updates, more resources for existing infrastructure, and making health service information and resources more readily available.

An easy application would be ideal. Something that’s translated into multiple languages. Having people that can help with the application process, like a case worker … overall making the process a little more seamless and less nebulous … the process is incredibly confusing. The technology is outdated. Maryland is actually pretty OK, in some other states it’s not great … it’s a system that needs a lot more funding.—26-year-old Hispanic/Latina, queer woman

Local health system and infrastructure.

Regional health policy and insurance coverage also affected some participants’ care access and life choices.

The main reason for me and [my partner] moving here [Maryland] and staying is because we have health insurance here. And that’s a really, really big deal. When you have substance abuse issues and mental health issues, having health insurance is worth moving a thousand miles away from your home to know that you can go to the doctor and get on a program when you need to.—46-year-old White, bisexual woman

Many participants mentioned the lack of affordable and accessible transportation as a major barrier to accessing health services.

There is only a bus (to the clinic) at certain times of the day … You can get there, then sit there all day waiting to get home when the bus goes in the evening. It’s a whole day-long ordeal. And they’re not free—you still have to come up with $3.50 each way.—46-year-old White, bisexual woman

Transportation support was identified as a major facilitator. This included transportation planning support, providing free transportation (e.g., bus tokens) to the clinic, and health services located near their home, including mobile services.

It was a mobile clinic … they would go to different communities different days of the week. They came to my neighborhood every Tuesday morning, which is a really good service.—37-year-old Black, lesbian woman

A couple of participants suggested expanding access to the restricted medications that are vital to their day-to-day function through virtual care and pharmacies located in their neighborhoods.

[The services should be] everywhere, every corner … The laws of the methadone clinics haven’t changed since the seventies. Why do you have to go to a methadone clinic? Why can’t you go to Walgreens, hospital, CVS, or Rite Aid? … they make it so difficult to comply.—46-year-old White, bisexual woman

Furthermore, multiple participants advocated for increased access to high-quality care in communities with unmet needs, such as in low-income communities, immigrant neighborhoods, and locations with higher LGBTQ populations. They shared that having no care access or subpar quality of care is the norm in their communities, and exploitative practices are prevalent due to structural racism and discrimination against other minoritized identities.

If you’re in 90% of Black communities in America then it’s a poor community … There aren’t good doctors, good therapists. There aren’t good anything. Every place [with] a therapist in the Black community—they weren’t there to be your therapist, they were there for you to be a paycheck … it should literally be a crime.—37-year-old Black, lesbian woman

Local community organizations played a vital role in mitigating effects of the structural and community level barriers. Organizations that provide multiple services have been major facilitators in providing stability and safety nets in these women’s lives.

[Local community organization] helped provide food, condoms, lubricants, lockers, laundry, Pap smears, psychiatry … they have nurses, they come around in the van … they offer a suboxone program. They help you with housing, legal aid, food pantries, everything.—40-year-old White, bisexual woman

Organizational level.

We identified three themes that affected health care access and use at the organizational level: 1) Stigma and patient-provider relationships—“celebrating queerness,” 2) logistical accessibility, 3) linkage to care and co-location of services.

Stigma and patient-provider relationships—“celebrating queerness.”

Past negative experiences in health care settings such as perceived discrimination and unfair treatment due to gender, race, sexuality, and disability status were identified by many participants as the biggest factor in creating medical mistrust and negative relationships with providers.

You go to the doctor’s—“Is there any chance you could be pregnant?” No. And they ask, “Are you on birth control?” No. I just always say “I have a same-sex partner. I’ve had same-sex partners since I was 17” … I felt like she [provider] was pressuring me to go on contraceptives, IUD. I kept explaining to her I don’t need this, I just felt like she was trying to push and push, and I felt very uncomfortable with that. So, I found another doctor.—34-year-old Black, lesbian woman

Many participants suggested increasing staff training around culturally sensitive, trauma-informed, and LGBTQ competencies to improve care.

I’ve had positive experiences when there is acceptance and celebration of queerness, and trauma-informed care, and culturally competent services. When I experienced sexual violence, I wish I had received competent medical care that made me aware of all of my rights so that I could pursue justice. But I didn’t. … in the ideal world you wouldn’t be a physician without being an anti-racist, being trauma-informed, being queer-affirming … It should be a requirement.—22-year-old Black, pansexual woman

While many participants shared that receiving LGBT-competent care is their top priority, a few participants shared that biases related to other minoritized identities have contributed more to their negative experiences with health care.

[Being] queer-friendly is not my top priority for health care. I have some chronic diseases and physical disabilities, so that’s actually my biggest hurdle in health care, finding doctors who are sensitive to that. Because I have invisible disabilities, it’s not easy to see. I think especially for young women, doctors just don’t believe it’s real.—31-year-old White, bisexual woman

Providers that bring their values and beliefs into their patient interactions were noted by a few participants to strain the patient-provider relationship and cause harm.

I don’t think it was very effective to feel like religion or faith had to be in the picture of my therapy sessions. Especially because religion or faith was one of the reasons I felt or was told to feel extreme shame of the violence I had experienced.—22-year-old Black, pansexual woman

Increasing organization funding, performing adequate patient education, and increasing availability of resources were suggested as mitigation strategies by many participants for some of the challenges SMW face when seeking care. Having providers with similar gender identity, sexual orientation, or race/ethnicity was also important to many participants.

It should be run by people like [their patients] … I think there is something missing when it comes to health care and mental health services for queer people of color because it’s a unique kind of trauma.—22-year-old Black, bisexual woman

Logistical accessibility.

Ability to communicate with a care provider outside of clinics visits (e.g., via phone, text, patient portal), organizational hours of operation, availability of appointments or length of the waitlist, clinic location, and other logistical factors were discussed by many participants as important care access facilitators.

When I moved to the U.S. I got on Medicaid, which was helpful … I was finally able to go to therapy, but then the waiting list for a therapist is so [expletive] long … I waited six months to get in with a therapist.—26-year-old Hispanic, queer woman

Linkage to care and co-location of services.

Most participants reported linkage to care through other formal services, such as educational institutions, addiction services, social services, the criminal justice system (such as Child Protective Services or court-mandated programs), and referral by other health care providers as major facilitators of care access. Many participants also identified co-location of related services at the same organization or referral program and linkage to other ancillary services as the most important facilitators of care. Some participants also reported linkage to care through social networks and through program outreach.

[Client assistance] program was for pregnant women in addiction. Monday through Friday, you have classes that you go to. Saturdays you get your methadone for Sunday. It’s up until six weeks after you have your baby; if your baby’s not in NICU for withdrawals, then you bring your baby to class. They had addiction class, parenting class, craft class, open discussion class. You had your own counselor, psychiatrists, all your medical needs, like your sonograms. They do urine tests and everything. It’s a really good program.—40-year-old White, bisexual woman

Interpersonal level.

Stigma and social support.

The majority of participants mentioned stigmatizing cultural and religious beliefs about sexual orientation and certain health conditions held by family and community as major barriers to receiving certain types of care, such as mental and physical health care related to HIV/AIDS or substance use.

My mental health struggles have persisted for so long without any help [because] when my grandmother found out I was gay, and I told her that I wanted a therapist, she literally told me, you have to be one or the other. You can’t be gay and crazy. And that is the thing that you grow up hearing as a Black person.—37-year-old Black, gay woman

Strong social support from family, including chosen family, friends, partners, and the LGBTQ community, was identified by many participants as a strong care access facilitator. Types of support included transportation, encouragement to seek help, and assistance with medication adherence.

When I was 13 [my family] still had that stigma, but they saw how serious [my mental health struggles] could get and they were like, OK, maybe we should talk to somebody.—23-year-old Hispanic/Latina, pansexual woman

I will not go to the doctor unless I have to. This winter I was so sick … my mom picks me up and takes me … she’s like—you don’t have a choice, you are going.—46-year-old White, bisexual woman

A few participants disclosed social isolation and negative impact on relationships because of other stigmas (e.g., HIV-positive status, substance use, exchanging sex). Some described relying on partners or others within the LGBTQ community who share the same circumstances for health support and care access.

[I turn to] my man [for physical health support like taking meds and attending appointments]. He knows my situation, because he is [HIV-positive] too … [being HIV-positive] impacted my relationships because I can’t really get in a lot of relationships with my situation.—37-year-old White, heterosexual woman with same-sex behavior

Multiple participants who have experienced stigma and discrimination due to their mental and/or physical health conditions expressed a strong desire to share their experiences with others in the community or with the younger generation to provide guidance in navigating health services and overall support. This exemplifies a larger theme of resilience heard throughout the interviews.

If I see other people in the same situation, that don’t know how to handle it, I talk to them, give them advice, and let them know they’re not alone.—37-year-old White, heterosexual woman with same-sex behavior

Individual level.

Three themes were identified on the individual level: 1) internalized stigma, 2) multiple minoritized statuses (i.e., race/ethnicity, immigration status, low SES), and 3) knowledge, health literacy, self-efficacy, self-motivation, attitude, and beliefs.

Internalized stigma.

Many participants shared that their community with residents that are from predominantly minoritized backgrounds lacks access to high-quality care; and a few noted that therefor people in their community have been conditioned to accept inequitable distribution of resources and health infrastructure via internalized stigma. A few participants with higher levels of education were able to mitigate some of these effects due to higher levels of health literacy.

Most people around here [my community] accept this [care standard] as good enough, I don’t…. I don’t mean any harm, but I went a little further than high school, so for me to [accept exploitative health practices], it’s not going to happen. But when you offer this to someone that doesn’t have a job, other income, maybe they’re an addict, [they are more susceptible to subpar/predatory care].—37-year-old Black, lesbian woman, with some college, associate’s, or technical degree

Multiple minoritized statuses.

Many women discussed how the intersection of minoritized identities, such as race/ethnicity or immigration status, with sexual minoritized status further exacerbates inequality of care access.

[Struggling with physical and mental health has] been a recurring theme throughout my life … again, this goes back to us being undocumented. If [we] get sick, where can I turn? We don’t have access to a doctor … [We don’t have] any semblance and feelings of safety … it’s just so integral [to] your existence.—26-year-old Hispanic/Latina, queer woman

Most participants shared that lower income, limited health literacy and knowledge to navigate health systems, and language difference were major barriers to care access for them.

At the time when I was undocumented, I didn’t know a lot of things, I had very limited access. In order for me to access health care, my mom and I would have to make up names so that I could go to the emergency room, or purchase antibiotics at some corner store … I wish I had known that I could have qualified for Medicaid and these social programs. But no one told us … maybe some of the issues that I have now could have been better managed if I had started [care] earlier.—26-year-old Hispanic/Latina, queer woman

Knowledge, health literacy, self-efficacy, self-motivation, attitude, and beliefs.

Lack of knowledge and low levels of health literacy were mentioned by many as barriers and the opposite as facilitators to care. Lack of self-efficacy and self-motivation in getting to appointments and negative attitude and beliefs also affect many participants’ care-seeking behavior. Other individual-level barriers included medication side effects and perceived lack of treatment progress.

I think sometimes the barrier is that trying different medicines and therapies can be really time consuming … And sometimes I just decide that I’m not really ready to deal with another round of [treatment]. I know there are more therapies out there, or more medications that I could try, but sometimes I just feel like I have to take a break from going through that.—31-year-old White, bisexual woman

Many participants identified important protective factors from various SEM levels that contribute to resilience and mitigate the effects of these individual-level barriers, including social support, more structural resources and patient education to aid in self-efficacy, and outreach programs tailored to the specific needs of this vulnerabilized population.

They’ll have a nurse come home with me to take care of my wound, the dressing. And they’ll send me home with a thing to teach myself to do … they put a PICC line in my arm for administering the antivirus and they taught me how to do that, so I did that on my own … my doctors and my nurses that I had [supported my health]. I try to stay close to them.—63-year-old Black, lesbian woman

A few participants mentioned other facilitators including positive care impacts, such as facilitating normal daily functioning, replacing unhealthy coping mechanisms, achieving closure from trauma, and alleviating pain or mental health conditions. Beyond the health care context, expanded access to social infrastructure supports has positive effects on individual-level barriers to care access.

The only thing that usually stopped me was me … but when I got in recovery, they helped me get medical assistance, my ID, Social Security card, things like that. Then, once I got the help I need, I try to maintain that connection.—38-year-old Black, heterosexual woman with same-sex behavior

Despite the circumstances participants are in and the overwhelming challenges they face, a great majority showed strength and resilience and shared their determination to work towards better physical and mental health.

I recently got side-tracked, I’ve lost the doctors, and I haven’t been to work. So it’s like I’m starting all over again. But I did it before, and gotten things together, and I’m going to do it again, so I’m not going to say I’m going to try to do it again because that’s like an excuse. No, I’m going to DO IT, I’m not going to try.—35-year-old White and American Indian or Alaska native, bisexual woman

Discussion

This paper explores barriers and facilitators at each SEM level that influence health care access experiences among vulnerabilized SMW. We found that stigma and discrimination affect all levels of the SEM. However, despite the overwhelming challenges participants face, facilitators and factors that lead to personal empowerment and resilience were also identified at each level and can be built on by public health endeavors to further mitigate the negative effects of care access barriers.

In line with prior literature that examines barriers and facilitators to care access in minoritized populations, we found expansion of insurance coverage (both national and regional), transportation support, service co-location, more funding for health care infrastructure development, sexual minority-inclusive health policies and infrastructures, and affirming patient-provider relationships to facilitate care access, and the absence of those to be care access barriers.^37–39 Future policies and research should focus on building health infrastructure on both the national and regional level that are inclusive of vulnerabilized sexual minority populations, including expanding eligibility for state insurance, expanding the types of health services covered under state insurances, increasing the number of community organizations that serve these vulnerabilized populations, increasing co-location of services, expanding state-sponsored referral programs and linkage to care, and increasing funding for all the measures mentioned above.

Similar to findings from prior health services research, we found that participants with greater social support reported better care access and engagement;^40–42 however, the relationship structures and nontraditional support system of this population must be considered when providing care. Due to homophobia and heterosexism, SMW are more likely than others to be isolated from family and friends and less likely to be married and have children.^43–45 Another analysis of our dataset focused specifically on mental health shows that some participants were socially isolated due to stigma/discrimination while others received social support from a wide range of sources, including family members, partners (both monogamous and polyamorous), and other members of the same stigmatized groups (e.g., people living with HIV, LGBTQ community, people from substance use support group); the most important social support quality was non-judgment related to sexual orientation and/or mental health struggles; family, friends, and partners were providing similar amounts of support, primarily emotional.⁴⁶ Taken together these data indicate the importance of care providers understanding and making use of SMW’s social networks to increase care access and utilization and a need for more public health research and practice to inform best practices.

The complex nature of intersectional stigma and its negative health impacts have been explored and documented widely in existing literature;^29,47,48 the multiple adverse effects of intersectional stigma on care access (e.g., care avoidance, lower treatment uptake and adherence) were strongly reflected within our sample of vulnerabilized SMW Participants from our study reported discrimination and stigma experiences attributed to their intersectional identities, including the confluence of racism, sexism, homophobia/heterosexism, substance use stigma, sex-work-related stigma, and HIV-associated stigma, all of which contributed to care access barriers (e.g., receiving no care or subpar care). Additionally, some reported exploitative clinic practices due to structural racism, which further exacerbate existing medical distrust among sexual minoritized populations with intersecting minoritized racial/ethnic identities.^49,50 Participants from these communities also shared additional challenges at the interpersonal level that impeded care access, such as homophobia and cultural stigma around mental illness and accessing mental health care. Nevertheless, racially and ethnically minoritized participants also reported factors that lead to resilience, such as strong familial connection and an emphasis on gaining education to break through social barriers. Sexual minority women subgroups with intersecting minoritized identities require consideration when developing interventions to support care access and use.

While many participants shared how multiple minoritized identities related to sexual orientation, gender, and race intersect and work synergistically in creating multi-level barriers to care access and service utilization, a few participants felt they focused on fighting one predominant force of oppression to ensure survival. One such example was having an undocumented residency status, which, for those women, was discussed as the most crucial factor shaping experience accessing care, superseding the impact of all other minoritized identities (e.g., sexual orientation, race/ethnicity). The experiences shared by these participants echo the findings from emerging literature, which has documented care access disparities among undocumented sexual and gender minoritized populations and showed that fear of deportation had resulted in chronic anxiety, restricted social network engagement, and avoidance of care.^51,52 Further research is needed to understand the experiences of undocumented SMW and to inform interventions. Concomitantly, policy and practice work focusing on removing care access barriers for undocumented people and providing legal protection for seeking care is crucial to achieving health equity for all.

It is important to note that, although we have mapped each barrier and facilitator onto specific levels of the modified SEM, factors that were displayed in one level can in fact be placed in other levels as well. One such example includes one’s social identities (including racial/ethnic identities, sexual identity, gender identities); though labeled as individual-level factors via internalized stigma, discrimination and stigma against these social identities are in fact determinants of health at the structural, organizational, and interpersonal levels as well. Factors at each level are not mutually exclusive, and they interact with each other to create a system of multi-level barriers or facilitators. Our findings can help inform interventions that support facilitators and resilience factors while eliminating or mitigating the negative effects of multi-level barriers.

Limitations.

This study has several limitations. First, the call-in model required participants to have phone access, and a few participants were lost to follow up because they lacked phones, potentially leading to a dataset that does not include perspectives of the most vulnerable of this sub-population. Second, social desirability bias may have influenced participant responses, although the anonymity of the call-in method and the rapport-building of our staff likely helped to compensate for this. Third, issues associated with intersectional identities emerged as a notable theme among our data; our sample size of 25 participants, though adequate to synthesize care access data for vulnerabilized SMW, was likely not adequate to represent experiences from all multiple minoritized individuals. Thus, inferences of how individual intersecting identities affect care access and utilization are limited. Finally, since the study was designed to capture HIV-related vulnerability, which aligns with overall vulnerability, participants had to have injected drugs or had opposite-sex sexual relations within the past year while also having a low income. This limits the generalizability of the findings to this subset of vulnerabilized SMW population. Despite the limitations, we believe this study contributes positively to the literature as this is one of the first studies to comprehensively look at barriers, facilitators, and factors that lead to resilience and better care access in vulnerabilized SMW.

Conclusion.

Vulnerabilized SMW experience disproportional stigma and intersecting oppression at all levels of the SEM. Inclusive health policies and infrastructures (e.g., increasing insurance coverage, enacting and enforcing legal protection against discrimination, expanding public health transport infrastructure), building affirming patient-provider relationships and care environments across institutions that celebrate queerness, and understanding and incorporating the unique social networks of vulnerabilized SMW are critical and lead to personal empowerment and resilience to overcome care access barriers. Further work focusing on the specific needs of some sexual and racial/ethnic minority subpopulations is needed, and future interventions should focus on decreasing barriers and supporting facilitators to improve care access, utilization, and ultimately health outcomes for this population.