‘Getting comfortable with the uncomfortable’: barriers, facilitators and influences on reproductive health discussions from Hispanic women with systemic lupus erythematosus in the USA – a qualitative study

Abstract

Objective

Systemic lupus erythematosus (SLE) primarily affects women of reproductive age, necessitating complex conversations surrounding pregnancy and contraception use. Hispanic women in the USA bear a disproportionate and severe burden of SLE, facing language and cultural barriers to care, and higher rates of unplanned pregnancy and under-representation in reproductive health research. This study explores patient-reported barriers and facilitators to reproductive health conversations as well as their attitudes and perceptions on how these conversations can be improved.

Methods

We conducted 30 semistructured interviews in both English and Spanish with Hispanic women aged 18–45 with SLE. Participants were recruited from Los Angeles General Medical Center and Lupus LA. Eligible participants were heterosexually active or considering pregnancy within 3 years. Interviews were analysed using grounded theory to identify themes related to barriers and facilitators in clinical reproductive health interactions.

Results

Three major themes emerged: (1) barriers to reproductive health conversations were often driven by competing clinical priorities as well as discomfort discussing sensitive topics; (2) facilitators to reproductive health conversations included the presence of genuine clinician–patient rapport, well-controlled disease activity and patient proactiveness; (3) areas of improvement included both a more encompassing and thorough data-driven approach to reproductive health discussions throughout disease course.

Conclusion

Findings reported herein underscore the importance of early, individualised reproductive health counselling for women with SLE. Enhanced clinician communication with sensitive topics, refined patient education and frequent interdisciplinary collaboration can help address the emotional, medical and informational needs of Hispanic women with SLE navigating reproductive decisions.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• There is a substantial amount of information that documents quantitative deficits as it relates to reproductive health management and outcomes in systemic lupus erythematosus (SLE), but there are scant data that evaluate this from the patient’s point of view in a population at risk of poor maternal–fetal outcomes.

WHAT THIS STUDY ADDS

• Our qualitative study gathers patient-reported data regarding the need to improve upon reproductive health conversations and specific ways to do so for an urban, English-speaking and Spanish-speaking population with SLE.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• The data we collected can affect clinical practice by encouraging clinicians to optimise reproductive health conversations through increasing rapport, revisiting the topic frequently, and ensuring time for the topic even in the face of high disease activity.

Significance and innovation

This study provides new insights into the barriers and influences that shape reproductive health conversations for Hispanic women with systemic lupus erythematosus (SLE). We analysed each participant’s experiences and conversations with their rheumatologist(s) surrounding reproductive health. Our findings highlight areas where physicians can directly improve patient-centred counselling in a historically underserved population.

• This qualitative study is the first in the US to address a critical gap in care that focuses on in-clinic reproductive health barriers in Hispanic women with SLE.

• Clinician–patient rapport emerged as a key facilitator, with participants emphasising the value of empathy, continuity, comfort and personalised communication.

• Patients call for frequent and ongoing reproductive health conversations, suggesting that these should begin early or even at diagnosis.

• The conversations need to evolve over time to reflect changing goals, as opposed to focusing on a single yes/no question utilised for reproductive health screening.

Significant progress has been made in the past decade in addressing reproductive healthcare for patients with SLE, foregrounded by the introduction of the first-ever reproductive health guidelines from both the American College of Rheumatology (ACR; 2020 ACR Reproductive Health Guideline) and the European Alliance of Associations for Rheumatology (EULAR).^{1 2} Given that SLE is a chronic disease primarily affecting women of childbearing age and disproportionately impacting non-white populations in both incidence and outcome, these guidelines provide an essential evidence-based framework for managing reproductive health concerns.

Hispanic individuals with SLE—particularly those of lower socioeconomic status—often experience more severe disease than their non-Hispanic white counterparts. In particular, the US Hispanic population is one of the largest and fastest-growing US populations and often faces higher rates of unplanned pregnancies. Consequently, there is a critical need to address reproductive health disparities among Hispanic women with SLE.³,⁶ While quantitative data are vital for identifying specific elements, qualitative research is better suited for understanding the underlying social and cultural factors that influence these disparities. Yet, there remains a paucity of qualitative studies exploring reproductive health topics in patients with SLE, particularly in those patients from disadvantaged or under-represented populations. Indeed, a recent consensus statement (developed with input from patients, clinician–researchers and research professors) remarked on the need for improved patient-centred education surrounding pregnancy and fetal mortality risk in diverse SLE populations.⁷

In this study, we conducted semistructured in-depth interviews with Hispanic females living with SLE to understand their experience with managing pregnancy and/or contraception, particularly as it relates to discussions with rheumatologists regarding these topics. Using grounded theory, we conducted a qualitative thematic analysis to garner patient-reported themes that can be used to lay the foundation for acceptable interventions in the future that will enhance reproductive health outcomes for the Hispanic population with SLE.

Methods

Our study used the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist to ensure rigour in the documentation of methods and findings⁸ (online supplemental appendix 1). The study was approved by the Institutional Review Board of the University of Southern California (UP-24-00138).

Study population

We conducted semistructured, in-depth interviews with 30 Hispanic female patients diagnosed with SLE recruited from two sites, (1) Los Angeles General Medical Center (LAGMC), a large public teaching hospital in urban East Los Angeles, and (2) Lupus LA, a Los Angeles-based SLE support network. Eligible participants were women aged 18–45 who were currently heterosexually active or intending pregnancy within 3 years, fluent in English or Spanish, and residing in the greater Los Angeles area for most of the year. Recruitment at LAGMC was done via chart review followed by face-to-face invitations to participate, while Lupus LA participants were recruited through social media outreach. Participants from LAGMC had confirmed SLE via electronic medical record review per the 2019 EULAR/ACR Classification Criteria. Participants from Lupus LA had their SLE diagnosis corroborated by LW with clinical history, prior symptoms and medication history. Participants were informed that the study was aimed to improve the delivery of reproductive healthcare for women with SLE by gathering their perspectives on how physicians can better meet their needs. Among eligible and interested individuals, purposive sampling was used to include a diverse group regarding preferred language, reproductive health history, pregnancy intentions, duration since SLE diagnosis, nativity and education.

At LAGMC, two eligible participants declined due to a lack of interest, and one individual missed her scheduled virtual interview and was unable to reschedule. All Lupus LA participants who met the inclusion/exclusion criteria and agreed to participate completed their interviews. Interviews were conducted between June 2024 and March 2025.

A goal of 30 total participants was chosen, with the purpose of adequate representation of our diverse patient population and consistency with prior qualitative research, which demonstrates thematic saturation is commonly seen after 20–30 interviews in relatively homogenous samples.

Interview implementation

Our interview guide was developed in English and based on a prior literature review examining quantitative reproductive health deficits in SLE, data from our LAGMC population demonstrating gaps in reproductive health discussions, and clinical experience working with the LAGMC population (online supplemental appendix 2). Once finalised, the interview guide was pilot tested with three individuals from the target population to assess clarity, comprehensibility, relevance of questions, missing topics, interview length and flow and to train interviewers on the guide. These pilot participants, who were compensated for their time, provided feedback that led to wording adjustments for improved clarity in both questions and probes as well as more emphasis on certain high-priority topics to be addressed in question probes. The pilot interviews were excluded from the final qualitative analyses. In this regard, patients/the public were involved in the design, or conduct, or reporting, or dissemination plans of our research, as it related to modification and/or changes to the final semistructured interview guide. Otherwise, patients/the public were uninvolved in the design or conduct of the study. Some of the key core topics covered in the final semistructured interview guide included how the diagnosis of SLE affected the participant’s view of pregnancy or pregnancy planning, dynamic of conversations with clinicians regarding reproductive health in the context of SLE and non-clinical factors that also play a role in reproductive health decision-making.

Interview setting and researchers

All interviews were conducted virtually using Health Insurance Portability and Accountability Act of 1996 (HIPAA)-compliant Zoom. English-language interviews were conducted by LW, a female rheumatologist, while Spanish-language interviews were conducted by either a medical student, AMDO, or a rheumatology fellow, MD, both fully bilingual English/Spanish-speaking females, all trained in qualitative interviewing. Spanish interviews were conducted based on the English interview guide after it was translated into Spanish. Interviews were audio-recorded and transcribed for qualitative analysis. To foster open discussions, interviewers identified themselves as ‘researchers’ rather than physicians. Additionally, LW and MD did not interview participants with whom they had an established physician–patient relationship.

Interviewers took notes as needed to revisit key points raised by participants. Spanish-language interviews were transcribed and then translated into English. Transcripts were not returned to participants for review. All English and translated Spanish transcripts were securely stored in a HIPAA-compliant cloud drive for analysis. No qualitative analysis software was used. One Spanish-language interview required partial rerecording due to an unanticipated scheduling conflict. No additional individuals were present during the interviews, except for a few participants’ children who intermittently joined their mothers. Each participant was compensated US$150 after the interview. No follow-up interviews were carried out.

Data analysis and distribution

Data collection followed an inductive approach, continuing until data saturation was reached, defined as the point at which no new themes, patterns or perspectives emerged from additional interviews. This was assessed through ongoing iterative analysis, comparing each new interview to prior ones to determine whether novel insights were still being generated. While some themes continued to appear across the first 20 interviews, no new themes emerged by the 25th. The final five interviews served to confirm and strengthen previously identified themes, indicating that data saturation had been reached. Grounded theory was used to discover key themes and subthemes related to reproductive health discussions and pregnancy experiences. Coding was conducted after themes and subthemes were established, with four coders (AMDO, MD, AR and LW) participating in the coding process and oversight provided by MWi. Spanish transcripts were coded exclusively by AMDO and MD; LW and AR also coded the English translations. All transcripts were at minimum double-coded, and discrepancies were resolved through discussion to achieve consensus. During the coding process, the coding team met multiple times via virtual format, with numerous correspondences via electronic mail in between meetings. A lay summary of the findings was distributed to all study participants in both English and Spanish via electronic mail. Participants were encouraged to ask questions or provide comments, of which no feedback was received. Formal member checking was not performed.

Results

Thirty participants were interviewed (table 1). Seventeen participants (56.67%) had their interviews conducted in English, 12 in Spanish, and one stated that she preferred English but subsequently stated that she could only answer some questions in Spanish due to feeling more comfortable expressing her complex responses. Participants were on average 34.03 years old (SD 7.53), and most were born in the USA; the average time since SLE diagnosis was 12.57 years (SD 6.34). The majority (17 participants; 56.67%) had no more than a high school education. English interviews were, on average, 51.3 min long, and Spanish interviews were, on average, 40.6 min long. We determined three major themes that encapsulated participants’ perspectives about reproductive health conversations with their rheumatologist or other providers, described in table 2, along with relevant quotes.

Table 1. Participant demographics and clinical characteristics.

Characteristics	English interview Participants (n=17)	Spanish interview Participants (n=13)
Age at time of interview (years)	32.47±7.22	36.08±7.71
Average length of time since SLE diagnosis at time of interview (years)	12.64±6.60	12.46±6.82
US born	9 (52.94)	1 (7.69)
LAGMC recruitment	10 (58.82)	13 (100)
Any college education	12 (70.59)	3 (23.08)
Ever pregnant	9 (52.94)	11 (85.62)
Unplanned pregnancy after SLE diagnosis*	4 (23.53)	7 (53.85)
Desire for future pregnancy	11 (64.71)	8 (61.54)
Ever diagnosis of lupus nephritis	5 (29.41)	9 (69.23)

Data presented as mean±SD or number of patients (%).

^*Unplanned pregnancy defined as a pregnancy conceived when the individual was not actively intending/expecting to become pregnant with intercourse.

LAGMC, Los Angeles General Medical Center.

Table 2. Themes, subthemes and representative quotes from grounded theory analysis regarding barriers/facilitators to and ways to improve reproductive health conversations.

Theme	Subtheme	Representative quote(s)
1. Barriers to reproductive health conversations The quotes for this theme are from participants in response to questions that asked participants why conversations about reproductive health are difficult, unsatisfactory or non-existent with their rheumatologist	SLE-specific Management of SLE is prioritised over all other topics Perception that patients might be viewed as too ill to be sexually active or desire a family	‘I mean, the lupus doctors, too, they don't bring [reproductive health conversations] up maybe because sometimes they feel like they might have other more important topics with the patients (…) They don't think it’s appropriate because the patient’s probably, like, you know, not looking to get pregnant (…) They have a lot of patients to see, so they don't even bring it up’ (44-year-old; English-speaking; 1 child; SLE for 25 years) ‘I feel like maybe family planning […] is thought to be like something that the patient has put on the back burner. I feel like sometimes people maybe think that family planning isn't something that comes to mind when you have a disability (…) like, you should be more concerned with, like staying alive rather than reproducing because it’s like, how are you—how are you going to have a family if you're not guaranteed to survive? (…) We could have a normal lifespan, or it could realistically be cut short. (…) But, you know, like any other person, the disabled person, chronic person wants, everybody wants to have—some people want to have families’ (25-year-old, English-speaking; 1 child; SLE for 13 years) ‘I guess that they’re just focused on labs, labs, labs, the doctors. That’s their main focus (…) They don’t see me physically’ (35-year-old; English-speaking; 2 children; SLE for 12 years)
	Clinician-specific Lack of time Lack of interest or expertise Lack of rapport	‘Often, they just check your tests, say, ‘Everything looks fine, you’re doing well,’ and move on. That’s it. They don’t take the time to discuss things or to address these concerns. For people who might want more children but are scared, they don’t create a space for those conversations (…) Especially because there are a lot of young people with this disease. I feel that taking the time to open up this topic and talk about it would be really helpful. It might help someone overcome their fears or even decide to have children, knowing it’s possible with the right care’ (43-year-old; Spanish-speaking; 2 children, SLE for 18 years) ‘(The rheumatologists) kind of throw it off on OB. And OB kind of does the same thing and throws it off to your rheumatologist. So they kind of like go both ways, honestly’ (41-year-old; English-speaking; 5 children; SLE for 16 years) ‘Contraception wasn’t something I thought about. I went there to get checked for lupus, but contraception wasn’t a topic that ever came up, either on my end or theirs [and pregnancy planning] was never a topic of discussion. Nobody asked, ‘Do you want to have more children?’ or anything like that. It just never came up—until I got pregnant’ (43-year-old; Spanish-speaking; 2 children, SLE for 18 years) ‘My first rheumatologist ever was very, very blunt and not emotionally supportive (…) not that I expect, you know, my rheumatologist to be my therapist, but he was not at all supportive or careful about the way that he presented certain information (…) so going into my appointments was, like, anxiety-inducing’ (21-year-old; English-speaking; no children; SLE for 2 years)
	Patient-specific Often somewhat tied to SLE-specific factors as well	‘When you're sick, you don't even think about having kids or becoming pregnant or anything like that when you're feeling sick’ (35-year-old; English-speaking; 2 children; SLE for 12 years) ‘I think it makes people sometimes uncomfortable to talk about their sex life or talk about their birth control life. It isn’t a very comfortable topic as opposed to talk about your kidneys or talking about your heart. So I think it’s just one of those things, like getting comfortable with the uncomfortable, because it’s really important to know (…) see, it’s even uncomfortable for me’ (38-year-old; English-speaking; 1 child; SLE for 18 years) ‘Another thing would be probably how we ourselves feel about our bodies (…) Like, I don't really want to talk about this because I'm not very comfortable in my own skin. And that, again, could be a lot of our medications change how our bodies look. With the rashes and the side effects, we don't feel that great about our bodies, so we don't want to talk about it (…) it’s negative stuff because lupus is affecting it (…) unfortunately, sex, and pregnancy, and our menstrual cycles all fall into that kind of category’ (29-year-old; English-speaking; no children; SLE for 10 years) ‘I never tried to ask [about pregnancy planning] because I always carried this belief with me—if I hadn't gotten pregnant, I wouldn't have planned to have more children. I always had the mindset that I couldn’t have more children. because of the medications, because of everything I went through, I was already mentally prepared for that reality (…) I never brought it up, and they never asked me, ‘Do you plan to have more children?’ or anything like that’ (43-year-old; Spanish-speaking; 2 children; SLE for 18 years)
2. Facilitators to reproductive health conversations The quotes for this theme are from participants in response to questions that asked participants why conversations about reproductive health were perceived as effective, satisfactory, or well-received	SLE-specific Participants more invested in these conversations when SLE is in remission/low disease activity	‘And so I am not ready to ask those [pregnancy planning] questions because I can't think about those things until I'm feeling well and staying well’ (28-year-old; English-speaking; no children; SLE for 10 years) ‘I feel like I could take care of a child now because my spirits are better and everything. I hardly go to the hospital anymore…now, seeing how my health has improved gives me hope and the confidence to be a mother who can actually be there for her child’ (34-year-old; Spanish-speaking, no children; SLE for 13 years)
	Clinician-specific More rapport between clinician–patient leads to better conversations Female clinician frequently but not always preferred	‘It seems like a minor thing, but it’s kind of big, if it’s a female doctor instead of a male doctor. Sometimes that makes a big thing. You feel like you're almost talking to a girlfriend, or a sister, or colleague, vs you're just talking to this random man’ (29-year-old; English-speaking; no children; SLE for 10 years) ‘I’ve been lucky with most of my doctors. I’ve had doctors who genuinely care about me as a patient, and I appreciate their honesty’ (45-year-old; Spanish-speaking; 2 children; SLE for 25 years) ‘It’s always better when the supervisor [attending physician] gives a second opinion. For me, it feels much better because it makes you feel more comfortable and reassured. I’ve always had situations where the doctor calls the supervisor for additional input’ (41yo; Spanish-speaking; 1 child; SLE for 14 years) ‘[He] gives me a lot of information about my medication, is very clear and concise but still very informative, and gives me, again, the positives and negatives of everything, and I feel comfortable speaking with him about any topic and not feeling shut down and unsupported’ (21-year-old; English-speaking, no children; SLE for 2 years)
	Patient-specific Self-advocacy valued Factors including rapport with physician, language, background knowledge also at play	‘They always use an interpreter, and the interpreter communicates everything I say to the doctor correctly (…) Sometimes I even feel very happy when I go to the hospital and see that many doctors know how to speak Spanish. That helps a lot in being able to communicate well with us, especially for Latinos who don’t know how to speak English. I think that gives you a lot more confidence to ask questions’ (34yo; Spanish-speaking; 2 children; SLE for 18 years) ‘You also have to advocate for yourself. You shouldn't stay quiet. Just because the doctor doesn't bring it up doesn't mean you have to stay quiet about it’ (24yo; English-speaking; 1 child; SLE for 9 years)
3. Patient-reported desires for improving reproductive health conversations The quotes for this theme are in response to how reproductive health conversations could improve for patients with SLE	Consideration of each woman with SLE as a unique individual; addressing reproductive health early and frequently to provide holistic care	‘Maybe sometimes we forget or fail to see that lupus is not just this disease floating around. It is inside a human, living being, and 90% of that is women, and that is part of a woman’s life, some of us’ (29-year-old; English-speaking, no children; SLE for 10 years) ‘Well, they should talk to you and say ‘You know what?’ We have these options [regarding contraception). Let’s see which one is best for you, for your body, for whatever health conditions you might have, or even for your partner.’ It should be based on your individual situation, not just about contraceptives in general’ (43-year-old; Spanish-speaking; 2 children; SLE for 18 years) ‘We need to have more conversations with women, especially those newly diagnosed with lupus. They need more preparation and support when it comes to getting pregnant’ (45-year-old; Spanish-speaking; 2 children; SLE for 25 years)
	Additional reproductive health information for patients improves confidence; physician going in depth with clinical details and conveying knowledge	‘What definitely helps the [reproductive health conversation], is if I have my own background info. So if I do my own research, so I'm not going in blindsided, and what is this, and I don't even know where the heck to start with’ (29-year-old; English-speaking; no children; SLE for 10 years) ‘Maybe having brochures or info sheets that they could give us, and setting up (…) an appointment like every six months or so specifically for that. Like, putting time aside for that’ (40-year-old; English-speaking; no children; SLE for 20 years) ‘When the resident sees me and I still have deeper questions, the [supervising] doctor comes in, and together they try to resolve my doubts. That gives me much more confidence to keep asking questions’ (34-year-old; Spanish-speaking; 2 children; SLE for 18 years) ‘Having a game plan in the even for when you do decide you want to try to get pregnant; I think that that would be really helpful information for women to know, even if they’re not trying to get pregnant, just so they’re aware. Like, is there a process or steps or a dialogue we need to have about it. It doesn’t mean you can’t. It’s just conversation that we need to have so that you’re prepared throughout the process’ (38-year-old; English-speaking; 1 child; SLE for 15 years)

Theme 1—barriers to reproductive health conversations

Participants noted substantial barriers to engaging in reproductive health conversations within the clinical setting. These barriers can be divided into SLE-specific, clinician-specific and patient-specific. All factors noted influenced the frequency and depth of reproductive conversations.

SLE disease activity emerged as a key barrier to engaging in reproductive health discussions. Participants reported that managing high SLE activity, medication adjustments and responding to participants’ concerns about their SLE treatments took precedence over other subjects, especially with the limited clinic constraints. Furthermore, a lack of patient–physician rapport often blunted participants’ ability to disclose sensitive information surrounding reproductive health. Participants frequently expressed a failure of their physician to see them outside of their diagnosis of SLE, often feeling overlooked for their desire to become a mother or discuss reliable contraception, even with high disease activity. A portion of one participant’s (25yo, English-speaking) comment that elucidates this clearly is her impression from her rheumatologist: You should be more concerned with, like staying alive rather than reproducing because it’s like, how are you—how are you going to have a family if you're not guaranteed to survive?. Participants also felt their rheumatologist deferred many of their concerns to primary care or OBGYN, leaving a gap in their knowledge. Notably, a clinician’s lack of Spanish fluency/language discordancy was not brought up as a barrier by most Spanish-speaking participants, many of whom had clinicians who only spoke English and used medical translation services.

A patient-specific factor included a lack of proactiveness or interest (whether related to pregnancy planning or contraception) as well as fear, on their own part. Some felt uncomfortable discussing pregnancy, leading to hesitation in bringing the issues to their rheumatologist. This was stressed more commonly by those who had never been pregnant. Fear of poor maternal–fetal outcomes halted all further conversations (rather than prompting more questions) more frequently for Spanish-speaking participants. Two participants noted that they were very uncertain about whether they ever wanted to attempt pregnancy, with one more strongly stating that she would have been annoyed had her rheumatologist frequently mentioned the topic of reproductive health or pregnancy planning simply because she is a woman of childbearing age. Five participants noted that some combination of the above factors contributed to reproductive conversations that did not occur until it was ‘too late’—that is, the participant was pregnant.

Theme 2—facilitators to reproductive health conversations

Conversely, many participants noted a range of facilitators that led to frequent and satisfactory reproductive health conversations. Similarly, facilitators largely fell into similar categories of SLE-specific, clinician-specific and patient-specific domains. Patient reported that they were more willing to discuss reproductive health when their SLE was well controlled, particularly during periods in which the frequency of flares or hospitalisations decreased, allowing for longer periods of being pain-free. Clinicians who facilitated reproductive health discussions portrayed four different themes: (1) provided individualised attention and had continuity with the patient; (2) were personable with a genuine desire to build rapport with the patient; (3) were knowledgeable or experienced, and if lacking data, were willing to speak to an attending physician (as was the case in the LAGMC teaching clinic) or follow-up with more data later; (4) were also female, although many participants noted having male physicians who still provided excellent reproductive health counselling. Having Spanish fluency or using telephone interpreting services were noted as a facilitator by approximately one-third of Spanish-speaking respondents; these issues were not stressed as the most important components. One key quote that represents the importance of the patient–physician relationship was from a 45-year-old Spanish-speaking participant: I’ve been lucky with most of my doctors. I’ve had doctors who genuinely care about me as a patient, and I appreciate their honesty.

Theme 3—areas of improvement or expectations for reproductive health conversations

Study participants had clear suggestions as to how they felt barriers could be addressed and facilitators could be optimised as they relate to reproductive health conversations. These suggestions centred mainly on the following concepts: providing thorough and balanced information regarding reproductive health for patients, touching on specific risks and statistical data on SLE and pregnancy, both in the clinic and to read outside of the clinic; comprehensively seeing the patient as an individual outside of a diagnosis, understanding their life goals and dreams; and, tactfully and gently readdressing these delicate conversation topics through the patient’s entire SLE journey, rather than only asking once. Some participants (n=8) also explicitly acknowledged that they, despite desiring pregnancy, did not bring the subject up due to fear, discomfort, lack of knowledge or simply because of perceiving themselves as not being proactive, and this was compounded by the clinician’s perceived reluctance to not speak about reproductive or sexual health. Perhaps one of the most striking comments from our study in this realm was as follows: [I]t makes people sometimes uncomfortable to talk about their sex life or talk about their birth control life. It isn’t a very comfortable topic as opposed to talk about your kidneys or talking about your heart. So I think it’s just one of those things, like getting comfortable with the uncomfortable, because it’s really important to know […] see, it’s even uncomfortable for me (38-year-old, English-speaking). Hence, reproductive health being integrated into a proactive, regular component of SLE care was a consistent area of improvement voiced for both the patient and clinician.

Discussion

Our study is the first of its kind to evaluate a population at high risk for poor maternal–fetal outcomes and with significant language/cultural discordancy with their treating physicians. Our Southern California population at LAGMC, including a subset of LupusLA individuals, is predominantly Hispanic, economically disadvantaged, and from a community that already sees relatively high rates of poor SLE outcomes and unplanned pregnancies.^{6 9 10} This cohort is a pivotal population in which to explore their experiences. The Hispanic population is one of the fastest-growing populations in the USA and is currently the largest subpopulation of both Los Angeles County and the state of California.¹¹

We propose, as gleaned from our data, that obtaining frequent, in-depth, patient-reported experiences and views regarding pregnancy and contraception is pivotal in augmenting the patient’s reproductive health journey as they navigate the nuanced world of SLE. Clinically important, crucial concerns from participants are reflected in our themes. Not surprisingly, these delicate conversations about reproductive health matters are not consistently a high priority for both patients and clinicians. Fundamentally and naturally, the burden of managing SLE disease activity appears to take precedence for this dyad. Other notable factors at play included establishing a strong rapport and relationship between patient and clinician. While female physicians largely facilitated this, several participants (n=7) spoke very highly of how well their reproductive health issues had been addressed by their male rheumatologist. Many of our interviewees stressed how crucial it was that their rheumatologist(s) displayed good ‘bedside manners’, such as genuine listening skills and comprehensive care for the patient—especially in the context of sensitive topics, but also for the patient as a whole person.

These facilitators and barriers were very consistent regardless of each participant’s education level, with some caveats. Compared with their English-speaking counterparts, Spanish-speaking participants expressed a greater degree of deference and trust in their rheumatologists, often noting less proactivity or engagement in reproductive health discussions until it was ‘too late’—that is, when they were pregnant. This dynamic appeared across the Spanish-speakers’ educational backgrounds, perhaps nuanced by cultural or linguistic factors that affect clinician–patient communication. Fear of adverse maternal or fetal outcomes emerged more frequently among Spanish-speaking participants as a barrier to further reproductive health discussions. We also noted a subtle trend in which never-pregnant participants more frequently acknowledged a lack of personal proactivity as a barrier to reproductive health conversations, although disease activity and clinician rapport remained the most prominent and salient barriers overall. Finally, two participants with unplanned pregnancies noted a complete lack of in-depth conversations about effective contraception, contributing to a poor level of health literacy; this included whether it was anatomically or physiologically possible to become pregnant with SLE or while taking certain medications. Clinicians should be aware that this primarily young female population may still be sexually active despite having high SLE disease activity, placing them at risk for both intended and unintended pregnancy.

The importance of reproductive health conversations has been described in the rheumatic disease literature, though qualitative data from participants with SLE remain quite limited. Data from diverse rheumatic disease (both SLE and non-SLE) populations emphasise themes remarkably similar to ours; however, barriers and facilitators are not chronicled to the same breadth and depth as we have delineated in our study. In particular, participants from other studies emphasised a desire to be seen beyond their disease and urge reproductive health conversations to be individualised, expanded on if possible, and revisited frequently over time—especially as life circumstances and disease activity change.¹²,¹⁴ Thus, the need for early, thorough, and patient-centred conversations on reproductive health and its intersection with rheumatic disease appears to be a near ubiquitous desire of many women with SLE and other chronic or autoimmune diseases, even in those people not immediately planning to become pregnant.

This study provides novel and vital qualitative insight into the reproductive health experiences and conversation preferences of a diverse population of Hispanic women with SLE within the USA. By incorporating both English-speaking and Spanish-speaking participants with a range of backgrounds from urban Los Angeles, we were able to consider the nuanced effects of education, access to care and different treating rheumatologists in shaping reproductive health discussions. The use of semistructured interviews facilitated open-ended exploration of patient experiences and the identification of emergent themes to guide future patient-centred interventions. To ensure rigour and trustworthiness, we emphasised credibility through engagement of researchers with a diverse background and encouraged participant feedback. We conveyed transferability by contextualising participants’ backgrounds, education, age since SLE diagnosis. Dependability was sustained by using the COREQ checklist, including multiple coders, and providing clear documentation of methods. Finally, confirmability was ensured when providing direct quotes and a systematic analytic approach.¹⁵

Despite the strengths described above, several limitations should be considered. As a qualitative study, our findings cannot be generalised to all individuals with SLE; instead, they are meant to provide deep insights into this population’s selected patient experiences and concerns. While purposive sampling was used to capture diverse perspectives, participants were recruited from a single geographic region, and findings may not fully represent Hispanic individuals with SLE in other settings. Additionally, the study relies on self-reported experiences, which introduces the potential for recall bias and social desirability bias, particularly on sensitive topics such as pregnancy planning and contraception use. The interviews were conducted virtually, which may have affected rapport-building and participant disclosure, although efforts were made to foster a comfortable interview environment. Finally, this study focuses solely on patient perspectives, and future research should integrate clinician viewpoints to better understand the barriers and facilitators of effective reproductive health counselling in this population.

We have created a summary table with some practical thoughts as a guide for clinicians to approach these nuanced concepts with patients based on our data and prior literature (table 3). We argue that our findings suggest the need for structured interventions (perhaps triggered by EHR alerts) at both the provider and patient levels. We speculate that clinicians caring for patients with lupus could be presented with training resources, focused on how and when to address reproductive health concerns. Likewise, patients should be encouraged and equipped to initiate these discussions prospectively. The development of tailored educational modules and their implementation—one designed for physicians and one for patients—represents a practical next step supported by both our data and prior literature. These data from an urban US Hispanic cohort highlight opportunities to support more comprehensive care in the intersection of SLE and pregnancy.

Table 3. Practical recommendations for maximising reproductive health conversations for women with SLE.

Recommendation	Rationale	Implementation tips
Initiate reproductive health conversations early and revisit regularly	Participants often reported that reproductive health was only discussed reactively or not at all, especially when they were already pregnant. Many expressed a desire for these conversations to begin near diagnosis and evolve with disease status and life stage.	Integrate thorough reproductive health screening into new patient visits and annual reviews, regardless of patient age or sexual activity. Consider EMR prompts or consistent questions to normalise the conversation.
Focus on genuine clinician-patient rapport through empathy and individualised care	A strong relationship with the clinician (including warmth, continuity, and personalisation) was consistently described as the most critical facilitator. Female gender helped but was not essential; honesty, kindness and time were highly valued.	Prioritise continuity of care and take time to ask about patient goals beyond disease control—this could include reproductive but also related to career or education. Reflect back what you hear to reinforce that you see the patient as a whole person, not just as a disease.
Provide balanced, detailed education and decision aids	Participants wanted more details on contraception options, medication risks, and pregnancy planning—even if they weren’t ready to become pregnant. Confidence grew when clinicians acknowledged knowledge gaps but followed up.	Offer handouts, brochures, or QR-coded info sheets (English and Spanish preferred, depending on target demographics). Frame discussions with both pros and cons. Consider brief, dedicated visits for reproductive counselling or structured counselling checklists. Probe with open-ended questions regarding patients’ concerns regarding pregnancy and medications both for the immediate and distant future.
Create systems for cross-specialty care	Several participants felt ‘bounced’ between rheumatology and OB/GYN without clear leadership for their reproductive health counselling. Others noted the value of frequent cross-communication with OB/GYN.	Use internal messaging tools or care plans to align with OB/GYN. Establish clear referral pathways and make reproductive planning a standing agenda item in multidisciplinary conferences when possible.

EMR, electronic medical record; OB/GYN, obstetrics and gynecology.

Data availability statement

Data are available upon reasonable request.