Exploring Needs and Barriers to Pregnancy Counselling in Women with Systemic Lupus Erythematosus: Insights for Developing Interventional Strategies

Introduction Many women with systemic lupus erythematosus (SLE) still face unmet needs in pregnancy counselling, which can influence their relationships, reproductive choices, and overall mental health. We aimed to assess pregnancy counselling needs in women with SLE, identify clinical and psychosocial barriers and facilitators, and explore strategies to inform the development of targeted interventions to improve counselling and support. Methods We conducted a focus group study that included women of reproductive age with SLE and healthcare professionals. Participants were recruited through purposive sampling from a single healthcare network. We analyzed the data thematically using grounded theory. Results Twenty-four women with SLE and 14 healthcare professionals participated in 11 unique focus groups that lasted 1 hour each. We identified three overarching themes among women with SLE regarding pregnancy planning: anxiety, confusion, and frustration. Similarly, three themes emerged among healthcare providers: timing, communication, and resources. Participants suggested potential strategies to address these barriers, which included facilitating access to psychosocial support during pregnancy, developing educational tools tailored to women with SLE, providing a checklist of questions for medical encounters, and implementing a multi-disciplinary approach, such as reproductive rheumatology clinics, when caring for women with SLE. Discussion Consistent with prior studies, women with SLE reported anxiety, unclear information, and inconsistent counselling, while our findings add the integrated perspectives of SLE patients at different reproductive stages and clinicians. This revealed important communication gaps and the need for clearer, earlier, and more patient-centered reproductive guidance. Limitations include recruitment from one province and a predominantly well-educated sample. Future research should evaluate multidisciplinary, educational, and psychosocial interventions to improve counselling and support. Conclusion This study highlights persistent challenges in pregnancy counselling for women with SLE and identifies shared gaps across patients and clinicians. Our findings underscore the need for more coordinated, multidisciplinary reproductive care and provide practical strategies to guide future improvements in SLE pregnancy outcomes.