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Navigating Sensitive Conversations: Patient Experiences of Sexuality Discussions in IBD Care: A Qualitative Study
Hege Ingrid Sydnes1, Marte Langberg Vangen1, Kjersti Alsaker2,3
1Department of Gastroenterology, Akershus University Hospital, Sykehusveien 25, N-1478 Lørenskog, Norway.
None:
Background: Inflammatory bowel disease (IBD) is a chronic condition characterized by persistent inflammation of the gastrointestinal tract. Sexual dysfunction is a common but often overlooked consequence of IBD, affecting approximately half of women and one-third of men living with the disease. Despite the significant role of sexuality in overall quality of life, discussions about sexuality frequently remain absent from clinical encounters between patients and healthcare providers. Purpose: This study aims to deepen understanding of how individuals with inflammatory bowel disease experience-and wish to approach-conversations about sexuality with healthcare professionals in specialist clinical settings. Method: A descriptive and exploratory qualitative design was employed, using semi-structured interviews with 12 individuals diagnosed with IBD, recruited from two outpatient clinics in Norway. The data were analysed using reflexive thematic analysis. Results: Our analysis generated three main themes: (1) sexuality as an overlooked dimension of IBD care, (2) unmet informational needs related to sexuality, and (3) relational prerequisites for discussing sexuality. Sexuality was seldom addressed in participants' healthcare encounters. Only a minority had been invited into such discussions, and those experiences were typically brief. Some participants preferred not to engage in conversations about sexuality. Reported barriers included awkwardness, embarrassment, stigma, discomfort, and concerns about privacy. Participants also described limited access to reliable information and perceived some healthcare providers as insufficiently knowledgeable or dismissive when the topic was raised. Feeling safe, trusting the provider, and having an established therapeutic relationship were identified as essential conditions for discussing sexuality. Conclusions: Sexuality remains largely unaddressed in clinical encounters with individuals living with IBD. The findings reveal a gap between patients' information needs and the support currently provided. Strengthening healthcare providers' competence and ensuring access to appropriate resources may help create the trust and safety required for meaningful conversations about sexuality.
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