Abstract
Abstract Background Inflammatory bowel disease (IBD) affects every aspect of one’s life, yet no routine assessment for the impact on sexuality is made. Our aim was to explore patients’ perspective on healthcare professionals (HCPs) addressing sexuality/sexual well-being concerns. Methods This was a qualitative narrative study. Inclusion criteria were any sexual orientation and with known IBD for longer than 18 months. Data were collected via semi structured interviews and anonymous narrative accounts submitted via Google Forms. Thematic analysis was used to analyse the data. Results Fourteen adults, 4 male and 10 female, took part. Eleven participants were from the UK, one from the USA of America and one for South Africa. The following main themes and subthemes were identified: I cannot imagine talking about my sex life (a difficult topic; there is not enough time), Those who talked about sex, talked badly (nobody volunteered information; badly handled conversations), Still living whilst unwell (sex is an important part of my life; sex issues break down relationships, medicalised body), IBD ruined my sex life (feeling unattractive; feelings of shame and embarrassment), I feel unheard (HCPs don’t open the discussion; sex not taken seriously), I’m a person, not my IBD (holistic approach to care; time, space and ways to talk about sex). The findings reflect the importance of sexual well-being to those living with IBD, the experiences of such conversations, barriers to conversations with HCPs on sexual well-being, and suggestions on how HCPs should address their unmet needs. The importance of discussing intimacy and sexuality was emphasised, as participants felt their sexual well-being was considerably affected by IBD. The majority reported that HCPs did not initiate discussions on sexual well-being, nor did they understand the impact of IBD on sexual well-being, with a distinct accent on the perceived lack of a holistic approach to their care. Therefore, participants made suggestions for practice, such as provision of information related to sexual well-being in the form of leaflets, additionally to HCPs raising the issue. Conclusion Our findings indicate that communicating on sexuality/sexual well-being is a problematic area of IBD care. HCPs must be cognisant of the sexual well-being concerns and needs of those living with IBD, who want this topic discussed routinely, as part of a holistic approach to their clinical care.
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