N20 The added shame of IBD: experiences of people from various ethnic backgrounds discussing sexual wellbeing in clinical settings.
Fourie, S.(1)*;Czuber-Dochan, W.(2);Norton, C.(2);
(1)University of Oxford, Radcliffe Department of Medicine, Oxford, United Kingdom;(2)King's College London, Florence Nightingale Faculty of Nursing- Midwifery and Palliative Care, London, United Kingdom;
Background
Inflammatory bowel disease (IBD) causes significant difficulties in peoples’ lives, and negatively affects their sexual wellbeing (SWB). Evidence from diverse population is paramount when we seek equality, diversity and inclusion in healthcare.1 The evidence on patient SWB experience in the context of IBD comes from predominantly white participants.2 This study explored experiences from people with a diverse ethnic background, and cultural and religious influences on discussing SWB in a clinical setting.
Methods
Qualitative study. Data were collected via interviews and anonymous surveys and analysed using thematic analysis.3
Results
A total of 26 participants from across the world responded (M/F=10/16). Demographic data revealed that 42.3% were South Asian, 23% mixed race and 34.7 % had other backgrounds. Of the 26 participants, 61.5% were single, 35% had no religious beliefs, 30% were Hindu and 30% Muslim. Concerns related to sexual wellbeing were reported by 96% of participants, and all wanted the topic to be included in their routine care. The overarching theme was identified as The added shame, which referred to the stigma of ill health in their own culture. Two sub themes were Choosing to be single, as many avoided relationships due to cultural beliefs related to favouring those in good health and Feeling less alone. The second theme represented the 34% who reported discussing the topic with their clinical team and being the ones who initiated the conversation. They would have felt less alone if they had more information and understanding from their community and care providers. Some felt afraid of being judged due to the close-knit community which many of their clinicians were also part of, as they perceived being seen as promiscuous if they raised their concerns. Religion was not found to be a major barrier to discussions about SWB. A few mentioned that being single may be a reason why their clinicians did not initiate the conversation about SWB, as sex outside marriage is considered culturally and religiously unacceptable.
Conclusion
: Experiences of SWB of participants from various ethnic backgrounds did not differ greatly from those of the general IBD population,2 although added pressures were found rooted in cultural upbringing. A heightened sense of privacy and secrecy prevailed, possibly explaining the percentage of participants that reported to be single. Encouraging patient advocates from various ethnic backgrounds to raise awareness of the condition in their communities could help make improved communication possible.