Qualitative exploration of the specific sexual and relational support needs of young people with Inflammatory Bowel Disease: co-design of an evidence-based, prototype intervention

Background: Inflammatory Bowel Disease (IBD) is a painful and debilitating long-term condition with no known cure. The intersection of physical symptoms and psychological distress means that people with IBD are significantly more likely to experience sexual dysfunction than healthy cohorts. Symptoms like abdominal pain, fatigue, and diarrhoea can cause discomfort during sexual activity, affecting libido and sexual performance. Some medications used to manage IBD cause sexual dysfunction, impacting relationships and self-esteem. People with IBD often struggle with body image due to weight fluctuations, surgery scars, or ostomy bags leading to increased anxiety/depression in a population already suffering from a higher prevalence of poor mental health. Sexual functioning and wellbeing are fundamental to quality of life yet support for young people with IBD is not routinely provided. This unmet need represents a care inequity, risking harm to immediate wellbeing and long-term developmental outcomes. To create effective interventions for supporting sexual wellbeing in young people with IBD, we first need to understand their specific support needs. Aims/objectives: To co-design an acceptable, evidence-based prototype intervention that meets the specific sexual and relational support needs of young people with IBD (aged 15-24). Objectives (1) Co-define sexual health and wellbeing challenges faced by young people with IBD. (2) Co-design a detailed, prototype intervention (content and format) with young people with IBD that meets their specific sexual and relational support needs. (3) Co-refine the prototype intervention following feedback from young people with IBD, parents and health professionals. Methods: The project comprises four work packages, with patient, parent and professional involvement embedded throughout. Intervention development follows the Medical Research Council Framework. WP1 Systematic review of existing research on sexual health, functioning and relational wellbeing in young people with IBD. WP2 Co-define: In-depth qualitative research with 20 young people with IBD (age 15-24) and 10 IBD health professionals exploring factors that influence sexual and relational wellbeing, in the context of living with IBD. Recruitment will be monitored to ensure variation in participant gender, age, ethnicity, sexuality, condition type. Data will be analysed using a Thematic Framework approach, with co-analysis by members of the PPIE groups. WP3 Co-design: Following theoretical modelling, drawing together existing and new evidence (WPs 1&2); we will work with young people with IBD to co-design a prototype intervention (content, format, delivery mechanisms) for supporting sexual and relational wellbeing. WP4 Co-refine: Our prototype intervention will be presented to the Crohn s and Colitis UK Young Adult Advisory Group for detailed feedback and refinement. Timelines: Total 18 months. WP1: months 1-8; WP2: months 1-10; WP3: months 9-15; WP4: months 14-16; Writeup & dissemination: months 16-18 Anticipated impact: This project paves the way for producing a much needed, new intervention that addresses the specific sexual and relational support needs of young people with IBD. It addresses a current care inequity and poor wellbeing outcomes. Dissemination: Our main output is a refined prototype intervention (content and format) ready for production and evaluation in subsequent funded studies. Findings will be disseminated via UK charities, national conferences and publications in open-access journals.