Experiencing Crohn's disease in young adults : self-perception, illness perception and psychosocial adjustment ; Vécu de la maladie de Crohn chez le jeune adulte : perception de soi, de la maladie et ajustement psychosocial

Context: Crohn's disease is a chronic inflammatory bowel disease with particularly disabling symptoms. The literature reports physical, emotional and social repercussions, and a few qualitative studies report feelings of difference and identity difficulties. Although these aspects are important concerns in early adulthood, and although Crohn's disease often starts at a young age, few studies have focused on this sensitive developmental period. A multidimensional concept such as self-perception, as theorized by Susan Harter, would allow an assessment of feelings of adequacy and competence in different meaningful domains. This study aimed to explore young adults' experiences of being diagnosed with Crohn's disease. The first objective was to describe their self-perception, illness perception, the processes involved in their psychosocial adjustment, and then assess whether there was a difference according to time since diagnosis and age. Another aim was to identify the clinical and psychosocial variables associated with dimensions of self-perception. The final objective was to retrace, through interviews, their journey since diagnosis. Method: The study is cross-sectional and rely on a mixed-methods design. Participants were young adults (aged between 18-35 years old) with Crohn's disease, recruited through associations, social network communities and gastroenterology services. Fifty-two people completed an online questionnaire assessing their self-perception, illness perception, coping strategies and perceived social support. Nineteen semi-structured interviews were conducted via video-conference, and a thematic analysis was carried out with double coding. Results: Self-perception scores are low overall, with self-esteem, perception of physical appearance and romantic relationships being among the most affected domains. Young adults with Crohn's disease also had significantly lower scores compared to the general population. However, the time since diagnosis and age did not appear to affect self-perception scores. ...