Experiences of Acceptance and Adjustment for People Living With Inflammatory Bowel Disease

Abstract

BACKGROUND: Inflammatory Bowel Disease (IBD) is an incurable, chronic condition that is known to impact the physical and psychosocial well-being of those living with it. Evidence consistently demonstrates there is an association between increased disease activity and psychological distress. Moreover, psychological concerns affect people’s ability to cope with the illness. Little research has examined the lived experiences of people with IBD and how they make sense of adjusting to their condition. The aim of this study was to offer a nuanced and detailed perspective about how people experience living with, accepting, and adjusting to IBD, with the view to provide evidence to complement the qualitative repertoire of research, and broaden our knowledge about adjustment for people with IBD. METHOD: A qualitative approach using semi-structured interviews was employed to examine the experiences of six adults living with IBD (three with Crohn’s and three with Ulcerative Colitis). A purposive sample of four females and two males were included in the study, aged between 26 and 82 years. Interviews with the participants were audio recorded, transcribed and analysed using Interpretative Phenomenological Analysis (IPA). RESULTS: Two superordinate themes emerged from the analysis: Lack of control: IBD grabs mind and body and Separation vs. Integration: An ambivalent relationship with IBD, encapsulated by a master theme of ‘Positioning Self: In relation to self, body and IBD’. Superordinate themes and associated themes are presented and illuminated with verbatim extracts from the participants’ accounts. The findings reveal that acceptance and adjustment is inextricably linked to notions of self and identity. CONCLUSION: People experience IBD as a threat to identity, thus people manage and adjust to this by actively positioning themselves as separate to illness, or integrating it within themselves. For people living with IBD, the relapsing and remitting nature of IBD presents sufferers with periodic challenges that shape how they relate and respond to threats, difficult situations and experiences. In view of this, they adjust time and time again, and position themselves differently according to how they experience their illness. These findings are discussed in relation to clinical implications and suggestions for further research.