Perceptions of IBD within patient and community samples: a systematic review

Objective: Inflammatory bowel disease (IBD) is a chronic, gastrointestinal condition that involves a range of debilitating bowel symptoms. Adjustment to living with IBD can be negatively impacted by maladaptive cognitive and behavioural factors (e.g. negative illness representations and repressing emotions). Patient samples also report negative reactions from the general public and such perceptions can further negatively impact people living with IBD. Therefore, we aimed to systematically review literature investigating the illness perceptions, perceived stigmatisation, and negative emotional reactions toward IBD within patient and community samples. We also aimed to review how these factors impact those living with IBD (i.e. adjustment, psychological health). Design: A range of databases (e.g. Psych INFO, PubMed) were searched over two years. One reviewer individually screened titles and abstracts using the specified inclusion criteria, and this process was repeated by a second reviewer. Subsequently, the full text articles were screened and data were extracted for the 82 articles that satisfied the inclusion criteria. Following data extraction, a narrative synthesis was conducted.Results: The review of 82 studies suggested that negative illness perceptions are linked to poorer psychosocial outcomes, that patient samples frequently anticipate stigmatisation, fear relating to bowel accidents was the most common emotion reported, and that the general public direct little enacted stigma towards IBD.Conclusion: For people living with IBD: (i) poorer psychological adjustment was reported by those who held more negative perceptions and reactions toward their illness; and (ii) their concerns regarding public perceptions of IBD warrants further empirical attention. Results emphasise the importance of targeting perceptions, and facilitating education and adaptive responding during treatment.