title: Judging a Book by its Cover: A Mixed-Methods Exploration of Perceptions of Inflammatory Bowel Disease
Creators: name: Edwards, Elia-Jade
Publisher: name: Griffith University
Year: 2020
Subjects: subject: Inflammatory Bowel Diseases

description: Inflammatory Bowel Diseases (IBD) are chronic gastrointestinal conditions with fluctuating bowel symptoms. Adjustment to IBD can be impacted by unhelpful behavioural and cognitive factors (e.g., negative illness perceptions). Additionally, individuals with IBD anticipate and report negative reactions from the public. Therefore, views of the public can further impact those with IBD. This program of research had three over-arching aims: (1) to examine the anticipated societal perceptions of those with IBD; (2) to investigate whether anticipating negative societal perceptions contributes to poorer psychological and physical health, and overall quality of life; and, (3) to explore public awareness and perceptions of IBD. These aims were met by conducting four studies. Study 1: A systematic review of the literature investigating illness perceptions, perceived stigmatisation, and negative emotional reactions toward IBD in those with and without the condition, and the impact of these views on participant outcomes (e.g., psychological health and quality of life) was conducted in Study 1. Article titles and abstracts were screened by two reviewers, and one reviewer extracted data from 82 full-text articles. Key findings of the review were: (1) negative illness perceptions are associated with poorer well-being; (2) individuals with IBD frequently anticipate stigma; (3) fear about disease-related flares occurring in public was the most common emotion reported; and (4) the public appear to direct little enacted stigma towards IBD. Clinical implications include targeting unhelpful perceptions and expectations in treatment. Study 2: Anticipated societal views of IBD (i.e., how those with IBD view public perceptions of the condition) and their impact on participant well-being were qualitatively explored in Study 2. Semi-structured, individual interviews were iii completed with twenty individuals with IBD (Mage = 32.8, SD = 10.54), and thematic analysis was completed to identify common themes. Four overall themes were identified: (1) poor public awareness of the disease; (2) difficulties with disclosure; (3) reactions of others; and, (4) illness-related self-exclusion. Overall, participants perceived that their physical health and quality of life are not impacted by their anticipated views of the public. On the other hand, some participants indicated that their psychological health is affected by their anticipated societal views. These findings translate into social and clinical implications, specifically, public awareness can be increased using campaigns, and concerns about public perceptions can be routinely assessed in clinical settings. Study 3: Study 3 quantitatively investigated the link between individuals’ self-perceptions and their anticipated societal views of IBD, in those with the condition. The impacts of anticipated societal views on well-being was also explored. Individuals with IBD completed an online survey (N = 132; Mage = 32.17, SD = 10.41). Key results of this study were: (1) negative self-perceptions significantly predicted views that the public perceives IBD negatively; (2) anticipating negative public perceptions of IBD significantly contributed to poorer psychological and physical health. Findings indicate a possible mechanism for the formation of meta-perceptions of IBD, via that of self-perceptions. Implications for clinical practice include routinely targeting both self-perceptions and expectations about public views of IBD in assessment and treatment. Study 4: The final study explored perceptions of IBD in an Australian community sample utilising an experimental design. Participants (N = 468; M = 38.42, SD = 14.71) completed a series of vignettes depicting a hypothetical individual with IBD exhibiting symptoms in a workplace (i.e., bathroom use, flatulence, and faecal incontinence). Participants were randomly allocated to either the disclosure (i.e., iv symptoms were attributed to IBD) or non-disclosure condition. Participants completed affective and avoidance ratings of the IBD symptoms, along with measures of disgust sensitivity, knowledge and familiarity with IBD, and stigmatising attitudes towards IBD. Key findings indicated that: (1) there was greater avoidance of IBD in the non-disclosure condition (i.e., disease-label was not provided), than the disclosure condition, and in the faecal incontinence condition; (2) participants were more willing to have ‘brief’ contact with the target with IBD, in the disclosure condition; (3) those unfamiliar with IBD reported higher stigmatising attitudes and greater avoidance of IBD, in the disclosure condition; (4) higher disgust sensitivity was linked with greater avoidance of IBD, when no disease-label was provided (i.e., non-disclosure condition). Overall, findings suggest that disclosure and increased familiarity are linked with lower public stigmatisation and avoidance of IBD. This highlights the benefits of utilising campaigns to increase public awareness of IBD and of collaboratively discussing situations for disclosure with individuals with IBD in clinical settings.