Managing stigma and disclosure of inflammatory bowel diseases for a good life with the disease. An interpretative phenomenological analysis study

Abstract

Objectives

The aim of this study is to answer two research questions: 1. How do people with inflammatory bowel disease (IBD) disclose their condition to others? 2. How do non-affected people respond to disclosure of IBD? The findings complement our previous research with people suffering from IBD on their concepts of a ‘good life’.

Methods

We conducted 10 qualitative interviews with individuals with IBD and analyzed them with interpretative phenomenological analysis.

Results

Participants with IBD reported that non-affected people appear to have only marginal knowledge about this disease and they tend to trivialize the illness. They described stigmatizing responses which make them experience shame or lack of dignity. To deal with difficult responses, participants sometimes try to avoid embarrassing situations and limit the information they give others about their illness. Sometimes they break social relationships. They disclose their illness for strategic reasons, for example to generate understanding from their employers. But they also experience understanding from others after revealing their illness.

Discussion

Our study expands the evidence on experiences of stigma and the difficulties regarding disclosure in IBD, but also on the positive experiences of disclosure. Future research should focus on developing and evaluating appropriate methods for counseling on stigma and disclosure.