“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

Abstract

Inflammatory Bowel Disease (IBD) describes a group of conditions that includes Crohn’s disease and ulcerative colitis. Unlike some chronic conditions, to a greater or lesser extent, IBD is hidden from or invisible to others which enables concealment of the condition, especially when stigma is associated with the condition. Concealment or nondisclosure allows a means of identity management. Disclosure of a chronic condition is not a single event, and it is dependent on many factors. There is little literature that specifically addresses stigma and/or disclosure in relation to children and young people with IBD. An in-depth qualitative study was undertaken, framed by Interpretive Description and using interviews, friendship maps, and photographs within a participatory framework. Public and patient involvement and engagement (PPIE) was undertaken throughout (inception to dissemination) the study. Young people aged 14-25 years with IBD who had participated in the survey phase of the larger study self-selected to participate in interviews that focused broadly on friendship and feelings of social connectedness. Data were analysed using an iterative, interpretive approach. Preliminary themes were developed and these were explored further, and then tentative theoretical connections about friendship were developed. One superordinate theme focused on disclosure. Thirty-one young people (16 males, 15 females, mean age 18.7 years; 24 Crohn’s, 7 colitis) participated in the interviews (of these, five created friendship maps and six utilised photographs). Three discrete, but interlinked, themes were generated, revealing young people’s experiences of disclosure: to tell or not to tell; controlling the flow: the who, when, what, and how of telling; and reactions and responses to telling: anticipated and actual. Decisions about telling friends about having IBD are challenging for many young people. Having control over disclosure is not always possible, and the potential consequences can feel risky. However, most young people had positive experiences of disclosure and gained support from friends and romantic partners. Most young people downplayed the seriousness of their IBD, revealing some facets of their condition, aiming to sustain their self-identity. Only one young person had been given professional support to disclose. Provision of support and opportunities to discuss whether, when, who, and how to tell friends and what the risks and benefits may be is something that could be woven into an ongoing and wider person-centred dialogue between young people and health professionals within routine clinic visits.

Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study

“…Some young people in the current study concealed their IBD from friends, while others downplayed the seriousness of their condition. Limiting disclosure and explanations about the “gory detail” are aimed at both protecting their friends and minimising the risk of rejection [ 17 ], although a consequence of this could be limiting access to the support that close friends can offer. Friends with a better understanding of IBD and its implications could help sustain social support and potentially mitigate some of the impact of living with IBD.…”

“…This connects to the work of Flynn et al [ 44 ] who found young people with a supportive network are better able to form reliable and compassionate friendships. Young people in our study described certain friendships as being closer and more meaningful since disclosure [ 17 ], possibly reflecting a type of posttraumatic growth, sometimes experienced by young people after trauma exposure [ 70 ].…”

“…The unpredictability of the course of IBD and the embarrassing nature of the symptoms can result in uncomfortable social experiences and constrained social relationships. Young people may conceal their disease [ 17 ] from other people in an effort to reduce stigma and people's negative perceptions [ 18 ] and avoid rejection by their peers [ 4 ]. Having to take time away from their peer group due to symptoms and hospitalisation can heighten loneliness [ 19 , 20 ] and the feeling of missing out on life [ 2 ].…”

Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK: the role of disease severity, age of onset, and embarrassment of the condition

“…Individuals with IBD experience potential challenges to their psychological well-being: the course of the disease is unpredictable, the treatment and management regimes frustrating. Patients talk about the symptoms of the disease often being embarrassing and socially limiting [3,11], which makes telling others about their condition difficult [12,13]. While there are few studies with adolescents and young adults (AYA) with IBD, those studies show high rates of anxiety and depression among that population [14].…”

“…Fears of abdominal pain, bowel noises, faecal incontinence, and/or a bowel urgency in public mean many people with IBD withdraw from social interactions because they feel ashamed. IBD nondisclosure due to embarrassment is also a reported problem in the literature [13,26], but, because concealment of any condition is associated with reduced engagement with others [28], feelings of disconnection and negative affect are likely to be high among those with IBD because of social problems as much as they are to do with disease severity. Indeed, recent work by Roberts, Gamwell et al [29] showed that difficulty communicating about their illness to others was associated with thwarted belonging that was also linked to higher depression.…”