To tell or not to tell: A qualitative interview study on disclosure decisions among children with inflammatory bowel disease

“It's not who I am”: Children's experiences of growing up with a long‐term condition in England, Australia, and New Zealand

“…Despite their resilience and their ability to incorporate the condition within their self-concept, there was a sense of compartmentalization at times; friends they talked to about the condition and friends they did not share with, places that they went to as a "normal" child and places they went to because of the condition, things that happened because of the condition that did not happen for their peers. This compartmentalization and nondisclosure of their condition is also evident in findings from other studies of children and adolescents (Barned, Stinzi, Mack, & O'Doherty, 2016;Kaushansky et al, 2017).…”

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

“…Participants used information control as a strategy for identity management. Concealment of illness has been previously identified (Barned et al, ; Benson et al, ; Benson et al, ; Kaushansky et al, ; Venning et al, ); however, research has highlighted how non‐disclosure may exclude young people from peer support and be associated with poor adjustment, distress, social isolation, and poor self‐image (Gerson et al, ; Instone, ; Tong et al, ). Participants' transition to openness was prompted not only in part from choice but also by the need to justify and explain school absences and visible symptoms.…”

“…Young people may reframe their sense of normality by using downward social comparison to define themselves as fortunate as a means of adjusting to a sense of difference (Jamieson et al, ; Monaghan & Gabe, , ). However, the most commonly cited strategy for managing difference appears to be concealment with studies describing how (where possible) young people conceal their illness (Barned, Stinzi, Mack, & O'Doherty, ; Benson, Lambert, Gallagher, Shahwan, & Austin, ; Taylor et al, ; Venning, Eliott, Wilson, & Kettler, ).…”

Understanding Experiences of Youth Growing Up with Anorectal Malformation or Hirschsprung's Disease to Inform Transition Care: A Qualitative In-Depth Interview Study

“…This is mirrored in studies in other disease populations, both young and old. [26][27][28] A distinct strength of our study was that we had a clear coding process with verification of themes from a variety of perspectives of researchers with different backgrounds (clinical, social, theoretical, and psychological). The participants came from diverse socioeconomic, cultural, and religious backgrounds representative of patients with these conditions.…”