*presented under previous name: Sally J E Skinner
Purpose: Chronic disease such as Inflammatory Bowel Disease (IBD) diagnosed in childhood will affect a young person’s life and maturation. Few studies acknowledge how young people live beyond the confines of this illness. Therefore we investigated how young people deal with adolescent life issues alongside the demands of IBD, such as peer relationships, boy/girlfriends, education and work experience, and what they would like to tell others in that situation.
Methods: Sixteen adults aged 20-25 years, diagnosed with IBD before age 18 with combined 116 years experience of the illness, were interviewed using a semi-structured questionnaire. Participants related, to an independent interviewer (SS), their experiences of growing up with IBD, providing examples of adolescent life issues.
Results: All participants related difficulties communicating disease-related matters to prospective sexual partners and 7 had begun to see their selves and bodies as separate entities. All spoke of negative feelings about physical changes in their bodies caused by IBD and steroid treatment. Half had concerns about taking medication for long periods of time, and 12 reported anxiety of possibilities of relapse at significant times (family holidays, school exams). On recall, 13 were dissatisfied with information available to them at diagnosis. However 6 participants described the value of attending non-clinical support groups for young people, as this facilitated discussion of symptom and social management.
Conclusions: In addition to reviewing information sources and developing support groups, these data suggest that a prospective investigation is needed to investigate how young people live with IBD, to promote awareness of the complexities of communication and adjustment in areas outside of the clinical setting.