Experiences of Adolescents Who Are Living with Inflammatory Bowel Disease

Abstract

Background: Inflammatory bowel disease (IBD) is an incurable, chronic, gastrointestinal condition characterised by recurrent bouts of debilitating abdominal pain and diarrhoea. There is little information on how adolescents with paediatric IBD (PIBD) face the challenges of living with the disease and their perceptions of their journeys towards adulthood. This paper reports the findings of a qualitative study on these issues in adolescents living with PIBD in South Australia. Methods: Potential study participants, aged between 12 and 17 years were selected by a treating clinician from the PIBD clinic of a major referral hospital, to achieve gender balance and some diversity in the PIBD stage and severity. In-depth face-to-face interviews focused on participants’ perceptions about living with IBD during adolescence and for the future. Interviews were recorded, transcribed and analyzed thematically. Results: Nine adolescents aged 15-17 years consented to participate in the study. Using an overarching theme of ‘the journey’, three major temporal themes were apparent, namely, ‘Reactions at time of diagnosis’, ‘Learning to cope with IBD’ and ‘Acceptance and the future with IBD’. This study demonstrates that, even with optimum support, the pathways towards adulthood were often turbulent and challenging for these young people due to the unpredictability of painful and/or embarrassing physical symptoms. They nevertheless developed strategies which enabled them to accept and cope with a new ‘normality’ with positivity and determination. More research is warranted to investigate the skills required to navigate this path successfully. Keywords: adolescent, coping, Crohn’s disease, inflammatory bowel disease, journey, ulcerative colitis