'We need to make "shit" sexy': a qualitative study exploring treatment adherence in adolescents with inflammatory bowel disease

Abstract

Background: Adolescents with inflammatory bowel disease (IBD) are faced with the complexities of acquiring self-management behaviours at a time when they are also navigating developmental challenges associated with adolescence. To date, limited treatment adherence interventions exist to support adolescents with IBD. Aim: To explore the experience and support needs of adolescents with IBD to facilitate optimum treatment adherence. Method: Thirty-three semi-structured interviews were conducted with adolescents with IBD (n = 12), parents of adolescents with IBD (n = 13) and healthcare professionals who support adolescents with IBD (n = 8). Adolescents and parents completed a creative task to prioritise adherence barriers and adherence intervention strategies. Results: The analysis generated three key themes: (1) striving for normality, (2) taking responsibility for IBD management and (3) seeking supportive environments. Living with IBD was often perceived as living a limited life, as adolescents had to manage their symptoms, which resulted in feelings of difference and stigmatisation. To manage their IBD, adolescents were required to develop treatment routines and communicate their health needs. Parents wanted to protect their child from the burden of living with IBD. Synthesis of findings with a creative mapping task generated seven priorities for intervention. Discussion: Adolescents discussed the complexity behind their adherence behaviours and the formation of treatment perceptions. The adherence barriers identified within this research can be utilised to develop a treatment adherence intervention that is effective for adolescents with IBD.