N19 Fear of not being accepted: a synthesis of qualitative experiences of children and adolescents living with IBD

Abstract

Background There is an increasing number of paediatric and adolescent patients being diagnosed with Inflammatory Bowel Disease (IBD) 1. Being diagnosed at an early age can have a detrimental effect on a child’s development, so the need for support is vital. Adult experiences of living with IBD are known 2 , but very little is known about paediatric experiences. This literature review aimed to identify the paediatric and adolescent experiences of living with IBD and explore how IBD impacts their life. Methods A search was performed on following databases: Medline, CINAHL, and British Nursing Index. The inclusion criteria were: IBD, age under 18 years old, English language, primary qualitative research, and a publication date between 2016-2021. Out of the 43 papers identified, only three were selected as they met the inclusion/exclusion criteria. A qualitative synthesis of evidence was conducted, and the data was reinterpreted 3. Results Among the three papers, there was a dominant theme about the ‘Fear of not being accepted'. This overarching theme revolved around peer acceptance, and included two main themes: ‘Fear of disclosure' and 'How do I fit in?', as patients did not want to disclose their condition and expressed their desire to be viewed as normal. Throughout their experiences, children and adolescents expressed embarrassment as the primary feeling since living with IBD. Having IBD as a child or adolescent could adversely affect their psycho-social development, especially during their sexual development, affecting their romantic relationships and interactions with other people. The fear of not being accepted led participants to feel unattractive and apprehensive when forming new relationships. Conclusion It is imperative for children and adolescents to feel accepted, to feel comfortable disclosing their illness, and to feel equal to their peers. Children and adolescents face a variety of psycho- socio- emotional challenges living with IBD. Due to the limited number of studies that have explored the challenges that paediatrics and adolescents encounter, the need for more evidence is crucial. More evidence on children experiences of living with IBD would help healthcare professionals understand the impact of illness, and develop strategies to support children and adolescents living with IBD to minimise the fear of social stigma and rejection. 1. Kaplan GG. The global burden of IBD: from 2015 to 2025. Nat Rev Gastroenterol Hepatol. 2015;12(12). 2. Fourie S, Jackson D, Aveyard H. Living with Inflammatory Bowel Disease: A review of qualitative research studies. Int J Nurs Stud. 2018;87:149-156. 3. Thomas J ;Harden A. Methods for the Thematic Synthesis of Qualitativeresearch in Sistematic Reviews.; 2007.