Exploring the families’ experience of adolescents diagnosed with an invisible illness

Abstract

Inflammatory Bowel Disease is an umbrella term for invisible illnesses (Crohn’s Disease and Ulcerative Colitis) that impact the gastrointestinal tract. 25% of people diagnosed with IBD are said to be diagnosed during their childhood and adolescence. Although adolescents are significantly impacted by the diagnosis, families (specifically, parents) are impacted too, and play a crucial role in their adolescents’ lives when diagnosed with IBD. Although parents and families are impacted by the adolescent’s diagnosis, little to no research has explored this area in Malta. Thus, to address this gap, this qualitative study seeks to explore the lived experience of parents of children who were diagnosed with IBD in their adolescence. Semi structured interviews were conducted and analysed using Interpretative Phenomenological Analysis. Key findings highlight how parents are significantly impacted by the diagnosis and encounter several challenges when dealing and adjusting with the illness. Parents pass through this experience with worry and maintain this feeling throughout. This study also reveals that parents are prepared to go to great lengths to ensure optimal care for their adolescents by giving priority to their needs. Findings also demonstrate that since the diagnosis takes place during adolescence, parents navigate through this period with uncertainty while grappling with the challenges of relinquishing control. The study concludes the necessity for parents to receive support to adjust and cope with the experience. This support should include initiatives from policymakers to ensure that health professionals and service providers are well-informed and prepared to support and advocate for families impacted by IBD.