Adolescents' and young adults' lived experience of living with IBD and an ostomy

Abstract

According to the Crohn’s and Colitis Foundation of Canada, there is approximately 1 in every 200 individuals who is living with inflammatory bowel disease (IBD). Many of those living with IBD also need to have an ostomy. The literature on the effects IBD and an ostomy has on adolescents and young adults lacks consensus. Therefore, the purpose of this phenomenological study was to try to understand the lived experiences of adolescents and young adults (N=6) living with IBD and an ostomy. Sociodemographic information was collected, and the participants were interviewed in person using a semi-structured interview guide. The work of van Manen (1990) was used as a guide for data collection, analysis and interpretation of this study. Analysis revealed the essence of the adolescents’ and young adults’ lived experience as being “Concealing and Revealing the Self”. Three themes communicate the essence of their lived experience: (a) Uneasy feelings, (b) “It’s hard…”, and (c) A renewed sense of self. The needs of the adolescents and young adults, along with their recommendations to health care providers, are addressed. The study findings inform nurses in the areas of practice, education and research. Practice recommendations include being cognizant that these individuals need holistic care that addresses their psychological, psychosocial and physical needs. This study forms the basis for future research to explore some of the themes in greater detail, as well as a recommendation for a longitudinal study.