Illness experience and coping strategies of young adults with inflammatory bowel disease: a qualitative study

To explore the illness experience and coping strategies of young adults with inflammatory bowel disease (IBD) to inform patient management.

20 IBD patients aged 18-29 presenting for outpatient or inpatient treatment at the Gastroenterology Department of a tertiary hospital in Jiangsu Province between September 2023 and January 2024 were identified by purposive and snowball sampling and enrolled. A phenomenological approach was taken, semi-structured interviews conducted and interview data analyzed by Colaizzi's method.

Three themes were identified: (1) complex negative emotions arising from disrupted daily life, restricted self-development, uncertainty and anxiety about the future and conflicts between the desire for independence vs. the reality of dependence, (2) coping strategies that ranged from active coping to passive avoidance and (3) a multi-level need for external support from family, professionals and a wider social network.

Young adults with IBD experience complex negative emotional responses. Active coping strategies may fostered personal development that transcended their pre-illness sense of self in young adults with IBD. The need for multi-level external support was clearly expressed. A patient-centered approach which encourages self-sufficiency and self-management and promotes external support systems is recommended.