Purposive and snowball sampling was used to identify IBD patients aged 18–29 years presenting for outpatient or inpatient care at the Gastroenterology Department of a tertiary hospital in Jiangsu Province between September 2023 and January 2024. Eligible patients were recruited in person during their clinic visits. This included 10 patients with ulcerative colitis and 15 with Crohn's disease. Ultimately, 7 patients with ulcerative colitis and 13 patients with Crohn's disease agreed to participate in the study. The primary reasons for patients declined participation included: (1) lack of available time to complete the interview, (2) parental refusal, and (3) in one instance, the patient's active ulcerative colitis symptoms coupled with a stated reluctance to discuss defecation-related issues with individuals outside his care givers. Inclusion criteria were: (1) IBD diagnosis according to established clinical guidelines, (2) in mild to moderate disease activity or remission, disease activity in patients with Crohn's disease was assessed with the short Crohn's Disease Activity Index (CDAI) (13), whereas the Modified Mayo Endoscopic Score (MMES) (14) was used for patients with ulcerative colitis, (3) age 18–29 years, (4) ability to communicate effectively in Chinese with basic comprehension and expression skills. Exclusion criteria were: (1) severe disease leading to heart, brain, lung, kidney or other organ impairment, (2) inability to complete interviews, (3) history or current diagnosis of severe psychiatric disorder, (4) recently diagnosed patients, who disease duration <6 months. Sampling continued until data saturation when 20 participants were enrolled and were assigned codes P1–P20 to ensure anonymity (Table 1). Experiments were performed in accordance with the Declaration of Helsinki (amended 2023). Written informed consent was given by all participants for use and publication of data and ethical approval was granted by the Ethics Committee, the First Affiliated Hospital with Nanjing Medical University (approval number: 2023-SR-881).

The present study reveals that inflammatory bowel disease significantly disrupts the core developmental tasks that define the transition to adulthood. Young adults in our cohort consistently reported that IBD interfered with self-identity exploration, educational attainment, career advancement, and the formation of intimate relationships. This perceived disruption of their expected life trajectory generated substantial psychological distress, characterized by uncertainty about the future and resignation from previously held aspirations. Many participants described their future plans in terms of “don't know” or “uncertain” with some abandoning long-term goals entirely, creating a pronounced gap between pre-illness aspirations and current realities. Concerns about disease inheritance led some to hesitate about pursuing intimate relationships. Young adults also experienced embarrassment caused by diarrhea and pain which impeded social interactions and led to withdrawal and isolation. These findings align with Qualter et al. (18), who similarly documented the profound psychosocial consequences of IBD during young adulthood. This study found that impaired autonomous treatment decision-making, disease management or lack of stable income made many young adults dependent on parents or other caregivers despite their strong desire for independence. This highlights a significant tension for young adult: a particularly salient conflict between the developmental drive for independence and the practical dependencies created by IBD.

The active participation in and assumption of responsibility for disease management is crucial for IBD patients transitioning from pediatric to adult care (19). Our findings suggest that effective support should simultaneously address both medical and developmental needs. This can be achieved through balanced strategies that promote patient autonomy while meeting transitional care requirements—a key consideration for healthcare providers. Such strategies may involve facilitating opportunities for young adults to gradually assume self-care responsibility while ensuring appropriate support from parents and multidisciplinary team.

This study identified distinct coping strategies among young adults with IBD, shaped by their disease experiences and self-perception. Participants who demonstrated robust emotional regulation and maintained confidence in their treatment were more likely to adopt positive coping strategies. These individuals tended to view IBD as a manageable chronic condition which promoted treatment engagement and adherence.

By contrast, patients who had experienced unsatisfactory treatment outcomes or suffered from low confidence tended to adopt passive avoidant coping strategies. This divergence in coping strategies aligns with existing evidence on coping adaptation in chronic illness (7). The association between coping strategies and psychosocial outcomes appears mediated through cognitive-emotional pathways. Passive avoidance may lead to more severe psychological distress in IBD patients whereas active coping may improve mental health and enhance quality of life (20). Thus, actions that foster cognitive shifts also serve to build resilience and facilitate growth beyond their pre-illness state (21).

The experiences of participants who successfully coped suggest that enhancing self-reliance is a pivotal factor associated with active coping, positioning it as a potential critical focus for interventions aimed at preventing avoidance. Education to promote IBD self-management and personalized psychological support has been shown to help patients to reframe illness perception, discover internal resources and strengthen confidence in disease management (22). In addition, IBD charities and peer support were found to encourage positive coping strategies among the current cohort of young adults. Participants' also narratives implied a potential role for clinical healthcare providers in health education, psychological support, and facilitation of peer connections, as part of a comprehensive support system.

This study reveals that coping in young adults with IBD follows contextual and phase-specific patterns, aligning with the findings of Gelech et al. (6). Notably, the use of avoidance coping is heightened during acute disease flares or critical treatment transitions. Consequently, understanding these behaviors necessitates moving beyond reductive classifications of avoidance as uniformly maladaptive. Clinical interventions need distinguish between short-term adaptive withdrawal and entrenched avoidance, and between healthy skepticism and generalized disengagement. The goal is to offer contextualized—not merely categorical—support. Ultimately, a balanced approach that acknowledges the protective role of temporary avoidance, while actively cultivating proactive coping strategies, may more fully honor the complexity of young patients' illness experiences in transition.

Our study found a multi-layered social support ecosystem that significantly influences coping outcomes among young adults with IBD. Participants consistently highlighted four primary support sources: familial relationships, healthcare providers, peer networks, and institutional accommodations from educational/workplace environments.

The centrality of social support aligns with the 2023 priority setting exercise that identified “How to get support to cope with IBD” as a key concern for this population (23). Specifically, patients reporting well-structured support systems demonstrated enhanced treatment adherence and psychological adaptation. Family support has previously been shown to improve treatment adherence, encourage good disease management and promote a healthy psychological state (24, 25). Family health education may be given by HCPs to enhance disease care and emotional support while guiding the young adult towards self-reliance by promoting treatment decision-making and alleviating negative emotions (26, 27). Nurses are appropriate providers of informational support and long-term follow-up, including disease management programs and case management, which may enable patients to cope. Support from peers, patient organizations and schools was found too to mitigate feelings of isolation and helplessness among the current cohort. Thus, integrating structured peer support with school- and community-based adaptations into transitional care emerges as a promising approach. Collectively, the findings affirm the value of a coordinated support system involving multidisciplinary collaboration (28). Ultimately, strengthening these interconnected support layers, as evidenced by the participants who thrived, appears to create sustainable foundations for long-term adaptation.