Adaptive digital and non-digital self-management in permanent enterostomy patients: A qualitative study based on the Chronic Illness Trajectory framework.

Abstract

Purpose: To examine the adaptive self-management strategies of enterostomy patients across different health trajectory phases and explore how patients utilize a combination of digital tools and traditional practices to manage their condition effectively within the Chronic Illness Trajectory Framework (CITF).

Methods: Participants were recruited from Qingdao Municipal Hospital's Stoma Clinic between October 2022 and August 2024. A total of 26 adults who had undergone permanent enterostomy surgery at least six months prior were selected through purposeful sampling to capture diverse experiences across different health trajectory phases. Semi-structured interviews were conducted, and data were analyzed using thematic analysis, with saturation reached when no new insights emerged.

Results: Three primary trajectory types emerged: (1) Living with a Stable Enterostomy Condition, where structured routines and preventive practices helped patients maintain health stability; (2) Experiencing Cycles of Deterioration and Recovery, characterized by proactive monitoring and recovery practices, often supported by family and telemedicine; and (3) Responding to Unstable Changes, requiring immediate actions, real-time adjustments, and crisis planning, with patients relying on both wearable monitors and established self-care routines. Across all phases, a balanced use of digital and non-digital methods enhanced adaptability and resilience.

Conclusion: The findings underscore the importance of phase-specific, adaptive self-management strategies that blend digital innovations with foundational self-care practices. CITF offers a valuable framework for clinicians to assess patients' trajectory phases and provide tailored support that aligns with their unique health needs. This approach can promote patient autonomy, improve quality of life, and inform the development of comprehensive, patient-centered care models for enterostomy and other chronic conditions.