Mapping the Health Management Journey of Patients With Urostomy: A Qualitative Study

The treatment of bladder cancer often involves radical cystectomy and urostomy, which increase survival rates but cause significant physical, psychological and social distress. While existing evidence emphasizes treatment and interventions to improve the quality of life, few studies have explored the continuous health management experience and needs of urostomy patients from diagnosis through recovery.

To construct a journey map of the healthcare management needs of urostomy patients to explore key pain points in their rehabilitation process and provide a reference for continuous health management.

A descriptive qualitative study was conducted. Using purposive sampling, 25 participants who underwent urostomies were recruited from a tertiary hospital in Tianjin, China. Data were collected through semi-structured face-to-face in-depth interviews. Conventional content analysis was used to analyse the data, extract themes and visualize dynamic changes in patient needs via a patient journey map.

The patient journey map delineated four phases and extracted 12 themes. During the screening and diagnosis phases, participants experience symptom distress, information overload and fear of recurrence. The perioperative phase was marked by challenges in symptom management, frustration in learning stoma skills and abrupt transitions in caregiving models. During the transitional adaptation and continuing treatment phases, participants experience survival fatigue due to the dual burden of early complications, chemotherapy reactions and financial pressure. In the long-term self-management phase, participants struggle with cumbersome self-management routines, anxiety about recurrence and barriers to psychosexual and social reintegration. Fortunately, some participants show posttraumatic growth and resilience after urostomy.

The rehabilitation of urostomy patients is a complex process accompanied by information overload, shifts in caregiving and the superimposition of physical and psychological symptoms. Healthcare professionals should prioritize these multidimensional needs across stages, establish an intelligent continuous care platform led by ostomy specialist nurses and be supported by multidisciplinary collaboration.

Healthcare professionals should establish an intelligent, continuous care platform led by ostomy specialist nurses to monitor home-based rehabilitation. The implementation of staged multimodal health education across all disease phases is crucial. Furthermore, clinical practice must actively provide psychosexual counselling, support social reintegration and deliver targeted interventions to alleviate the immense psychological burden on family caregivers.

This study followed the COREQ guidelines for reporting qualitative studies.

No patient or public contribution.