A post-discharge homecare journey map for patients with colorectal cancer living with a permanent stoma: A qualitative study.

OBJECTIVE

To develop a stage-based post-discharge homecare journey map for patients with colorectal cancer living with a permanent stoma, integrating patient-caregiver dynamics to inform digitally supported nursing interventions.

METHODS

A qualitative study was conducted using semi-structured interviews with 15 patients aged 18-59 years, 6 informal caregivers, and 4 stoma nurses. Patient diaries and photo-elicitation were used as supplementary data sources. Data were analyzed using a framework approach informed by the Chronic Care Model and the Theoretical Domains Framework. Two rounds of Delphi consultation with 8 multidisciplinary experts were undertaken to refine the structure and content of the journey map.

RESULTS

Five sequential phases of the post-discharge homecare journey were identified: Home Transition, Early Adaptation, Late Adjustment, Chronic Challenge, and Stabilization. Across phases, participants described fluctuating emotional responses, strong bidirectional influences between patients and caregivers, variable engagement with digital resources, and discrepancies between perceived and actual self-management capacity. Key critical events-such as stoma leakage, concerns about public exposure, and caregiver-patient conflict-frequently triggered setbacks in recovery and reduced self-care confidence.

CONCLUSIONS

The proposed journey map provides a structured, stage-based framework for understanding post-discharge homecare experiences. It offers a conceptual foundation for developing personalized, digitally supported nursing interventions that address emotional needs, dyadic interactions, and disparities in health and digital literacy.