When uncertainty becomes guilt: The moralisation of home urinary stoma care after bladder cancer surgery in China.

In post-discharge urinary stoma care, family members are often expected not only to perform technical tasks but also to interpret bodily problems and decide when professional help is needed. Existing research has documented caregiver burden, distress, and psychological strain extensively, but less is known about how guilt is produced through family relationships, uncertainty, and moral expectations of care. This study examines how informal caregivers of bladder cancer patients with urinary stomas in China described guilt, self-blame, and uncertainty in home care, and under what conditions uncertainty became morally charged or remained primarily practical. Drawing on semi-structured interviews with 21 family caregivers recruited through a tertiary hospital and analysed using framework analysis, the findings show that caregivers framed urinary stoma care as a moral responsibility tied to protecting the patient's comfort, dignity, and family role. Ordinary care difficulties, including leakage, skin irritation, delayed response, pouch insecurity, and symptom appraisal, became consequential when caregivers interpreted them as evidence of inadequate care. This moralisation was patterned by kinship position and constrained availability, but it was not inevitable. In some accounts, uncertainty remained closer to practical troubleshooting, especially when caregivers had access to professional guidance, reassurance from patients or family members, and direct explanations or follow-up communication from healthcare professionals. The study contributes to research on informal caregiving, uncertainty, moral experience, and home-based care by identifying the relational and interpretive conditions under which caregiver guilt emerged. Supporting family caregivers may therefore require interpretive support that clarifies the boundaries of reasonable family responsibility.