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Radical cystectomy remains the standard of care for muscle-invasive bladder cancer and high-risk non-muscle-invasive bladder cancer. Postoperative ostomy education is common, but patients struggle to maintain self-management practices. A preoperative ostomy education program was developed to meet this need, and we conducted a qualitative study with participating patient-caregiver dyads to evaluate the educational and psychosocial impacts of the program and examine alignment with program objectives.    Materials and methods  A qualitative descriptive study was conducted utilizing a thematic analysis approach. Sixteen patients, eighteen caregivers, and three program educators completed semi-structured interviews from 3 to 18 months post the program. Interviews were audio-recorded and transcribed. Thirteen end-of-course surveys from the initial educational program cohort were transcribed, coded, analyzed; this data was triangulated with patient, caregiver, and educator interviews.    Results  Analysis uncovered three themes: (1) Patient and caregiver motivation to attend the program, (2) attitudes toward this life-changing event, and (3) education. For theme 1, patients and caregivers cited lack of knowledge, fear, and concern about ostomy surgery and care as motivation. For theme 2, there were a variety of attitudes toward the ostomy, ranging from avoidance to acceptance, and a similar breadth of attitudes toward caregiving, with some patients and caregivers describing ongoing dependence and other patients seeking complete independence. For theme 3, the interactive curriculum was determined to be effective, and the patient advocate was cited as the most memorable program component.    Conclusions  A formal preoperative ostomy education program employing an interactive educational approach and featuring a patient advocate can prepare bladder cancer patients and caregivers for ostomy self-management and post-ostomy life.

A qualitative evaluation of a nurse-led pre-operative stoma education program for bladder cancer patients