Constructing and applying a tiered family engagement strategy for managing neurogenic bowel dysfunction in TSCI patients

Background Neurogenic bowel dysfunction (NBD) severely impairs life quality after thoracic spinal cord injury (TSCI). In this 133-patient trial, we evaluated whether a literacy-adaptive, family-centred programme improves outcomes beyond guideline care. Methods In this single-centre, prospective, stratified, randomised controlled trial, 137 T6–T12 TSCI patients and their primary caregivers were assigned to routine follow-up ( n = 69) or a tiered family-engagement intervention matched to caregiver educational level ( n = 68). Primary endpoint was change in NBD score; secondary endpoints were caregiver execution score, Zarit Burden Interview (ZBI) and SF-36. Assessments occurred at discharge, 6 and 12 months (intention-to-treat). Results At 12 months, the intervention group showed a larger mean NBD reduction than controls (3.5 ± 4.8 vs. 2.6 ± 5.2) and greater improvements in execution ( d = 1.55), ZBI ( d = −1.33) and SF-36 ( d = 0.88). Benefits increased step-wise from tertiary- to primary-education strata, with no significant effect among highly educated caregivers. No programme-related adverse events occurred. Conclusion Tailoring NBD management to caregiver literacy yields clinically meaningful, durable gains in bowel function, caregiving competence, burden and patient quality of life, especially when baseline self-efficacy is low. Literacy-stratified discharge pathways should be integrated into rehabilitation practice.