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Caregiver Contribution to Self-Care in Adults with Inflammatory Bowel Disease: A Cross-Sectional Multicenter Study
Daniele Napolitano1, Alessio Lo Cascio2, Mattia Bozzetti3
1SITRA and Scientific Direction-Fondazione Policlinico Gemelli IRCCS, 00168 Rome, Italy.
Abstract:
Background/Objectives: Inflammatory bowel disease (IBD) requires sustained self-care, yet patients' ability to manage daily treatment and symptoms is often shaped by the support provided by informal caregivers. Methods: Guided by the Middle-Range Theory of Self-Care of Chronic Illness, this multicentre cross-sectional study described caregivers' contributions to self-care maintenance, monitoring, and management in IBD, and compared these contributions between caregivers of patients with Crohn's disease (CD) and those of patients with ulcerative colitis (UC). Results: A convenience sample of 275 caregivers of adult outpatients with IBD was recruited across multiple Italian centres. Caregiver contribution was measured using the Caregiver Contribution to Self-Care of Chronic Illness Inventory, together with caregiver self-efficacy and selected sociodemographic and clinical variables. Caregivers reported substantial involvement across all self-care domains, with significantly higher contributions to self-care maintenance among caregivers of patients with CD than among those caring for patients with UC. Monitoring and management scores were similar across groups. Regression analyses indicated disease-specific patterns, with caregiver gender, education, employment status, and patient clinical characteristics showing differential associations with self-care domains. Conclusions: These findings underscore the central role of caregivers in supporting self-care in IBD and suggest that structured, caregiver-focused approaches embedded in routine clinical pathways may strengthen dyadic chronic illness management.
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