Factors influencing family disease management and disease management difficulties in children with congenital gastrointestinal malformations: The roles of caregiver burden, social support, and family function.

BACKGROUND

Children with congenital gastrointestinal malformations often have complex conditions that require long-term treatment and care, which can negatively impact their physical and mental well-being as well as their families, who play a crucial role throughout their treatment and management.

PURPOSE: This study aimed to determine the current state of family disease management, the difficulties in managing disease in children with congenital gastrointestinal malformations, and the associated risk factors.

DESIGN AND

METHODS

This was a cross-sectional descriptive study including 127 family members of children with congenital gastrointestinal malformations. Data were collected using a subscale of the Family Management Measure (FaMM), the Zarit Caregiver Burden Interview, the Feetham Family Functioning Survey (FFFS), and the Perceived Social Support Scale (PSSS).

RESULT: The family disease management and disease management difficulties for children with congenital gastrointestinal malformations were at a moderate level, and caregiver burden was also at a moderate level. Surgical history, family residence, family function, and caregiver burden were the main factors influencing family disease management in the children with Congenital Gastrointestinal Malformations.

CONCLUSION

The family management capacity for children with congenital gastrointestinal malformations needs to be improved. It is multi-influenced by surgical history, family residence, family function, and caregiver burden. Nursing staff should integrate caregiver burden assessment, family function support, and social resources to develop family-centered interventions. Through targeted education, personalized follow-up, and active caregiver engagement in the rehabilitation journey, family management can be facilitated, disease management difficulties reduced, and long-term health outcomes ultimately enhanced.