Abstract:

Objective To investigate the needs of the main caregivers of patients with spinal cord injury following neurogenic bowel dysfunction to participate in the whole process of intestinal management.

Methods Nine main caregivers of patients with spinal cord injury in Jiangsu Province Hospital from January to December, 2024 were selected with objective sampling method. They were investigated face-to-face semi-structured in-depth interviews, and the data were analyzed, summarized and extracted by Colaizzi 7-step analysis method.

Results Three themes and eight sub-themes were extracted: the needs of professional knowledge and skills standards in intestinal management (lack of intestinal training knowledge, lack of ability to acquire knowledge and different standards of medical institutions); the needs of physical ability and decision making ability participating in intestinal training (lack of participation, single decision-making behavior, excessive dependence on medical personnel); the desire for therapeutic benefits and the needs for building psychological confidence (concerns about the patient's prognosis, overdependence on medication).

Conclusion Clinical medical staff should pay attention to the actual needs and difficulties faced by the main caregivers of patients with neurogenic bowel dysfunction to participate in the entire intestinal management, and construct targeted training programs, strengthen the skills and knowledge training, to enhance their autonomy and responsibility, to achieve the rehabilitation goal better.

Key words: spinal cord injury, neurogenic bowel dysfunction, primary caregiver, whole intestinal management, nurse, qualitative study