Objective: The number of children surviving in a persistent vegetative state is increasing with advances in medical technology. Caring for a neurologically devastated child presents unique challenges not previously described. Our objective was to gain an understanding of the pediatric nurse's experience of caring for children in a persistent vegetative state.
Design: Qualitative phenomenologic study using in-depth interviews.
Setting: Monitored step-down care unit of an academic children's hospital.
Participants: Eight registered nurses employed at a step-down care unit.
Interventions: None.
Measurements and main results: Nurses in this study described caring for children in a persistent vegetative state as a dynamic process with negative and positive aspects. Six themes emerged from this study: focusing on the parents, delivering sensorially offensive physical care, enduring conflicting emotions, suffering moral distress, finding relief and comfort, and gaining perspective.
Conclusions: Our qualitative study suggests that caring for a child in a persistent vegetative state is difficult. Pediatric nurses described the experience as emotionally stressful and ethically challenging. To cope with the demands of caring for the child in a persistent vegetative state, the nurses in this study modified the traditional concept of the pediatric nurse-patient relationship.