Children on home mechanical ventilation are a high-risk population. How much do primary caregivers (PC) know about handling unexpected situations with tracheostomies or malfunction of their ventilators? To answer this, we prospectively studied the knowledge of 152 PC (108 parents and 44 nurses), using a 25-question survey regarding emergency situations at home.
Results: their mean score was 20.2 correct answers (81%). However, 96 PC (63%) did not know that the low pressure ventilator alarm would not sound if the tracheostomy tube decannulated while still connected to the ventilator. Seventy-nine PC (52%) failed to understand high pressure alarms sound and mucous plugging. Sixty-six PC (43%) did not know how much power a battery stored after the suction machine was fully charged. Sixty-one PC (40%) did not know when the low pressure or low minute volume alarm sounds. Fifty-six PC (37%) relied on the ventilator alarm to determine the presence of mucous plugs. There were no significant differences in the scores of PC who used continuous flow ventilators, nor in English-speaking PC versus Spanish-speaking PC. The experience of the PC did not make a difference in their knowledge of HMV emergency care. Having professional training did not pose an advantage in the score for nurses. We conclude that most PC had a good understanding of emergency care. We speculate that more in depth education on the technical aspects of ventilator alarms and tracheal mucous plugging may help to reduce or prevent emergencies of children on HMV.