Tracheostomy caregivers

Rossi Ferrario S, Zotti AM, Zaccaria S, et al. Caregiver strain associated with tracheostomy in chronic respiratory failure. Chest 2001 119 1498-1502. 

Severe disability was a usual outcome for ALS patients who used LTMV for two to five years or more. Although suctioning of the tracheostomy increased the burden and intensity of home care (2), most family caregivers reported that slow communication and immobility were the primaiy factors in the burden of care, rather than caring for the tracheostomy. 

On the basis of close observation, most family caregivers provided meticulous care, usually as good as hired nurses (2). Initially, family caregivers were trained on tracheostomy care and were supervised by a registered nurse. Most school-age children and teens assisted with care. Older children usually provided tracheostomy care (2,9), while younger children were often educated on intervening in the event of an emergency. 

During the 1970s, more patients with respiratory failure due to neuromuscular disorders and chest wall deformities received long-term ventilatory assistance at home, either via tracheostomy or body ventilators, which provided effective nocturnal noninvasive ventilation (NIV) (5,6). In the 1970s, the development of home respiratory therapy companies improved support for home mechanical ventilation (HMV). Respiratory therapists could now set up ventilatory equipment, educate the patient and caregivers about using the equipment, and be available to deal with problems. 

NIV is not always preferred to tracheostomy ventilation. If patients lose their ability to protect their airway or if they develop vocal cord paralysis, invasive mechanical ventilation may be preferred, although some patients with severe impairment of speech and swallowing still respond favorably to NIV (32). Some patients feel more secure with invasive ventilation because of direct access for secretion clearance (4). Both approaches require skilled and dedicated caregivers, hut many patients requiring continuous ventilatory support elect for tracheostomy ventilation unless they are closely managed by a highly skilled team, staffed and experienced in NTV for patients with no ventilator-free time. 

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