Psychosocial problems arising from home ventilation.

OBJECTIVE: To study psychosocial questions and problems of patients, who are chronically dependent on artificial ventilation, and their families. DESIGN: A total of 38 patients and family members (n = 43) were randomly selected. Several patients (n = 12) received respiratory support by nasal mask; the majority (n = 26) received respiratory support via a tracheotomy tube. Semistructured interviews were conducted. The Visual Analog Scale was also used. The extent to which the illness and chronic respiratory support were experienced as emotionally stressful, both by the patients and family members, was marked, on a scale ranging from 0 (light) to 10 (severe). RESULTS: Differences and similarities in the problems experienced were found among the patients and their families. Particularly in the case of patients receiving respiratory support by tracheostomy ventilation 24 hr/day, emotional stress on the family caregivers increased during the course of years. That the patient should urgently require bronchial suctioning at any moment made caregivers very anxious. However, several patients demonstrated increased skills in survival coping strategies. Despite diverse problems, the patients and their caregivers would elect to receive respiratory support, if the opportunity arose. CONCLUSIONS: In the case of chronically ill patients who receive continuous respiratory support via a tracheotomy tube, there is greater need for psychosocial support. Family members, who must be available 24 hr a day, need psychosocial support, professional home care, and voluntary assistance that have not been previously offered.

[Favorable results of nocturnal nasal positive-pressure ventilation in 64 patients with neuromuscular disorders; 5-year experience]. / Gunstige effecten van nachtelijke nasale positieve-drukbeademing bij 64 patiënten met neuromusculaire aandoeningen; 5 jaar ervaring.

OBJECTIVE: Evaluation of the effectiveness of chronic nightly mechanical ventilation through a nasal mask system in patients with neuromuscular diseases or patients with thorax malformations or COPD. SETTING: Centre for Home Mechanical Ventilation, University Hospital Utrecht. DESIGN: Retrospective study. METHOD: During the period June 1988-May 1993, 64 patients (11-69 years old) were treated with nasal mask ventilation during the night: 37 men (most of whom had Duchenne's disease (18) and 27 women (most of whom had (post-polio) kyphoscoliosis (n = 13). The effects on arterial blood gases were analysed. Complications during use of the nasal mask systems were recorded. RESULTS: The duration of the nasal mask ventilation was 2 to 56 months. Arterial PCO2 and PO2 improved during the night as well as by day during spontaneous respiration. The most common problems were necrosis of the skin of the bridge of the nose, leakage of air through the mouth or insufflation of air into the stomach. After the start of the mechanical ventilation quality of life improved considerably. CONCLUSION: Nasal ventilation at night is sufficient and simple. The installation of a tracheostoma can be postponed or avoided with this non-invasive kind of ventilation.