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.