Adaptation in families with a member requiring mechanical ventilation at home

Current health care trends indicate that ventilator-dependent patients increasingly will be discharged to home after shorter hospitalizations. The purpose of this study was to determine how care givers adapt to having ventilator-dependent adults at home. Twenty families were interviewed in their homes by using an eight-question semistructured interview guide. The Roy model was used as a framework to analyze these data. Two instruments, the Family Coping Scale (F-COPES) and the Family APGAR, were administered to measure family coping and function. Patients, aged 18 to 74 years, required 24-hour (n = 9), 12- to 15-hour (n = 5), or 8- to 12-hour (n = 6) home ventilatory support and had neuromuscular or trauma-related diagnoses. Months receiving ventilation ranged from 2 to 312. Care givers, aged 20 to 74 years, were all relatives. Six care givers reported using support services outside their extended family. F-COPES scores fell within national norms whether the patient required 24-hour or less ventilation. Family APGAR results revealed satisfaction with overall family function although scores decreased over time. Interview data indicated that essential knowledge and skills are taught but additional information is desired. Both positive and negative responses to care giving were identified, with the majority of responses being concerned with role mastery, self-concept, and dependency issues. Positive themes in the interviews reflected confidence in ventilator care, satisfaction with the decision to care for their family member at home, and improved quality of life. Negative themes in the interviews reflected the burden of care giving, the dependence of the patient on the care giver, resentment, and hopelessness.(ABSTRACT TRUNCATED AT 250 WORDS)