Caring for the person receiving ventilatory support at home: care givers' needs and involvement

Little is known of the needs of family members who provide home care to persons receiving ventilatory support (VS). In a structured interview of 44 care givers of 29 persons receiving VS, finances, provisions for emergencies, information, family relationships, and continuity of care were ranked as the most important needs. Needs for support services were ranked highest in importance to the care givers of persons receiving continuous VS, care givers who did not live in, and children of persons receiving VS. Parents of persons receiving VS ranked educational needs and attention to other family members of highest importance. Handling emergencies was most important to less experienced care givers, whereas financial and respite needs were more important to experienced and full-time care givers. Findings suggest the need for early participation of community health care professionals in care giver preparation, negotiations with third-party payers, 24-hour support services, information networks, and long-term, comprehensive coverage of services.