community-based family caregiving, complex care, home health care, prolonged mechanical ventilation


Approximately 54 million adults in the United States are involved in some form of family care-giving, with 15% of these individuals providing complex care in their homes. Therefore, it is essential to identify the nuances associated with complex community-based family care-giving. This study investigated family caregivers’ perceptions of caring for individuals who survived tracheostomy for prolonged mechanical ventilation. Using a quantitative approach, family caregivers (n = 15) reported that they were somewhat prepared for this experience. The findings suggested that family caregivers experience considerable physical and psychological effects throughout their care-giving careers. Despite physical and mental health challenges, the caregivers were able to derive personal gratification from complex care provision. The challenge before home care nurses is to prepare family members for their newly acquired care-giving roles, implement interventions that support their physical and mental well-being, and facilitate the engagement in health-promoting behaviors.


Original Citation: Scott, Linda D., and Cynthia Arslanian-Engoren. "Caring for Survivors of Prolonged Mechanical Ventilation." Home Health Care Management & Practice 14, no. 2 (2002): 122-128.