caregiving; home health care; communitybased family caregiving


The decision to care is often mandated by unavoidable alterations within the family, requiring a primary caregiver. One population that often requires complex community-based care is survivors of prolonged mechanical ventilation (PMV). This investigation explored the choices and challenges of eight family caregivers of PMV survivors. Using content analysis, several mutually exclusive themes emerged describing the care-giving experience as a physically exhausting, emotionally stressful decision that required a lifestyle change to actualize. Even with the burdensome challenges and overwhelming nature of the care-giving experience, participants identified positive rewards associated with the care-giving role. Home health care nurses are in a unique position to facilitate an effective transition to the care-giving role, serving as conduits for caregiver education and skill acquisition and advocating for the development of vital infrastructures that will provide resources, reassurance, and respite from burdensome care-giving challenges.


Original Citation: Scott, Linda D., and Cynthia Arslanian-Engoren. "The Decision to Care: A Life-Altering Experience." Home Health Care Management & Practice 17, no. 2 (2005): 130-135.