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Home Health Care Management & Practice
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The Decision to Care: A Life-Altering Experience

Linda D. Scott, PhD, RN

Grand Valley State University in Grand Rapids, Michigan

Cynthia Arslanian-Engoren, PhD, RN, CNS

University of Michigan

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 caregiving 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 caregiving experience, participants identified positive rewards associated with the caregiving role. Home health care nurses are in a unique position to facilitate an effective transition to the caregiving 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 caregiving challenges.

Key Words: caregiving • home health care • community-based family caregiving

Home Health Care Management & Practice, Vol. 17, No. 2, 130-135 (2005)
DOI: 10.1177/1084822304270021
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