Paper
Monday, November 14, 2005
This presentation is part of : Family Caregivers: Living with Uncertainty Through the End-of-Life
The nursing imperative: Intervening to support caregivers through times of uncertainty
Judith E. Hupcey, EdD, Janice Penrod, PhD, and Melinda Steis, MS. School of Nursing, The Pennsylvania State University, Hershey, PA, USA

The conceptual work in uncertainty and understanding caregiving trajectories serve as the basis for understanding interventions that may be employed to ease caregiver uncertainty. In this paper, the conceptual understanding of the end of life care giving phenomenon is further developed through the introduction of the typical flow of services received across the trajectory. This discussion highlights how fragmented the care delivery system becomes as the care unit (i.e., caregiver and care recipient) transitions from primary or specialty care to palliative or hospice care. These transitions further the potential sources of uncertainty as the caregiver learns to negotiate new systems of care during peak times of transition into new role functions. Through this exploration, the need for nurse clinicians in all settings to be better prepared to support family caregivers through this journey of care is built. The conceptual components of uncertainty coupled with an understanding of the caregiving trajectory provides a framework for clear demarcations in the trajectory that mark the path for phase-specific interventions to support the caregivers in their journey of care through the end of life and ultimately, through establishing a new relationship with their deceased loved one as they rebuild a new state of normalcy without the family members' presence. Nurses are the most consistent care providers across the delivery system. We must do more to support our partners in care: the family caregiver.