Family caregivers, defined as spouses, adult children, and significant others who provide physical, emotional, spiritual and/or social care to individuals unable to provide these functions for themselves, have become an invaluable part of our healthcare system. Caregivers now number more than 27 million and have an annual value of $257 billion for the services they provide. Further, as the U.S. population ages, and as more people elect to stay home to die, the utilization of hospice services for Americans continues to rise. Multiple descriptive studies describe caregiving at end-of-life to be physically and emotionally burdensome for caregivers of patients on hospice. Further studies examined what caregivers wanted at end-of-life, including: 1) information on disease processes, 2) the trajectory of the dying process for their loved one and 3) effective ways to take care of themselves. A systematic search of intervention studies for caregivers of hospice patients produced five studies from the U.S. with varying methodologies and effectiveness. This paucity of studies is alarming since this population is continuing to grow. The proposed feasibility study, End-of-Life Education for Caregivers (ELEC), will focus on the development, testing, and examination of a theory-based intervention directed at giving caregivers of newly admitted hospice patients information about 1) hospice services and comfort care, 2) expected trajectories of disease processes at end-of-life, 3) expected role reactions of caregivers to a change in role focus, 4) education on ways for a caregiver to assist a family member in their new caregiving role in symptom management and other ways of connecting with their family member, and 5) information on ways to decrease role strain for caregivers. Role Theory and the Theory of Self-Regulation will provide a framework for ELEC and will build upon previous research that developed and tested a theory-based intervention for family caregivers of hospitalized elders. The proposed study will test the hypothesis that an intervention (ELEC) to caregivers of newly admitted patients on hospice will decrease levels of anxiety, depression, and role strain and increase preparedness of the caregiver in their new role. This research has the potential to begin a process of knowledge development of effective programs for caregivers of patients on hospice to decrease the risk of morbidity in this population.
| Lindstrom, Kathryn B; Mazurek Melnyk, Bernadette (2013) Feasibility and preliminary effects of an intervention targeting schema development for caregivers of newly admitted hospice patients. J Palliat Med 16:680-5 |
