The University of Massachusetts Amherst

Understanding Sleep and Fatigue Characteristics of EOL Caregivers: A Mixed-Method Case Comparison Study

Date Funded: 
Feb 1, 2021
Funding Organization: 
UManage Center for Building the Science of Symptom Self-Management, through the National Institute of Nursing Research

The specific aims of Dr Hyeyoung Park's UManage Center Pilot Project are to 1) explore the characteristics of end-of-life (EOL) caregivers' sleep and activity, 2) explore the characteristics of EOL caregivers' fatigue levels, 3) investigate the self-management strategies for sleep and fatigue among EOL caregivers. The project will use a mixed-method approach to provide subjective and objective data regarding the activity, sleep patterns, and experience of fatigue among EOL caregivers.

As more terminally ill people wish to die at home, the role of informal EOL caregivers becomes more vital in EOL care. EOL caregivers carry out substantive caregiving tasks, including symptom assessment and pain management. Exploring ways to support the functioning of EOL caregivers, including supporting sleep and reducing fatigue, will support both the EOL caregivers and the dying individuals. Sleep is a complex phenomenon involving an interplay of internal and external factors that cannot be removed or separated from the context in which it occurs. Our case study approach will provide a holistic view and rich description of the phenomenon within the real-world context. Findings from this case study will provide a strong basis for developing an adaptive intervention to improve EOL caregivers' sleep and reduce fatigue, which will help them fulfill their caregiving responsibilities while maintaining their own quality of life.

Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number P20NR016599. The content is solely the responsibility of the authors and does not necessarily represent the official view of the National Institutes of Health.