Family caregiving at the end of life: A women’s health issue

Although family members are generally willing to provide care to their ill and dying loved ones, they desire support in their quest to do so. Respite programs, developed to provide family caregivers with needed breaks, are underused (Strang, Koop & Peden, 2002). When used, they often increase rather than relieve anxiety for family caregivers.
Recent work provides clues to why respite programs are underused and why they fail to relieve the stress associated with caregiving. Family caregivers of patients at the end of life report reluctance to be separated from their dying family members as is required by many respite services (Strang et al., 2002). Our research suggests that family caregivers have strategies which they use to provide themselves with brief periods of relief from the stresses of caregiving and to sustain their capacity for giving care (Strang et al., 2002).  

The purpose of this study is to determine the strategies used by family caregivers of persons at the end of life to achieve respite and to determine their recommendations for supportive services. An Interpretive Description design will be used to obtain maximum variation on emerging themes of respite. Thirty bereaved, primary family caregivers will be interviewed to uncover the range of strategies used by family caregivers to achieve respite and their desire for support from health care providers. This research will contribute to the knowledge base regarding respite – both how it is achieved by end-of-life caregivers and how respite can be supported by nurses and other health care providers.

Research Objective

Determine the strategies used by family caregivers to achieve respite while providing care to a dying patient and to determine their recommendations for supportive services.

Team Members

Principal Investigator

>>Priscilla M. Koop, RN, Ph.D.

Associate Professor, Faculty of Nursing, University of Alberta

Co-Investigators

>>Margaret (Marge) A. deJong-Berg, MSW
Research Associate, Department of Human Ecology, Faculty of Nursing, University of Alberta

>>Robin Cohen, Ph.D.
Assistant Professor, Department of Oncology, McGill University
Project Director, Lady Davis Institute

>>Allison Williams, Ph.D.

Associate Professor, School of Geography and Geology, McMaster University

>>Kelli I. Stajduhar, RN, Ph.D.

Associate Professor, School of Nursing and Centre on Aging, University of Victoria

>>Diane Allan, MA

NET Research Associate, Centre on Aging, University of Victoria

Research Assistant

>>Beth Tupula, BA

Undergraduate nursing student, University of Alberta

Funding

Funding for this project has been provided by Canadian Foundation for Women's Health

Length of Project

One year from March 2006 to September 2007

Contact Information

For further information contact: Priscilla Koop

(780) 492-2962