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Decision-making in family dyads in the context of advanced cancer Open Access


Other title
home care
family dyad decision-making
advanced cancer
family caregiver
Type of item
Degree grantor
University of Alberta
Author or creator
Edwards, Susanna Bouwman
Supervisor and department
Koop, Priscilla (Faculty of Nursing)
Northcott, Herbert (Department of Sociology)
Olson, Karin (Faculty of Nursing)
Examining committee member and department
Neufeld, Anne (Faculty of Nursing)
Howell, Doris (School of Nursing)
Olson, Karin (Faculty of Nursing)
Northcott, Herbert (Department of Sociology)
Koop, Priscilla (Faculty of Nursing)
Faculty of Nursing

Date accepted
Graduation date
Doctor of Philosophy
Degree level
An individual with advanced cancer moves through his or her illness trajectory engaged in an ongoing process of negotiation with the health care system, caregivers, and family members. The ability to maintain control is a key principle upheld in western society, but it may be difficult to do so if cognitive or physical decline occurs during the palliative phase of advanced cancer. Cognitive decline in progressive dementias such as Alzheimer’s disease or AIDS Dementia Complex is often gradual, allowing such individuals and their family members time to reassign responsibilities for illness management that protect the sense of control of the ill family member. When the onset of cognitive decline occurs more quickly, as is often the case in advanced cancer, ill individuals and their family members may not have the luxury of time to incorporate a transition in responsibilities for illness management into their collective decision-making process, leading to a sense on the part of the person with advanced cancer that he or she has lost control. Current understanding of this transition is limited, and thus the qualitative, grounded theory study, “Decision-Making in Family Dyads in the Context of Advanced Cancer” was conducted. Advanced cancer patients (n = 5), family caregivers (n = 3), and bereaved caregivers (n = 9) from palliative home care settings in Ontario were recruited for the study. Purposive and theoretical sampling of participants occurred until saturation was reached. Data collection, coding, and analysis occurred simultaneously. Results indicated that family caregivers who tried to fulfill their dying family member’s wishes often did so at the expense of their own health or finances. The core category Covering captured the strategies caregivers used to enable their family members to die in the manner of his or her choosing. The basic social process Dancing on the Stairs chronicled the stages of the patient-caregiver relationship as they navigated through the grey areas of decision-making in their final months together. The findings may assist health care personnel striving to help individuals with advanced cancer and their family caregivers maintain a sense of control during the palliative phase of an illness.
License granted by Susanna Edwards ( on 2009-09-27T19:38:51Z (GMT): Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of the above terms. The author reserves all other publication and other rights in association with the copyright in the thesis, and except as herein provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.
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