The silent struggle of family caregivers of in-home palliative care patients
Date
1997
Authors
Jacques, Vicki Joanne
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Abstract
Since the l 980's, against a backdrop of a need to contain health care costs, there has been an ever increasing shift to providing health care services in the home and a resultant increase in in-home palliative care.
The guiding question for this study was to describe how the Closer to Home policies affect caregivers in their everyday work of providing care in a home setting. A case study design was employed. This design was selected to support a desire to learn from the family caregiver's perspective. Four family caregivers were interviewed and asked to describe their everyday experiences of facilitating in-home palliative care. The interviews provided the primary data source for the study. Other data sources drawn on to contextualize the analysis were: the Capital Health Region patient health file, my knowledge of Home Nursing Care services, the history of home care and palliative care services.
Four major themes emerged from the data. Descriptions of these themes contribute to an understanding of caregiver burden by "limiting generalization" (Stake, I 995). Closer to Home policies are presented in the thesis as generalizations about in-home palliative care. The four major themes emerging from the data, the constant, heavy demands of the caregiving role, role shifts and reversals, the caregiver's narrowing world and a change in the patient's character, specify what the experience of caring for a spouse or friend is like. The strength of case study design is in it's effect on generalizations found in policies such as the Closer to Home policies. Implications for policy development that attend to specific client experiences are addressed in the recommendations section of the thesis.