Date of Award

2014

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

College

College of Nursing

First Advisor

Elaine J. Amella

Second Advisor

Martina Mueller

Third Advisor

Barbara Edlund

Fourth Advisor

Lynne S. Nemeth

Fifth Advisor

Betty Ferrell

Abstract

Purpose: This dissertation examined the concept and dimensions of suffering in individuals with late stage dementia and the knowledge and perceptions of home health nurses with regard to artificial nutrition and hydration and suffering in individuals with late stage dementia. Design: Using Caron and Bowers' method of dimensional analysis, the concept of suffering in people with late stage dementia was examined. A pilot study was conducted on home health nurses in Western North Carolina to test the reliability of the instrument used in the study, and a mixed methods exploratory study was conducted to measure home health nurses' knowledge and to obtain their beliefs or perceptions on suffering and artificial nutrition and hydration in people with late stage dementia. Conclusion: Suffering is not well defined in the literature and many individuals are considered suffering from the physical domain rather than from a holistic point of view. In individuals with late stage dementia, suffering is difficult to assess or measure due to a lack of purposive language. The perceptions of home health nurses in North Carolina are also reflective of suffering being more in the physical domain. This perception is validated in their discussions during focus group interviews, especially when discussing artificial nutrition and hydration. While most nurses feel that it prolongs life and helps with nutritional status and overall health of individuals with late stage dementia, there is no evidence in the literature that supports these perceptions or beliefs. This dissertation demonstrates that the knowledge, beliefs or perceptions, and attitudes of home health nurses influence their actions and counseling of patients and families when considering artificial nutrition and hydration in individuals with late stage dementia. Clinical Relevance: Demonstrating the nurses lack evidence-based knowledge of suffering and artificial nutrition and hydration supports the need for further education in the clinical arena. This additional information may help facilitate decision-making for families of individuals with late stage dementia.

Rights

All rights reserved. Copyright is held by the author.

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