Doing Harm to Alzheimer's Patients and Families in the Name of Quality of Life

2.50
Hdl Handle:
http://hdl.handle.net/10755/153701
Type:
Presentation
Title:
Doing Harm to Alzheimer's Patients and Families in the Name of Quality of Life
Abstract:
Doing Harm to Alzheimer's Patients and Families in the Name of Quality of Life
Conference Sponsor:Sigma Theta Tau International
Conference Year:2003
Conference Date:July 10-12, 2003
Author:Sorrell, Jeanne, DEd
P.I. Institution Name:George Mason University
Title:Associate Professor Nursing
Co-Authors:Pamela R. Cangelosi
Objective: This study sought to enhance understanding of ethical concerns related to quality of life of persons living with Alzheimer's Disease.<P> Design: The phenomenological study used a Heideggerian hermeneutical approach.<P> Population, Sample, Setting, Years: Data were gathered between 2001 and 2002 through snowball sampling and 18 unstructured interviews of persons with Alzheimer's Disease, family caregivers, and professional caregivers. <P> Concept or Variables Studied Together or Intervention and Outcome Variable(s): The study focused on participants' perspectives of quality of life with Alzheimer's Disease. <P> Methods: Data were generated through phenomenological interviews with participants, who responded to the prompt: "Can you tell me about a specific incident that stands out in your mind that describes your quality of life?" Interviews were recorded, transcribed verbatim, and analyzed using a Heideggerian hemeneutical framework<P> Findings: "Creating a Quality of Life through Connected Lives" emerged as a theme. Both patients and caregivers described heart-wrenching decisions they struggled with in the "dailyness" of living with Alzheimer's Disease. Yet, they were able to reframe their vulnerability into an evolving quality of life with shared life narratives.<P> Conclusion: Globally, society places a high value on critical thinking and decision-making, abilities that are greatly diminished in persons with Alzheimer's Disease. Nurses must develop an ethics of dementia that does not attach moral relevance to mental acuity.<P> Implications: Across the globe, nurses may see prolonging life and use of scarce resources as futile if the quality of life of persons with Alzheimer's Disease is deemed to be poor. A key question is, "Given this quality of life, what ought we to do?" Extension of traditional assumptions of “quality of life” in dementia to incorporate “quality of interconnected lives” helps to establish an ethics of respect for the individual experience and its connecting relationships.<P> <!--Abstract 13394 modified by 208.155.75.4 on 11-2-2002--></P></P></P></P></P></P></P></P>
Repository Posting Date:
26-Oct-2011
Date of Publication:
10-Jul-2003
Sponsors:
Sigma Theta Tau International

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleDoing Harm to Alzheimer's Patients and Families in the Name of Quality of Lifeen_GB
dc.identifier.urihttp://hdl.handle.net/10755/153701-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Doing Harm to Alzheimer's Patients and Families in the Name of Quality of Life</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Sigma Theta Tau International</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2003</td></tr><tr class="item-conference-date"><td class="label">Conference Date:</td><td class="value">July 10-12, 2003</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Sorrell, Jeanne, DEd</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">George Mason University</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Associate Professor Nursing</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Pamela R. Cangelosi</td></tr><tr><td colspan="2" class="item-abstract">Objective: This study sought to enhance understanding of ethical concerns related to quality of life of persons living with Alzheimer's Disease.&lt;P&gt; Design: The phenomenological study used a Heideggerian hermeneutical approach.&lt;P&gt; Population, Sample, Setting, Years: Data were gathered between 2001 and 2002 through snowball sampling and 18 unstructured interviews of persons with Alzheimer's Disease, family caregivers, and professional caregivers. &lt;P&gt; Concept or Variables Studied Together or Intervention and Outcome Variable(s): The study focused on participants' perspectives of quality of life with Alzheimer's Disease. &lt;P&gt; Methods: Data were generated through phenomenological interviews with participants, who responded to the prompt: &quot;Can you tell me about a specific incident that stands out in your mind that describes your quality of life?&quot; Interviews were recorded, transcribed verbatim, and analyzed using a Heideggerian hemeneutical framework&lt;P&gt; Findings: &quot;Creating a Quality of Life through Connected Lives&quot; emerged as a theme. Both patients and caregivers described heart-wrenching decisions they struggled with in the &quot;dailyness&quot; of living with Alzheimer's Disease. Yet, they were able to reframe their vulnerability into an evolving quality of life with shared life narratives.&lt;P&gt; Conclusion: Globally, society places a high value on critical thinking and decision-making, abilities that are greatly diminished in persons with Alzheimer's Disease. Nurses must develop an ethics of dementia that does not attach moral relevance to mental acuity.&lt;P&gt; Implications: Across the globe, nurses may see prolonging life and use of scarce resources as futile if the quality of life of persons with Alzheimer's Disease is deemed to be poor. A key question is, &quot;Given this quality of life, what ought we to do?&quot; Extension of traditional assumptions of &ldquo;quality of life&rdquo; in dementia to incorporate &ldquo;quality of interconnected lives&rdquo; helps to establish an ethics of respect for the individual experience and its connecting relationships.&lt;P&gt; &lt;!--Abstract 13394 modified by 208.155.75.4 on 11-2-2002--&gt;&lt;/P&gt;&lt;/P&gt;&lt;/P&gt;&lt;/P&gt;&lt;/P&gt;&lt;/P&gt;&lt;/P&gt;&lt;/P&gt;</td></tr></table>en_GB
dc.date.available2011-10-26T12:27:16Z-
dc.date.issued2003-07-10en_GB
dc.date.accessioned2011-10-26T12:27:16Z-
dc.description.sponsorshipSigma Theta Tau Internationalen_GB
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