2.50
Hdl Handle:
http://hdl.handle.net/10755/158259
Type:
Presentation
Title:
Voices from among the Dying: Protecting a Vulnerable Population
Abstract:
Voices from among the Dying: Protecting a Vulnerable Population
Conference Sponsor:Western Institute of Nursing
Conference Year:2002
Author:Dobratz, Marjorie, RN, DNSc
P.I. Institution Name:University of Washington, Tacoma
Title:Professor
Contact Address:1900 Commerce Street, Box 358421, Tacoma, WA, 98402, USA
Contact Telephone:(253) 692-5676
Problem. As a research population, dying persons are at high risk for morbidity, decreased quality of life, and loss of autonomy. While nurse researchers are at the forefront in describing research issues with other vulnerable populations that include survivors of suicide, groups of refugees, the frail elderly, homeless populations, and mechanically ventilated patients, because of ethical issues and problems with informed consent, they may be reluctant to intrude the "world" of this vulnerable group. The purpose of this study is to describe issues surrounding the protection of human subjects, investigator participation, subjects' experiences, and other influences that impacted ethical decision-making in the planning, consenting, testing, and terminating phases of a research study with vulnerable home hospice subjects. Sample. The sample was 97 home hospice subjects from two metropolitan programs who met these inclusion criterion: 30 years of age of older, English-speaking, intact cognition, and willing consent to participate. Approvals from the sponsoring university and the two health care agencies were secured. Findings. The planning phase involved overcoming methodological issues, access to subjects, securing human subjects approval, agency sponsorship, and establishing trust. The consenting phase involved securing physician approval, initially contacting by telephone with explanation of study, approving home visit and scheduling, granting rights of refusal, and obtaining informed consent. In the testing phase, 28 (28.8%) of the 97 participants gave informed consent, completed testing, but required assistance (reading questions and recording answers) for these reasons: poor vision (n=10), physical weakness (n=10), and other physical handicaps (n=8). During the 14-month investigation, another 16 subjects were lost to the study: unable to give informed consent (n=5), assessed as cognitively impaired (n=5), and evaluated as too physically impaired (n=6). For ethical reasons, some subjects required nursing interventions by the researcher. Conclusion. Although this group of vulnerable subjects required constant monitoring for physical and psychological discomfort, in the terminating phase, they spoke of their gratitude for being able to participate, shared the positive feelings that they felt from "still being useful" and from "still being able to help someone else", and they valued their contributions. Even in their compromised states, they expressed feelings of altruism. Likewise, hospice social workers and nurses gave feedback about the positive benefits of the research project to their patients. The responses of both subjects and health care professionals lead to the conclusion that the benefits of research participation outweighed the risks in this group of vulnerable subjects. Nonetheless, investigations with vulnerable populations are time-consuming and require active participation as well as expertise in nursing practice on the part of researchers.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Western Institute of Nursing

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleVoices from among the Dying: Protecting a Vulnerable Populationen_GB
dc.identifier.urihttp://hdl.handle.net/10755/158259-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Voices from among the Dying: Protecting a Vulnerable Population</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Western Institute of Nursing</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2002</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Dobratz, Marjorie, RN, DNSc</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Washington, Tacoma</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Professor</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">1900 Commerce Street, Box 358421, Tacoma, WA, 98402, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">(253) 692-5676</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">mdobratz@u.washington.edu</td></tr><tr><td colspan="2" class="item-abstract">Problem. As a research population, dying persons are at high risk for morbidity, decreased quality of life, and loss of autonomy. While nurse researchers are at the forefront in describing research issues with other vulnerable populations that include survivors of suicide, groups of refugees, the frail elderly, homeless populations, and mechanically ventilated patients, because of ethical issues and problems with informed consent, they may be reluctant to intrude the &quot;world&quot; of this vulnerable group. The purpose of this study is to describe issues surrounding the protection of human subjects, investigator participation, subjects' experiences, and other influences that impacted ethical decision-making in the planning, consenting, testing, and terminating phases of a research study with vulnerable home hospice subjects. Sample. The sample was 97 home hospice subjects from two metropolitan programs who met these inclusion criterion: 30 years of age of older, English-speaking, intact cognition, and willing consent to participate. Approvals from the sponsoring university and the two health care agencies were secured. Findings. The planning phase involved overcoming methodological issues, access to subjects, securing human subjects approval, agency sponsorship, and establishing trust. The consenting phase involved securing physician approval, initially contacting by telephone with explanation of study, approving home visit and scheduling, granting rights of refusal, and obtaining informed consent. In the testing phase, 28 (28.8%) of the 97 participants gave informed consent, completed testing, but required assistance (reading questions and recording answers) for these reasons: poor vision (n=10), physical weakness (n=10), and other physical handicaps (n=8). During the 14-month investigation, another 16 subjects were lost to the study: unable to give informed consent (n=5), assessed as cognitively impaired (n=5), and evaluated as too physically impaired (n=6). For ethical reasons, some subjects required nursing interventions by the researcher. Conclusion. Although this group of vulnerable subjects required constant monitoring for physical and psychological discomfort, in the terminating phase, they spoke of their gratitude for being able to participate, shared the positive feelings that they felt from &quot;still being useful&quot; and from &quot;still being able to help someone else&quot;, and they valued their contributions. Even in their compromised states, they expressed feelings of altruism. Likewise, hospice social workers and nurses gave feedback about the positive benefits of the research project to their patients. The responses of both subjects and health care professionals lead to the conclusion that the benefits of research participation outweighed the risks in this group of vulnerable subjects. Nonetheless, investigations with vulnerable populations are time-consuming and require active participation as well as expertise in nursing practice on the part of researchers.</td></tr></table>en_GB
dc.date.available2011-10-26T20:40:05Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T20:40:05Z-
dc.description.sponsorshipWestern Institute of Nursingen_GB
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