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Sense of Self in Alzheimers Research Participants
Karolinska Inst, Sweden; Ersta Skondal Univ Coll, Sweden.
Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland. Ersta Sköndal Univ Coll, Sweden.ORCID iD: 0000-0001-8007-1770
Karolinska Inst, Sweden; Ersta Sköndal Univ Coll, Sweden.
Karolinska Inst, Sweden; Ersta Skondal Univ Coll, Sweden.
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2018 (English)In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 27, no 2, p. 191-212Article in journal (Refereed) Published
Abstract [en]

The sense of self is vulnerable in people with Alzheimers disease (AD), and might be positively and negatively influenced by research participation. The purpose of this study was to describe how people with AD express their experience of being a research participant with respect to their sense of self. Interviews and support group conversations involving 13 people with mild and moderate AD were analyzed using qualitative content analysis. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks. Participants described contributing to research as being in line with their lifelong values and lifestyles. They expressed contentment and pride about being research participants, emphasized their positive relationships with the researchers, and described participation as a meaningful activity. When research procedures threatened their sense of self, they were able to reason about risks and decline participation.

Place, publisher, year, edition, pages
SAGE PUBLICATIONS INC , 2018. Vol. 27, no 2, p. 191-212
Keywords [en]
Alzheimers disease; research participation; self; support group
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-145122DOI: 10.1177/1054773816672671ISI: 000423586200005PubMedID: 29374986OAI: oai:DiVA.org:liu-145122DiVA, id: diva2:1183669
Note

Funding Agencies|Oscar and Maria Ekman Foundation; Ersta Diakoni; Dementia Association-The National Association for the Rights of the Demented; Swedish Order of St. John; Erling-Persson Family Foundation

Available from: 2018-02-19 Created: 2018-02-19 Last updated: 2021-04-12

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Hellström, Ingrid

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Division of Nursing ScienceFaculty of Medicine and Health SciencesLocal Health Care Services in East Östergötland
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