Sense of Self in Alzheimer’s Research Participants

The sense of self is vulnerable in people with Alzheimer’s 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 s...

Full description

Saved in:
Bibliographic Details
Published in:Clinical nursing research 2018-02, Vol.27 (2), p.191-212
Main Authors: Hedman, Ragnhild, Hellström, Ingrid, Ternestedt, Britt-Marie, Hansebo, Görel, Norberg, Astrid
Format: Article
Language:English
Subjects:
Alzheimer's disease
Content analysis
Medical research
Medicin och hälsovetenskap
Nursing
Participation
Research participation
Self
Self awareness
Self esteem
Support group
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:The sense of self is vulnerable in people with Alzheimer’s 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.
ISSN:1054-7738
1552-3799
1552-3799
DOI:10.1177/1054773816672671