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Sense of Self in Alzheimer’s Research Participants

Author

Listed:
  • Ragnhild Hedman
  • Ingrid Hellström
  • Britt-Marie Ternestedt
  • Görel Hansebo
  • Astrid Norberg

Abstract

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.

Suggested Citation

  • Ragnhild Hedman & Ingrid Hellström & Britt-Marie Ternestedt & Görel Hansebo & Astrid Norberg, 2018. "Sense of Self in Alzheimer’s Research Participants," Clinical Nursing Research, , vol. 27(2), pages 191-212, February.
    • Handle: RePEc:sae:clnure:v:27:y:2018:i:2:p:191-212
    DOI: 10.1177/1054773816672671
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    References listed on IDEAS

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    1. Raisa B Gul & Parveen A Ali, 2010. "Clinical trials: the challenge of recruitment and retention of participants," Journal of Clinical Nursing, John Wiley & Sons, vol. 19(1‐2), pages 227-233, January.
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