Title

Research participation by older adults at end of life: barriers and solutions

Document Type

Article

Peer Reviewed

1

Publication Date

7-1-2009

Journal, Book or Conference Title

Research in Gerontological Nursing

NLM Title Abbreviation

Res Gerontol Nurs

PubMed ID

20078006

DOI

10.3928/19404921-20090421-05

Abstract

The purpose of this article is to elaborate on barriers to research participation by older adults at end of life. We focus on the hospice setting and classify barriers to research participation into six domains: societal attitudes toward death, research procedures, health care organizations, agency staff, patients' families and caregivers, and patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, and infringements on patient self-determination, as well as potential solutions to these research challenges. Our observation of the complex palliative context includes the realization that a singular change will not have large enough impact on participation. We conclude that, along with the responsibility to expand the research base addressing the needs of dying individuals, there is also a need to understand the challenges of implementing research projects with older adults at end of life.

Keywords

Consumer Participation, Health Services Research, Hospice Care, Research Subject Recruitment, Attitude to Death, Caregivers, Cognition, Family, Health Personnel, Organizations, Research Methodology, Research Subjects

Published Article/Book Citation

The definitive version was published in Research in Gerontological Nursing, 2:3 (2009) pp.162-171. DOI:10.3928/19404921-20090421-05.

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URL

http://ir.uiowa.edu/nursing_pubs/302